Project 52 – A portrait of my child once a week, every week in 2014.
17 weeks, 3 days.
This week she: Just started teething and is fascinated by her hands.
It’s obvious by the picture that we are finally home now. We were discharged yesterday afternoon with all the gear we needed to feed Lucy via the cursed NG tube. Can I just take this time to say how much I hate this tube? It’s so ugly and gets in the way of everything. She is constantly trying to get it out (see her hand in the picture? She pretends to chew on her fist, and then works her hand up to the tube to pull at it). I’m afraid that any time I go out in public it’s going to be the first thing someone sees when they look at her, and consequently I will have to answer a barrage of questions about “Why is there a tube in her nose?” when I’d rather hear “Does she laugh a lot?” or “Look at her pretty eyes!” or “What a cute smile!”
It was the bane of our existence when she was first in the hospital after she was born. A big fear of mine was that she would have to be back on it for her heart surgery…I just had no idea that it would end up being in her nose again 2 months before her surgery.
So anyway, during our 12 days at the hospital they figured out the following:
Basically there’s no obvious reason why Lucy won’t eat. What they thought initially (complications from her duodenal atresia surgery) was wrong. The doctors are speculating that it’s probably a perfect storm of all her issues, in addition to catching a cold in December that has pushed her into this aversion. She is doing a swallow study at the end of the month, but the feeding specialist said she didn’t expect to see anything wrong (they are just covering all the tests possible to rule anything out). We know that she is capable of eating as she did an entire month and a half of meeting her requirements after initial discharge. The challenge now it’s getting past the fear that she has of the bottle. How the heck to you tell a 4 month old that this thing we are putting in her mouth is for the best?!?!
Some people have commented that it must be nice having the tube back in because it takes the pressure off of feeding her since the doctors want her to be a certain size for heart surgery. Sorry. It’s not nice. I’ll take her being a baby that eats well and gains slow to her being a baby that is tube fed any day.
PS: And another thing…why the heck do they make the long term tubes YELLOW?! All the tubes that are 3 day tubes are clear. If you knew that a tube was supposed to be in for a longer amount of time, wouldn’t you want to make it less conspicuous?