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News from Nathan

Happy Easter week! Nathan’s first Easter was a lovely day. We had church in town hall (we kinda outgrow our building for the big holidays…), a super yummy brunch with the Mom, Dad and Grandma (Parrish, Vogele, Booth) and then a long visit with Nathan. He even stayed awake to say hi to his grandma and grandpa and great grandma! We forgot to open Nathan’s Easter basket from MamaTort before everyone left, but he still looked cute falling asleep next to it. (new photos, including our easter family portrait, over in the gallery)

So, I’m sure you’re wondering what’s new these days. Two weeks ago Nathan had a swallow study, the result of which was to put him on thickened milk to prevent aspirating and to stop breastfeeding for a while. Disappointing to not be breastfeeding, but the thickened milk made a huge difference – no more heart rate dips with eating and he could finish a whole bottle – yay! Then Nathan’s bilirubin level (that stuff that makes babies yellow) stopped decreasing and then started increasing. UGH. So last week his team got together and said WHAT is going ON? They checked his liver function, platelets, and hematocrit, took a blood culture and did a liver ultrasound. And other than looking more like an oompa loompa than he did the week before, everything was fine. The only change they could find in his care was the addition of the thickener in his milk.

So last Thursday it was decided to stop using the thickener just to make sure it wasn’t the culprit. This meant taking Nathan off of bottle feeding since we're not sure he's ready for unthickened milk. So we’ve been back to 8 feeding tube feedings a day. Boo. Labs were taken again today to see if there’d been any change. Bilirubin's down, but only a little, so Gastroenterology will have tests run tomorrow (or maybe the already did this afternoon). In any event, Nathan will not be going back on the “Simply Thick” thickener. He’ll have a swallow study on Thursday to see if he still needs thickener at all, and if so, they’ll use a different one. Until then, still no bottle.

While it’s a nuisance, and this delay in eating and especially in breastfeeding is really disappointing, the elevated bilirubin level is not harmful to Nathan – it’s simply an indicator that something else could be going on. And that something else could be the infection that Nathan used to have and we’re simply still seeing how it effected his body. So we could be bringing home a yellow baby, but even if time is the only solution, the level will eventually come down.

That’s the news.

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