Yay! We’re back home, and a full home it is. Ella’s Aunt Shannon is in town for a visit and Grandpa is still here too.
Shannon had a conference in Orlando and planned to come up and see the Bun before she flew back to California. She spent most of the day with Ella and Tina in the hospital. Shannon even stood by as Ella’s G-Tube button was swapped out for a new one. Tina stepped out for this, as would I had I been there ;-). Ella’s other “Aunt” was also there for the quick procedure, right in time to give her some comforting cuddles.
Previously Ella had a Microvasive Mini-button for a G-Tube. It was low profile and looked real clean. The valves in these tend to be flaky though, and hers broke early on. We decided to go with the Mic-Key version this time. This one sits away from her body a bit more, and is more visible. There are some pros and cons to each one, but we think this will work best for us moving forward.
We’re still trying to find the balance for Ella’s food. It looked like the increased caloric version (28 cal) started causing her problems within 24 hours of giving it to her. We first thought it was a volume issue, but even after doing a pump feed over an hour, she still got fussy. So for now, we’re dialing back to 20 cal formula and will work our way back to the full 28 cal in the coming days.
If there’s anything we’ve learned about Ella, she’s not big on change. I think the rule is, if you can go slow, by weaning down or slow steps up, she tends to do better. This also applies to the meds she’s on. Considering that she’s doing ok at the moment, no changes are scheduled, unless her labs say otherwise. I asked Dr. Kays about weaning any meds (thinking of her hefty dose of diuretics), but he doesn’t want to change anything if it’s working (this is very understandable considering Miss Ella). I affirmed that if he’s ok with it, I am too.
At this moment, Tina is holding Ella and Shannon is singing her lullabies. Ella was a bit overtired tonight because she didn’t sleep too well today, so we’re trying to put her down for the night. We finally got her settled in bed and it looks like she’s comfortable. Her numbers look good too, especially considering where they were a 8 days ago. She’s on 500ml of O2 and she’s saturating 100% with a heart rate of 135. She’s zonked out pretty good and we expect her to sleep through the night.
Please continue to pray for our baby girl. Her fluid issue is getting better, but it’s not fully resolved, and we need wisdom in finding the right balance of meds moving forward. We also ask that she may handle the increased calories in her food in the coming days. Please also pray that Tina and I get our rest so that we can give our best to Ella. This is the first night Tina’s back in her own bed so hopefully she’ll get a solid nights sleep.
Right before we left the hospital today, a volunteer walked in and said that she had been praying for Ella. It turns out this person goes to a church that a friend of a friend goes to. It was so neat to see her look upon Ella for the first time after praying for her for so long. It turns out she didn’t even know about the blog, but had been in prayer for our girl on a continuous basis.
What an incredible blessing…to have so many come before the Throne of our Lord, to lift up Ella Renae…people we have never met. We look forward to having you all meet her in person some day. Thank you again for being such diligent prayer warriors.
Blessings to you and your families.
Philippians 4:4
Rejoice in the Lord always. I will say it again: Rejoice!
