Weekly Update: Irrigations :(

Eating is still not her favorite
thing; the red/puffy/watery
eyes are from aspirating and
reflux.

It's been a rough week for Ms. Claire. Her intestines aren't emptying like they should which has caused her to become very distended and uncomfortable, it also aggravated her reflux and made her even less motivated to eat (because her belly is so full/hard). Everything is checks and balances and we're learning very quickly to take one day at a time!

We also saw the surgeon this week to remove her umbilical stump. They are supposed to fall off in the first 10-21 days and Claire still had hers, underneath was still an open sore and so her pediatrician referred us to a surgeon (luckily we already have a great one!) and she had that removed and treated yesterday.

Our morning "torture" routine
(we have a night-time one too)

She also had a "surprise" X-ray done of her tummy because of the distention.  The X-ray showed that both her large/small intestine were much too full so she had an irrigation done to help release it and we will now have to do daily irrigations at home. This news was really disappointing for us but we are very thankful that it will help her to start feeling better again.

Her dilations are still going well and her surgeon moved us up yet another size this week; we do those three times, twice per day.

Our beautiful, tiny girl

We had more feeding therapy as well. She is still aspirating (this, the reflux, and her struggle with swallowing coordination are due to her low muscle tone which is a characteristic of Down syndrome). These appointments are a lot of trial and error, trying to figure out what we can do in order to position her to minimize this; how long feedings should be, how much she should eat at a time, how often, etc. in order to help her to gain weight but also to keep her from getting fatigued and aspirating. We are only supposed to breastfeed once per day for now so that she can continue to practice but because it takes so much work for her, she isn't able to get enough without fatiguing and that increases her risk for aspirating. She isn't able to "productively" breastfeed yet so we're still having to give her a bottle after these as well but hopefully with time and practice, that will change.

In addition to increasing the dose of her reflux medicine, we are also eliminating dairy, soy and wheat to see if this helps. We are starting with 14 days and then re-evaluating.  If we don't see a change, we will also eliminate eggs, nuts, and fish. This is common for all breastfeeding moms to try when they have a baby who struggles with reflux. Claire's reflux is most likely due to her low tone (reflux is very common with Down syndrome - and the Hirschprung's/distention makes it worse) so eliminating trigger foods probably won't make her reflux go away but if it could possibly help, we're going to try!

She weighed in at 7lbs 15oz today, that's in the 5th percentile. She's dropping lower and lower in percentile (which they don't like) but she IS gaining weight!!!

Claire says "TGIF!"

That's all for this week [I think!]. As always, thank you for your continued prayers and support and for taking the time to read about our journey. We will update again after our appointments next week.