12/31/2014 Raise a Toast for Everly! — We started reading bedtime stories to Everly in the NICU. We’re going through the The Jesus Storybook Bible. She’s not great at staying awake through a story at the moment, but I can tell she’ll grow up to be a professional bubble blower.
We’re slowly finding ways to bring a bit of the nursery to Everly. We draped one of her blankets with her name on it over her NICU bed today.
Everly got her first meal of mother’s milk today. We’re excited Everly is starting to get the nutrition and antibodies that will strengthen her immune system and help her grow. We’ve noticed she’s grown a bit, but we haven’t been regularly weighing her as it’s something that would agitate her and it’s not an essential metric. She weighed in at 6 pounds and 6 ounces when she was born.
The nurse medical team noticed Everly was a bit wheezy yesterday but she is no longer as wheezy today which is awesome.
The medical team is looking for opportunities to challenge Everly from her current level of oxygen support. Once she looks like she’s comfortable for a good stretch of time, the nurse practitioner will dial down how much oxygen she is getting and see how she does. Everly is currently getting around 54% oxygen, and we want it to eventually drop to 21% (the amount of oxygen in air).
Everly’s first pamidronate treatment took two days and it wrapped up today. This is what can help strengthen her bones and assist with pain management. She hasn’t had any side effects from the treatment so far. When she’s super relaxed, it appears she’s moving around more too. We hope the PAM treatment is causing her to be a bit more willing to move about. The next treatment wouldn’t be for another 2-3 months because of her size, so over the coming weeks we’ll see if the first PAM treatment is having positive effects.
Before her PAM injections, the medical team gave Everly some liquid tylenol to fight off any potential fever that can come from PAM. Everly loooooves Tylenol. She gets super calm and kicky as she sleeps and her heart rate and breathing rate slow. We’re keeping Tylenol in the toolbox since it’s so effective. Extended use could harm her liver and mask spikes in her temperature, but it’s a good to know it’s so effective if we need to consider it as a pain treatment option in the future. There’s always a risk/reward calculation for everything. It’s great we have so many smart minds on the case.
Since birth, Everly has preferred to keep her head turned to the left. X-rays aren’t showing any breaks in her neck that we can see, but she of course has a weak neck because she is young and has OI (osteogenesis imperfecta). The medical team is starting the process of slowly tilting her head to a more straight position if she allows the gradual changes.
The strategy is shifting the foamy pad under her so concentrated pressure isn’t making a break more likely. It’s important she doesn’t stay in one position for an extended period of time for the same reason you’d change an elderly person’s position if they are in the same position in bed all day.
Colby and I are now in a hotel close by and we’re planing on getting much better sleep.
Personally, the lesson I’ve been learning over the last 24 hours is how to be a dad and love and get to know Everly, rather than focusing on her care and having a plan.
Colby and I are keeping track of treatment for our daughter, but the key word is daughter. I’ve been watching Everly’s vital metrics like a football game, cheering her on as a way to cope with seeing her struggling, but the way I need to cheer her on is by looking her in the eyes and making sure she knows I’m in her corner.
Every breath she breaths is a gift. My father-in-law said something that resonated with me. When you zoom out, we’re all in the same position as Everly. We all are a tiny speck on eternity’s ever expanding line.
If you are celebrating tonight, please raise a toast to Everly. She’s entering 2015 like she’s ready to prove something.
Thank you so much for continuing to keep her in your prayers.
Much love from Team Everly.