Here we are again!

So apparently I haven’t posted since the last time Leah was in the hospital? Yikes! I have a picture post in progress but I guess I’ve been working on it longer than I thought.

So. Leah had a dilation this morning. Or rather, Leah had an endoscopy this morning. They didn’t have to dilate!!! Her esophagus is a uniform width at this point, which is So Awesome and Exciting.

Now for the less-exciting part. Leah’s vomiting and retching have both gotten worse since the last dilation, and they were already pretty bad going in, which is probably why she wouldn’t hold anything down in the hours immediately following the procedure last time. Her doctor proposed putting in a GJ tube at her next procedure and we have been agonizing over this decision for a good week now. But on Monday Leah didn’t keep down a SINGLE FEED, and at that point we concluded that something had to be done ASAP. We took her to urgent care on Monday evening just to check on her hydration, and then met with GI and surgery on Tuesday. We agreed to go ahead with the GJ as a temporary fix to allow Leah to get her calories and fluids. The plan was that she would come in Thursday AM as usual, but on Wednesday she was still retching and vomiting and looked exhausted. Her little fontanelle was sunken and she was tired all through therapy. We decided to call her GI and see if he felt it might be worthwhile to admit her overnight to hydrate her before her procedure. That is exactly what happened, and so here we are – Leah’s almost-dilation went great, and the GJ is in. The not-so-fun part is that Leah has still been retching all afternoon, and after her feeds started she began to leak greenish fluid from the stoma, and shortly thereafter she had two episodes of vomiting greenish yellowish stuff. (You’re welcome for TMI.) So they called off her feeds for a few hours and did an x-ray to check placement of the tube. It’s in the right place, so she is just starting feeds again, this time at a slower rate. They will adjust her feeds gradually overnight, and we will see how things look in the morning.

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Oh – and how’s this for perfect timing: the Butterfly Fund posted a picture of Leah in her little piggietails and it totally went viral! The photo is nearing 475 THOUSAND likes. Holy moly!!!!!! So many people sharing LeahBug’s sweet smile! So cool and very encouraging when we are stuck in the hospital.

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We are all So Exhausted.

5 thoughts on “Here we are again!

  1. She’s an amazing baby with amazing moms! We loved the thank you card! Must play date soon, I’ll be home in LA most of August!

    Sat 7/26 at my grandma’s house Inglewood= party for my sister Deborah’s birthday/Usc kickoff party=I’ll be sending after I get back from Detroit.

    Baby Leah, you hang in there. I know this can’t all be fun but your mommas are so good at helping your life get better and keep getting better. Sending you hugs and nom noms!

    • Just saw this now – unfortunately we will still be in the hospital this weekend. :-/ But hope to see you soon!

  2. So sorry she is reacting this way. So hard on her and Mamas..?THINGS SHOULD STRAIGHTEN THEMSELVES OUT SOON —I HOPE. Keep hold of this thought please.
    Thanks for the picture, now I can show people that I tell about this amazing baby and show them her adorable face!
    By th way Leah’s thank you notes was so cute. Keep the faith ladies.

  3. i honestly have fell in love with this little angel .i look for her pic as soon as i get up in the morning ,it makes my day ,she is so happy go lucky ,always smiling . it sure makes you think your troubles are minamal compared to hers.bless her heart ,

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