Time Flies...

The update for this week...we survived Christmas.

We're also sick again.

AGAIN!

The kids' immune systems are shot and they're picking up everything. Mom says that when Jonathan has to go back for surgery, we're leaving the little kids home.

At least they aren't throwing up this time...

Jonathan's visit to the heart doctor was very encouraging.

Jonathan has two problems with his heart. 1.) He has three holes in it, two VSDs between the upper chambers and one rather larger VSD between the lower two chambers; and 2.) he had a drastically thickened inner wall that had the potential to severely hamper the volume of blood his heart could handle if it kept growing as it had.

The VSDs are somewhat fixable. If they become a problem, there's surgery that can be done to patch the leaks, sort of like patching a tire. They take a piece of muscle or tissue from somewhere else in his body and patch it over the hole in his heart. Weird, traumatic, but doable.

The thickened inner wall is something else altogether. There's nothing that can be done for it except to try to keep it from thickening as fast as it would on it's own; but in the end, a person with this problem ends up being a candidate for a heart transplant.

The really terrific news is that this thick inner wall has thinned to half of what it was two weeks before the original ultrasound. This means it's well on it's way to becoming normal. So the unfixable problem is correcting: it's being healed.

The not-so-good news is that now the inner wall is thinning, the bigger of the VSDs is becoming more visible and it's a lot bigger than Dr. Cutler thought. According to her, it's one of "Those Kinds" of holes that could go either way - heal or get big enough that the baby's growth is hampered and surgery becomes necessary.

This means...well, not much. It means that we need to watch Jonathan's growth and habits carefully. As long as he keeps growing good, the hole isn't causing him enough trouble to warrant surgery. If he gains and minimum of four ounces a week, if he doesn't seem unusually exhausted (meaning more than he was before) after eating, and if he breathes easily when he's sleeping and not active, then he's not in distress. If he starts having a very hard time eating what came easily before, and if he stops gaining weight...then he might need surgery.

The real hope is to keep him growing and keep watching the hole...and hope and pray that it will heal all on it's own.

This news came right after my last post, so we've been weighing him to see how he's doing and we've discovered this: Jonathan is consistantly gaining over 8 oz. per week. He's getting pinker, stronger, and healthier every day. He breathes hard...but not when he's peaceful or sleeping. And he's not having any trouble eating - in fact, he's graduated to nursing the whole feeding every few days. It's only every few days after he's nursed successfully several times in one day because his muscles are pretty shot for a while after that and he has to recover. But just being able to nurse the entire half hour and get almost all his milk is a huge improvement. His muscles are getting stronger.

We're still waiting for him to smile, but everything he's doing seems a month behind. He's just now growing into (and out of) his newborn sleepers, and he has the look more of a one-month-old than a two-month-old. It's as if during his stay in the hospital he was put in stasis and stayed the same for that month. Not surprising considering he had to recover from some pretty major surgery and didn't even get fed until most of that month had gone by. The stump of his umbilical cord even fell off about a month later than usual. So our bets are that he won't smile until six weeks after we brought him home. Which means...hm...he has two weeks to go.

That doesn't mean we aren't enjoying every minute with him. When he's sleeping he's like a warm little bean bag and his favorite spot is to sleep on someone's shoulder. I think his favorite place is really on Mom's shoulder, but he settles for being cuddled by anyone who happens to pick him up. We try to put him on the floor at least once a day because that's when he moves around and kicks and waves his arms the most; but it's hard to put him down because we'd always rather hold him.

He's looking AT people more and more instead of staring somewhere over their heads; but his favorite thing to look at is still the kitchen light. He'll sit in his car seat on the kitchen table while we're eating or playing cards and just stare at everything going on for a surprisingly long time. He also likes to grab his little rattles, though he gets frustrated when he can't get them to his mouth. He knows what he wants to do...his muscles just don't always pay attention to the message his brain's trying to get across.

We're getting his hair to stay down, too. He still hasn't lost his baby hair and is growing quite a bit more, so we think he's really taking after Elizabeth and keeping it. Now that it's longer, we can comb it down better and it's not sticking up like wild wampus hair anymore. This is good. No man should go through life have people giggle when they see his hair.

We're also working on keeping his tongue in his mouth. I never realized that the reason so many people who have Down's Syndrome walk around with their mouths partway open is because their tongues are so long that they get in the habit of sticking it out. It was such a strange thing to see this little tiny baby of ours doing exactly the same thing - the look was unmistakable. But he also keeps in it a lot, so it's not as if it's an impossible thing to keep his tongue in his mouth (even though he can touch the bottom of his chin with it - this little guy looks like a frog when he sticks his tongue out all the way!), just a habit. We keep coaxing him to put his tongue back in so he gets in the habit of keeping his mouth closed instead of open. This improves the intelligent aspect of any human being!