No Such Thing as Planning

I've had a lot of people ask me lately what "the plan" is. When are they thinking he'll go off ECMO? When will he have his surgery? How long until he starts to eat normally?....

In the NICU in general, but even more specifically in Brigham's case, there is no such thing as planning. We plan things out maybe an hour at a time. Things can change on a dime and therefore there's no way to predict what he'll be doing tomorrow, or the next day, or the next.

I know I said earlier that we're guessing he'll have his surgery by the end of this week. That guesstimate is based on the assumption that he'll keep acting exactly the same as he is at this moment. He may get better quicker, he may get sicker in the next couple of days. We just don't know...

Another thing I probably need to re-address. The surgery doesn't fix "the problem". His stomach and intestines being in the wrong place is obviously a problem, but just putting them back in his abdomen doesn't make his lungs magically function.

Because his lungs were cramped for space in utero, they didn't develop properly. This is the big problem. This is the reason he'll be in the hospital for so long.

One of the doctors who's been with Brigham a lot this weekend keeps saying she doesn't care about the size of his lungs. Function is what's most important. If he has "big" lungs that don't work well, it doesn't matter that they're big. If he has "small" lungs that work well, it doesn't matter that they're small.

We had a tiny scare this morning concerning the ECMO machine. The doctor told us that yesterday on his head ultrasound they thought they might have seen the beginnings of a brain bleed. This would mean that ECMO was getting riskier. If he were to develop a full-on bleed, they'd have to take him off ECMO; no good.

We got good news today though... The follow-up head ultrasound today showed NO brain bleed! Yeah!! That means he gets to stay on ECMO a little longer and let his lungs keep resting. (Which he really needs because the blood pressure in his lungs is still really high).

He's holding pretty stable right now and we're just taking things by the hour and by the day. Thanks to everyone for the prayers and messages of encouragement! And also thanks to all our visitors who keep bringing us goodies! :)