Growing!

Another busy week of appointments for Claire and she finally made it to 8lbs!! We are still slowly dropping in percentile (4th now for weight) but she's growing which is great.  Our focus now is on figuring out what's going on with her tummy so that we can get her more comfortable.

Claire's full tummy :(

Her stomach looks like it's full of little hills as you can see her intestines sticking out because they are so full and X-rays show lots of air in both intestines so we are trying to help her relieve some of that discomfort with the irrigations (we use a catheter, syringes, and saline to help empty her colon - it is quite a messy process) once per day. I'm on my second week of no gluten, dairy or soy and and have finished almost a full week of no eggs, nuts, fish, caffeine or gassy foods. We originally started the elimination diet to try to help her manage the reflux but although her reflux is unchanged, she seems to be much less gassy. This week we will start slowly adding foods back in one at a time to see if we can find some answers, saving dairy/soy for last.  She already has decreased motility because of both Hirschsprung's Disease and Down syndrome so if she does end up having an intolerance to something in my diet, that would just be making things even worse so we want to make sure that we get all of the answers so that we can keep her as comfortable as possible and to keep her from developing enterocolitis ("a dangerous problem for children with Hirschsprung's Disease" - and she is at an even higher risk because of Ds).  Although I will say that all of the changes at once (the elimination diet, starting irrigations, introducing the breast milk thickener and we also changed her reflux medicine to a different one this week) are making it hard to tell what's truly helping, we would greatly appreciate prayers that the answers would be made clear to us.

Sister love <3

In the process of all of this, I am learning more than I ever thought I needed to know about poop! It is typical for it to get pretty messy during Claire's irrigations and dilations. Yesterday during her irrigation, I was in the middle of switching between syringes and was holding the end of the catheter in my hand. At the perfect [or rather not perfect at all!] moment, Claire let out some gas and it, very literally, rained poop all over both of us. We both needed a wardrobe change and a bath! Anna thought it was the funniest thing she'd ever seen and I couldn't help but laugh right along with her.

Our sleeping beauty,
still in newborn diapers and clothes

They moved up to the largest sized dilator this week and those are going well, although we still hate them. Hopefully this means we won't have to do them for as long as we originally thought!

We've also started thickening her breast milk this week because eating is still very uncomfortable for her as she is having it go down the wrong pipe (aspirating) and come back up (reflux) all at the same time that she's trying to swallow. The GI doctor really wants to avoid a feeding tube so we're trying everything we can think to keep her from developing an oral aversion and we are messaging with him almost daily. It takes her about 45-60 minutes to eat 3-4 ounces. The thickener helps a lot with feedings but we are still nervous about the effects of it on her gas/bowel emptying so we will just have to wait and see how it goes.

Her follow-up for her belly button went great. The surgeon removed all of the leftover scabbing and staining from the medicine that they put on. It's all closed up and we're finally cleared to give her real baths!

She still isn't on any sort of predictable eating/sleeping schedule, her reflux and gas wake her up often when she does fall asleep and her eating is very sporadic too so we're learning to just be flexible [and loving every minute!!]. Claire is such a precious little one and is handling all of this so incredibly well. Her smile is nothing like I've ever seen from a baby as young as her, she has the biggest, open-mouthed grin and it melts our hearts. She is our smiley, cuddle bug and we are all so in love <3.