I didn’t sleep that well last night. Ella slept solid through the night, and Tina could’ve cut down trees with her zzzz’s, but I found myself waking up multiple times just to catch a glance of Ella’s “numbers” across the room. I just want her to be better. I want her to have a break from not feeling so good. I want us to have a break from her not feeling so good.
Being outside the hospital definitely has its comforts, but what has been really difficult is the fact that we’re continuing to deal with uncharted territory these days. I mean, we thought that when we finally went home, the mystery of Ella would be solved in regards to her care at home. We thought we would return to the hospital if she became ill or had any major complications, but not just as a continuation of the mystery that was never solved in the NICU.
With all she’s been through at the hospital, the decisions were more in the hands of Dr. Kays and his team. Now, it’s reversed. Most of the control is in our hands and the doctors are there to consult, but the issues that Ella continues to experience are still mysterious.
Does it make sense that it was less difficult to surrender to the Lord when we had limited control in the hospital, but now it’s harder because we have more control? I know the truth, that the Lord is ultimately always in control, but until I can fully surrender, true peace and rest is not realized.
We were hoping that the reduced calories in her food would minimize Ella’s discomfort. Well, at her 3 ‘o clock feed she started getting real uncomfortable. She started retching and pushed all her food back up into the tube. She was crying so hard that she couldn’t catch her breath and started getting diaphoretic (sweaty). This is so hard to see because she gets real upset and turns purple. Kinda like when your kids have been in the pool to long and there lips are purple, that way, but all over.
We upped her oxygen and clamped off all the food she pushed out and removed it. After this we were able to start calming her down.
Oh…we know we’re not alone in these moments, our Heavenly Father is right there with us, but it’s still so hard to go through. We feel so helpless. Especially because Ella’s doctors don’t have any exact answers on what to do. We did text one of the nurse practitioners who’s been an amazing resource. She suggested adjusting the volume and frequency of the feeds. This does make sense because our feeling is that it may relate to the amount of food going into her belly at one time.
So we’ll be feeding her 10 times a day every 1.5 hours, and a continuous feed at night for 8 hours. We’ve done two feeds this way and she’s tolerated it. Time will tell if this works.
Tina has been so incredible with Ella. She rarely left the Bun’s side the entire 9 days she was in the hospital. Some NICU friends were sweet to stop by and give her a break so she could take a quick shower or grab some coffee. Now, she’s giving her all her focused attention at home, with minimal help from me because I’m consumed with a big project and will be working through the weekend to complete it.
Grandpa headed home today as well Aunt Shannon. It was so great having them both around. It really emphasizes how much we miss being close to family. Thank you Grandpa for doing so much laundry, scrubbing dishes, and cleaning around house. Thank you Shannon for the groceries, Ella’s welcome home cake, and for running errands for Tina.
We were also surprised by some welcome home flowers today by a friend of a friend. They’re beautiful and much appreciated.
Please continue to pray for discernment and wisdom on how to proceed with Ella’s feeding plan this weekend. We really want to find a way to feed her that does not cause discomfort. Also, that her fluid would continue to reduce so that when she visits Dr. Kays on Tuesday and has labs drawn, that her BUN is higher (less fluid on board).
