Everly Being Cute

Day 13: #TeamEverly Update — Now don’t freak out. Everly seemed to have a great day even with a touch less ventilator support. Even so, I expect the medical team likely thinks she can’t be weened much more.

Here’s a video of Everly being cute. See how much the swelling in her eye has gone down and how much her legs have dropped?

At 11 a.m this morning, the medical team changed how many mechanized breaths Everly gets. The ventilator now delivers 30 breaths rather than 35 and Everly handles the rest. She usually breaths between 40-80 breaths a minute, so she’s now picking up a bit more of the work.

Tomorrow morning the medical team will likely review the last 24 hours and see how she did overall. They have access to more data and experience than us. They can pull up health trends and all kind of breathing trends.

Even so, Colby and I did our best to be amateur statisticians today. We observed Everly and her breathing metrics and charts for about 6 hours (between kissing her and hanging out of course).

If I do say so myself, I’m quite proud of her. She only “rode the vent” once during the 6 hours we watched her and two days ago it was typical for her to ride the vent at least 3 times during the same amount of time. Riding the vent is when Everly fully relies on the ventilator and doesn’t take any of her own breaths for a period of time.

Seeing Everly contribute more of her own breaths is only a victory if she can do so while getting the same amount of oxygen and without overexerting herself. It appears she did great.

So, it seemed like a great day. Colby and I will take as many of those as we can get. Here are a couple gazillion caveats though… Think of this as the small print you’d hear after a commercial:

-We aren’t medical experts -We are biased -We haven’t heard the official results from the team -We may not be able to ween her any further -The progress we see now may just be because we underestimated where Everly is, rather than it being a sign of progress -We only observed Everly for 6 hours rather than the full 24 hours of the test period -Positive micro changes likely won’t change the team’s macro perspective

Even with that boatload of caveats, I’m calling it a good day and celebrating.

In other medical news, the team pulled out Everly’s umbilical cord IV. We’re 100% off all IV access and reliant on administering medication and food by mouth. There are no issues there so far. We can say we’ve eliminated our risk of IV infection.

We had our nurse incline Everly a bit more today. She’s now at a 15-20% angle, up 5% or so. Our OI friends will like that news. Apparently getting your OI baby on an incline can help alleviate some of the pressure from ribs pushing down on lungs.

All is good on the feeding front. Everly gets 50ml (3 and a half tablespoons) of milk every meal. She hasn’t been leaving any food unprocessed in her stomach and she hasn’t been throwing up or coughing up anything. The team feeds her each meal over a period of 2 hours so there’s less in her tummy at one time. This helps cut back on the chance that she can cough up food and get it in her lungs, which we desperately need to protect.

Feeding is a tough balance for Everly. We need to protect her lungs. But, we also need to keep her hydrated and protect her stomach when we give her medicine orally since we don’t have IV access. She definitely doesn’t look hungry. She’s putting on weight well, even though we don’t know how much exactly. We rarely weigh her as it’s not needed for her treatment and any handling carries with it risks of accidentally breaking a bone.

My mom got to change Everly’s diaper today. Colby and I were visiting with a few friends in the hall this afternoon so mom got an extra long turn with Everly, which she loved. Unfortunately, whenever I see a doctor coming to consult, I usually kick mom out if she’s around so Colby can come in to hear what the team has to share. There are restrictions on how many people can be at Everly’s bed at one time.

Colby also learned how to put Everly in a zen trance today. Usually when it’s coming up on Everly’s next morphine dose, she gets a little antsy. Today though, Colby stroked Everly’s nose and head while quietly shh’ing during this time and Everly was out cold. Colby loved discovering a new superpower.

By the way, I know my updates can be dark then suddenly cheery, then dark again. I only know how to report on the mood of our hearts, so sorry for the wild ride. I’m starting to relate to the challenges the medical team faces when sharing news. When there are small wins, they always make sure to share it within a broader context.

For instance, a medical person’s message may be: “Your baby seems much more active and there is less swelling today. That’s great! But unfortunately, your baby has small and underdeveloped lungs and they may never be able to work on their own.”

So I’ll try my own version of this very calculated talk: Everly has a lot of challenges and she may not never get through this struggle alive. That means she may not have as many days as most of us get. Therefore, if she’s having a good day, you better believe as a dad I’m going to be right there beside her cheering her on while I can. She’s my girl and I’m so proud of her.

Thank you Lord for letting me see Everly kick butt today.

Today’s lesson: Don’t forget to celebrate and love your child. Only God knows how many days we all have.

Please pray that:

• Everly will be able to breathe more on her own and we’ll be able to liberate her from the ventilator.
• God will bring us all closer to Him.
• Colby and I will clearly hear what God is telling us about each next step.

Much love from Team Everly