Going Rogue

About a week and a half ago, after asking for input from other Trisomy parents and having a doctor also weigh in with an opinion, we decided to "go rogue" and try an experiment for at least a week. I wanted to stop giving Verity the formula fortification that we've been adding to my breast milk. (Fortifying breast milk is typical protocol for smaller babes like our T18 girl so they can get extra calories to help them grow.) From arching her back to squirming and screaming and not pooping for several days in a row (and then it being a BIG ORDEAL when she finally did have a blowout), our poor Verity was clearly having tummy pains. I figured it would be worth investigating.

So starting Thursday evening, April 6, Verity began breast milk-only feeds. After 48 hours, we already were seeing a big difference. She was much more relaxed, and she hadn't really had any screaming fits--not like we had gotten used to dealing with. As time went on, another happy observation: she was no longer experiencing reflux! Before this change, massive reflux (milk spewing out her nose and mouth at the same time) was a daily occurrence, soaking everything and causing alarm because of the difficulty she would have breathing. It happened anywhere between 1-3 times a day. We utilized the suction machine almost daily, as the bulb syringe was not always capable of keeping up with the outflow.

Additionally, nights after dropping formula became--overall--more peaceful. While Verity wasn't exactly a great sleeper after the change, at least we weren't dealing with her painful screaming fits; the times she woke us up were more due to the discomfort she was likely experiencing because of her new castings or simply because she still has her days and nights mixed up. She loves to be held...which is all fine and good when it's 3pm instead of 3am!! Last night we had a happy surprise: Verity slept from about 8:45pm until after 5am! Was that ever a needed respite for her exhausted parents! We aren't sure if it's because we took her outside in the evening sunlight and tried our darnedest to keep her awake before starting her nighttime feed or whether it's because we diffused the Peace & Calming oil beside her swing during the night...but whatever the cause...it worked, and we shall try our best to duplicate it tonight, ha!

Anyway. Today was our follow-up with the GI doctor. Verity had been doing so well that I didn't intend to start adding formula to my milk again, but I did feel that I needed to be honest with him, especially since we were also consulting with a dietitian at today's appointment. Thankfully we had a track record of weight gain; I've been having Verity weighed between her castings, and she did gain weight despite not having the formula! Not a huge gain--from 6lbs, 13oz to 7lbs, 1/2oz. But still. She is trending upward, and equally important, she is a much happier, more peaceful baby! The doctor was pleased with how Verity looks; though he admitted that he had not looked at Trisomy 18 growth charts, he did say her growth is all proportionate. And he said he would look up those T18 growth charts!

The doctor and dietitian agreed that I can continue with breast milk only, but we are increasing her volume, which is something I was thinking Verity is ready for anyway, as she fairly consistently wakes before her scheduled feeding time. She and I also had a nice recreational nursing session late in the night a couple of nights ago, the first "success" I've had with that in a long while. We had a swallow study this coming Thursday and hope to begin transitioning to bottles (hopefully nursing at some point?), but it will likely be a fairly slow transition. Because of that, we are working on getting a referral for a G-tube surgery so that we can at least get rid of that HOSE, ahem, feeding tube in her little nose. :-)

So, new numbers: increasing from 400ml/day to 500ml/day, with 5 daytime feedings at 60ml and a 20ml/hr continuous feed 10 hours at night. We shall see how this goes!

Here is Verity, completely unconcerned in the GI waiting area!