NICU black hole

Our little boy is SO ready to come home from the NICU! He's completely off oxygen, his jaundice is pretty much gone (bilirubin levels are veeeery close to normal--nothing even close to requiring phototherapy), his blood counts are all normal, he's back up to birthweight (actually one ounce over--5 lbs. 10 oz.), he's got no more IVs in his hands, and he's maintaining his body temperature on his own.

The reason he was admitted to the NICU in the first place was for his suspected heart defect. They've ruled that out (yippee!!!), so what's the deal? Why is he still in there??? Devin and I asked the charge nurse practitioner a couple nights ago why he was still there, since he seems like he may just be the healthiest baby in there, even with his extra chromosome ("genetic enhancement"). She agreed with that, but said he needs to be able to take 100% of his feedings orally before they'll remove the NG tube (the feeding tube in his nose) and send him home. I've tried nursing him about 4-5 times a day for the past few days (he's on an every-3-hours schedule), and he IS really sleepy and hard to wake up before and during, but he's so good at it once he gets going.

Apparently the only reason he's got the NG tube is that babies with Down syndrome have low tone and can't handle nursing or bottle-feeding very well--it tires the poor little things out and they'll develop an oral aversion if they're "forced" to keep trying. Huh! Well, this baby with Down syndrome has a very powerful suck (yowch!), and he's got the suck/breathe/swallow pattern down pretty dang well. It's SO INCREDIBLY FRUSTRATING being told that he can't do something when he's proven time and time again that he can! They automatically give him a tube feeding unless I'm there and ask them to please let me try nursing him first, or Devin's with me and tells them to step away from the feed tube and give him a chance to nurse or take a bottle. If he wakes up on his own, they feed him a bottle (which is actually fine with me--even though I'm stubbornly dead-set on nursing him--because he's awesome at downing a bottle, and if that gets him out of there faster, I'm all for it, even if we have to learn how to nurse once he's home). It IS true, from what I've heard and read from other moms of babies with DS, that they do tend to be sleepier, in general, than other babies. So, it might take a little more effort to get him to wake up for a feeding, but it's worth the effort to try. Sticking a syringe of milk in a feeding pump and pushing a button to get it going is a heckuva lot easier than working with him for almost an hour to get and keep him awake and help him take a whole bottle. It's all about convenience, in my opinion.

So, here's the analysis of the black hole that is our NICU stay:

--goal is that baby takes 100% of feeds orally --baby is automatically given tube feed unless he a) wakes up on his own at the exact time of his feeding, b) Devin or I aren't there, or c) takes too long with nursing or taking a bottle when we are there.

Do you see how mind-blowingly ridiculous this is??? They want him to eat, but they hardly give him a chance to try! If we were to wait for him to take all of his feedings orally using their method, he could be in there for over a month! One of the nurse practitioners told us that they could send him home with the NG tube--that they'd show us how to insert one and check for correct placement--so he could go home sooner. And the very next day, a different nurse practitioner told us she was sorry, that that was something they couldn't do. ARRGH! I just know that if I could bring this boy home, we could work all the livelong day on nursing, since I wouldn't be wasting hours driving to and from the hospital twice a day and trying to split my time between home and the &$*#@ hospital, and he'd rock it! The NG tube is completely unnecessary!

My friend Lexi suggested that I get a pediatrician to evaluate him. I wasn't sure how to go about finding one that would do that, so last night I called my regular pediatrician and explained what was going on and asked him for any advice or names of docs who could go check our baby out. When I was done telling him the whole tale, he was almost as irritated as I've been, and said he'd call the NICU's attending physician and see if we can't get our baby busted out of his jail. So, this morning I called the NICU first and asked if my doc had talked to the attending yet, and he had, but they wouldn't tell me what had been decided. Then I called my doc, who told me he'd reassured the attending that he'd be willing to monitor our baby for weight gain weekly if needed, and even assist in managing the NG tube, if necessary.

So, now we wait. The attending physician still needed to do rounds with the NICU staff, where they discuss all the babies' issues, so I won't know till later what's been decided. Meanwhile, I'm going to assume he's coming home TODAY, and bringing a car seat to the hospital with me. He still needs to pass the "car seat test" (he has to show he can hold his head up while seated in it, without his head falling forward, potentially blocking his airway). Now that I think of it, this may actually be a challenge.... Because of his low muscle tone (courtesy of the Down syndrome), he's really, really "floppy" like a rag doll. So, this is what I'll fervently be praying for today--that the attending physician signs his discharge papers, and our boy passes the car seat test. Wish us luck!