Our Sweet "Heart": Day 2

Thursday, October 22, 2009

Day 2

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.

- Posted using BlogPress from my iPhone

7 comments:

AllisonOctober 22, 2009 at 9:02 PM
Congrats on your beautiful little boy's arrival! Are you adjusting yet to all of the beeps and monitors? I promise it will get to a point that you know when to tune them out! Watch and wait indeed....we will be doing the same here with a prayer for his lungs, leaky valves, and that stinkin' fluid again! How are you feeling Alissa? That is a lot to take in right after giving birth. Hope you are not feeling the pain. Keep the faith!
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The Olsen'sOctober 23, 2009 at 6:19 AM
I was just thinking this morning if he would be able to get through this whole ICU thing without the normal ups and downs of the ICU. Apparently we are in for the regular bumps of cardiac kids and their rollercoaster. I love you guys and we are praying for you!!!! Hope you are feeling better today!
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cvsueOctober 23, 2009 at 7:18 AM
The Chino Valley contingent is ever prayerful for your little guy. Alissa, hope your recovery is uneventful-the first week is the worst (at least for me it was). We love you and send our prayers your way. Take care of yourselves always.
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SherwoodsOctober 23, 2009 at 7:21 AM
We are still thinking of you guys and prayers are coming your way from Mexico. Isn't the priesthood wonderful? I love that you know your little guy will make it through...even though it will be hard for everyone involved. I really hope that you can all be together for Christmas. That would be one great way to celebrate the Savior's birth! Good luck with the upcoming surgeries and everyone's recovery!
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Jake and RachelleOctober 23, 2009 at 8:15 AM
Hope you are recovering well Alissa. You are all in our prayers. We will keep fasting for you guys. How wonderful it is to have the priesthood and to have those blessings. We hope you guys can make it back home for Christmas. Being together is sure more important than any present we could buy. Love you all!
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cheeriBABYOctober 23, 2009 at 1:57 PM
You guys are so spritually strong. Keep it up. We are keeping your sweet little family and baby Maddox in our prayers. Lots of love.
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*K*R*I*S*T*Y*October 23, 2009 at 4:54 PM
I'm so glad he got a blessing, what a sweet feeling of peace that must have brought.I can't imagine all the people around the world going through similar heartaches and not having the gospel. I wanted to share a link with you, my cousins blog who recently had a baby a few months back that had lots of heart surgeries.The baby was diagnosed with Hypoplastic Left Heart Syndrom. I don't know too many details, I didn't read it every time he posted because I was very pregnant and couldn't look at the pictures without bawling,I just know the baby was scheduled for lots of heart surgeries once he was born and not likely he'd live after the first one, but in fact did, and is still going strong. But maybe there is something in there worth reading to you,

http://thejjmoffittfam.blogspot.com/2009_03_01_archive.html

try that link, if it takes you to the most recent posts then just click on the blog archives for march. There's nothing about the baby before march 09 until the nov 08 posts while she was pregnant. My cousin is a funny writer so maybe if you have free time just read the inbetweens :) Anyway, it was just a thought. You guys are of course in our prayers regularly and I love being able to read about the effects of so many people praying for you, it's been a great experience to have our testimonies strengthened through your experience.XOXO
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Maddox Revere Dixon

Welcome to our story of modern day miracles. We have seen first hand the wonders of our Heavenly Father and have been joined with people all over in earnest prayer for a baby boy... our Miracle Maddox.

Maddox was diagnosed prenatally with Aortic Stenosis and Mitral Regurgitation. We found out at 27 weeks gestational age that he had a congenital heart defect. By 29 weeks he was in heart failure and had developed hydrops(fluid under the skin, in his abdomen, and around his heart). The plan was to deliver him at 30 weeks via c-section and after birth attempt to get him stable enough to try to open up his aortic valve. We were also given the option of doing nothing and delivering vaginally once he had passed away, which they thought would be soon. The doctors gave him a less than 1% chance of survival if we tried to intervene. We started planning his funeral. The week we were scheduled to have the c-section we were given the option of flying out to Boston to do a fetal intervention where they would essentially operate on Maddox in the womb. The doctors in Boston weren't even sure that Maddox would be alive once we got off the plane. Two days later we had the fetal intervention where they ballooned open the aortic valve, put a stent in the atrial septum as well as a hole above the stent, and removed some of the fluid in Maddox's belly. Maddox was the 9th baby with his unique heart condition to have undergone this type of intervention. It was successful, and Maddox was delivered at 37 weeks in Boston, where he underwent open heart surgery at 3 weeks of age. At two months of age Maddox came home to Texas. We are now trying to adjust to the new normal: multiple weekly doctors' visits, g-tube feeds, medications administered throughout the day, insurance claims, and including our three other children in the care of their amazing little brother. What an adventure. More surgery is in the Mad-man's future, but he has a future, and for that we will be forever grateful.