Sorry we took a day off from blogging, but not a ton has happened. She is continuing to be taken off of different meds and is still off of the ventilator! Yippee!
We have had a couple of bumps in the road, per usual, but overall we are taking good baby steps in the right direction.
So here are the updates:
-She is off the fetynol pain killer and is switched to a different one and she seems WAY more comfy.
-Ella is peeing a lot more on her own which is a good sign.
-She's been off the ventilator and has changed to a machine commonly called the "Bubble Machine" which is helping sustain the pressure in her lungs. You'll see in a picture below what it looks like on her face. She has been breathing on her own though!
-The clots in her neck are still not going away... So she's pretty puffy in her face. Sweet little thing has little bird legs and a pretty large head at the moment. They don't look like they should be on the same body!
-Ella's brain bleed has not progressed and is stable and the doctors are feeling good enough about it where they won't need to monitor it by ultrasound every day but rather every few days.
-Ella is getting 6mL of breast milk an hour! The day they took her off the ventilator, they removed the feeding tube from her nose to put in the bubble machine so she didn't eat that day, but they put in a new feeding tube via her mouth and are upping the milk intake pretty regularly! We were afraid she was not tolerating the milk well because she was excreting a lot through her chest tube, but they got it tested for something that starts with a "c" and it was negative so they are excited to keep the feedings up!
-The doctors have put Ella on a steroid to reduce the inflammation on her heart. They are hoping this will help get her heart to pace itself regularly without the need of a pace maker. I am nervous she'll need the pace maker to be put in because that would mean another surgery... It would feel like a big step backward even though it's not as invasive and sometimes kids with this heart defect need it for a short period of time and can get it removed at any time... She'd have to go back on the ventilator and all of that stuff so I am praying that we won't need that!
We have been so overwhelmed by all of the prayers, kind words, and financial support we've been receiving. We are truly blessed by all of you. I don't know how we would get through this without our God and the encouragement from you. THANK YOU!
Below are some pictures. I have tried to keep them "friendly" for everyone, but they do have a tiny bit of her chest incision and stitches so if you don't want to see that, I wouldn't scroll down 😀
Love,
Jillian
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| Mommy stroking Ella's head. She's a big fan. |
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| Mommy "snuggling" Ella. |
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| NO MORE VENTILATOR!!! |
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| Ella on the "Bubble Machine". This is her hardcore face. |
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| Daddy being goofy with Ella. |
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| Daddy is wrapped around little Ella's finger already. 💜 |
yay new pics!
ReplyDeleteThank you so much for sharing Ella's journey with us. I am praying for all of you constantly!
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