Three Months

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. **