Another day, another learning experience about the world of cardiac babies. Erin's sat levels overnight were consistently in the low to mid-80's, which is acceptable, and certainly an improvement over the 70's that she was experiencing early in the week. Aunt Sara flew in from Washington to spend the afternoon with Erin yesterday, which we greatly appreciated. A couple of Sheila's friends also came by last night to spend some quality time with Erin and support Sheila.
From a medical management standpoint, her oxygen flow has been reduced from full flow (level 4) to level 3. The oxygen content is down to 35%. She is now receiving multi-vitamins in her milk, which taste and smell badly. She just puked up most of the vitamins. In addition, she is now being supplemented with formula, which is causing her stomach to hurt. As a result, she was a little moody yesterday, although in pretty fine form this morning.
She is also getting a twice-weekly dose of epogen, which is designed to help her make red blood cells. Unfortunately, that dosage comes in the form of a shot, which she doesn't like. The goal is to increase her hemoglobin levels. I said we keep learning, and today what we learned is that her body will automatically increase the hemoglobin production on its own, in order to help get enough oxygen to her organs. A by-product of cardiac babies is that ultimately after a few more weeks, Erin will tend to overproduce the red blood cells, which causes the blood to thicken. It is more difficult for organs to get the thickened blood (at least that is my lay understanding), which causes the organs to be deprived from oxygen. This is one way that her body will tell us that she needs a surgical intervention to make sure that her heart can pump enough blood. This was new news to us.
The other piece of new news is that they want another head ultrasound. Every newborn baby gets one, to make sure that the brain is properly formed and that all the components are there. Apparently her first scan didn't show everything, which could be that the scan just wasn't well done. In any event, they now want a second scan. This is something that we haven't been kept informed on, and is yet another piece of information to stress over. The scan will most likely take place today.
I expressed my frustration over learning new information such as the excess hemoglobin issue to Neonatologist Robin. I told her that it seems like every day that we hear some good news, we then learn yet another fact about a cardiac baby that takes all the wind out of our sails. She agreed, and told me that this was a good example of seeing just how complicated these situations are, in terms of balancing all of the factors and treatment. It is highly complicated for the trained medical professionals, so you can only imagine how difficult it is for the layperson to get their hands around. The entire subject of Erin's condition and resulting treatment is very murky. It seems like every time we start to feel that we have an understanding of the situation, we learn new information that makes us realize just how uninformed we are.
I feel worst of all for Sheila. She desperately needs to hear some good news, and yet one is forthcoming. Between being here all day, and then having to pump milk every couple of hours, plus waking up twice a night to do it, she is running on fumes.
On the plus side, Erin is awake and alert right now, and interacting with Sheila in a way that is making them both very happy. It is a joy to watch.
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