Our Sweet "Heart"

Catch Up

2012-01-01T08:33:00.000-08:00

It's been a busy few months since we last posted, but there have been good things going on with our little Mad Man!

Maddox and I traveled to Boston in October, a week before his second birthday, for his first follow-up visit since we left when he was two months old. We had two full days of traveling to and from and two full days of appointments at the children's hospital. It was a whirlwind trip, especially since I was 11 weeks along with our fifth baby. But it was a trip full of good news and good information. We were anticipating the news that Maddox would be needing open heart surgery this year, but after having a sedated echo, Mad's cardiologist, Dr. Tworetzky, was thrilled with how his heart looked. Obviously it is not a normal heart, but all leakage is in the mild range and could potentially last for quite a while as it is. His homograft will need replaced at some point, and his mitral valve will need repaired/replaced eventually, but nothing needs done right now. This is a tremendous blessing, especially since we were trying to plan how to have surgery around having a new baby. I was feeling stressed about the possibility of spending months in Boston with Maddox and delivering our next baby there while Maddox recovered from surgery. It was not an ideal prospect, but I'm sure we would have survived if that was what was necessary. Thankfully, it doesn't appear to be what will happen and we are thrilled.

Also while in Boston we met with a GI doctor, a dietitian, and spent three hours doing tests to see where Maddox is developmentally. We didn't get any new information from GI or the dietitian and are just keeping with our current feeding program:carnation instant breakfast, whole milk, 1100-1200 calories per day through the g-tube. The news from the neuro-developmental screening came back positive overall and showed that Maddox is in the average range for everything but gross motor. They recommended we get him back into physical therapy(he'd been discharged over the summer). He is definitely making progress and catching up developmentally, but has areas we are working on. Mostly right now we just let him play and run around like a normal kid. He loves being outside, reading stories, playing with cars, trains, spider man, iron man, balls, wrestling, watching movies, singing, coloring/drawing, making messes, taking baths, climbing stools, stairs, ladders, etc... He is your average crazy two year old. (By the way, we took ZERO pictures of his birthday. There was no cake, no candle to blow out, and one measly little gift. I did hang a birthday banner because the older kids were appalled at our lack of celebrating. How's that for being a great mom. Sorry Maddox. Hopefully I'll redeem myself when you turn three).

Maddox admiring his "precious" as we wait outside the temple after

Aunt Ashlie and Uncle Cade's wedding.

We started growth hormones in November and obviously Maddox is less than thrilled about getting a shot every day. Jeff and I are getting used to giving them and alternate days between holding and sticking. We rotate around Maddox body so that he receives the shot in a different spot every day. Right now we use his bum and his thighs. He is constantly bruised, but hopefully it will be worth it and help him grow. We should know if it's working after six months of use.

Christmas spider man pajamas--the kid is obsessed

Maddox is too old this winter for insurance to cover the synagis shots that protect against RSV and so we are trying really hard to be careful and avoid crowds, especially in enclosed places like church. He has had a cold for months off and on, but so far nothing major yet(knock on wood). I have heard horror stories about kids ending up in the hospital multiple times the first winter they don't get the shots and I would much rather avoid that if possible. Hand sanitizer and avoiding people is our best bet. I am hopeful that there will come a time when we can be less reclusive during the winter, but at this point it's not worth it.

we made special allowances and took Maddox to church for one hour on Christmas

so we could go as a whole family as opposed to our usual one-parent-on-one parent-off approach.

Maddox is still trying to decide how he feels about eating. His reluctance doesn't really make a whole lot of sense, but I am sure that at some point he'll figure it out. He asks for water all day long and will drink it by the cupful. He asks for chips, crackers, croutons, m&m's, a bite of this and that, apples, carrots, cookies, milk, etc... He'll suck on whatever it is, chew it, hold it in his mouth for several minutes and then spit it out. Very little but fluids make it all the way down. He'll climb up a step stool in the pantry and dig a chip out of a bag, but he doesn't do much more than carry it around. So, we just continue to work with his OT on sensory and feeding therapy and try not to stress about it. I would love for the g-tube to be gone by the time he goes to school, but hopefully by then he'll at least be capable of pushing a syringe of milk into his stomach at lunch time if he can't eat a peanut butter and jelly sandwich. He could be the talk of the cafeteria!!

...kind of a funny story about the g-tube...on Halloween Mad stayed home with me to hand out candy to all the little trick-or-treat-ers while Jeff took the older kids out to beg for candy. Maddox has a bad habit 0f lifting his shirt up all the time as he walks around the house and even out in public -not a big deal, but gets some funny looks. Well, we had a group of about 6 cute little girls come to the door and while I was handing out candy they were all oohing and aahing over Maddox, saying how cute he was. And then suddenly, we had our own little house of horror as Maddox lifted his shirt and exposed scars and a foreign apparatus hanging out of the side of his stomach. The girls' smiles vanished and with looks of terror they turned and bolted to the safety of their parents waiting on the sidewalk. I chuckled for a while and Maddox, completely unaware of his charm went about his business until the next unsuspecting trick-or-treat-ers came to the door. Good times!! We forget how abnormal our normal is to most people and sometimes we just have to laugh!

Maddox as Charlie Chaplin for Halloween!

The hat is a bowl that he wears on his head all the time. That gave us the idea, so we painted the hat black

and put him in a suit and gave him a mustache--cutest Charlie impersonator ever!!

-taken at night with a phone so it's grainy-

Well, that's what Maddox has been up to.

We are excited to start a new year and are hopeful that things will continue to get better and better for him. He is such a blessing. He is going to be such a special big brother.

He has already taught our family so much and is such a joy to have around. He just lights up a room with his smile and enormous personality. He is so full of life and we marvel every day that he is here and a living part of our family.

We sure love our little Miracle Maddox!

22.75 months

2011-09-08T20:03:00.000-07:00

The big news of the month is that Mad gained 1lb 4oz, and 5/8 inches

in the past 30 days!!!!

This is huge for him, and ironically enough he did it without the growth hormones that we have been waiting all month to get. I don't think he has ever gained so much so quickly, at least not in the past year. We recently started whole milk and carnation instant breakfast for his food and have gone up from 900 cal/day to 1100 cal/day. Apparently it is working. Our theory that the vomiting and retching is mostly in his head and due to his sensory issues seems to be correct, as changing him over from formula with all the proteins broken down to normal cow's milk, has not caused any increase or change in the throwing up. It has also made Jeff and I feel like we have won the lottery -the current food being SO MUCH CHEAPER!!

Maddox has gotten over his fear of grass, and can now be found running around outside with the big kids. He is always on the go and is always saying, "GO!! GO!!" He loves getting in the car to go somewhere or just making a run for it every time the front door is opened. He goes to bed late, wakes up early and aside from the two hour nap he usually takes (on the floor wherever he drops) he is going, going, going. Yes, he won't nap in his bed anymore so we've gotten in the bad habit of just letting him go to sleep wherever his narcoleptic tendency kicks in. Seriously this kid is out in half a second, mid-conversation with you. It is kind of funny. He has fallen asleep on the tile floor many a time, but he typically sleeps on the floor in the family room regardless of the noise and children hopping over him. Crazy kid.

Maddox is really into Spider Man right now and walks around trying to sing the theme song. He asks for his spider man toy by name and is thrilled when he finds the Spider Man coloring book, or pieces to the super hero memory game. He's a big fan of the man who "does whatever a spider can." He also loves Sheriff Woody. We have two, and he is sure to tell anyone who tries to play with one whose it is. "MINE!" The kid is not very good at sharing...yet. He loves cars and balls and legos, though he is always pulling off the lego men's heads. Typical boy.

We had a cardiology appointment yesterday and Maddox was very pleasant. It was a new experience. He was still and quiet through is echo(he was watching a movie) and let Dr. Allender and Nurse Melynda hold him and even gave Dr. Allender a kiss on the cheek. We learned that heart surgery is a definite in the next year. We knew it was coming, but it definitely gave me a reality check. I want to be optimistic and say that Mad will fly through this next surgery like a champ and we'll be home in two weeks and return to our happy normal lives. This is definitely possible, but I've seen too much to think that it is the norm. I am nervous and honestly broken- hearted when I think about being separated from the kids and Jeff for any length of time. I honestly think that first year has scarred me in ways that I don't care to admit and I worry about going through it again and stressing about the ways it affects the other kids. Oh well. It's not something I have much control over, so I guess we'll worry about it as it gets closer.

Maddox and I are heading to Boston in October for a few days for some follow-up appointments, which is great timing given our current timeline for surgery. I am excited to get their view of things and to have his doctors there see him. We are going right before his 2nd birthday so that we only have to pay for one ticket. Somehow it always seems to come down to money. You'd think we'd be over that by now. haha! Maddox and I will be riding the subway and walking and pretending to fit in in Boston. I'm excited to be in the northeast for such a beautiful time of year, especially after the intense summer we have had in Texas this year. Maddox and I will likely freeze, but maybe I'll just have to go shopping to make sure we are outfitted for the nice cool weather!

Maddox is a joy to have in our family. I tease that he is a punk and he is, but he HAS to be feisty and determined to survive, so I can't blame him. He has such a fun and happy personality and deals with the less pleasant things very well. I admire this little man and his fighting yet loving spirit. He is a wonderful example to our family and I couldn't be more proud of him.

Oh, the joys...

2011-08-30T11:04:00.001-07:00

...A day in the life of Maddox's mother.

...sitting at Tracen's karate class, Mad's g-button gets pulled out, delightful smelling stomach contents leak all over himself and the floor, random people look on in horror, I try to stanch the flow of juices streaming from the stoma in my baby's gut, realize we don't have what we need to get the g-button back in, open the door in the glass wall through which we watch Tracen, and tell him we have to leave right now - it's the middle of the class and we were late to begin with - try to wipe up the curdled milk all over the floor before racing out the door and down the elevator to the car so we can drive home to shove a piece of life-saving plastic back into my baby's little body.

It's such fun to leave shocked people behind wherever we go. I just hope they aren't cursing my name for the stench of vomit we left behind. I guess I'll find out when I see all those mothers next week at karate class.

- Posted using BlogPress from my iPhone

Months 20 and 21

2011-07-31T21:42:00.000-07:00

The months are all running together around here and so once again I have skipped one. We were on a two week vacation to California and Utah when Maddox turned 20 months, and have been dealing with illness of one kind or another since returning home, darn it. Isn't it summer? Some of us came home sick from our trip and then that illness morphed into walking pneumonia. Maddox narrowly escaped a trip to the hospital and is now, after almost a month, still coughing and wheezing very occasionally, but overall doing much better. Keyan, Tracen and I are now on antibiotics to restore us to health. It's been a LONG month.

Maddox did well for the two weeks of our trip, five days and 3700 miles of which were spent in the car. He was still riding in his infant car seat because the kid is not growing and still weighs 19 lbs, which led to him being pretty uncomfortable for a good portion of the trip. Thankfully he only complained loudly upon occasion. We went to visit our friends the Wunderlis and the O'Verys and have our "Wundovixon" vacation in Southern California. We had a great time and Maddox enjoyed interacting with lots of kids and walking everywhere. He wasn't a big fan of the beach, or the splash park, but loved exploring everything at the children's museum. It was so fun to watch his little curious self.

Then we drove to Utah to visit Grandma and Grandpa Dixon, Aunts, Uncles, and cousins. We had a wonderful time. Grandma bought all the kids squirt guns and Maddox made shooting sounds when he aimed and then would fall dramatically to the side and moan as if he'd been hit. HILARIOUS!! We also went to the zoo, had a fun day at the park with lots of extended family, played games, ate good food, and had a great time. Maddox practiced going up and down a short flight of stairs at Grandma's house and continued to perfect his walking.
(Sorry about the pics, the collage program was cutting parts of pictures off, which is why some of my favorite family members are missing from the big Dixon group shot below. Sorry Beth and Ada. Love you.)

Maddox is now in the adorable habit of kissing everyone. We LOVE it!!! He'll kiss whatever body part is closest. Sometimes I'm not quick enough to keep him from kissing our dirty, sweaty feet. Unfortunately he doesn't seem to mind. It is seriously one of my favorite things to see him pucker those little lips of his. He can really be so charming. He is cuddly and affectionate, tries to make us laugh, and is happy even when he's sick. He coughs and retches until he's purple in the face and gasping, and then with his next breath he says, "hi" and smiles and then gives a kiss. It amazes me every time. And yet the kid can pout like anything. He sticks that bottom lip out, droops his shoulders and will hang his head back, looking up at the ceiling or look down, depending on the day, and walk slowly and dejectedly away if he doesn't get what he wants. And watch out if you make him really mad, he will let you have it. He will glare, then start swinging. He hits and throws things and yells. It is hysterical because he's so little, but maybe a little frightening to see how intense he is already. He cracks me up. He gets his feelings hurt when he gets in trouble and sometimes I am surprised at how mature his reactions are to certain things. It gives me comfort though to see everything that is going on in his mind and that he has appropriate responses and understands a lot of social cues.

Mad is mimicking us more and more. He is communicating with words and through any other means he can. He signs a couple of words, points, gestures, and generally gets his point across rather well. He loves to play with cars, balls, and star wars action figures. He definitely fits in with the boys. He loves to wrestle and chase and be chased. He loves music and has started singing to himself. He also LOVES to dance!! It is too cute. He has great rhythm and claps, bounces, spins, sways...the kids just loves to move to the music. We have quite a few dance parties at our house with all the kids and they all love it. Great memories.

Maddox has a quite the little sense of humor and really enjoys making us laugh. He plays the class clown and just loves to ham it up for us. He has also starting laughing at his own flatulence, so yes, the potty humor is already alive and well.

Maddox has completed his physical therapy and is essentially caught up with his gross motor skills, or enough so that he no longer qualifies for therapy. We are thrilled to have reached this amazing milestone!! Quite the accomplishment for our determined little man.

He still qualifies for the occupational therapy due to his feeding issues. Maddox still loves to drink water out of any cup, straw, water bottle, and also likes root beer, which we have for pizza and movie nights, but other than that he continues to pretend to eat. He plays with forks and spoons and puts them into his mouth, but only without food on them. He will pick up little crumbs of food -crackers and such- off the floor and nibble and even swallow minuscule pieces sometimes, but nothing to help with caloric intake. We have stopped our attempts to wean him from the tube in an effort to just get him to grow. In order to start the growth hormones he has to have sufficient calories for growth. Right now he is getting 900 calories a day through his g-button. He has grown a tiny bit length wise, but has been 19 pounds for NINE MONTHS!! Pretty discouraging. He's the size of your average 9 month old. So, we have even had to start a drip(continuous pump) for part of the night to be able to get all the calories into him. It's been difficult, especially with him being so ill and coughing so hard, to keep him from throwing his feeds back up during the day. He handles it just fine when he is asleep, but going back to a nighttime drip is a big step backwards. Any sort of growth would make it completely worthwhile, so we will do it until he can handle it all during the day again.

The paper work for the growth hormones has been completed and we are waiting to hear if our insurance will cover it. Mad's endocrinologist said we will do a 6 month trial with the growth hormones, and if we don't see much improvement then we're done. I want him to have as normal a life as possible, so I'm praying that the shots do what they are intended to do.

Things have been stable from a cardiac stand point. We go back to the cardiologist again in September. We are on an every three months schedule still, which I like. Too much time between check-ups makes me nervous. Maddox is getting slightly better about going to the doctor, which means he isn't screaming the whole time anymore, and has even smiled and waved goodbye to the doctor. Baby steps. I'll take it.

Well, that's Mad. He's trouble with a capital "T" sometimes, but everyday I'm so happy he's here. He is such a love and he's mine!!

19 Months

2011-05-27T19:40:00.000-07:00

Maddox is ...

WALKING!!!!!

Well, maybe "taking steps" is more accurate, but either way we are beyond excited!!

It is adorable to see his tiny little legs and tiny feet toddle around.

Maddox is doing very well and we are so grateful.

He is making good progress with feeding and we have started to ween him from the g-tube. He is tolerating more food in his mouth and isn't gagging on it, though he usually just moves it around his mouth for a little while and then spits it out.

At least that is what he does with anything solid. He is much better with liquids. Water is his favorite, but unfortunately doesn't really boast many calories. He enjoys spending time in his high chair playing and tasting and making messes. It is so fun to see him doing such "normal" stuff. I love it!! He still weighs 19 lbs and hasn't grown much in length, but he is getting good calories from the g-tube, and catching up developmentally.

His personality is so fun! He really likes to make people laugh, snuggle, tickle, and just play.

We are enjoying this phase with him so much. He is still the most determined and stubborn little guy, but so endearing and just makes us so happy. He is curious and into EVERYTHING! His mind is definitely working. I just love watching him figure things out.

He communicates using various means, but is putting more and more sounds together and mimicking us more as well. When you don't use your mouth to eat, learning to use it to speak is a challenge. There is an incredible amount of coordination and muscle used to move your tongue and lips and eating really works those. It is understandable for him to take a while to figure out how to talk, but we are encouraged by all that he is doing. He is still extremely attached to his pacifier and likes to go to bed with two. I have watched him hold one in each hand, put one in his mouth for a few sucks and then switch, all in his sleep. He is a little obsessed but it works the muscles in his mouth and provides a great amount of comfort to him so the binky is staying. We'll deal with the orthodontic ramifications a little later.

Maddox went to the pool for the first time this week, and I think he liked it. He was reserved in his praise, but I know that if he hadn't liked it he would have made it known. We rarely went to the pool all together last summer due to Maddox being much more fragile and on oxygen so much. This summer will be different. The kids are all excited.

Maddox has been coming to church with us for the past several weeks. He is your typical one year old who doesn't want to sit still, which means either Jeff or I spend a little time out in the hall. We aren't putting him in nursery(class for 18mo-3yrs) because we just don't want him sucking on the toys all the other runny-nosed kids are sucking on. I think we'll pass on the guaranteed germs. Who knows when or if we'll put him in, but at this point we are just happy to all be at church together.

Maddox is just our little love!! We are so grateful for him and so happy that we've all made it this far. We are in a great place with him right now. I feel so blessed to be his mother and to have had some of the experiences that we have had. It is amazing to make it through a really difficult time and then look back at the road you've traveled. I finally feel like the future is bright and the "trial" in many ways is over. We know there will be lots of rough patches and painful experiences, but we have managed to live through something we never thought we could survive. I am so thankful for friends, family, and especially a loving Heavenly Father who through His Son, Jesus Christ, helped us carry this burden and learn and grow through the process. Our lives definitely took a trip to a destination different than the one we had planned, but I can't tell you how grateful I am for the amazing husband and kiddos I'm traveling with.

Life is good.

17 and 18 months...oops!

2011-04-21T19:15:00.001-07:00

Happy 18 months to my little ball of CRAZY!!!

grandpa pushing Mad in the swing

Maddox has had a great two months.

He went on a trip to Grammy and Grandpa Sherwood's for spring break with me and the older kids while Jeff worked. Aside from not sleeping almost the entire time we were there
and spending a few days with a stomach bug(we brought it from home), he enjoyed a nice relaxing time visiting family. He was surprisingly happy and enjoyed watching movies, going to the park,
watching Keyan and Tracen play the wii and PS3(thanks uncles adam and brett) and not having therapy or doctors' visits for a week. It was delightful for all of us.

After our trip to Missouri Maddox had an endoscopy done by his new GI doc in Dallas. The results showed a normal esophagus, stomach, and intestines, which is great news. Also good news is the fact that Maddox is now no longer using the feeding pump, but is getting 60ml syringe boluses throughout the day. This is a huge step for us and has given maddox a whole new sense of freedom. It has been wonderful! He still gags and retches occasionally, but overall is tolerating it well. The schedule can be a little intense for me since I give him three 60ml syringe boluses in an hour, spaced 30 minutes apart, and do this every three hours. For example, here is the schedule: 9:00,9:30,10:00am - 12:00,12:30,1:00pm - 3 etc...
It is almost like having a new baby and having your whole day revolve around feeding. It only takes a minute to push each feed through but it feels like I spend a lot of time mixing formula and filling and emptying syringes. It is a step forward and so we are happy. In fact as soon as Maddox recovers from his most recent cold and ear infection we are going to start weaning his tube feeds and really focus on oral feeding. He is doing so much better at putting food in his mouth even though he still gets next to no calories from it. His OT and dietitian think this is a great time to forge ahead. We'll take away one hour's worth of food through his tube, space the other feedings out and work on oral feeding in between tube feeds. This is a fairly conservative wean, so I'm told, and will give him a better chance of feeling hungry and being motivated to eat. We will try this for a couple of weeks and if he can handle it without losing weight then we'll continue to wean, otherwise we'll add in some more tube feeds. The kid is still 19 lbs and less than 28 inches in length, so growth is a major factor and we need to make sure that he can maintain what he has. We are definitely excited about this major step in the right direction.

Maddox is still not walking. He is so darn close though, and I know it is just a matter of him feeling comfortable enough to let go. He has stood for as long as five seconds by himself and has
even taken a step. He gets where he wants to go, has so much energy, and is so inquisitive so hopefully all that gets him closer to catching up soon. He throws EVERYTHING, and honestly has a pretty good little arm. He loves to wrestle and if any of us are caught laying on the floor he is quick to crawl on top of us. He really gets a kick out of doing it to his siblings and I'm often called to rescue them from their little brother. He crawls at lightning speed, crawls up the stairs, and is learning how to go down. He is cruising all over the house, pushes his walker-toy, can walk while holding only one of my hands, and makes messes much faster than we can clean then up. Basically he is your average one year old.

Maddox tries to say a few words, like binky, balloon, moo, teeth, mama, dada, all done, and hi. "Hi" is definitely the clearest and it is so cute to hear him say it. He uses a few signs, mostly please and all done. He definitely gets his point across and I love that he is really working hard to communicate. His fine motor skills are great. He plays with Mr. Potato Head and is able to put the different pieces in the little holes. He can stack two blocks, put shapes in a shape sorter, put puzzle pieces in their spot and is forever picking little tiny pieces of food,trash, stuff up off the floor. Only recently has he started putting some of those tiny pieces in his mouth.

Maddox was recently seen by his urologist and we discussed surgery options for his chordee/hypospadias .

(We've been chuckling about this picture. Apparently something is wrong when the puddle is behind you.)

We haven't decided on a date yet, but are planning on some time this summer. Sounds like a fun time for Maddox.
Maddox's heart was stable at our last cardiology appointment, and the bnp test, which tests for heart failure came back only slightly above normal range. Dr. Allender was very pleased. So if his heart isn't the culprit for why he isn't growing, then we assume that it is indeed his chromosomal defect and he will most likely be starting growth hormones in June when we go back to the endocrinologist. I'm not really excited about having to give Maddox a shot everyday, but I would like him to grow and hopefully reach 5'4" by the time he is 17. That is his projected maximum height even with the growth hormones, so I guess you could say that we feel some pressure to get started on the hormones to give him the best chance to get as many inches as he can get.

Maddox is a joy to have in our family. I am so glad that we are 18 months into this and not back at months 0-7. He is such a happy, goofy, cuddly little boy. I love his big toothy grin and his LONG eyelashes. He is determined, strong, feisty, has a temper, and fills my heart! I love my handsome baby!!

16 Months

2011-02-26T13:55:00.000-08:00

I have been such a slacker when it comes to updating the blog. Life is busy, which is obviously not a situation unique to just our little family. Life is just busy, period.

But I will attempt to do better.

(Equine sleeping is all the rage around here!!)

Maddox is 16 months as of the 21st of February. He is a speed crawler, proficient cruiser, and extremely curious little man. He is super cuddly, very squirmy, and gives the best hugs complete with back patting. Love him.

If I had to guess, I would say that Maddox is about two months away from walking, and when I say walking I mean toddling around precariously. With that being said, he is doing very well and is making good progress with his gross motor skills. He is very strong and very motivated. It has been a blessing for him to have older siblings to watch and try to keep up with. One of the problems with him being mobile and wanting to move quickly is his feeding pump. He spends about seven hours a day hooked up to the pump. The tubing is several feet long, but he isn't a fan of staying within a certain radius of the backpack that holds his pump and bag of food. He tries dragging the bag behind him as he crawls, but it tends to create a leaky mess and sore tummy. The older kids are great about helping Jeff and I move the bag around the house as Mad crawls and moves. Once he is walking I think we will try to just put the backpack on him and let him carry it around with him. It might be a bit heavy though, which probably won't help with his initial unsteadiness, but as he gets the hang of it I would imagine that wearing it would free him to go where he wants to go.

(not uncommon mess at our house)

I wish I could say that Maddox would be off the pump soon and eating by mouth, but that is simply not the case. We have seen little progress in the feeding department, but are trying to not be discouraged or frustrated. It is what it is. For the past few months Maddox has plateaued with his growth. His dietitian had us go up considerably on his feeds, but it is definitely possible that his lack of growth is due to his chromosomal disorder(turner's mosaic), or his thyroid, or his heart. At his last cardiology appointment in January we saw that his heart was starting to show a little more wear and tear and start down the anticipated path leading to more surgery. Apparently it is possible for one's heart function to look okay on an echo and still show metabolic changes that are caused by heart failure. So, we aren't completely sure why he isn't growing at a faster rate, but I assume the next few months will be pretty telling. We finally switched to a new GI doctor after spending the past year going to.....a less than helpful one. We have some tests coming up to help us figure out Maddox's gagging, retching, vomiting, and determine if he needs more surgery to help. It is possible that we will be referred to and ENT as well in the near future. You can never have too many specialists, right? An ENT would put us at SEVEN specialist that we see on a regular basis. That of course doesn't include his pediatrician, PT, OT or dietitian. Too many doctors!!

On a positive note, Mad is letting us brush his teeth with an electric toothbrush!! His OT brushes his skin with a medical brush. She also uses a little massager the size of a pen with different heads on it and massages his body and inside his mouth. All these things help with his sensory issues and will help with feeding. He know what food is and where it is supposed to go but he seems pretty nervous about putting it in his mouth. He says, "Aahhhh" and shoves crackers and the like in our mouths, but really isn't interested in doing more than licking or touching his lips to most things.

He has said or attempted to say a few words and is understanding directions more and more. His is such a goof. He can be really shy, but can also be such a ham. We have started letting him go on the trampoline and he LOVES it! This kid has NO FEAR. When the older kids are outside jumping he stands at the window and squeals and waves and points a laughs. It is adorable.

Maddox wants to be where the action is.

His mom could handle maybe a little less action, but of course we couldn't let things get

too boring around here.

Happy Congenital Heart Defect Awareness Day!!!

2011-02-14T10:59:00.000-08:00

What a wonderful day to celebrate hearts!!

My heart is full as I look at our sweet little Maddox, who has joined the ranks of children with a CHD. He is my hero and proves everyday, the power of the human heart.

Happy Heart Day Mad-Man!

Great Information from the American Heart Association:

Congenital Heart Defects in Children Fact Sheet

What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

Is all heart disease in children congenital?
No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as "arrhythmias".

Who is at risk to have a child with a congenital heart defect?
Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

How many people in the United States have a congenital heart defect?
About 650,000 to 1.3 million Americans have a congenital heart defect. Approximately 36,000 babies are born with a defect each year.

Why do congenital heart defects occur?
Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

How can I tell if my baby or child has a congenital heart defect?
Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

How serious is the problem?
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion.

Are things improving?
Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30 percent and today it is around 5 percent.

How well can people with congenital heart defects function?
Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.

What is the social/financial impact of congenital heart defects?
Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.

What is the impact of congenital heart disease on families?
The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.

Where can I get additional information?
You can get additional information from the American Heart Association. You can reach them by calling 1-800-AHA-USA1 (1-800-242-8721) or atwww.americanheart.org/children.

RSV anyone?

2011-01-24T18:56:00.001-08:00

Yes. It's true.
Maddox has RSV. He has been getting very expensive shots(thank you insurance) every month since fall started to prevent this very illness, and lucky us, he caught it!!

The Synagis shot is supposed to help prevent RSV and help lessen the severity of the virus should one get it. The shot is generally given to children ages two and under who are medically fragile. It is given once a month from October through February or March depending on where you live. We drive to Ft worth to the pulmonary clinic for his shots, and he howls as soon as we walk through the door. Poor traumatized little boy. Despite our efforts, using hand sanitizer and washing so much that my hands are bleeding, and going next to no where besides the doctors' office, those pesky germs found him. Darn doctors' offices. It's a catch 22.

So to cap off a lovely week of vomit and diarrhea we have added a wonderfully exciting virus to the mix.

I think I need a stiff drink...as in a milkshake, people. Sheesh.

Maddox is feeling pretty lousy, but holding his own and overall in good spirits. We should see some improvement by the end of this week. Like all viruses, you just have to let it run it's course. We'll be praying to stay out of the hospital, and so far, thanks to the spendy inoculations, Maddox is managing okay. The doctor told us today that by day four of being sick you hit a plateau that lasts for a few days and then you slowly start to get better. Today was day four or five, so I'm hoping we have seen the worst and will be sleeping at night again by next week. Hopefully jeff and I can make it that long. We are both feeling a little sickly at this point, so it could be an interesting week.

I promise there will be a comprehensive update soon. Soon is a relative term, obviously.

- Posted using BlogPress from my iPhone

15 Months

2011-01-21T10:09:00.001-08:00

Happy 15 months to our
goofy goof!!

We have lots to update, but since illness has completely taken over our home it will have to wait until I'm done rinsing out sick bowls. Hopefully that happens soon.

-Posted using BlogPress from my iPhone

14 Months

2010-12-21T19:32:00.000-08:00

Maddox is 14 months old today.

One year ago, tomorrow, Jeff and I flew home from CHB(Children's Hospital Boston) with our 2 month old. We were thrilled to be heading home for Christmas and bringing our own miracle with us. Last Christmas, though wonderful to be home, was filled with tremendous stress and intense anxiety as we tried to care for our very fragile baby on our own. We slept little as we suddenly became the full time nurses, care-givers, and parents of Maddox.

On Christmas Eve day I noticed that Maddox's retractions were much more pronounced than normal. There was a definite difference in how he was breathing and I was trying to do my best to discern what had changed and what needed to be done. By late Christmas Eve I was begging Jeff to take him to the ER. Jeff thought he was okay, but I was panicking. Up to this point I had taken our children to the ER and all doctor appointments basically by myself. This was not an area Jeff was used to, but I physically and mentally could not make myself go back to a hospital. I surprised myself with how adamantly I insisted that Jeff take him. Thankfully Jeff could tell I was losing it, and packed our less than six pound baby and all his equipment into the car and headed to the hospital. It was 1am and having not slept for days, I quickly fell asleep. Not even my anxiety for Jeff and Maddox could keep me awake. I slept. Jeff tiredly brought Maddox home around 6am with no real answers, as the local hospital he took Maddox to, isn't equipped to handle someone like him. The staff however didn't see any immediate reason to keep or transfer them to the children's hospital 45 minutes away, so they said Jeff could take Maddox home. Everyone ended up enjoying Christmas. We had presents and yummy food, and spent time together, but there was an underlying feeling of unease.

Starting the day after we came home from Boston, Maddox started throwing up regularly. It was a problem, and we didn't have a group of doctors making rounds a couple times a day to give us the plan for dealing with it. We were on our own.

New Year's Eve was spent lazing about. That night Jeff was upstairs putting kids to bed and I was in Maddox's room trying to console him. He was screaming and writhing and I couldn't get him to calm down. For cardiac patients long bouts of screaming and crying can be less than healthy and for the parent it is nerve-wracking. I didn't know what to do. Maddox started to retch, but midway through, he stiffened, and kind of clenched his jaw. Something was wrong. He quickly turned purple and his eyes started to, very literally, bug out of his face. I started screaming for Jeff. Screaming. I was hysterical. Maddox was going limp, and turning blue, and I was screaming.

"Call 911! Jeff hurry! Maddox! NO!! "

By this point I was down on the floor with Maddox trying to open his mouth, hit him on the back...I had no idea what I was trying to do, but I knew that I was losing my baby. Jeff rushed in and started CPR. He had just taken a course at work a week or two prior. Someone had canceled and he took their spot. Tender mercy.
I remember seeing Maddox finally take a breath and we kind of stopped, not sure what to do at that point. The older kids had come downstairs and were standing at the door to Maddox's bedroom-not sure how long they'd been there. We started to hear sirens. Jeff ran out to meet the emergency personnel and I carried a still blue, but breathing Maddox to the living room. The paramedics rushed in and gave Maddox blow-by O2 and checked his oxygen saturation. Our good neighbors were over almost immediately to take Keyan, Brynna, and Tracen to their home and another neighbor was there to see what needed to be done. So grateful for them.

I rode with Maddox in the back of an ambulance to Cook Children's Hospital in Fort Worth, and Jeff followed by car. The ringing in of the new year was done in a room in the ER bustling with nurses and doctors, and Jeff and I sitting nearly numb in a corner. Maddox spent the next four days in the hospital. And so began 2010.

I look back on the beginnings of our life with Maddox and I am just so grateful that phase is over. What a difference a year makes. This Christmas we are busy watching Maddox's progress with crawling, his attempts to pull himself up to a standing position, his funny stiff-kneed walk while holding our hands. We are thankful for the miraculous little person he is.
He is such a determined and strong willed little boy. He's a love for sure, but such a fighter. He has opened our eyes and our hearts. We love you Maddox. Each month with you is a miracle. Merry Christmas!

13 Months

2010-12-01T12:19:00.000-08:00

One month older and ornerier too - happy 13 months to you!

We got back on Saturday from our first road trip with Maddox. We all survived. Though survival, at points during the week, seemed in question. Maddox proved to be much less well adjusted than we had hoped. It was very interesting to see how he was out of his element. On top of being forced to ride in a car for two days straight and sleep in a new place, the entire family got sick with a bad cold/respiratory virus. Maddox, as well as the rest of us, felt awful the whole week, and slept poorly, due to coughing and nose blowing, and overall feeling like crap. That is enough to mess with any one's mood. Despite being sick, we had a nice time in Florida and did basically everything we had planned. We just did it all feeling lousy. And of course we made sure to leave our germs with my sister and her family, who so graciously housed and fed us and watched Maddox while the rest of our little family went to Disney World. Yes, my sister is a saint. Thanks Aimee(and Peter, Megan, Madilyn and Nick and Ashlie too) for everything! You guys are the best! Maddox required Aimee to hold him the entire day, or at least when she wasn't getting meds, or managing his g-tube feeds, giving breathing treatments, and trying to cure his newly developed constipation-as of this trip. Yes, a saint I tell ya.

Maddox is continuing to make progress in lots of areas. He is also showing his strong will and turning into a full fledged toddler, complete with tantrums, hitting and refusing to do anything you ask him too. He really can be delightful, but I think we are at one of those rough patches, due less to actual health problems and more to behavioral stuff. Somewhere in my subconscious I think I assumed that because of all of the junk he's gone through to get here and stay here, he was destined to be practically perfect. So maybe not perfect, but I think I felt like it was only fair that he have a calm, easy going personality, that he didn't fuss, that he smiled and cuddled(which he does for immediate family), and that he would be in all ways charming and have no flaws beyond the glaring health ones. Alas, it is not to be. He's just as stubborn as his mother. It's a good thing he's cute.

He is definitely getting stronger and now weighs a whopping 19lbs. We are still trying to help him learn how to crawl. I really think he could if he wanted to. He objects strongly to his physical therapist's attempts to work with him. I think it is part frustration at being asked to work, and part some serious anxiety around other people. He does much more for me when she isn't here. He screams and cries and pushes her away. Poor Miss Vicki. She is the nicest lady, but Maddox has a love-hate relationship with her. We will hopefully - if approved by insurance - be increasing PT to 8 times a month, with the hope that Maddox will progress quicker at his gross motor skills. He is basically on target for fine motor, so his OT(occupational therapist) is working primarily on feeding during her 8 visits a month. And soon we will reintroduce a regular dietitian to our monthly home visits. It is busy as ever around here.

For Maddox, crying usually leads to a major coughing/gagging/retching fit, which sounds awful and gets us some embarrassing attention when witnessed by people in public places. We often have to help suction out nasty secretions with an aspirator so he doesn't completely choke. He returns to his normal color pretty quick, but yeah, it draws some attention. I've decided that these fits are in part a behavioral issue that he will hopefully overcome. When he gags and coughs it gets people running to him. And after spending most of his life vomiting violently, I think he likes the endorphins that are released after going through the motions of vomiting since he is no longer able to actually vomit. Since he seems to have a perpetual cold some of these fits are legitimate and productive at clearing out his flemy throat. So, my question is: as a mother who wants to care for her child and also help him develop into something other than a tyrant, how should I respond to these fits of his? I am literally at a loss. My sister and I actually termed him "the little tyrant" and decided we need to dress him up as Napoleon Bonaparte for Halloween next year. It is so fitting-they both even have a stomach complaint. HA.

We have been working hard on switching up his g-tube feeds as well. I am actually quite proud of myself for going from continuous feeds for 20 hours a day to 6 bolus feeds during the day and nothing at night. I have figured it out basically on my own, which honestly isn't rocket science, but has been a real concern of mine. He is tolerating it well and we are really now hoping to progress in the oral feeding department. He just doesn't really care about eating. He'll put food I give him in his mouth for a brief second just to appease me, but it doesn't stay there. I tried giving him an Andes' Mint today, which he tolerated better than I thought he would. But honestly, it's chocolate -what's not to like? The feeding thing is a struggle for me. If I really pushed it on him consistently for a few hours each day, we'd probably see more progress. The issue is that I like the g-tube. Kind of. I like how convenient it can be. I like how I can set it and then walk away and know that he's getting fed. He can eat in the car, while he's sleeping, while he's playing or having therapy, etc... I know he's getting his meds and not spitting them out. It is super nice, especially since we are working so hard to keep him growing. So, my goal for the next year is to make serious strides in the feeding department. We'll see how it goes.

From a cardiac perspective Maddox is doing very well. His heart looks good, and his mitral valve, as of October, appears to be leaking a little less. His LA(left atrium) pressure was slightly lower. Also good. The only thing that is at all concerning is his homograft, which is the preserved pulmonary valve of a cadaver that was put in during the Ross procedure of his open heart surgery. It is starting to leak more. We know that it is just a matter of time before it needs replaced. The surgeon initially hoped that it could last until Maddox was three of four years old. It doesn't grow with Maddox's heart so eventually he will need a larger one put in. We are hoping that he has another good year until he needs another heart surgery. It would be great if he was mostly caught up developmentally before he has any more surgery. But as we know, things don't always go to plan. So we continue to work and try not to think too far ahead. Maddox is after all running this show! At least he thinks so.

12 MONTHS

2010-10-26T08:43:00.000-07:00

We made it!!!

Maddox officially turned one on Thursday October 21st.
That day was full of two therapy sessions, a wellness check,
a shot, and lots of singing happy birthday.
Maddox grinned ear to ear every time we sang and clapped for him.

We are all pretty excited and humbled over the events of the past year.
This week Jeff and I have spent some time looking at pictures,
and remembering how challenging things have been
at different points with Maddox.
We are so grateful to be at this stage with him and to have seen such
amazing growth and progress.
He is a miracle and we have seen remarkable things
happen in a relatively short amount of time.

Looking at old pictures of Maddox has been a good reminder that we have not been alone on this journey and that our Father in Heaven has been aware of our family and especially Maddox since the beginning. We have been strengthened and sustained during the difficult times. We have been given many opportunities to open our mouths and share our experience and our knowledge of a higher power being at work in our lives.

Maddox has had a busy month. We have switched formulas, finally.
We have gone from the crazy expensive, hypoallergenic stuff to a normal milk based formula that we can buy at the grocery store for less than half the price. WHOO! That was a mouthful.
We also discontinued his reflux medication. Yeah!

He is continuing to work on crawling and is making progress in getting to all fours from a sitting position. He is starting to try to pull up on things, still requiring a lot of assistance, but definitely improving. He is eating spoonfuls of rice cereal and other pureed foods and is not gagging on it.

He has started throwing tantrums and has been giving his therapists and all physicians and nurses a hard time. The stranger anxiety is in full force. If people get too close he wigs out.
We also discovered that he has a very real fear of balloons. HILARIOUS!!

Maddox, you have proven what faith, prayer, the power of the Priesthood, and a whole lot of work can do. You have come so far, from this:

to this.
AMAZING!!

We sure love you Mad, and are grateful for the special little boy you are.
Happy Birthday!
We are excited to see what the next year holds.
Keep amazing us.

ELEVEN MONTHS

2010-09-21T19:19:00.000-07:00

Yikes!!

Can you believe we are one month away from this kid's first birthday!!
Hard to believe some days.

Maddox is doing well. He weighs 16+ pounds, is around 27 inches long, and even has rolls and chubby cheeks.
He is rocking on his hands and knees, and really
using his body more and more. We are working hard on crawling and have a goal to have him crawling well and learning to walk in the next 6 months.
His therapists just did an evaluation, and he is at a 7 month old level
for gross motor, an approximate 6 month level for speech, and a 9-11 month level
for fine motor. So apparently we have a little work to do, but he is coming along.
The exciting thing to me is that he is basically age appropriate for fine motor, which really involves his brain and understanding how things work, cause and effect, etc...
The crawling and walking will come. I am sure the speaking and eating orally will come too, but that is really going to require some serious effort and time. Our insurance now won't cover speech therapy, so we are trying to work around that and see if they will cover "feeding" therapy. It's really the same thing at this age, but it's just semantics. If we call it "feeding therapy" it is more likely that it will be looked at seriously and covered. We're crossing our fingers. Our occupational therapist does do some oral motor therapy, but we need a bit more intensive help. It's so interesting what the insurance company won't cover and why. You'd think that eating by mouth and preventing major speech issues would be the choice they would make, but apparently not. Regardless of how difficult it is to deal with the insurance company's arbitrary ways of doing things, I am pretty darn grateful to have insurance.

Exciting news though, we have started bolus feeds!!!! Bolus feeding is how normal people eat...a large volume of food, then wait for several hours. Except with Maddox, and any child who has been on continuous feeds basically his whole life, transitioning to bolus is a LONG process. Right now we are taking his hourly amount, doubling it, and then giving him an hour off. So instead of 40mls per hour over 20 hours a day he is getting 80mls in an hour and then he's off for an hour, on an hour, off an hour. It is annoying, but it's a major step for him, so we are excited. He is still on continuous feeds at night, which is helpful. It will most likely be a few months until we can get all of his calories to him in day light hours. The idea is that bolus feeds will also help him with oral feeding. He has never really felt hungry because he was constantly being fed. In order for him to really have a desire to eat he needs to feel hunger. I am nervous for the day when that happens. He is going to wig out!!

Maddox is in the throws of stranger anxiety and has really started to give people crusty looks if they get too close. His physical therapist hadn't been out for a while due to his surgery and a few other things, so this week he just howled as she was trying to work with him. He is pretty resistant to people trying to make him do things. The kid is feisty.

He has about three weeks left to wear his helmet, and he is only going to wear it at night for the rest of the time. His head looks loads better, not quite the same shape as his siblings, but pretty normal. I am so grateful to be nearly done with it. One more thing to check off the list. We are making progress.

(first hike)

This probably sounds strange, but it finally feels like Maddox is a permanent fixture in our home. There have been days when both Jeff and I wondered if he'd make it, or if he did, in what capacity. I think we have finally been able to view that life can be pleasant with him and that we are not always going to measure time by doctor appointments or procedures. I know that this is most likely just a lull in the storm, but we are going to take advantage of it, and just enjoy what there is to enjoy. Last Sunday was the first time in the past year that going to church as a family and just being there really felt normal. I'm not really sure how to explain it, but it was almost like finally opening the windows to let a breeze blow through after being boarded up for months. I felt like myself. I liked it.

Maddox really is such a joy. He's so snugly, smiley, and giggly. He's very curious, and is somewhat of an adrenaline junkie(he loves throwing himself backwards with little or no warning to those holding him.) He is determined and passionate. He teaches our family daily about important things. He gives great slobbery kisses and just melts his mama. He has started trying to sing, which is adorable, but has very little resemblance to actual singing.
He watches everything around him. His eyes are glued to Keyan, Brynna, and Tracen as they run around and play and he laughs more for them than anyone. He has enviously long and dark eyelashes and perfect dimpled hands. He has finally moved from 3-6 month clothing to 6-9 month stuff. Simple pleasures. We are just so grateful to be at this point.

Would you look at that GAG REFLEX

2010-09-02T13:50:00.000-07:00

Nice pincer grasp though.

10 Months

2010-08-29T19:51:00.000-07:00

I'm late in posting about another month of growth and excitement, but as of the 21st Maddox is 10 amazing months old.

He had his post surgery appointment and the surgeon was happy with how he checked out. He has lost a little weight since the surgery due to our going down on his feeds to accommodate his now smaller stomach and his body's new way of dealing with stomach contents. We are working on stretching that stomach out and will hopefully start bolus feeds in the the next month or two. We should also be able to discontinue two of his meds over the next couple months, which has Jeff and I giving each other high fives!! He has had some grumpy days, but I think he's feeling better. Maddox has been busy, as in wiggly, squirmy, whiny, feisty, ornery, etc... The kid is crazy!! He now has 8 teeth, 4 top and 4 bottom. He is drooling all over and soaking his clothes in saliva. He is sucking out of a straw, taking tastes of things,

Playing with balls, reaching for things and falling over.

He is obsessed with remotes and phones and all hand held technological devices. He throws tantrums when he doesn't get what he wants and is starting to show some serious sass(not sure where he gets it).

We love our little Mad-Man!! Keep up the good work bubba!!

Surgery Update

2010-08-11T16:21:00.000-07:00

The surgery happened Monday as planned and went better than anticipated. It was done laparoscopically without moving the g-tube site, and the mass in Maddox's chest was removed but appears to be nothing more than a hemangioma(collection of veins), which brynna and I both had as babies as well.

Maddox has been sore and grumpy and a little swollen. He is being fed again through his g-tube and despite his efforts, has not thrown up. When he starts to retch we open up his g-tube so the pressure can escape through the tube instead of tearing out stitches and force it's way up his throat. His body should get used to alternate ways of emptying his stomach in a month or so. The plan is to go home this evening as soon as all the discharge paper work gets done. In other words, who knows when.

We are so grateful for all of your prayers in our behalf. It is fitting that we go home from the hospital today with our Miracle Maddox because it was a year ago today that this journey began, a year ago today that we learned that Maddox had something wrong with his heart. On that day we could not have foreseen or even imagined what experiences the next year would hold for our family. We have been blessed to survive the experience thus far and to see the hand of the Lord clearly as we have prayed and fasted for help and guidance. I am genuinely grateful for this amazing little boy who has joined our family and changed us forever.
We love you Maddox! You are our miracle.

- Posted using BlogPress from my iPhone

To the Operating Room we go

2010-07-31T11:41:00.001-07:00

Monday August 9th is the day -the day after Jeff's birthday and two weeks before school starts - the day Mad gets to have his lump removed and his stomach wrapped around his esophagus! Sounds like a party, right? All we need now is cake and ice cream served in the hospital waiting room. All kidding aside, it is good timing and we are feeling optimistic and ready to get it over and done with.
Maddox and I spent a couple hours at the surgery clinic and I left feeling good about the outcome of this surgery.

Amazing how used to some of this stuff I'm getting. That must be one of the ways Heavenly Father is blessing me - the fact that I am now nearly content to sit in a doctor's office day after day with one or more children, and wait for hours and discuss unpleasant procedures and even be willing to pay big bucks to do it. Ha!

Life is so funny.

Next week Maddox will have a PH Probe study done in preparation for surgery, which will tell us how much he is refluxing. We'll go to the hospital, have an NG tube put up his nose and down to his stomach, and leave it for 18-24. The tube is attached to a box that somehow reads and records what is going on in the stomach and throat. Maddox is going to love it!!

He got a chest X-ray on Thursday and it definitely showed continued lung disease, which is not surprising, but he is sounding so much better since we have increased his steroid/nebulizer treatments. Two weeks ago you could hear him breathing from another room - SO LOUD! He also has needed oxygen much less this week. Hopefully that puts him in a better place to handle surgery and stay out of the ICU...knock on wood.

Here is one of his new tricks.

He's coming along and is just so proud if himself sometimes. He loves it when we clap and cheer and make a big deal out of his great accomplishments. Pretty cute.

Sometimes I am reminded truly what a miracle he is. It is amazing how far he has come and really how well he is doing. I'm so glad that we can look back and see so much progress because there have certainly been times when we weren't sure he was ever going to do things like smile and laugh, roll over or play with toys. Makes me smile to see how happy he is. Love him.

9 Months

2010-07-23T16:33:00.000-07:00

Hard to believe that Maddox is 9 months old.
He has four teeth, weighs 15.5 pounds, sits on his own, can now bear weight on his legs, claps and waves and is just one smiley and interactive little boy. He gibber-jabbers all day long and really does so many age appropriate things. It is so nice to see so many good things happening with him and feel that he is a normal baby... some of the time. He's a love.

It looks like he'll be having surgery in August. We are trying to finalize a few things and get all the doctors to coordinate with one another -a feat in itself. I'm not thrilled about Maddox having to have surgery right now, but I am definitely getting used to the idea and feeling better about it than I did a few months ago.

We are praying that things will go smoothly and this surgery will open the way for him to progress with his oral feeding, and that his asthma will be greatly helped which will allow him to advance in his therapy. I have a goal to have him walking, eating, and basically caught up before he is two. This surgery could set him back a couple of months, but should really help in the long run, and that's what we have to remember. This kid has had a rough start to life, but he is really doing so well in so many areas.

Built in toys: feeding tube and nasal aspirator.

It's funny that he likes to play with the aspirator so much.
We use it to suck his vomit out of his throat several
times a day, so it's surprising that he isn't completely averse to it.

Crazy kid!

We all love this little man, but life, very literally revolves around him- feeds, meds, breathing treatments, doctor appointments, therapy, hand sanitizer, bills, Bills, BILLS, vomit, constant phone calls concerning his care, "Don't sneeze near him," "Hurry, go grab a blanket and an aspirator, he's throwing up," "No, we can't do that..." "Can you wait? I have to go take care of Maddox,"...The three older kids are getting kind of sick of the never ending excuses for why we can't do something or go somewhere or see someone...MADDOX. They take it so well most of the time, but occasionally I wonder if at some point resentment is going to set in. I hope we can avoid that, but making sure everyone gets equal time is, in all honesty, IMPOSSIBLE. The past year has been insanely stressful, and my body is seeing the effects of not eating normally, sleeping normally, and just living in crisis mode non-stop. That probably sounds melodramatic. Maybe I just need to get a grip, but the wrinkles and gray hair(seriously) are getting me down. I keep thinking that if I can just get organized and make sure I have everything scheduled down to the minute that I'd be able to meet every one's needs. The problem is life doesn't stop or slow down long enough for me to get organized, and I'm worn out. I think I assumed that by this time things would be fairly normal, but the reality is that this is going to be how things are, and I MUST figure out a way to function successfully with what we have. This is sounding very pity-party-ish. I'll be done now.

I hope you know how much I love this little boy. I have learned so much from him. He is a FIGHTER!! He has the most loving and content little personality and his spirit is strong. He is beautiful and brings such joy and gives the BEST kisses!!

Now that's love!!!

Simple Pleasures

2010-07-14T15:41:00.001-07:00

Full oxygen tanks...

provides a different perspective
on life, doesn't it.

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The Saga Continues...

2010-07-12T19:41:00.000-07:00

We've been discussing the idea of having the fundo-plication surgery done for a few months now, and after our first visit with the surgeon I felt like it was going to be something we could avoid. Well, this past week was our follow up appointment with the surgeon, and after waiting in a freezing cold waiting room with my three boys(Brynn was at a friend's house) for just under three hours, we finally met with the doc and received less than great news. The lump in Maddox's chest is in fact a solid mass-not good-and needs to come out...SOON. Dr. Bass said that 80% chance it was benign(not cancerous), and 20% chance it was malignant(cancerous). Great. Cancer. Okay.

So it is fairly urgent that the lump be removed. Unfortunately, due to all the reflux, Maddox is having a significantly difficult time breathing. He is on oxygen regularly and getting breathing treatments daily and wheezing frequently. The anesthesiologists won't even think about putting him under for surgery with him breathing like he is. Back to the fundo-this surgery is meant to treat severe reflux, and now that Maddox's reflux is affecting his breathing it seems very necessary. So, he needs the surgery to help with his breathing, and he can't get surgery because of his breathing. Yeah. It's a problem.

The plan is to see GI and Pulmonary doctors and try to medically manage the reflux by trying one more medication(the new med Maddox got a few weeks ago isn't doing much) and get his breathing under control so that surgery is possible. Unfortunately Dr. Bass(surgeon) is moving to NY the end of August. She is the most skilled in her practice at doing laproscopic procedures(using small incisions to perform the operation) and even she couldn't guarantee that the fundo on Maddox was possible without opening him up completely. This could result in Maddox spending several weeks in the hospital. Since Maddox already has a g-tube, it may not be possible to wrap the stomach around the esophagus and keep his existing g-tube site. So, that hole may need to be repaired and stitched up and a new g-tube placed. This can cause a real mess. The stomach will be pulled several different directions and may not hold in all of them. His previous g-tube site could leak stomach contents, his wrap(fundo) could either be too tight or too loose, and could result in the surgery failing to do what it is meant to do. The surgeon said Maddox could spend some time in the ICU post surgery due to him being a very complicated patient. Not to mention the strain that undergoing surgery can put on his heart and lungs. And it is likely that Dr. Bass won't even be the doctor who ends up operating.

So that's what is new at our house. On a positive note, if the surgery is successful at doing what it is supposed to do, it could make a big difference to Maddox and our whole family's current quality of life. We are praying to know what to do and that the doctors involved in Maddox's care will be inspired. It is interesting to note that a few months ago when Maddox was vomiting so frequently, his pediatrician was very strongly recommending that he get the fundo. I was dead set against it. We prayed specifically about the vomiting, and over night it stopped. It stopped for a good two months. Maddox gained weight and strength and was in much less pain those two months. Now, despite Maddox again throwing up and being in pain, he is bigger and stronger and in a better place to handle this operation if he needs it. I would still love to avoid it and just manage the reflux with medication, but part of me feels like it will be a good thing in the long run, and also that Heavenly Father is again preserving Maddox and very much a part of this experience and the timing of things. I wish His timing didn't correspond with school starting for the second year in a row, but things will work out. Regardless of whether or not Mad ends up getting the fundo-plication, the lump in his chest still must be surgically removed. And if he is going to go under the knife we might as well do as much as needs to be done.

Keep praying for this little fighter of mine. He is definitely making life interesting.

8 months

2010-06-23T10:53:00.001-07:00

It's been a while, a whole month in fact, since our last update. The past month has been much like previous months...full of illness. Maddox has started vomiting again regularly and it seems to be adding to his respiratory issues. Right now he is back on oxygen, wheezing, and needing regular breathing treatments.

Tracen was sick with a high fever(104*) and vomiting on Sunday and now has a rash all over his body. Of course Mad woke up this morning with a fever too. Hopefully we'll avoid making a trip to the hospital.

It is so annoying to have a max of two weeks at a time without him being sick. It is really hard to move forward with his PT, OT, and Oral Motor therapy when he is sick all the time.

Because he started up-chucking again our pediatrician reopened the discussion of getting the fundoplication surgery(it involves wrapping the stomach around the esophagus). Maddox had an appointment with a surgeon anyway to discuss a lump on his chest that appeared about two months ago and has doubled in size in that time, so I told the Pediatrician I would bring up the fundo with the surgeon as well. Thankfully the surgeon felt the same way about doing the fundo as I did. She was surprised that we hadn't tried any other reflux meds or upped his dose of the one he was on. I have brought this very thing up with our GI doc and pediatrician, but they seemed pretty set on the surgery. Last week mad had an ultrasound on his lump and an upper GI study. Everything with the GI looked fine, and though we haven't received the results from the ultrasound, the surgeon had previously told us that the lump would need to come out. I also contacted the GI doc and finally got a new reflex prescription to try. We are praying this one is more effective for poor little Maddox and keep him from needing the fundo.

The Mad-man is rolling some and working on sitting. We are also doing weight-bearing exercises for his legs and arms. Things are moving slowly, but he'll get it. He is babbling lots and laughs at his siblings regularly. He has also started giving kisses and cups our faces in his sweet little hands.

Love it. His helmet makes it hard to get close to his face, but we try to work around it and get in extra snuggle time when he is having a break from it.

We have stalled on oral feeding and are trying to let him be in charge of it and just let him play and explore instead of force feed. Right now he'll suck on baby carrots, play with a bottle, make messes in baby food with his toys and spoons and continues to love his pacifier and infadent(baby teeth cleaner). Due to the fact that he is still on continuous feeds, he never feels hungry and really has no reason to eat. Because of all the vomiting, people(docs,therapist,etc...) all feel that transitioning to bolus feeds isn't going to happen anytime soon. Catch 22.

Such is life with these little CHD kids. There are steps forward and back constantly. It seems to be the way life is for all of us.
So, we just keep on keeping on and pray that things improve and we work hard to do our part to make it happen. I tell myself that this time next year we'll be in a new place with him. Hopefully that new place will be better. Until then we'll just try to enjoy what there is to enjoy.

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Maddox and Mom

2010-05-26T20:30:00.000-07:00

Sorry about the quality.

7 Months

2010-05-23T21:57:00.000-07:00

One month ago Maddox was in the hospital. This week his doctors wanted to admit him for yet another respiratory illness. Maddox and I drove to Fort Worth on Thursday with bags packed just in case his pulmonary doctor thought it would be better to have him fight this bug in the hospital. Our Pediatrician had felt like he should be admitted, but I went to the pulmonary appointment ready to plead our case for taking care of Maddox at home. We have oxygen, nebulizer, pulse oximeter, apnea monitor, etc... all at home. We basically took care of Maddox last month while he was in the hospital for five days, so why not let us do it in the comfort of our own home? Well, the doctor agreed and after checking blood gases, giving steroids, and waiting for our home health company to deliver some extra tanks of O2, we were on our way back home. Maddox has been doing pretty well and despite the hassle of all the tubes and monitors, it is so nice to just be home. Maddox likes being here too, and gets to interact and play and just do his normal stuff, which I feel is much more conducive to getting better.

My mom and two youngest brothers drove down to help for a few days, and it has been a party. Laundry, dishes, and meals have been taken care of by my mom, kids have been played with, gone swimming, and to a movie, and I have been able to take naps, and just enjoy having good easy-going company. LOVE IT!!

Maddox is now seven months old. He weighs over 12 pounds, is 23+ inches long, and is paralleling the underside of the growth curve - meaning still not on it. His GI doc seems to be a little bit fixated on the growth curve being our main objective, but I totally disagree. She has Maddox labeled as a "failure to thrive" baby, which really doesn't even begin to describe the issues he is dealing with. I don't think she really takes into account that he is a cardiac baby, which should have it's own category and growth curve in my mind. The good thing is he is continuing to grow and gain weight and is in proportion for height, weight and head circumference. I made sure to point out that this was a good thing. His cardiologist agrees with me, by the way.

Maddox is also working on PT, OT, and Speech/Oral Motor. He is working on sitting up by himself, rolls from side to side easily, and rolled completely by himself from his tummy to his back today during his PT session!! He transfers toys from hand to hand, plays with toys, sucks on stuff, kicks his legs like crazy, holds his head up when on his tummy(for a little while), is SOOO smiley and interactive, talks to us, tries to sing, laughs and just is a sweet little man. He has come a long way, and his therapists are all very encouraged. His helmet is sometimes a stumbling block, but I am sure he'll get used to it more and more and will just continue to improve. I sometimes find my self unsure of what a healthy baby would be doing at 7 months, and tend to compare Maddox to Tracen, which makes him seem further behind. Tracen was walking at 9 months and was just so quick to do so many things. I have to remind myself that Maddox has really come so far and is going to catch up, but to compare him to anyone else is not at all helpful. He truly is one of a kind!!

Tuckered Out

2010-05-05T14:57:00.000-07:00

Playing is such hard work!!

Such a goof!

Maddox is trying to get used to his new encumberance. We are working up to wearing the helmet 23 hours a day. He has been soaking his shirts with sweat. Perfect timing -summer in Texas. He is a trooper and so good natured about all the crap we put him through.
He's still on oxygen, but just a whiff. I'm sure we could let him be off of it more than we do, but we have a hard time getting a good read with the monitor and so are erring on the side of caution. I got sick around the same time Maddox did, about a month ago, and we are both still coughing. It is getting better though. Whatever the virus was, was a doosey!!

I'll try to post about our special weekend with family soon.

Back home

2010-04-27T15:34:00.001-07:00

Maddox and I made it home from the hospital around 10pm last night. We brought a few new accessories with us, which I hope we'll get rid of soon.

We have four big tanks, two medium sized and two travel sized O2 tanks. I really hope we just use the oxygen this week, and then can have the medical supply company come back to pick up all the extra gear.

For now, we are happy to be home and spend the day in pajamas. Maddox is happy to be in clean clothes not used for wiping all of his nasty secretions on.

Hopefully May is a healthier month!!

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Still Here

2010-04-24T14:16:00.001-07:00

Maddox is still in the hospital and will most likely be so until next week sometime. We are hoping to be discharged by Tuesday.

He has continued to need oxygen and breathing treatments around the clock, and is also getting prednisone, which is a steroid, in addition to the steroid he recieves through the nebulizer twice a day. At this point they assume he just has a respiratory virus, that due to his fragile health, hit him harder than it would a healthy child. Initially they were concerned that his heart function had suddenly changed and was leading to pulmonary distress, but after doing an echo and seeing his heart only slightly worse than a few months ago, the doctors felt more confident that he just caught a nasty bug.

Jeff and I have been taking turns sleeping at the hospital. Jeff's sister Kelli, who flew in coincedentally the same day Maddox was admitted, has been helping with the kiddos at home. Jeff's mom flies in today and we are just so grateful for the timing of things. So nice to have some family around.

My parents and two youngest brothers as well as Jeff's dad are coming out Friday to be here for Maddox's baby blessing. We have been so excited to have family come to visit and to take Maddox to church for the first time. He was going to be our first child to be blessed at church - the others being blessed at home for various reasons. We have been looking forward to this special and meaningful experience and being able to share it with our ward family who have done so much for us since August. Once again, things are going to be a little different than we planned, but whether we bless our little Mad-man at church, at home, or in the hospital, we are looking forward to having our family here to celebrate our Miracle Maddox.

I've been thinking about Maddox's life, about the crazy things we have done to get him here and keep him here, and I am just amazed at some of the things we have experienced. Although I hoped we would be at a different point with Maddox by now, I look back and see the tremendous growth he has made and the insurmountable obstacles that have been overcome. His life is nothing short of miraculous, rivaling those miracles found in the New Testament performed by the Savior himself. The blind received their sight, the lame walked and even the dead were raised. No less amazing is that Maddox lives today. God does not cease to be a God of miracles. He lives and loves us and has power to do all things.

I know I have questioned Maddox's purpose in past posts, and lately have been reflecting on some things my mom said several months ago. She said maybe Maddox needs to go through so much to help others come unto Christ and gain a knowledge of Him and His atonement. At the time that really bothered me - my sweet innocent baby boy was the sacrifice made so people would get their act together and choose to do what was right?! I felt cheated and angry. As months have gone by however, I have been reminded of another sacrifice- that of our elder brother and His mother and father, and it has given me a small understanding of the role of Mary. My gratitude for and understanding of the Atonement has increased ten fold. I'm not calling Maddox a savior, but I have recently come to feel peace about his reason for being here. I know that Maddox is a special spirit spent for a specific purpose. What greater purpose could there be than bringing his brothers and sisters to a knowledge of the gospel of Jesus Christ. As difficult as some days are watching this sweet babe of mine suffer, I know there will be and end to it. I know his body will be healed, and I know many other hearts, mine included, can be healed in the process. What a blessing it is to know my Maddox.

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6 Months

2010-04-21T20:13:00.001-07:00

Happy 6 months Mad-man!!

Too bad we have to celebrate at the hospital.

Maddox has been sick coughing non-stop and not breathing so well, in fact his sats were in the 70's today. Normal people are in the high 90's to 100, and Maddox is normally 94-95, so he was not doing well and was not his usual pink self. He was admitted to the hospital but we hope will be out in a couple of days.

I'll try to update more tomorrow, but need to get some rest as I am under the weather myself due in part to stress and lack of sleep.

Please continue to pray for Maddox. We are all being pushed to the edge of our endurance and need an extra boost. A BIG THANK YOU to our awesome friends who just jump right in and pick up the slack when we are completely unable to take care of ourselves. You guys have literally saved us and kept our family going. Love to all of you!!

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Maddox 5 1/2 months

2010-04-16T10:12:00.000-07:00

I seriously don't have the time at the moment to write the lengthy post I need to write, but here is a video of the Mad-man from a couple weeks ago.

He had a tooth come through this week, so I am sure you can imagine the way the past few days have gone. Poor Maddox. He doesn't ever seem to get much of a break from things.

Anyway, enjoy.

Mondays

2010-04-12T21:46:00.000-07:00

Today we saw the pediatrician, the occupational therapist and spent 4 hours at the ER.

What a way to start the week!

Don't worry, everyone is okay. Just the usual Maddox drama. This kid just doesn't get enough attention apparently.

I'll try to provide more details of the past couple of weeks soon...hopefully.

Hope your monday was swell.

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5 months

2010-03-28T19:12:00.002-07:00

Absence makes the heart grow fonder...right? I'm sure you have all been sitting and waiting, your lives put on hold as you anxiously await the next installment of the Dixon Adventure.

Okay, maybe not. The world revolves around us only in MY mind.

Anyway...

The Dixon Adventure continues...

this chapter is entitled: VOMIT

Seriously, this kid can puke!! It has been a constant battle the past few weeks. He has had good days when we have gone down on the volume and/or density of his formula, but we have been constantly changing things up in an attempt to help him keep his food down and also gain weight. He has thrown up as many as 15 times in a day, but averages between five and ten times. It is definitely affecting his weight gain and has caused him to fall off his growth curve. He's still not on the actual curve, but had been closing the gap until the last few weeks.

Despite this, we have been working hard on tummy time, and various exercises to strengthen him and get him moving a little bit more. He is making progress. It is beyond frustrating to me however, that there is a three month waiting list with Physical Therapy through ECI(early childhood intervention), which is the organization we have been trying to work with. Three months is more time than we can waste. We are already starting off months behind and I'm sad that we are adding to it. It has felt at times like others have written Maddox off as being too far behind, or due to his extensive list of challenges, not worth helping since their ability to really make a difference was slim. I'm sure that is just the Mama Bear coming out in me as I am fighting daily to keep this baby alive, and wanting so desperately to give him a real chance at normalcy. I want those who know him to have that desire too. I want the doctors and therapists to be determined to help him and work with him with the assumption that he is normal and will catch up. He has proven so many people wrong from the beginning and I don't want to underestimate what he can do and what the Lord can do in Maddox's behalf. I finally was able to get a list of private companies to contact for a physical therapist to come and work with him. Hopefully we can get some more help soon and really get things going.

Jeff and I took Maddox to have a head consultation with a company that makes the helmets a couple of weeks ago. After driving over an hour, going through the whole exam, getting his picture taken from various angles, and doing so while Jeff, Maddox and I all felt horrible, our insurance informed us that this company was out of network and they wouldn't cover it. He definitely needs a helmet, so this past week I took Maddox to another company that makes orthotics and prosthetics and they are in network with our insurance, got us in, set up an appointment to have his head shape measured by laser and we should have the helmet within a week of doing so. This company is about 15-20 minutes away, which is SOOOO much better. I'm very excited about getting this going. I know there are some of Maddox's issues that I cannot do much about, but if I can make him look good, BY GOLLY, I'm gonna!!

Just a side note: the day jeff and I went to north Dallas for the first head consultation, Jeff had taken the day off of work and we were excited to make a day of it by stopping at the outlets, and Ikea. Jeff and I both woke up not feeling well and Maddox had been throwing up like crazy for a few days, but we decided to go anyway. The whole day we felt progressively worse, until things really reached their peak while at Ikea. Both Jeff and I made multiple trips to the bathroom and I finally made a mad dash to a bathroom to throw up and ended up going into the only open one available, which happened to be the men's restroom. By the time we made it home that night, both Jeff and I felt HORRIBLE, nauseous, achy, feverish, etc... We woke up the next day feeling so much better, but it was definitely a disappointing end to a day we had been looking forward to. BLAH.

Okay, back to the Mad-man...
He is five months old, as of the 21st, and has been attempting to eat rice cereal, applesauce, bananas, and drink milk and pedialite-all EXTREMELY small amounts, but we are giving him chances to use his mouth. He is still on continuous feeds, which makes it impossible for him to really feel hungry and want to try to eat, but we are working on it. The oral feeding is also hindered of course by the constant vomiting, but I am praying hard that he grows out of that soon. VERY SOON.Maddox is becoming part of the family and the kids are fans. They are very helpful and recognize a lot of his cues, especially the ones that say puke is imminent. Brynna has even started monitoring his feeding pump and pushing certain buttons when needed. I'm going to miss her when she goes to kindergarten in August.

Tracen and Maddox have a love-hate relationship. Tracen just wants to be in Maddox's face, kissing him, talking to him, playing(aka: twisting) his arms and hands, inspecting his diaper and feeding tube, and helping to get his pacifier back in his mouth. Unfortunately, all too often Maddox has only to see or hear that Tracen is too close and he starts to wig out. I hope some day, in the not too distant future that Tracen's regard for Maddox is returned. We might have to close the gap between their weight a little more for him to feel really comfortable with Trace, but hopefully some day they'll be good buds!

Here's a little story of the two little boys through pictures.
Enjoy.

Love them!

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Not in Control

2010-03-07T08:49:00.001-08:00

Sorry for the long silence. Things here have been busy. First off, we have had strep and various other germs plaguing our home. There have been fevers and snotty noses, antibiotics, the humidifier being rotated from room to room, breathing treatments, vomiting(maddox), etc... oh, and we've been potty training Tracen (we must be crazy). I've spent countless hours on the phone making appointments, confirming appointments, rescheduling appointments, refilling prescriptions, hunting down doctors to fax in prescriptions, calling to see if prescriptions are ready since we only have one dose left for the day, when we need three, etc...

You get the picture.

(don't you love the hospital masks)

We also found out this week that Maddox is even more unique than we thought.

Oh Goodie!

Maddox has an extremely rare, or possibly never seen before thyroid condition.
The whole family will be getting blood drawn and tested to try to help give the doctors a better picture of what we might be dealing with.
If you had seen my oldest get his throat swabbed for strep this week, you would know that we might very seriously discuss sedating him in order to get him through having his blood drawn.

Lots of fun!

The thyroid is very important in growth, fertility, and brain development. So, the doctors have been very clear that Maddox will likely have some mental retardation. We already figured that he would have growth issues and would most likely be sterile due to his chromosomal disorder, so those are no surprise. We also found out that he is already slowing down in his growth length-wise and so we'll most likely start the daily shot of growth hormones before
he is a year old.

Guess who is going to have to give him the shot every day for the next 17 years?

Oh, and did I mention that he is going to be getting a helmet in a couple weeks to fix his head shape? Yeah, we are having a great time around here.

This poor baby continues to vomit, a lot. Sometimes five times a day, and it is awful to watch and hear him retch and then struggle to breathe for the next 15 minutes afterwards. I have washed almost every blanket we own this week due to the throwing up.
In the wee hours of the morning one day this week, I ran in to Maddox's room to find Jeff helping him to sit up and clear the spittle from his mouth. He was working to breathe, but as soon as he saw me, flashed one of his big grins. It just about broke my heart.
Mad is seriously such a love, and when he's not screaming from pain, or vomiting,
he is a happy and sweet little guy.

To say that life is a struggle would be an understatement.
Jeff and I both go through days, or weeks, where we are angry, tired, sad, and even apathetic. It is too hard to think about the future, and yet everything we do is done to give Maddox the best future he can have. I really wonder some days what kind of life that's going to be.

I really don't feel like I've completely accepted that this is my life - that I have no control over anything, and in reality never did. It's a hard adjustment.
The only thing I have control over is my attitude, and lately I've used that mentality as an excuse to be angry and miserable. Please don't think too badly of me. I am trying, but the weight of this new life is crushing at times.

I know Heavenly Father has a plan for Maddox. I know his life has purpose and there is a reason why he is here, but I haven't had any strong feelings about what he is here to do. I have struggled with the feeling that sometimes we suffer just because. And yet I know that this life is but a moment. We are here to prove ourselves, and the party is later.
As my dad says, " Nothing is wasted in the economy of the Lord." - meaning that these experiences have real purpose and are not for nothing. They are not the whim of some Zeus-like deity, but the plan of a loving father.
I know Maddox will be healed, but it might not be here.
I guess I just need to remind myself that this life is but a moment,
and all I have to do is endure it well.

Happy Four Months

2010-02-21T20:38:00.001-08:00

Our little Mad-man, as we like to call him, is four months old today! This is how we are celebrating:

Having three siblings is a great way to be introduced to germs. The older kids have all had runny noses and coughs and it is impossible to completely eliminate contact between Maddox and the sickies. So now he has a cold and is retracting more today. I'm grateful we have this nebulizer at our disposal. The home health nurse came today and said his lungs sound clear, so it's probably just upper respiratory stuff. His nose is full of gunk, but too high up to really reach with a nasal aspirator. I'm going in search if saline drops in our house today. He was also weighed and...drumroll... 9lbs 13oz!!! That is exactly four pounds more than two months ago when we came home!

In the two months he was in the hospital he dropped down to about 4lbs and made it back up to birth weight(5lbs 13oz) by the time we got home. We are pretty excited that he is almost 10 pounds. He isn't even on the growth chart yet, but he is definitely gaining well.

Maddox is tracking better and has started reaching for toys. You can see the concentration on his face as he trys to use his arms and hands. It is good to see some progress in that area as well.

My mom is here this week to provide some relief for Jeff and I. Maddox needs held more hours of the day than not, and since he is hooked up to his feeding pump ALL day, I can't really just put him in the baby carrier and go get stuff done around the house. We also try hard to not let him cry since it burns so many calories that he cannot afford to lose, which means that if we set him down awake or asleep we usually have about 15 minutes before he starts screaming. Needless to say an extra pair of hands is greatly appreciated.

So, here we are, after four months with our little man, and life will never be the same. We have seen and experienced things we never imagined, learned and adjusted to difficult realities and have come to know one special little boy who has been preserved very literally by our Father in heaven. We don't know all that Maddox's mission on this earth entails, but we do know that he has touched our hearts, strengthed our faith and is our very own living miracle.
We love you Maddox! You are our sweet little fighter!

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One day at a time...

2010-02-08T20:58:00.000-08:00

Isn't that how it is for all of us...we just have to take things a day, hour, even moment at a time sometimes.

Maddox is definitely making progress. As of today, he weighs 9 pounds! As far as length goes, I don't trust any of the measurements that have been taken. He either shrinks or grows some ridiculous amount compared to the last measurement. I think he is somewhere between 20 and 21 inches, but really, what does it matter. Maddox will be starting growth hormones in the next year or two anyway, and hopefully by then we'll be able to get more accurate measurements.

Today we spent 5 hours at doctors' appointments. He saw the GI doctor, who was pleased overall, went up on his prilosec(reflux med) and increased his hourly feed volume. There is still blood in his stool, but we are hopeful that the longer he is on the Elecare(hypoallergenic formula) the better things will get. Today he took about 11 mls of milk by mouth in about 3 minutes, no problem. To give you some perspective 1 ounce is 30 mls. Recently he has been taking more like 3-5 mls at a time orally, which is next to nothing. The bottle he uses is about 2 inches tall and measures each ml. We have a goal to have him drinking 20 mls per oral feeding in the next 6 months. I am sure we'll make that goal if he builds on what he did today, but you know how it is...2 steps forward, 1 step back. We'll just take it a day at a time.

Maddox also saw the pulmonary doctor who, last week, prescribed a nebulizer and two medications, Albuterol and a steroid, to be used twice a day, for who knows how long. Maddox got a chest x-ray today and his lungs don't really look different from almost two weeks ago. We will see in a month if the daily breathing treatments make any sort of difference. Maddox also got his monthly synagis shot to help prevent RSV. This is one expensive shot, costing more than $1000 per dose. Hopefully our insurance will cover one more dose for March.

We have added more medication this month, which is discouraging, but hopefully temporary. We went up on three different meds and added two completely new ones to the mix. With each medication there are risks of side affects and drugs interacting with one another, but so far Maddox has been tolerating all of them fairly well, except for the iron. We now give the iron to him in small increments so as to not overwhelm his sensitive little tummy.

I have been letting Maddox do an adapted tummy time, and I really think he has more neck/core strength and head control in just the past week. Sometimes I get hung up on the fact that he is 3 1/2 months old and fairly far behind other kids his age. It is hard to accept sometimes that he is on his own schedule and is going to do and learn things in his own time and own way. I know that is the case with all of us, but just more so with individuals who have some significant issues. I don't think I have fully accepted the fact that I have a special needs child and that the long term affects of some of the things he has experienced are out of my control and cannot even be fully known at this point.

As a teenager I honestly always felt that I would have a child with disabilities. I felt like my first son, who was speech delayed, might be able to fit the bill. In fact when I found out that my first child was developmentally delayed I cried and felt like he would never be normal. He is now in kindergarten, doing well, loved by his teacher, enjoying school, and very much a normal and darling little 6 year old boy. I have to believe that Maddox will be the same, for all intents and purposes. If I dwell on the thought that he's not going to be able to progress and his life has no possibility at normality, then I might just stop trying. Some days it is hard to see the point in some of the things we work on. In the back of my head I'm saying, "he's only going to go back to square one when he has surgery again. is this treatment really going to do anything to help? is it worth spending so much time on this(oral feeds, different therapies) when I have three other kids and a house full of laundry who need my attention too? Poor Maddox. Of course he is worth it. Just some days it is hard to look into the future with a positive attitude.

The older kids have been great overall and just love their little brother. Tracen makes Mad grin and is constantly asking if he can give him kisses or touch his foot or head. So sweet. Maddox just watches the craziness unfold as the other kids chase each other around the room, sings loud songs, and just run wild. Maddox likes it, most of the time, and can even sleep through it.

So, one more week down and we are making it! I am sure I will look back someday and be so grateful for the experience, and SO grateful that this part is over.

Heavyweight Champion!!

2010-01-27T21:13:00.000-08:00

Maddox is 8 pounds!!!

We are pretty excited! Three months old and finally the size of a normal newborn. We're making progress!

This week is full of appointments. 4 in total.
On Monday Mad and I spent many hours in the hospital waiting for and eventually getting a Gastric Emptying Scan. He went over 4 hours without food before the test, which is a lot considering that he has been on continuous feeds for the past two weeks, but he just slept through it for the most part. Thankfully. The scan consisted of them putting sugar water into his tummy and then he spent the next hour flat on his back under a CT scan type of machine, where they recorded how his stomach emptied, hence the name. It came back normal, which is good.

Today Maddox got a chest x-ray and then went to the cardiologist. His x-ray didn't look so hot, which is concerning, but his EKG looked good, his oxygen saturation was 98-99 and he had gained a pretty good amount of weight. The cardiologist was going to talk to our Pulmonary doctor to see if he wanted Maddox to start breathing treatments. Not quite what I wanted to hear, but overall he was pleased with how maddox was doing and said that we could go six weeks before seeing him again.

On Friday we go to the Endocrinologist, where Maddox will have to get blood drawn. Poor baby. They need to test his thyroid levels and then they might possibly do some genetic tests concerning his reproductive system. Yeah, Maddox is going to love it!
Friday afternoon the ECI(early childhood intervention) people are coming to our house, and I have to say I am excited to have them come and show me what to work on with Maddox. He doesn't have much neck strength or head control yet, so it will be very helpful to have some things to try.

Overall Maddox has had a good week. He has been a much happier baby overall and is smiling and starting to coo at us. I love it! His siblings love him, but sadly, from a distance. They do ask to kiss his head and his feet and we let them, but due to constant colds, they mainly have to stay away. This is particularly hard for Tracen. Trace just wants to talk to "Baby Maa-iix" as he calls him and is always trying to involve Maddox in playing with the collection of Star Wars figures that Tracen is currently obsessed with. It is pretty cute to watch.

Maddox is on an apnea monitor, which is especially helpful at night, but there have been quite a few times where the ear piercing alarm sounds in the middle of the night and both Jeff and I are bolting it to Maddox's room. So far it has only been the sensor stickers on his chest falling off or moving out of position that has set off the alarm, but it still gets my heart pumping.

Jeff has spent a lot of time on the phone with our insurance company figuring out the insane number of claims and bills that are pouring in. Surprisingly, Jeff and I are starting to come to terms with the fact that we may never be completely caught up with medical expenses. We'll just pay as we go and I'm sure the Lord will provide. We have been so blessed with Jeff's job, good insurance, friends, neighbors, ward members, and family all helping so much...somehow it will all work out. The Lord sent us Maddox and I am sure He will give us a way to take care of him.

Three Months

2010-01-22T18:14:00.000-08:00

Maddox is now three months old. Despite the fact that he still looks like a newborn, he is making progress, albeit slow, but progress just the same. We have been home a month, but man, that was a long thirty days.

This week Maddox had a swallow study done and he passed. A swallow study requires the patient to swallow barium while being monitored by x-ray to determine if they are aspirating or have physiological problems inhibiting their ability to swallow. With Maddox they used a normal nipple instead of a slow flow one and also used the thinnest barium concoction instead of thicker fluid, the thicker actually being easier to swallow. I was completely surprised that he took about thirty swallows, paced himself well, and had no problem with it. We hadn't tried PO(oral) feeds since he had his little "I'm going to stop breathing" episode. I have been terrified to even try it. By the way, Maddox has continued to throw up almost daily, but hasn't had anymore apnea spells. Anyway, since the swallow study we have been attempting to PO feed once a day, but we've been less than successful. I think it might be the type of bottle nipple we are using, at least I hope that's what it is. It is going to be slow going, but I am hoping that we'll be able to lose the G-tube by the time Mad is one.

We have also been to visit our GI doctor who put Maddox back on continuous feeds with the hope of plumping him up. I think it is helping, but we have had to go down a smidge on the hourly amount due to Maddox's vomiting, and when I say vomiting I'm not talking about spitting up. Maddox retches like I do. It is a full body experience and he tries so hard to keep it down, swallow it, etc... but fairly unsuccessfully. Sad to watch. They also tested his stool and there was blood in it which means that his milk protein intolerance is still an issue, even with his hypoallergenic- $40 per 14 oz can- have to order online because no stores carry it- formula. Maddox had been spending a great majority of his time screaming in pain, likely due to the issues in his little tummy. Just in the past two or three days have we noticed a difference. He has been sleeping more, screaming much less, and spend his awake time smiling and trying to coo at us. It has been so wonderful to see his real personality come through instead of watching him be in so much pain and literally not be able to do ANYTHING about it. We are praying this isn't a temporary change. I feel like we might just be able to handle the doctor visits, the meds, the g-tube, etc... as long as little Maddox isn't screaming in pain all day.

We have been taken care of so well by so many people since we've gotten home. They have had Brynn and Trace over to play for a few hours each day. Others have come to hold Maddox so I could take a shower or a nap, or get out of the house. Many have brought meals, cleaned my home, called to check up on us, etc... It has been amazing. Maddox, and all of my kids for that matter, belong in part, to our neighbors, friends and ward members. I know that we were led to Texas, to Jeff's job, and very literally, even to the house that we live in. Heavenly Father knew the kind of help that we would need to get through this experience, and He knew where we needed to be and what people we would be surrounded by. Tender mercies.

One quick experience that I am writing down mainly so I remember it:
Maddox gets his last(or first) meds for the day, at midnight. He is on seven different medications right now given at different times throughout the day. We have his med schedule and dosages written on a pad of paper that is stuck to the fridge. I look at the pad only occasionally now since I've basically gotten the hang of the medication regiment. Well, the other night at midnight, I had drawn up all his meds, had put the first syringe in the his g-tube, and had even un-clamped the tube so I could push the med in, when I had a clear thought come into my head that it was the wrong medication. I paused for a second, thought, "No. I've done this so many times, I know what I'm doing." Then again, very clear, "It's the wrong medication." I paused again, clamped the tube, pulled out the syringe, and sure enough...it was the wrong medicine. The one I was supposed to give him was his heart medication to keep his blood pressure down. It's pretty important stuff, and I could have skipped one of his three daily doses and instead given him an extra dose of reflux medicine. Now, it was midnight, and I was tired and not thinking too clearly. I know that that thought was not my own. I know that I was receiving help, the kind of help I am praying for constantly throughout each day. The past month has been difficult for me and there have been some very hard, dark, and even hopeless days. This specific experience was a very poignant reminder that Heavenly Father had not forgotten me. I am so thankful to know that He knows me.

**Please pray for my sister in-law and brother in-law, Kara and Jason who lost their baby last week at week 24-25 of pregnancy. They will be burying their sweet little boy this weekend. We are praying for them to know that the Lord hasn't forgotten them, and neither have we. **

Maddox

2010-01-17T22:34:00.001-08:00

Just a few pics of our little man.

Home Again

2010-01-07T12:28:00.000-08:00

Maddox was released from the hospital on Sunday afternoon. Grammy and Grandpa Sherwood came Saturday to help and they each took a turn staying with Maddox at the hospital to give Jeff and I a chance to go on a date and to be able to get some much needed sleep.

Maddox was home for all of a few hours on Sunday, before pulling his G-tube most of the way out. There is a balloon under the skin, which is inflated with water, that holds the g-button in place. This balloon had sprung a leak and deflated, thus allowing the g-tube to pull out. So, back to the ER we went, got a new G-tube button put in place -the old one had attached to the skin at one point and needed to be clipped- started his feeds again, gave him his meds, and got home by 2:30 am.

My Dad left Monday to go back home and my Mom is staying until next Wednesday. I dread her leaving, but I'll enjoy her while I can.

Maddox has been in a lot of pain and spends a lot of time screaming. We think a lot of his issues are GI related. We had an appointment with the pediatrician today and he agreed so we are getting in to see a GI specialist soon. Maddox had an appointment with Endocrinology yesterday and they went up on his thyroid replacement and scheduled another appointment for the end of the month. We will also be meeting with a nutritionist to help us fine tune Maddox's nutritional and caloric needs. The goal is for Maddox to be gaining weight consistently and follow the growth curve. If he falls off that curve then he will most likely be needing more heart surgery.

We will also be starting physical, occupational and speech therapy soon, which I am grateful for. The different therapists will come to our home and work with Maddox. I have been very nervous about doing anything like tummy time or other normal baby stuff with him due mainly to the big thing sticking out of his stomach. He is still very tender around his g-button, and his significant reflux issues make me not want to have him on his stomach. We never lay him down flat anymore, not even to change his diaper, but always have him laying on an incline with his head up. This being said, the physical and occupational therapists will be very helpful in strengthening his muscles and utilizing his body like he should be. I am really excited about the speech therapist who will help us with oral feeding. First we have to do a swallow study to make sure that everything is where it should be and to ascertain whether or not Maddox aspirates when he swallows. Then we'll be able to slowly get him feeding orally, or at least that is the goal.

There is just a lot to do for this little boy and it is pretty overwhelming to be in charge of all of his care. It is heart-wrenching to hear him scream his little heart out in pain and not be able to do much more than give him a little Tylenol. The doctor told me today that even Tylenol shouldn't be used for chronic pain due to its affect on one's kidneys. Poor little boy. I wish I could give it to him around the clock, but I guess that's not the answer. Hopefully the GI doc will know what we need to do to get his tummy feeling better and give him the chance to feel good and act more like a normal baby. Right now we are just living a day at a time.

I shouldn't complain though. We have much to be grateful for. For all intents and purposes, Maddox really shouldn't be here, but is, only because it is part of our Father in Heaven's plan that he should be here. My cousin Josh and his wife Amanda lost their little boy this week, who had been healthy, but had fallen and had bleeding in his brain, and who died during surgery. This is their second son to return to his heavenly home. Their first born is 4 years old and has lost both of his little brothers. Really, who I am to complain. The Lord has a plan for us and often times it doesn't make sense. The only thing we can do is try to live happily and make it through the challenges we each will have. Please pray for Josh, Amanda and Zach. They will be burying little Tyson this weekend next to his brother Andrew who died less than three years ago from SIDS. Our challenges pale in comparison. This life is a test, and not an easy one.

Ringing in the New Year

2009-12-31T13:48:00.001-08:00

Well, our first week at home has been full of stress. Last night takes the cake though as Jeff and I performed CPR on Maddox, called 911, rode in an ambulance and were admitted to Cook Children's Hospital in Ft. Worth. It was the scariest thing Jeff and I have ever gone through. I'm not sure how much more of this we can take, in all honesty.

We have spent the past week, up most nights, taking turns with a screaming and vomiting baby. Jeff took Maddox to the ER Christmas Eve because he was retracting more while breathing. We have had three home health nursing visits, a cardiologist appointment, a visit with our pediatrician, as well as blood tests drawn, and several trips to the pharmacy, all in the past week, only to end up back in the hospital. We will most likely be here for a few days trying to sort out what is going on. Jeff and I think it is all related to his feeding issues. Maddox has bad reflux and a milk protein intolerance and so yesterday when he stopped breathing he had been starting to throw up, but somewhere in the process he stopped breathing, clenched his jaw and started turning blue.
I started screaming for Jeff to come and call 911, and then we started doing chest compressions and trying to breath for Maddox. We did it for close to a minute, but he started to respond and while Jeff continued to do some chest compressions, I got a nasal syringe and started trying to suck out the vomit from the back of his throat. By the time the paramedics got to our house he was breathing but still blue and lethargic.
We are hoping and praying that we can figure out the reflux problem and help this poor baby to tolerate his feeds so that the vomiting is no longer an issue, and hopefully he won't have another episode like last night.

Seriously Jeff and I are close to having a mental breakdown. Please continue to pray for Maddox that he will grow and develop and heal from the ordeals he has already had in his short life. We need the Lord's help to be able to handle the challenges of our new life with Maddox.

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Two Months

2009-12-22T09:18:00.000-08:00

Maddox turned two months old yesterday and today took his first ride in a car and an airplane to celebrate!!

Aside from having to be patted down by security, nervously getting his first round of meds by Mom and Dad without hospital personnel supervision, and having several poopy diapers changed on Mom's lap in front of strangers, Maddox enjoyed his first morning out of the hospital.

We are now officially in Texas!!!

We made it!!!

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Packing Up

2009-12-20T14:27:00.001-08:00

Last night I wrapped up bottles of frozen breastmilk in newspaper and packed them into an insulated box.

We are taking that box on the airplane. I can't wait to see all the funny looks we get as we check a large box, labeled "human milk" on tape partially covering the word "blood" (the box is from the blood bank, but lactation uses it to ship milk as well). That in addition to our bag of medications, feeding pump and box containing an IV pole, should help people know where we've been the past few months.

Anyway, that's one more thing checked off the list. Now we just need Jeff to get here, Maddox to pass the car seat test, receive a month supply of medications from a delivering pharmacy, pack the rest of our belongings, and make it through one more day of instructions and we'll be set to leave. I can't believe we've made it to this point.
Now the real fun begins!

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I'll be home for Christmas...

2009-12-19T09:29:00.000-08:00

...as long as the weather cooperates. And it had better.

Maddox is doing well and we have been busy getting everything ready for us to be discharged and catch a flight at 6am Tuesday. Jeff is flying out here tomorrow, we'll finish everything on Monday, and then we're off. I can't wait!!

Maddox is doing well with the G-tube and tolerating the bolus feeds during the day and the continuous feeds through the night.

He eats every three hours and right now he is getting each feed over an hour period. The goal is to decrease that by small increments, to about 30 minutes. Once we get home we will start working more on oral feeding with a bottle and I'll finally be able to try nursing. Nursing at this point will be more for bonding purposes than actual calories, and the milk he gets through the pump and bottle will be heavily fortified breast milk, aka: rocket fuel.

The feeding pump we are taking home, was delivered yesterday, with a month's worth of supplies. Getting used to all the equipment at home and being the ones in charge of everything for Maddox is going to be an adjustment. I hope we figure it all out without making any major mistakes. Maddox is going home on several(7) medications and recieves them at four times during day through his G-tube. There is a lot to remember and I'm trying not to stress too much about all the work this will add to every day, but I'm sure it will take a little bit of getting used to.

We are starting our "new normal" life and I am nervous about all the details, but know that the Lord has been leading and directing us since the beginning of this journey, and that He will continue to do so. He has a reason apparently for wanting Maddox here, so hopefully He'll help Jeff and I to not mess up too terribly as Mad's parents.

We are so thrilled about being able to be together as a family after three months apart. We have much to celebrate. What a wonderful Christmas this will be!

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Going Well

2009-12-15T12:28:00.001-08:00

Maddox came through his surgery well today and is now chilling in our room on the floor. We had a bed reserved in the CICU for after surgery just in case he had a hard time breathing on his own after the surgery. But he has done well and we can avoid moving all of our stuff to the ICU for one night.

Here he is without any tape or tubes attached to his face!!

Aside from the constantly furrowed brow and worried expression, he looks like a normal and beautiful baby boy. Maybe Maddox and I will get Botox sometime together to fix our wrinkles. Ha! What a treat to see his whole face!! Love this boy!

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número dos

2009-12-12T07:06:00.001-08:00

Tuesday Maddox is headed to the OR for the second time.

This time for a hernia repair and G-tube placement. A G-tube or
Gastrostomy tube is placed into the stomach from the outside and is a semi-permanent fixture. It will hopefully help us get good calories into our little guy, who has been steadily gaining small amounts this week. We are giving him rocket fuel right now to help beef him up. Formula and some additonal powder of some sort are added to my breast milk in specific volumes to give Maddox some pretty high calories. It is slowly working. It will be so helpful to get the NG tube out of his nose, which contributes to his gagging and vomiting. The vomiting has mostly disappeared most likely due to the Prilosec Maddox is taking. He is still not really taking much orally mainly because he tires too quickly. It isn't really worth burning more calories than he is taking in during an oral feeding due to the work it takes to suck and swallow and breathe. All these things are work for Maddox.

Maddox got an echo today, which he basically slept through, much to my amazement. His last echo, which was about a week post-op, was a less than positive experience and Maddox was miserable. His echo today showed great news - his mitral valve regurgitation(leakage) is now mild versus the moderate-severe seen at the last echo. Everything is looking good. A couple of weeks ago we fasted and prayed specifically about this mitral valve and that the Lord would make it improve because surgery had failed to do so. I know this improvement is once again attributed to my Father in Heaven. What a wonderful Christmas gift. And speaking of Christmas, if all goes to plan, and we have faith that things will work out, Maddox will be discharged around the 21, which means we will be home as a family of SIX for Christmas!! I'm going to be praying like crazy that it really happens. One more week.

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Six Weeks

2009-12-04T20:14:00.001-08:00

Maddox is doing well. He was moved out of the CICU on Monday and is one step closer to home. Right now we are working on feeding him and putting some fat on him. We are trying to bottle feed him, but he's been having a hard time with it. He has a great suck and swallows fine, but it doesn't take long before he vomits it back up. It's going to be a process and we'll most likely be going home with the NG tube, which honestly sounds okay to me. It'll be so much easier to give him his meds through the feeding tube as opposed to making sure he swallows them all down, and I'll know how much milk and how many calories he's getting. We are still going to work hard on the oral feeds, but the goal right now is to put some good weight on him however we can. He still weighs about 4 1/2 pounds, so he has some catching up to do. He is getting all of his medications orally except for his Lasix(diuretic) which is still given through IV. The goal for the next few days is to make that PO (given orally) as well.

Maddox has also had some thyroid issues. When he was first born his thyroid was really low, so we have been treating it with Synthroid, which is a thyroid hormone replacement. Now his thyroid is way too high, so we are going to stop the Synthroid for a few days to see where his actual thyroid is at. The hope is that lowering his thyroid will help him gain weight and possibly help him to be less tachycardic(fast heart beat).

In addition to his congenital heart disease, Maddox has a hernia which will need surgically repaired, overriding head sutures, and a chromosomal issue. He is one tough cookie, this baby! The head sutures were thought to be fused and require surgery to separate, but the neurosurgery team came and decided that the sutures were just overlapping. Good news. The general surgery team decided that the hernia repair wasn't emergent at this point and could wait up to a couple of months before needing surgery. Also good news. We've known about his chromosomal problem since a couple weeks after the fetal intervention, but weren't quite sure what it would mean for Maddox's future. Maddox is Turners-Mosaic, meaning he has some XY chromosomes and some XO or just X chromosomes. Girls get Turner's Syndrome and it can be severe and result in mental retardation, infertility and unique physical appearance, but a boy can't have full Turner's otherwise it wouldn't be a boy. Hopefully that makes a little sense. Basically the issues Maddox could potentially have are growth and fertility related. He might require growth hormones for him to be average sized and he could also be sterile, but both of these issues sound very minimal at this point. The doctors have all told us that basically men who are Mosiac are very normal and often wouldn't know unless they got their blood tested for it. We are just adding it to the list of things that make Maddox such a miracle.

Life on the floor is very different than life in the ICU. It is good prep for being at home. I hold, change, rock and comfort Maddox. I've given him some of his medications, attempted to bottle feed him, and done some chest PT, meaning I beat on him to help clear his lungs to make it easier for him to breathe. I'm learning a lot and really enjoying being Mom to my little honey! He's a love!

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I GOT NO STRINGS ON ME!!

2009-12-02T15:46:00.001-08:00

Maddox is off oxygen!!

Look at that handsome man!!! It is amazing to actually get to see his little face.

I'll update all the details soon. I've been busy snuggling.

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Extubation

2009-11-24T04:56:00.000-08:00

Despite my belief that it wouldn't happen any time soon, Maddox was extubated yesterday. He traded his ET tube/ventilator setup for nasal canula/CPAP support, which means he is still getting oxygen but now it is continuous high pressure air flow up his nose with Maddox taking every breath and having to do more of the work.

He traded this:
(the little helmet/strap thing was put on in preparation for CPAP.)

for this:

It might not look better, but the fact that there is no longer a huge tube down his throat(other than the NJ tube which is how he eats) makes this new accessory preferable.

It is interesting that on Sunday Maddox was on pretty high vent support, having many stretches where he just wouldn't breathe unless the vent forced him to. He looked far from being ready to lose the ET tube. His nurse thought it was unlikely that they would pull the tube on Monday. We had a family fast for Maddox and, once again, we have seen, the hand of the Lord. My heart is full. Miracles happen and prayers truly are answered.

My sister Aimee flew to Boston yesterday! We spent some time with Maddox, and snuck in a movie too. We saw New Moon. I'm not sure it was meant to be a comedy, but our theater was full of laughing people. Seriously, some parts were hilarious!!Anyway, we had fun!

I am at the airport getting ready to fly home to Texas and then drive to my parents' home in Missouri to spend Thanksgiving and pick up Brynna and Tracen! I am sad to leave Maddox but I am ecstatic about being with my little family for a few days!!
That's too many emotions in one body. I am determined to have a wonderful time and am so grateful for my sister's generosity in coming here to watch Maddox and my sister Ashlie and my Mom as they are home watching a house full of sick children. You guys are awesome!! I know Aimee can give Maddox a good talking to if he gets ornery, but I'm praying he behaves himself and takes advantage of the holiday season to put on a little weight.

I hope you all have a wonderful Thanksgiving this week. I know I have so much to be grateful for.

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One Month

2009-11-21T16:09:00.001-08:00

Happy One Month Birthday Maddox!!!!

Today you celebrated by sleeping the whole day and attempting to suck on a binky! We'll see if we can make your two month birthday a little bit more exciting.

This week has been full of weaning from medications and then increasing them again, adjusting vent settings back and forth, increasing calories, gaining and losing weight, and finding out that Mad's mitral valve repair didn't hold like we were hoping. They did an echo the other day and found that his mitral valve had moderate regurgitation, as opposed to the mild leakage that he had when he left the operating room. Pretty discouraging. We aren't sure yet what this means for Maddox's immediate future. If he is able to be extubated(take out the breathing tube) and handle it and is able to gain weight and grow then we'll just watch and keep an eye on that mitral valve. If he can't get off the ventilator and grow and gain weight, then it will be back to the OR to attempt to repair the valve again. There aren't any other options for fixing his valve right now, other than what they already tried, because Maddox is so small. The kid only weighs 5 lbs at one month of age. He isn't even up to birth weight yet. So, with this new information we are trying hard not to be discouraged. I feel like we are at a standstill, and that is frustrating. As Jeff says, now we have to adjust to the new normal. It takes a day or two sometimes to come to terms with the new situation, but, like everything, we get used to it.

We are fasting for Maddox and this specific problem tomorrow and will be asking our Heavenly Father to help the mitral valve to leak less. If he only has mild regurgitation there will be less fluid backed up in Maddox's lungs, which should enable him to breathe on his own without burning up all his calories so that he can grow and eventually leave the hospital and come home. It's a whole month until Christmas, and a lot can happen in a month, so I still haven't given up on the "being home for Christmas" goal. We are continually learning that the Lord is in charge and that with Him all things are possible. We are learning how to increase our faith and trust that there are blessings in store.

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Still Going

2009-11-18T20:40:00.001-08:00

Maddox is doing well and pluggin' along.

They have increased his feeds and calorie count of his milk, they've weaned on his sedatives, they are making him do pressure support sprints on the vent to prepare to extubate, and overall he is doing well. I've been able to hold him a few more times and have been changing diapers, giving sponge baths, putting on lotion, pumping my life away, and asking a lot of questions. The nurses, fellows and attending physicians have been so good about answering my never ending questions about everything Maddox is experiencing. I want to know as much as possible since soon it will be my responsibility to give him his complete care. TERRIFYING! Though I will say that I am definitely more comfortable with everything now compared to four weeks ago. I want to know when things are good and when he's having a hard time. I've gotten to the point where I basically understand the vent readings and where Maddox should be with his end titles and volumes, and what rates and pressures mean what.

I am so grateful for modern medicine and technology. Seriously, for being somewhat of a Luddite, I can say even though I don't understand how all the machinery works, I am beyond grateful to live in an age filled with life saving technology. Maddox wouldn't be here, but through the miracles of our Heavenly Father by means of modern medicine, experimental surgery, and very gifted and dedicated people.

The residents, fellows and many of the doctors are here non stop. They seriously never leave. I'm not sure when or if some of them ever sleep. It is amazing, but I tease some of them about their obsession with this place. I'm grateful for Maddox's sake and my own that they are so focused on their work, but I'm not sure I would be very understanding if it were my spouse who never left the hospital.

Thank you, thank you to all who have sent cards filled with encouraging and uplifting words, packages filled with goodies and entertainment, emails, texts, phone messages, etc... All have brightened my days and helped me to remember that life exists outside of these sterile rooms. A special thanks to Lisa who sent me this adorable and meaningful necklace. Love it!!

I am so looking forward to taking Maddox home, hopefully in a few weeks. Right now he just needs to eat and grow and gear up for pulling that ET tube out of his nose. I sincerely hope that he isn't permanently lopsided since one nostril has been stretched beyond recognition. He had such a cute little nose. Everyone assures
me that it will snap back and look normal eventually. I guess if not we'll just add it to the war wounds that he'll wear proudly. He's a fighter this little guy. I couldn't be more grateful for the opportunity to know him in this life and get to be his mom for eternity.

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Chicks Dig Scars

2009-11-15T19:40:00.001-08:00

Here's my little honey is all his manly glory!!

Maddox had an okay day today. He was having some issues with his blood pressure being too high, which is new for him. They increased his dose of milrinone(heart medication), gave him some morphine, methadone and adavan and that seemed to help some. Unfortunately, those drugs knocked him out so that he was less able to practice breathing. It is sometimes difficult to find the balance with the different medications so that he is comfortable and also working towards being extubated. We don't want to push him before he is ready, but just having the ET tube in can be another source for infection and we'd like to avoid that. The cultures they took 48hours ago came back negative, so he is off his antibiotics for now! Good news!

Our goal is to increase his feeds to put a little meat on his little bones, continue to give him diuretics to get the excess fluid off that is in his lungs and surrounding his ribs, do pressure support sprints to practice breathing, and prepare to extubate. It is nice to have goals that "we" -aka: Maddox- is working toward. We definitely have a few more weeks here, but Maddox is really making good progress.

Jeff left for home this morning.
Thanks to all our friends who watched and took care of Keyan so Jeff could be here for the past week. It was great to be with him and not go through Maddox's surgery alone. Hopefully the next time he comes out it is to take me and Maddox home!!

My sister Aimee is coming out here next week to be with my little man while I fly home to see my kids for the first time in what will be NINE weeks. I will spend a week with my family and then my sister and I will swap- she'll go to my parents' while her husband is deployed, and I'll come back to my home at the hospital. I am super happy to be able to see my Hubby and kids, but also sad and nervous about leaving Maddox. It will definitely put my mind more at ease just knowing my sister is here watching out for him. She is also a nurse and so should find the whole experience very familiar and interesting. Thanks Aim! I am looking forward to
my week out of the hospital,
smooching on Jeff and my kiddos!

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Before and After

2009-11-13T22:11:00.000-08:00

Before and after getting his chest closed. He's still looking a little rough.

Maddox started the day off by getting his chest closed. He handled it pretty well and only needed a little tweaking on his vent support and meds to accomodate the change.
They took him off the paralytic, but have him on narcotics and sedatives to help with the pain. He did have his eyes open for a while today and responded to our voices and touch. By tonight a lot of the swelling had gone down, so they took him off the diuretic drip and will do scheduled boluses of the diuretic to get the remaining fluid off.

There was a concern today at one point because his temperature was very low. It wasn't clear if this was due to the heating apparatus above his bed being shut off for a couple of hours while he got his chest closed or if it is possible that he could be showing signs of a blood infection. Due to the concern of a possible infection they took cultures of everything-blood, urine, secretions from his ET tube, etc... and sent them away to the lab. We should know within the next 48 hours if there is something going on. In the mean time he is on several antibiotics to kill off the possible infection.

Tonight before we left for bed he was doing well and they were going to try to start his feeds again since they had shut them off before he got his chest closed. We are praying that he stays nice and calm and just heals like he should with NO infections or anything extra to deal with.

We sure love our little Maddox and are so grateful to be at this point with him. He is such a blessing to our family. May the Lord continue to bless and heal you Mad, so we can go home together and introduce you to your brothers and sister. Can't wait to be a normal family again!! Keep praying for continuing progress!

Recovering

2009-11-11T17:43:00.001-08:00

Maddox is doing well. So far his recovery has been uneventful and we'd like it to stay that way. It is possible that they will close his chest tomorrow if they can get the swelling down enough. Hopefully through the night his diuretic will really kick in and he can get some of the fluid off. Today his urine out-put hasn't been quite what they wanted, but the doctors/nurses have also said that sometimes it can take a while for things to get moving again after surgery. His heart rate, blood pressure, labs, and blood gases have all been great so far. We are praying that he continues to stay calm and recover well.

Here's a video of Maddox from today if you aren't squeemish, but it's probably not for kids.

http://www.youtube.com/watch?v=GYf7ev4qKaw

We'll keep praying that the miracles continue and that Maddox makes it home for Christmas!

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Thankful

2009-11-10T18:43:00.001-08:00

This week we finally got to hold our little man. It was wonderful to cuddle with him, despite all the tubes and paraphenalia he needs to keep him alive.

It will be a while until we get to hold him again, but we are beyond grateful for the gifts of today and know that we'll be holding him again soon!

Here he is weighing a whopping 4lbs 6ounces. He's our beautiful little guy!!

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Miracle Maddox

2009-11-10T12:13:00.001-08:00

Maddox is done with surgery, off the bypass and doing well!!!!

They did the Ross Procedure, which involved replacing his diseased aortic valve with his healthy pulmonary valve and putting a homograft in place of his pulmonary valve. They also repaired his mitral valve...not a perfect fix, but should be good for a long while. Dr. Del Nido said Maddox came off the bypass machine just fine and that his heart was very strong. They did an echo and his heart function looks good. He also said that it could be 3-4 years before Maddox needs more surgery. It will probably be another hour or two until we get to see our little man. He will go back to the CICU with his chest open(sternum open but covered with plastic wrap stuff) due to swelling. They leave it open so they don't put any extra pressure on the heart and lungs. Once the swelling goes down they'll close him up. The next few days are pretty critical for Mad and he will be monitored very closely, but Dr. Del Nido was very pleased with how well things went.

We are just so full of gratitude for the blessings our Heavenly
Father has seen fit to give us. We know that we have again witnessed a miracle and are amazed at the experiences that we have had thus far with our little Maddox. Thank you for your prayers, for those who fasted and for your immense faith. We know that the doctors and nurses were led and directed and, to quote our friend Father Peter, "... whose healing skills, after all, are from the Divine Physician himself." Our hearts are full. We love you all and appreciate the strength you have shared with us. We have much to be grateful for.

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In Surgery

2009-11-10T08:17:00.001-08:00

Maddox is in surgery. We should be updated about every hour. As of the last update, Maddox was doing fine, they had opened his chest and he was hooked up to the bypass machine. Now the work begins. Please keep our sweet baby boy and the doctors in your prayers.

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Operating Room...here we come

2009-11-08T09:05:00.000-08:00

Maddox is scheduled for surgery Tuesday morning. Jeff is flying out here Monday night. Thank goodness. The thought of being here by myself, waiting for hours and hours and having to call Jeff back in Texas with updates is enough to make me go crazy. I'm very grateful we will be able to go through it together.

Maddox is holding steady. They are just trying to keep him calm and get him as many calories as he can handle to prepare him for surgery. This is going to be a difficult week, but hopefully once the surgery is done we will start on the road for home. We are praying the surgeon will be inspired, that Maddox's small body will be strong and handle the stress of such a long and challenging operation, and that he will heal and recover well. One of the difficult things we are dealing with is the uncertainty of how long he will be able to go without more surgery. Some of the things they will attempt to do will most likely be temporary fixes. His body will continue to grow and the parts and pieces they use will not necessarily last long or grow with him. It might only be 4 months before he has to go under the knife again.

We know that with the Lord all things are possible and if that if He wanted to heal Mad today without surgery, that He could. We know that because Maddox is here, and medically he really shouldn't be. We will continue to exercise our faith, that all will be well and that Maddox will indeed live a healthy normal life. It is sometimes difficult to choose to have faith in the face of statistics and data and the doctors' expertise, but we know who's running the show, and apparently He has a purpose for Maddox's life on the earth.

Please continue to pray for Maddox. His heart and ours are continually touched by the outpouring of love and concern for our family. I hope each of you know how grateful we are for the knowledge of the gospel, for the suffering of our Savior. I know that He has felt my pain and Maddox's. I know that He can heal all our hearts. We love you and will update after surgery on Tuesday.

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Quick update

2009-11-05T20:35:00.001-08:00

So we just switched rooms and have a different phone number from the one I posted.

New number: 617-355-9817

Also Maddox is going to be having surgery next week. We don't have a definite date yet, but the doctors feel that he has gone as far as he can go without surgical help. While this is what we were expecting at some point, we were hoping to miraculously get by without it, or at least have more time for Maddox to put on a few pounds. Apparently this is what Heavenly Father will use to give Maddox
the "healthy, normal life" he was promised in his blessings. The surgery will be long, intense, and not completely
straightforward due to the fact that both the mitral and aortic valves need serious help and that there are several options to choose from. One of which requires using Maddox's own pulmonary valve as a replacement for the aortic valve. I'll post more when we have a date and know more of what, when and how things are suppsed to go.

Today they switched out Maddox's breathing tube because there was a serious leak which was preventing good ventilation.

The new tube they put through Maddox's nose, which honestly surprised me. The tube doesn't look like it should fit. It is enormous compared to his little nostril.
Hopefully now he won't be gagging quite as often.
My poor baby !!

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2 Weeks

2009-11-03T20:48:00.001-08:00

Maddox is two weeks old tomorrow!!

It's amazing that 14 days can seem like an eternity. Time is different in this place. The rising and setting of the sun have very little meaning here. I feel as though I'm stuck in a time warp where I am moving in slow motion while life continues to move on around me. It is hard to believe that life could ever be normal after this, and yet that hope keeps me going.

Maddox is doing well and we are reminded daily that his life is truly a miracle. One of the cardiologists came to check on him today and asked why he wasn't riding a bike yet? I had to chuckle. Maddox has continually surprised them and although we still don't know what might be required for him to be healthy and lead a normal life, we do know that he is making great strides and that blessings are coming to fruition before our eyes.
Today they let Maddox practice breathing on his own for about an hour. He wasn't breathing completely on his own, but was initiating every breath, while the ventilator would boost each one and make it a good sized breath. They call them "sprints" when they let them do that for a while, and then give them a break by upping their vent support again. I am excited for Maddox to be extubated, but terrified at the same time. I am very comfortable with taking this part slowly. We don't want to extubate him too soon and then have to reintubate. Hopefully by next week he'll be off the vent, but I'm not in too big of a rush. Slow and steady wins the race, right?

He's totally chillin in this picture. He's such a honey!! Love this boy!!

For all who want to know, I can be reached at:
Maddox's room#: 617-355-9815
(we cannot use our cell phones when we are in the CICU due to interference with the machinery that keeps our babies alive.)

Address:
Alissa Dixon
C/O Center for Families
Farley 111
300 Longwood Ave.
Boston, MA. 02115

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Enjoying a good day

2009-11-01T20:27:00.000-08:00

Maddox is making progress. Today was a good day for him.They are continually working on weaning him off of his meds and ventilator support. It is a constant process of steps forward and steps back, but today we took steps forward.

Yesterday we had a little scare. The IV Maddox had in his head wasn't working and needed to be taken out. The nurses took it out, then a little bit later, after repositioning him, they discovered that the central line he had in his neck had come out and was just laying on the bed next to him. That meant he had no access to his medications and they weren't sure how long that had been the case. Maddox has been difficult to get an IV into and so pretty quickly the nurses called in the experts and had 6-7 people in the room buzzing around his little bed. I sat off to the side praying my little heart out that they would be able to get an IV in quickly. They first tried to get one in his head. No luck. They finally were able to get one in his foot. Amazingly he was able to maintain his heart rate and his blood pressure just fine, but they noticed that without the medication his profusion was not as good. His feet and hands turned a little more purple than pink, but soon returned to normal. They also decided to put a central line in his femeral vein(groin area) to replace the one that was in his neck. Overall he did wonderfully, but it was pretty nerve wracking.

Maddox smiled for the first time today. He did it several times and I luckily got a picture. He must have been having nice, drugged up dreams. Gotta love those morphine and methadone induced happy naps.

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Mother's Milk

2009-10-29T20:29:00.000-07:00

Today we reached another milestone in Maddox's life. He had his first "taste" of breast milk.

Of course he tasted it through a tube in his nose, so I'm not sure it counts, but at least the calories count!!!

Overall it was a good day for Maddox. They did an echo this morning and his ductus is closed and his heart is handling it just fine. His mitral regurgitation looks a smidge less severe, his aortic valve is still leaky, but his ventricles are squeezing well and overall the doctors were pleased with where he is for now. They took him off of the paralytic and a drug called fentenyl, which is a narcotic, and they put him on morphine and versed which have kept him pretty loopy today, but at least not paralized. He is working on breathing, and taking more and more breaths on his own, but still needs the ventilator to keep himself going. He was transfused again today, which I have been told will happen a few times a week. Not 100% sure why, but I think it has something to do with his size, and having blood drawn for labs many times a day among other things. His coloring looks good and his stomach is noticably smaller due to the drain. They aren't just letting him drain constantly, but they take a certain amount off every four hours. Hopefully at some point he'll be able to keep the fluid off on his own.

Jeff flew home today and Maddox and I are sad. I told Maddox that he has to behave from now on so I don't have to relay bad news, or events of hard days to his dad over the phone. Jeff hates that.

Hopefully we'll all be together again soon. We are still praying to be home by Christmas with Maddox in tow. One week down and we are making progress.

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Initiation

2009-10-28T15:50:00.001-07:00

We have officially been initiated into the Cardic ICU world. Yesterday Maddox decided to shake things up a bit. Apparently he didn't think he was getting enough attention. The doctors and nurses aren't sure what caused the following event, but thank goodness our nurse yesterday was Kim, who is very experienced and thorough. Yesterday morning Maddox's oxygen levels went down so the nurses decide to suction him. His lungs were full of blood, lots of blood, and his heart rate dropped quickly. They started chest compressions or CPR, gave him a paralytic quickly so they could ventilate him without him fighting them and shoved him full of meds to get things under control. He lost a lot of blood and needed a blood transfusion, the second in two days, and immediately had a cardiologist in here to do an echo. His heart looked the same as it had before so they assume the whole event was not caused by his heart, but possibly by something clogging his breathing tube, which led the pressure in his left atrium to increase, his heart to hemorrage and his lungs to fill up with blood. Anyway, no one is quite sure, and I really don't undertand anatomy well enough to visualize the process.They immediately brought in the echmo machine, which is a heart/lung bypass machine, and happily did not need to use it. Anyway, he is up on all of his medications, which we were previously weaning and we have taken a few steps backwards. Unfortunatley that is the name of the game around here.

He had a pretty good night and today he has done okay too. He spent a few hours in the interventional radiology department getting a semi-permanent drain put in his stomach to help with all the fluid, and to attempt to get a picc line in, which is basically a longer term IV that goes either into his heart or right next to it. They have tried a couple times already, one time resulted in it being put in an artery that bled and bled and him needing a blood transfusion. The fact that he is on a high dosage of blood thinner adds to his high amount of bleeding. Unfortunately today, even with the guidance of ultrasound, they were unable to get the picc line in. They want to get the line out of his neck which has already been in for several days and shouldn't be in longer than a week due to the increased risk of infection. They are now talking about going in and doing it surgically either when they do heart surgery or just doing surgery for that purpose alone. We have no immediate plans for heart surgery, so I'm not sure what they'll end up doing. Needless to say, life has been a little stressful.

Jeff is leaving tomorrow and I am not looking forward to being here alone, especially if more days like yesterday are in the future, and I have to assume that just by nature of being in the ICU, yesterday is not likely to be our one and only rough day.

For FHE this week, Jeff and I decided to do a little decorating of Maddox's room. Well, at least the glass door of his room.

I LOVE the poster Jeff drew and sometimes can't believe all the talents my Hubby has!

Maddox really is showing his superhero abilities!! We are praying for things to settle down and that he'll make up the ground that was lost yesterday.

So happy 1 week birthday Mad!!! We have miles to go, but we are so grateful that we have you to share this journey with.

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My New Companion

2009-10-28T13:10:00.001-07:00

This is my new buddy.

We spend a lot of time together. We make a pretty good team and can be really productive.

I just wish my new friend didn't want to hang out in the middle of the night.

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I just want to SQUEEZE him!!

2009-10-26T22:52:00.001-07:00

Seriously this little boy holds my heart in his tiny hands. I can't wait until we get to hold and snuggle him. For right now are making due with holding his hands, rubbing his feet and head, wiping the spittle from around his mouth, and just being close to talk and hum to him.

Tonight he seemed like he was in pain. He kept scrunching his face up like he was about to cry, but due to the tube down his throat, it was silent. I was about in tears as I watched him.

The thing that seemed to comfort him was holding onto my finger. If I tried to move my finger or take it away he tightened his weak grip. I could have stood there and held his little hand all night if he wanted me to. He did the same thing to Jeff and looked at us with his big sad eyes while we talked to him. Seriously enough to break my heart.

While we were talking to and saying goodnight to Maddox tonight his eyes look so wise and full of experience. I felt such a connection to this baby, though he is less than a week old, and I haven't even held him yet, I can't imagine life without him. What a blessing he is. Maddox Revere, you are loved!

Here is a little video of our sweet heart!

http://www.youtube.com/watch?v=KkRfAORT41I

Mellow

2009-10-25T19:50:00.000-07:00

Things are going well here in Boston(knock on wood) and Maddox has made some progress. Instead of tapping his tummy they found a diuretic that works for him and we have definitely seen an increase in urine output. His stomach actually measured about 3-4 cm smaller this evening than it did last night, and Jeff and I could tell this morning just by looking at him that his fluid had gone down all over. His little face is so much thinner and overall he looks better.
He is also off the paralytic and doing well, which is a big step. They increased his blood thinner to help with the circulation in his legs. The leg that they did the balloon cath through had some blockage which led to his right leg looking a little purple and his foot looking dark purple or nearly black. Frost bite anyone? It was a little scary. Anyway the blood thinners are helping but also causing some changes in his platelets, so they are watching things closely.

Because there is less fluid in his stomach they have also come down on the pressure for the ventilator, meaning that they are letting his body do a little bit more work now to breathe and he is handling it just fine. As of today there are no immediate plans to do open heart surgery, but we are just watching and waiting and hopefully the doctors will get a better idea of what needs to be done as the week goes on.
At this moment Jeff and I are just grateful to see some progress and to be able to be here with Maddox. He sure is a handsome little man, and we are so proud of him. Today I watched as the nurse changed out some of his tubing and he kept opening his eyes to look at her, almost as if he was trying to make her understand that he was annoyed that someone was bothering him. He looked so sad and uncomfortable and I seriously wanted to cry. When he has open heart surgery I know he will be in lots more pain. That will be difficult to watch. I'm getting used to seeing all the tubes and machinery and his tiny body surrounded by pumps and monitors, but I'm not sure anything will really prepare me for what he will look like after surgery. I guess I should probably wait for that until we have a plan from the doctors.
Right now I'll just enjoy the
good days and be thankful
for the progress he is making.
I sure love this little man!

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Slow But Sure

2009-10-24T08:30:00.001-07:00

Maddox had a pretty good day yesterday. They lowered the dose on some of his major medications and he was handling it just fine. They also took him off the medication that keeps him paralyzed for a while and he opened his eyes and squeezed my finger and responded to us some, which was wonderful to see.

When they were suctioning his throat and changing out his breathing tube he started to fight it and wasn't handling it well so they had to put him back on the paralytic. This was no surprise, but it was exciting to be able to interact some with our little Maddox.

Yesterday they also made the decision to let his ductus(opening in the heart that normally closes after birth) close and take him off the medication that was keeping it open. By allowing it to close and watching how his body responds, they will know what surgical steps they should focus on for right now.
His fluid is still an issue and they are trying hard to get him to urinate more and hopefully eliminate some of it that way, but so far he hasn't done much in the way of voiding. Jeff just got back from talking to his nurses and they have decided to "tap" him which means drain off some of the fluid. He had some labs come back that showed his kidneys are starting to be affected. The last thing he needs is another organ to be thrown into the mix. They really aren't sure why he keeps filling with fluid, but it is not good. We'll be praying specifically for his body to respond well to the draining and that he'll quit developing all the fluid. We have to remember this is a long process and there will be steps forward and steps back, but it's just not fun to watch your baby take those steps.

For all of you who have wondered about my recovery, I am doing quite well. I've been taking good medication, been up walking and pumping, have taken a shower and am feeling pretty good most of the time. My incision looks good and I have been sleeping fairly well. All things considered, my body is doing fine. The worst thing was throwing up the day after the c-section. That was pretty painful, but there's no holding back when you've got to vomit.

Anyway, we are definitely surviving, but please keep praying. Thank you all for you kindness and concern and for your faith. We will keep trusting in the Lord and praying that He will continue to honor the blessings that we have received.

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Day 2

2009-10-22T20:23:00.001-07:00

Maddox had a bit of a rough day today and needed to be put on more medication to help keep his stats where they need to be. He also has fluid in his stomach again, which the doctors don't really understand. They are going to keep an eye on the fluid to see how it affects his lungs and his kidneys and at some point will probably drain it, but they don't want to until they really have to. His aortic and mitral valves are now both leaking and it appears that surgery is on the horizon. Right now the doctors aren't quite sure how to approach things and are still wanting to watch and wait for a little while. They don't think they'll do surgery tomorrow, but most likely very soon. This little guy has a lot of things stacking against him, and it is difficult to understand all the ins and outs of his medical condition and how it keeps changing.

The highlight of the day however was that Maddox got a blessing and was again promised to lead a healthy/normal life. It will most likely be a LONG road, but our hope for all being together for Christmas is still a possibility. We know that Heavenly Father has something in store for Maddox's future and both Jeff and I have felt the Spirit confirm to us that Maddox is going to make it through this.
Now our job is to continue to have faith and rely on the Lord and wait and see what tomorrow brings.

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He's Here

2009-10-22T06:55:00.001-07:00

MADDOX REVERE DIXON

Our Miracle Maddox was born at 12:08pm October 21st, weighing in at 5lbs 13oz, we think. They gave us a quick number in grams and we attempted to convert it over. We are saying around 6 lbs.
He let out a nice cry when he was first born and then the neonatologists intubated him. His lungs have been squished for months due to all the fluid in his tummy and his big heart and he isn't able to breathe on his own yet.

He spent over 4 hours his first day of life having a balloon catheterization done to help with all the pressure in his heart. It was successful though he had a rough time through parts of it. He now has two stents in his atrial septum and a better sized aortic valve.
One of the biggest problems right now is his lungs. It is going to take some time for them to develop and be able to work. Right now the ventilator is doing all the work of breathing for him.

He had an uneventful night last
night for which we are grateful. He is heavily sedated and is hooked up to 6 medication pumps to keep him paralized, and help all his levels be where they need to be. It is crazy to see the amount of machinery that surrounds his little bed. The monitors, pumps, ventilator and other equipment fill up his entire room.

We are so grateful for this sweet boy and for the true miracle that his is. We are so grateful to our Heavenly Father for the blessing of getting to be Maddox's parents. We recognize His hand in this whole process and are just so thankful for our knowledge of Him and His Son.

He's Trouble

2009-10-18T07:23:00.001-07:00

Maddox has decided to start being a little mischevious a tad bit early. After months of being head down, this crazy boy has decided to turn breech. He was head down at my ultrasound on Thursday and breech at my ultrasound Saturday. Unfortunately a c-section is in my future. I guess this might be Heavenly Father's way of making sure Maddox gets here safely. I'm a bit disappointed, but I'm sure I'll adjust. I was hoping to be able to at least try the other way, but it might have ended in a c- section anyway. Now we can skip all the contractions and go straight to the Operating room. Thank goodness my honey is here to be with me. Wednesday's the day!! What a week this will be!

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Hospital Life

2009-10-16T20:10:00.000-07:00

Well, we finally have a date for Maddox's birth! The plan is to induce Wednesday afternoon after draining his and my fluid again.
Can I just say how much I am looking forward to the draining process. Actually I'm having some anxiety about going through it again, and don't think I haven't asked about the possibility of doing it after I get an epidural. The answer. NO.
I guess I'll survive and this time Jeff will be with me, although he might be holding my hand while he sits with his head between his knees to keep from getting sick. My sweet guy is not a fan of needles, or bodily fluids for that matter. I can't really blame him.

Jeff gets here tomorrow afternoon and I am giddy!! It's been four weeks and I'm excited to see him!!! It will be nice to have a couple days to hang out before Maddox joins the party, but I'm excited to meet our little man and start the next phase, although I will admit to being nervous about all that is coming.

The last four weeks, while being lonely and challenging, have been filled with a lot of meaningful and sweet moments. I have been shown so much love by so many people here and have been watched out for and served in many ways.

Just last night two sisters from the ward I have attended a few times, showed up with a vase of flowers and took me out to dinner at a restaurant NOT within walking distance of the hospital. It was delightful and so kind of them. I felt so much Iove from these women I hardly know. I have also been so touched by the doctors, nurses, and employees at the hospital who have gone out of their way to make sure I have what I need and to provide some human interaction. I basically spend most of the day alone, so those moments have helped me to feel almost normal.

It's an interesting experience to live in a hospital. There are many different kinds of people experiencing and watching their children experience various types of health issues. I have seen children with heart conditions, broken bones, cancer, unique aging diseases, those who are wheel chair bound and, those with mental retardation. You name it, this hospital's got it, and yet no one is that unique or weird or different. There are rich and poor, educated and ignorant, religious and agnostic, and yet, in this atmosphere there is a visible constant, a great equalizer... Trials.

No one is immune to the difficult things that are part of this mortal life. Sometimes we feel like no one else can relate to us, like no one else knows what we are feeling or could possibly understand the pain we are in. False. Look around. Life is hard and there will be clouds and storms that will plague the skies of every life. How can we see the suffering around us and not feel moved to do something? How can we not try to lift each other up? I wonder why I haven't been more willing to do so. Do I really think I am that busy or that doing the laundry is more important?

A hospital can be a place filled with much grief and strain and yet full of compassion, service and charity. I have already seen and experienced some of both. It is such a blessing to have seen so much good being done by so many, and to have felt an increased desire to follow their example to love and serve others around me. That has been one of the lessons I have learned so far during this experience. I must open my eyes and heart to others.

I want to thank all of you for good that you do in the world. My hope is to be like you and more like my Savior, Jesus Christ, and not let this experience be in vain, but that I might learn and be able to show and teach my children how to love and serve those around them.

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Preview Pic of Maddox

2009-10-05T08:28:00.000-07:00

This is Jeff here. I know that Alissa can't post photos as she is at the hospital, so I decided that I would post a little picture of Maddox that they performed for Alissa. They had a 3D imager that they were using to see if there were any physical defects with our boy and they gave us a number of pictures of him. I liked this one the best and so am sharing it with everyone. The quality is not as good as the original but oh well. Cute isn't he? I think he is a mix of Brynna and Trace.

So they may be pushing his birth out to 37-38 weeks which is full term and is great!!! He will be considered full term if so and this will make his recovery and endurance so much the better. What's frustrating is that I can't plan anything! My mom came out to help with Keyan a week and half ago but now that the doctors keep pushing it off, she can't stay out here forever because they have a struggling business that she needs to help with. So it seems that I will have to have her go home without being able to watch Keyan while I am in Boston. It's good that she has been here for insurance just in case I have to leave on a dime.

Thanks for everyone's support and prayers.

I love you Alissa and miss you much!

Draining

2009-10-01T05:39:00.000-07:00

Yesterday was a fun day!! I have been having serious amounts of rib pain due to the very high level of amniotic fluid in my ever increasing belly.
Yesterday at my appointment they said I had reached the severe level and so we needed to do something about it, meaning I needed to be DRAINED!!!

I had to lay with a plastic straw in my stomach, my uterus contracting hard around it, for 30 minutes as we filled up two liters with my internal juices. Lots of fun! Then it was Maddox's turn. Another needle was put in my stomach and then into his abdomen and over 200ml were removed from his little swollen tummy. I really hope we don't do that again. Towards the end I was biting hard on a rag to get through the last few minutes while they pushed and pulled the needle in and out trying to get the rest of the fluid. There was no pain killer folks, and really it wouldn't be too bad if it was quick, but I was laying there for at least 45 minutes not able to move. I'm glad it's over!

I was then sent up to the labor/delivery floor to watch my contractions, which I was having regularly for a few hours. They were basically just braxton hicks contractions and weren't causing me to dilate, so they eventually let me go back to my cosy little dorm room in the Children's Hospital which is connected by a bridge to the Brigham and Women's Hospital. All in all it was a successful draining and I feel much better as I'm sure Maddox does.

Maddox is doing very well and it is possible that he could be done with one surgery after birth. It is possible that he'll need additional surgeries, but the cardiologist said that if he responds well to the first one, that might be all he needs. YIPEEEE!!!! We are worlds away from where we were a month ago. The changes that they made to Maddox's heart during the fetal intervention are helping his heart to get BETTER! It is slowly improving, which is a miracle, and one that the doctors here are recognizing as such. Pretty amazing! I also found out from my OB/GYN doctor here that it is possible that I could deliver Maddox the good old fashioned way and not have to go through a c-section. If Maddox doesn't handle labor well, then of course we'll do a c-section, but it might be possible for me to avoid being cut open, which would be great and would really help with my recovery and being able to focus on my little man after he's born. I'm absolutely willing to do whatever we need to do to get him here, so we'll just wait and see.

I am very happy that I came back up here and know that Maddox and I are in good hands. It is pretty amazing to look back over the last few weeks and see how the Lord has blessed us and directed us to know what to do. This experience has been full of growth and learning and I know we're not done yet, but I am so grateful for the opportunity to see the hand of the Lord so clearly in my life. Thank you so much for all the prayers and fasting. We still have a long way to go, and I would ask you to continue to pray. Our Heavenly Father truly hears and answers our prayers and through Him all things are possible. Miracles do happen and we feel so blessed to have experienced them first hand.

34 WEEKS!!

2009-09-28T09:50:00.000-07:00

We are making progress!

I have been here in Boston over a week now, sleeping at kind people's homes, and spending a lot of time on my own. It's been completely bizarre to have HOURS on my hands with nothing to do. I've finished a few books, worked on some sewing projects and spent many hours at the hospital, which is where I am now living, starting today. It is a real change from being at home with my crazy kids running around, but honestly I'd give anything to be able to do just that right now. I miss them and my sweet hubby!

Maddox is doing well. The fluid under his skin has basically gone away, which is wonderful! He still has fluid in his abdomen, but they will remove that right before they do the c-section to make it easier for his lungs once he's born. His heart is slowly making changes and improvements. I am thrilled to be at this point in our adventure. I am FULL of amniotic fluid which is making me very uncomfortable, and allowing Maddox plenty of room to swim. He is very active now, which I have enjoyed overall. It's almost like he is a different baby. The doctors are pleased with how well he is doing, and we are planning on making it to 36 weeks. I don't think they want to go beyond that however, which sounds good to me. I'm just hoping my ribs can hold together for two more weeks.
More to come later!

Back to Boston

2009-09-15T18:13:00.001-07:00

After serious thought and prayer we have decided to go back to Boston to bring little Maddox into the world. I will be flying out this weekend or early next week and will be there alone until Jeff flies out for the c-section. We have no set date for the c-section and will just be waiting and watching to see how long we can go before getting Maddox out. There is a ton of fluid, not only in Maddox, but amniotic fluid as well that is increasing my risk of going into preterm labor. At my appointment today Dr. Thigpen said that my chances of going into preterm labor was 100%! YIPEE!! I always tried to be an over-achiever. Anyway, he said the sooner I can get up to Boston the better. Seriously, you should see my stomach...he said there were probably GALLONS of fluid and if my water broke,to watch out. Great. Now I'm going to go get on a plane and pray the whole way that contractions and water breaking can wait until I touch down in Boston. Dr. Thigpen also said that Maddox probably looks about as pregnant as I do, due to the amount of fluid in his little belly. His stomach measurement today put him at 39 1/2 weeks along. He is just so swollen and will probably lose about 2+ pounds in water after he is born and drained of all the fluid. That is very common in babies with hydrops. I know how uncomfortable he must be, but he keeps moving and his heart keeps beating and he just keeps hanging on. He's our little fighter. During the ultrasound today he was making breathing motions which is great! We have also seen him stick his tongue out, suck on his thumb, swallow...all those little things that haven't meant too much in the past are now such sweet peeks at our precious baby boy.

I will most likely be a resident of Boston for 3-4 months while Maddox has surgery and becomes healthy enough to come home. My parents are coming to get Brynna and Tracen this weekend and take them back to Missouri with them for the duration. Keyan and Jeff will stay here so they can continue to go to work and school. I am hoping that they have some fun manly bonding time.
This is so beyond anything that I have ever imagined doing and I am sad that I will be away from my beautiful children and loving husband for so long. It is going to be hard, but I am just so grateful for a place to go where Maddox has the best chance of survival. I know that going to such great lengths is not the answer for every family. I was reading a blog of a heart family today who felt prompted, after much prayer, to not go the surgery route with their baby and just brought her home to spend as much quality time with her as possible. I feel very strongly that we are also being led and directed in our actions concerning Maddox. My sweet mother has shared many scriptures with me of late that have really touched my heart and are so applicable to the trial of faith that we are going through. She reminded me of Nephi, who went back to Jerusalem to get the plates, and had to try several times before being successful, who was..."led by the Spirit, not knowing beforehand the things which (he) should do." But he had faith. He knew that the Lord would bless him for being obedient and following the promptings he received. I'm not trying to get all preachy, but the scriptures have brought much comfort to me during the past few weeks. I been strengthened and reminded over and over of the nature of God, of the power and necessity of having faith in Him. Faith has always seemed like such an ambiguous principle to me, but it is truly a choice and requires action.

I continue to be touched by the many kindnesses that are being shown to our family right now. It is fairly overwhelming, but we are so grateful and are making notes for how best to serve others in the future when our life has slowed down a smidge.

One More Week

2009-09-10T19:17:00.000-07:00

It's been one week since the fetal intervention procedure in Boston, and little Maddox is still going! The fluid has returned, and the shunt that was put into his heart to allow blood to flow through the upper chambers of the heart seems to be clogged, but he's still going. His heart looks better than before we went to Boston, and we have definitely bought ourselves a little time.

I have been having tons of Braxton Hicks contractions, and so have been taking it easy, but the doctor didn't seem to be overly concerned. Maddox has been moving quite a bit, which is a change for him. Before the procedure was done I hardly felt him, but I have felt him much more since. He seems to have decided that he likes playing footsie with my ribs. Gotta love that!!

I have started my "three-a-week" appointment schedule and feel like I should just roll out a sleeping bag at the doctor's office for the next month. The kids are being bustled off to many kind people's homes, but are feeling displaced and unsure of life. All three have been grumpy, disobedient, and tired. I've been feeling the same way. Tonight Jeff said that he was just ready for all of this to be done. Seriously. I wish we could fast forward to six months from now and find out what happened, but the waiting and just constant stress of things is starting to wear on all of us. I hate even saying that due to the fact that just last week we witnessed miracles. How quickly we forget. Despite hard days, we are still very hopeful and are reminding ourselves of the many blessing we have and are receiving.

We are specifically asking in our prayers now for the fluid/hydrops to go away. It is possible for this to happen if the heart can function well enough. The hydrops is still a big problem since it is making it hard for Maddox's lungs to grow.
I just keep thinking that maybe at our next visit with the doctor, all the fluid will be gone, his heart will look great and we'll be good to go. It's sometimes hard to think about the months of care in a NICU that are on the horizon. Oh, my sweet little baby. I just wish I could fix this. Isn't that what moms are supposed to do - kiss it and make it better. We do feel like we have done everything we can for Maddox by going to Boston. Now we wait and we pray.

Honestly prayer is probably the most helpful thing since it is through prayer that we can be led and directed and know what to do and where to go. This little babe of ours has people of many faiths and beliefs praying for him. It has been very touching to hear nurses, and doctors say they will pray for us. In fact, one of the main doctors we saw in Boston said, that the fact that Maddox was looking better was a miracle with a touch of fetal intervention. I love that he and others there were recognizing the role that our Heavenly Father plays in life and in their profession. My brother Nick served his mission for the LDS church in Boston, where he met and became good friends with a Catholic Priest, Father Peter. They have great theological discussions and just mesh mentally. Nick told Father Peter about our situation and he has enlisted an order of Nuns to included us in their prayers. They have hours devoted to prayer each day. HOURS. Can't get much better than that!! Father Peter lives with his Sister and they had flowers delivered to us while we were at the hospital. So sweet, and I don't even know him.
My parents sell corn regularly to a Baptist man who had our family put on his congregation's prayer roll. We have had our names put on the prayer rolls at several temples. It is humbling to know all the faith that is being exercised in our behalf. Baptists, Catholics, Mormons, and others are petitioning a loving Father for help for our unborn baby. There is great strength in that, and great comfort too. There are good people in the world. Many.

So, here's to another week in the womb. We are hoping to get to at least 34 weeks, but I've set my expectations high and am saying 35-36 weeks. One more week of praying...we'll see what we can accomplish!!

Maddox did great!!!!!

2009-09-03T12:58:00.000-07:00

They performed the procedure today starting at 12:30 PM. Here is what they did as much as I can recollect and heard from the doctors.

They first gave Alissa an IV and placed special leg socks on Alissa so that she would not develop blood clots in her legs during the procedure. They then wheeled her away from me and placed her in the operating room. They removed some of the amniotic fluid from her abodomen so that they could turn Maddox so he was facing up towards her belly. They then put her under general anesethesia (however you spell that word) and started the operation.

First they placed a needle in the womb, into Maddox's abdomen and extracted the fluid called hydrops from his abdomen. Hydrops is a sign of heart failure, basically when the blood has no where to go, the body has no place to put the fluid and it develops under the skin and abdomen.

Second, they placed the needle in his chest cavity into his heart with a ballooon and made a hole between two chambers of the heart. They placed a straw like shunt in the hole so that it would not close off and so that blood would be able to pass between the chambers of the heart.

Third, they opened up the Aortic valve so that blood could pass through his heart. They then removed a little more fluid from his abdomen.

They said that during the procedures, his heart began to flutter and was not doing well for a minute or two but without them having to give him anything to help, it came right back and was beating just as well as before. The next hours then days then weeks are critical for our little man and we are so happy that they were able to do everything that they needed to do for him. They said they were shocked that they were able to do everything and said that despite his condition, he was surprisingly strong.

As you can probably understand, I was a wreck. They took her out at 12:30 PM and brought her back in a 3:45 PM. He was operated on from 1:50 PM until 3:00 PM. We may be in the hospital for the next couple days but are happy to have them monitor Alissa and Maddox.

Dr. Wilkins, Dr. Tworetsky, Nurse Donna Morash, and Laurie came in to tell me the news. Dr. Wilkins is a very solemn person and she first started out saying that Alissa was healthy and came out fine. I was waiting for the dreaded "but", but she went on to say that everything went smoothly for Maddox.

We are so grateful for the miracles that have occurred along the way for our little boy Maddox and know that the hand of the Lord is present in all this. Thanks for all your prayers and keep them coming as he is definitely not out of the woods yet. This is a positive step forward and we are so happy for all the support we have received.

Jeff

Alissa and Maddox are being operated on!

2009-09-03T10:15:00.000-07:00

Everyone,

This is Jeff. I know, weird, but since Alissa can't blog while she is under general aenesthsia or however you spell it, I thought I would update everyone. Alissa and Maddox are being operated on as we speak. Obviously, Maddox is taking the full brunt of the operation but please have both in your prayers.

We know the power of prayer and are grateful to everyone for their support. We have faith that everything will go well and that Maddox will be born healthy enough to have heart surgery and have a normal happy life. I am nervous as anything for both of them but trust that they are in good hands with the best doctors in the world who will be directed by the Lord.

Thank-you again everyone and I will post how the procedure went later.

Jeff

In Good Hands

2009-09-02T12:47:00.000-07:00

Jeff and I got to Boston yesterday around 1:40, took a taxi from the airport and spent the next 5 hours at the hospital talking with some amazingly talented and kind people. There were a couple of hours filled getting an ultrasound in the echo lab, and then I got an MRI, which was definitely the worst thing so far. There were four doctors in the echo lab looking at Maddox's heart, watching the bloodflow, and trying to really figure out what the problem is. I think they have diagnosed his condition as Hypoplastic Left Heart, but his own unique version of that. He does have a left ventricle which seems to be working to some extent, and his aortic valve is not completely closed like it was thought at first, and he has mitral regurgitation, which means that that the blood is leaking back and forth through his mitral valve. His left atrium is huge and is squishing the right side of his heart. They did say that his heart seems to be pumping strongly, which is a good thing. Today we also spent the whole day doing more ultrasounds, talking to more doctors and talking about all the risks involved with the procedure, and with a baby who is as sick as Maddox. There are many risks. Many. But we know what the outcome is if we do nothing. He is about as high risk as they have seen, due to the condition with his heart and the hydrops(fluid) that has developed in his belly, under his skin and now even in the placenta. All of these things make him a difficult case, but we are scheduled to do the fetal intervention procedure tomorrow at 11am.

We really feel so blessed to be here at the Children's Hospital of Boston and to be able to have some of the best doctors in the world working with us. Basically the procedure is going to happen like this: I will be under general anesthesia and Maddox will be under a certain amount of anesthesia as well. Once they have the baby in the correct position, a doctor will stick a large needle through my abdomen and into Maddox's heart, possible going through one of his lungs to get there. While she holds the needle in place other doctors will come in around her and use wires to open up the aortic valve, make a hole between the upper chambers of the heart, and also drain the fluid out of his stomach. All of this will be done while other doctors watch and direct things via ultrasound. Some of the doctors will be there simply to give advice and oversee the procedure. There is still discussion as to the order of things and what is going to be the most crucial thing to get done should they need to get out of there before they do everything if Maddox starts to respond poorly. We should be in the OR for a total of 2-3 hours but most of that is prep time and just getting the baby in the correct position.

It is pretty surreal to be here and to be part of something so unique and rarely done, but we have seen miracles come about to get us to this point. On Monday we were gearing up to have a c-section on Wednesday(today) when we got a phone call that going to Boston was an option. This is a miracle. We found airline tickets from Dallas to Boston for around $200 a piece the day before we flew out. This is a miracle. We were given a 50% chance of them even doing the procedure once we got here, and yet tomorrow we are scheduled for the operating room. This is a miracle. At the beginning of this week Jeff and I were basically planning a funeral for our little Maddox, and yet here we are, in the care of incredibly kind, intellegent, and talented people, who are giving us the best chance for our son to live. This is a miracle.

Before we left for the airport, my Mom told me to read Mormon chapter 9 in the Book of Mormon. I did so while sitting in the airport and was just so filled with hope and gratitude for my Heavenly Father. The whole chapter basically talks about God being a God of miracles. My favorite verse, verse 21 reads, "Behold, I say unto you that whoso believeth in Christ, doubting nothing, whatsoever he shall ask the Father in the name of Christ it shall be granted him; and this promise is unto all, even unto the ends of the earth."

We know that through the faith of so many, we are seeing the Lord's hand and that He is allowing the blessing we received to be realized. Please know how full our hearts are with the tender mercies of our Heavenly Father. We have been treated so kindly. We have been served by so many and our burdens have truly been lifted. We feel at peace with what is going to happen. We know that all will be well. We have been led and directed so clearly up to this point and we know the doctors will be inspired. Thank you all for your prayers, your emails, your phone calls, your gifts and cards, and just your diligence in having faith. We have felt the love of the Lord like never before. We love all of you and will continue to update as the procedure is done and during the rest of our stay in Boston.

New Hope

2009-08-31T20:00:00.000-07:00

Jeff and I are off to Boston early tomorrow morning to undergo a procedure on Maddox while he remains in the womb. The doctor that we spent some time talking to on the phone said that he wouldn't even say that they would for sure perform the intervention. So far they have done it a total of 9 times on babies whose hearts where just like our little guy's and only one survived. Not good odds, but honestly we feel that Heavenly Father has opened a door for us and we have to do this to allow Him to honor the blessing that I received from my Bishop. There were some very specific things in the blessing that we are really holding on to. One of them is that the doctors who do surgery on Maddox would be inspired. I know that there will likely be several surgeries throughout the next few months, but this will buy us time to let Maddox grow and be better prepared to survive outside the womb as well as go through major heart surgery later.

We are being blessed and led and are full of hope and faith that all will go well. My Mom flew out yesterday with the intention of being here for me to have a c-section this week, but none of us thought that Boston was even an option anymore. Our hearts are full as we recognize the hand of the Lord. What a roller coaster this is, but we are really so grateful for all the blessing that we are experiencing during this time.

Thank you for all the faith, fasting and prayers. We know that we are reaping the benefits. We love you all and know that the Lord is aware of us and each of you. He lives. The Atonement is real. Please continue to pray for us, Maddox, and the doctors that we see this week. We know that the Lord's will will be done and we have faith that all will go well.

Decisions

2009-08-28T16:58:00.000-07:00

Well, our doctors' appointments today were not pleasant and we are faced with decisions that no parent should have to make. My head aches with all the tears that I've shed, and my heart hurts as I've watched my sweet husband do the same.

We have had to talk to the cardiologist, neonatologist, and perinatologist and all were giving us important yet crushing information about the almost certain failure of any attempts to save our baby's life. His heart is failing, and he is too small to do anything about it. All the things that they can attempt have complications, most of them ending in severe brain damage or death. There is so much fluid built up in his body that his lungs most likely won't be able to work even on a ventilator, and the fluid is only increasing. They have given us the option of just waiting until he is gone and then have a vaginal delivery. Jeff and I both don't feel like we can just sit and wait for him to die without making some attempt to save him. We also don't want to cause him unnecessary pain. The plan at this moment is to do a c-section on Wednesday. All the doctors and surgeons will be in place to work on him at that point. There is definitely a possibility that he won't even make it to Wednesday. I have an appointment with the perinatologist on Tuesday and then they will check on Wednesday before the c-section to make sure he is alive. At this point I am praying that if he isn't going to make it, that he returns peacefully home before we start the process of sticking him full of tubes, poking and cutting. We really don't want to have to make a choice, so we are praying that Heavenly Father does it for us. We have done all we can do at this point and our hearts, minds and bodies are just exhausted and raw. This next week will be more difficult than any time in our lives and Jeff and I are both hoping that we will make it through.

Please pray for us, and that the Lord's will will be done, but that if Maddox isn't going to make it that he is taken home quietly before Wednesday. Thank you for all your thoughts and prayers in our behalf. We have felt your love and concern and know that we'll survive this experience because of our knowledge of the gospel and our trust in the Atonement of our Savior. We are so thankful for the sealing power which gives our little family the chance to be together forever no matter what may happen this next week.

Hanging in there

2009-08-25T20:28:00.000-07:00

We went to the perinatologist today and there is no change from last week. Maddox's heart and amount of fluid in his stomach look basically the same as five days ago. This is a huge blessing!! Every day we can hold on is another day for Maddox to grow and develop and be better prepared for the world outside of the womb. We are trying to find joy in small miracles and are counting this as one of them.

Still, the perinatologist, Dr. Thigpen, said that we would be having a c-section very soon, and possibly as soon as Friday, depending on what Dr. Roten, the pediatric cardiologist finds. If Maddox is born Friday, that puts him at almost 30 weeks, 10 weeks early, and combining that with his significant heart defect, puts us far from out of the woods. We are looking at months in the hospital if things go well. Slightly overwhelming.

We want to thank you for your prayers in our behalf. We have felt them and have been strengthened by them. Please don't stop. We know we are far from done with this roller coaster ride. We'll update on Friday when we know more.

Through a child's eyes

2009-08-21T08:23:00.000-07:00

We have been telling our kids about the situation with Maddox, kind of on a "need to know" basis. They have been asking lots of questions, which seems natural, and so basically know the gist of what is going on. Not fun for a five, four, and two year old.

Yesterday before I went to the doctor Keyan told me not to come home crying. I tried, I really did, and so did Jeff, but we were not 100% successful. I can remember seeing my parents cry as a child and being a little shook up by it, so I understand Keyan's feelings.

Last night my sweet, sensitive, honest little boy announced, "If Maddox dies I am going to be so angry." Heart wrenching. I asked him who he was going to be angry at and he reassured me that he wasn't going to be mad at his baby brother. Jeff told him that he could feel angry, without it being directed at any specific person, and I made sure to clarify that we would all be very upset and that those feelings are okay. What little boy, who is starting kindergarten in four days, should have to deal with this situation. It made my heart ache for him and for Brynna and Tracen. They are getting to experience things that are beyond them, beyond me for that matter and it makes me want to make their lives as happy as possible, filled with hugs, and kisses, laughter and fun. So, that is my goal - to make life as good as I can for them and for my sweet husband. I know that there are times when I'll need to excuse myself to the bathroom for a good cry, but there is still much to be happy about. To quote the primary song, "I have a family here on earth. They are so good to me. I want to share my life with them through all eternity."

What a blessing to be an eternal family!! The Lord has been good to us.

Letter To Maddox

2009-08-20T14:57:00.000-07:00

Dear Maddox,

Today we received more bad news from the specialist. Your heart is already showing signs of heart failure. There is fluid developing in your stomach, and your heart is enlarged, meaning that your heart is working so hard to do it's job, but won't be able to forever.
The doctor didn't sound too encouraging. At this point you aren't really in a good position to survive outside of the womb, or undergo the treatment and surgeries that you will need to fix your heart. The doctor said you need to stay put at least four more weeks and not progress any further down the heart failure road. He looked pretty grim, not thinking that was a possibility. In an effort to help you all we can, I went and got a steroid shot to help your lungs be as ready as possible since you will be coming prematurely. I will be getting another shot tomorrow. Just to let you know, they gave it to me in my bum...and it hurt...and now I have one sore cheek. Don't worry though, tomorrow both sides will be sore and I'll no longer feel lopsided. I would gladly get a shot everyday for the rest of my life if it would help you to come to this earth healthy and be able to stay for a LONG while!!

While we have received bad news we are trying to be hopeful and have faith. We are also trying to prepare for the possible outcome that you might get to go back to your Father in Heaven after a very short mission on this earth. We love you Maddox, and if that is Heavenly Father's plan, we will be so grateful to get to be the parents of such a sweet spirit.

There have been some interesting things that have gotten us to this point with you. I was initially going to a different doctor, one who I started to feel more and more unsure of as time went on. I didn't really have a reason to switch doctors, but felt a quiet prodding to find another one. It wasn't until a friend lost her baby half way through her pregnancy, that I felt an urgency to find a new doctor. At my first appointment with the new doctor he did an ultrasound where the problem with your heart was discovered and I was sent to a perinatologist. I don't even see the 2nd OB/GYN due to the seriousness of your condition, but through him and through the promptings of the spirit I was sent to someone who could potentially help you. We are supposed to see the specialist now twice a week and a pediatric cardiologist as soon as we can. Hopefully the cardiologist will have something more positive and hopeful to say, but we know that this is in the Lord's hands and if you are meant to live, that you will, regardless of the doctors findings. I'm not sure why it would be necessary for us to go through the switching of doctors if you don't make it anyway, but maybe it is because Heavenly Father knew that we needed to have a little time to prepare to say goodbye to you. Either way, I feel like the Lord has been aware of us and aware of you, Maddox.

Maybe if I could remember what life was like before this earth I would be more excited for you to get to go back home, but I'm sad that I might not get to cuddle and squeeze and kiss you much here on the earth. You are already so dear to me and your Dad. We love you. Dad is having a hard time with all of this. We have spent plenty of time crying for you, but mostly for us. I think just getting to feel you move inside me is helping me to cope, to feel a bond, regardless of what happens. But it's different for Dad. He's such a soft hearted man, your Dad. He'll love smooching your cheeks off!! Just ask Keyan, Brynna, and Tracen. They get attacked by the kissy monster daily. It's great fun. Your Dad loves wrestling with them and playing all sorts of sports, and is a spiritual leader for our family. You can be so proud of your Dad. Your siblings are loving and fun and full of life. They really hope that you will come and join them in their love of all things Harry Potter and Tiger Woods. Your brothers are into golf and are excited for one more boy to join in the obsession. I wonder if there is golf in heaven.

I feel at peace Maddox, even though my heart is aching for what might be in the future. I KNOW that death is not the end, that I WILL get to be with you again if you leave this world early. What a blessing it is to know our Heavenly Father's plan for us. My understanding of the atonement of Jesus Christ has grown so much in the short time that we have been dealing with this, and I know will continue to grow through this experience. I can't even imagine how much pain He felt, that caused Him to bleed from every pore. I only know that this pain I feel is more than I can handle alone... a little perspective on the immensity of the Savior's sacrifice.

I love you Maddox, and no matter what happens, I'm so grateful for you.

Love,
Mom

News

2009-08-18T20:01:00.000-07:00

In an effort to journal and deal with this experience, I've decided to create a special place to come and vent, share, and sort through the emotions and lessons mortality is giving me personally, my family, and especially my little Maddox, who is not yet born.

Last week- sheesh, can it really only be a week ago that we found out- we learned that Maddox has a heart defect. The severity and actual prognosis we are not 100% sure of, but the perinatologist said it was a valve issue...which valve...not clear. We do know that there will be surgery involved once he is born, that we are going to be seeing lots of doctors, that we are going to be delivering at a hospital a little ways away, that each week we will be watching Maddox's heart to check for heart failure, and that we love this little guy more each day.

I'll apologize now for those future moments when I'll be negative, and faithless. I hope you'll allow me to feel what I'm feeling without judging too harshly. This is new territory for us and I'm going to have to be honest with myself in order to get through it. However, I already know that there will be many special spiritual experiences and sweet moments filled with miracles. My appreciation for the Atonement of my Savior has grown as only it can through experiencing pain. I know that I have a loving Heavenly Father who is aware of me, my sweet husband, each of my children, and this little one growing inside me. Oh, how I love Maddox more with each little kick. He is, already, my sweet"heart".