Six Weeks

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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