Things started off fine. We were able to give Elliot a sponge bath for the first time, which was fun. Who doesn't love a nakie baby?! But then feeding time came. You would think that after not being able to eat for three weeks, Elliot would gobble up every drop of milk we offered him. Nope. He's not interested in the bottle. In fact, he kind of hates it. He makes this horrible face when you try to get the nipple in his mouth, and arches his back and tries to escape. Then, if/when he finally starts sucking, he just lets all the milk drool right out of his mouth before falling asleep and refusing to be awoken to finish.
Our nurse sensed my frustration (and had a few frustrating feedings herself that morning), so she called the occupational therapist. She works with babies who are having feeding problems. The therapist watched me bottle feed him and pointed out a few problems:
- Elliot has a recessed chin which makes it hard for him to get a good strong latch
- He is starting to show signs of oral aversion
- He works very hard to breathe while feeding (his respiratory rate is in the 70's or 80's, which is equal to an adult running on a treadmill)
- He doesn't understand the suck/swallow/breathe sequence
So, Elliot's honeymoon phase without tubes is over. He now has an NG feeding tube in his nose. He will be given twenty minutes to try to take his bottle. Whatever he doesn't finish in that time will be gavaged (tube fed). This will enable us to wean him off the TPN (IV nutrition), which is horrible for his liver. We have plenty of time to work with him on nippling and feeding but... I just want to bring him home.
The occupational therapist reassured me that problems like these are common for gastroschisis babies, and that the feeding process can take months. MONTHS. It just wasn't what I wanted to hear at this point. It is the strangest feeling to leave the hospital every day WITHOUT my son. I just want him home with me, to be able to do all the things with him that mothers normally get to do. I feel like I'm missing out on this wonderful newborn stage. Quite frankly, I feel like an inadequate mother because I am not able to care for him 24/7. I miss him at night the most, every time I wake up to hook myself up to a machine when I should be nursing my son.
It's just hard.
Elliot a few minutes before his sponge bath
All fresh and clean! {does anyone else think he has reddish eyebrows?!}
New feeding tube :(
