Wednesday, August 19, 2009

The "One Week Old" Update...

I figured some of you may be on the lookout for an update, so this is for you. Sorry I haven't done this sooner, but it's taking us a while to figure out our schedule.

First, I should say that the docs concluded Jackman does NOT have Hirschsprung's Disease. That was a big relief for us, because it would have definitely been another surgery.

Also, they have run all sorts of tests on just about everything anyone could think of. Everything has come back all clear except for an issue with his bladder, but they don't seem very concerned about that right now.

He had a little operation a few days ago to put in a g-tube (feeding tube). He finally got some real food in his little belly late last night. Ever since he was born, he has been nourished with an IV. The poor little guy has been hungry for a whole week. The docs and nurses couldn't do anything about it; they had to make sure his digestion was working right before they gave him food. He handled being hungry better than I would, but he does fuss, and he does come by it honest. Anyway, it is such a relief to know he's getting something in his stomach.

And last but not least, the tests show that Jackman has Isolated Esophageal Atresia. If you click the link, you'll see that it is pretty rare, and the type he has is even more so. That's a little scary, but the docs and nurses at Children's know all about this condition. They told me that they see a lot of it, especially here lately. As a matter of fact, Jackman's pretty little baby-neighbor has TEF (different from what Jackman has), and they fixed her up. We are fortunate to live so close to Children's; I see a lot of out-of-state tags in the parking deck.

Well, basically what that means is this; Jackman has a long road to hoe. The course of action to attach the ends of his esophagus will involve several surgeries. First, he has to gain weight; back up to and above his birth weight. Next, they will perform a series of surgeries where they will draw the ends of his esophagus together by basically using stitches to pull them together over time (by the way, I'm not an MD). They will do this as many times as it takes to get them close enough to attach.

We have no idea how many surgeries this will be, how many months it will take, or when the process will even start. The docs and nurses are careful not to give us any misinformation (which may be no information for the time being), and we are grateful for that. We are pretty sure at this point we are looking at months instead of weeks.

The good thing is that we may be able to bring Jackman home with us in between surgeries. We aren't totally sure about this, but we're hopeful. If that happens, they will spend time "training" us. We would basically have to do what the nurses do. Another patient's mother told us that they would put us in a room with Jackman at the hospital, and they would teach us to do everything, day in and day out, that they do, and they will be there just in case. We would have to learn baby CPR, how to feed him through the g-tube, and how to manage the suction tube that goes into his mouth and down his throat. Sounds a little overwhelming, but at least it makes changing diapers sound like breeze.

Last, but not least; I've heard the term "birth defect" used a few times regarding Jackman's situation. Me and Lisa aren't going to get mad at anyone who says, or thinks that, but I feel like that is a very short-sighted view of things. There is a verse I know well from reading it on the wall every time we went to see the baby doc for a checkup. It's Jeremiah 1:5, and it reads "Before i formed you in the womb I knew you, and before you were born I consecrated you". If that's true, how could what Jackman has even be considered a defect? Wouldn't that be saying God messed up? Well I know that just ain't the case. And I also know God allowed this for a reason. He's got something planned, and we are privileged to be a part of it.

It may sound crazy to some, but I wouldn't trade our present condition for anything "normal". We have seen God do too many amazing things over the past few years to start doubting Him now. He's going to make us better parents, and Jackman a better man on the other side of this. All we have to do is be still and know that He is God.

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1 comment:

  1. We think he's pretty perfect, too, and cannot wait to see that sweet face again!