The Hand Hold Race

1/8/2015 Team Everly Update — Change of plans. No IV surgery is scheduled. Everly made it to her new NICU bed safety. We were a bit discouraged today as we saw Everly “riding the vent” multiples times.

Here’s a video of Everly in her old NICU bed. We’ll have to give you a tour of her new digs soon. One of the games Colby and I like to play is who can get a good hand hold first. Colby has been winning only because she figured out Everly’s left hand is naturally more grabby faster than me.

Early this morning the surgery team tried seeing if it was possible to simply replace the catheter in Everly’s umbilical cord IV. If this could be done, it could be an alternative to a central line, but it wasn’t working out.

As far as surgery in general, there were concerns about moving her to the operating room and then moving her back to a bed. Any extra moves for Everly poses risks since she’s at such a critical stage with needing ventilator support. A bump down a hallway could for instance dislodge her breathing tube and a caregiver manually gives mechanic breaths during this time.

So the team decided we’d transfer Everly to her new NICU bed first and then figure the plan for surgery to make sure everyone was on the same time. It was possible she could have surgery in her new NICU room, though this was not standard procedure.

The advantage of moving Everly into the second NICU is largely advantageous for Colby and I. It’s a private room with a sliding door, rather than being one NICU bed among many in the same room. Though, we do hope the room will help Colby and I have a bit more energy to fight for Everly and make it easier for us to interact and spend time with her. So, check! We’re in the new NICU room. Everly tolerated the transfer well.

In our hospital, there are two NICUs in the downtown location connected by a quarter-mile skybridge. But, the two NICUs have different neonatologists that take on the role of the overall strategy for different groups of babies.

We had to say goodbye to our current neonatologist today after building up a lot of trust. Our last neonatologist was amazing. Unfortunately for how the days fell, we’ll only get our second neonatologist for three more days and then the schedule switches again. We’ll get our third neonatologist on Monday. Thankfully at that point, we’ll get the third neonatologist for a 2 week period. The caregivers who want to stay with Everly can still be in rotation at the new NICU. And many other specialists we’ve worked can still stay in the loop.

Even so, I expect it will be hard transition. Ok, all that to say this:

Our new primary team wants to change strategies with IV access. They think the risks of surgery is greater than the risks of not having IV access. They want to continue to transition Everly into becoming less dependent on her umbilical cord IV and then once she proves she’s IV independent for a few days, we’d remove her umbilical cord IV to eliminate the chance of infection.

The change in strategy has been jarring, but we’re listening and trying to hear the new team’s point of view. We don’t really know what’s best at the moment after being convinced both ways, but we should get more clarity after talking more with the new team tomorrow.

On the Ventilation Liberation Front, Everly had a bad day. She was more prone to “ride the vent” today. That’s when Everly isn’t initiating any of her own breaths and she’s letting the ventilator do all the work. At 7 points in the last 12 hours, Everly was happy with the ventilator proving the minimum 35 mechanized breathes it is set to give when Everly is missing in action.

She seemed to be riding the vent much more than normal today. I’m hoping she just had a bad day. After all, she did have a surgery team poking her, she was transported a quarter of a mile, and she didn’t eat much today. Because she was in surgery mode, she only received IV fluids rather than her usual milk meals from about 3am to 3pm today. Surgery on a full stomach is bad news.

So, we hold out hope that she’s back to herself tomorrow. She was so active and relaxed just yesterday. We also want Everly to prove to our new teams that she’s in the fight. “Psst… Everly dear. People are watching you.”

The transition and change in strategy left the family a bit drained today. When I got home, I ate a cupcake and then collapsed on the couch at 4 p.m. I was in a deep drool-inducing sleep for 3 hours and then I got up and made a mint julep. It felt like one of those days in college when your body shuts completely off. But the impending test tomorrow isn’t based on how much I study. It’s based on how well my daughter’s lungs are doing.

In the meantime, the outpouring of love has been amazing. People are asking when they can visit us. People are sending us meals. People are sending us cards and reaching out. So many people are simply asking, what the heck can I do? They provide a list and tell us to pick something. God is sustaining Everly and us in so many ways.

We feel so blessed to be so well supported. We know it’s exceedingly rare to have an OI baby. We also know it’s exceedingly rare to have so much support, love and expertise coming alongside us. Thank you so much for the prayers, even in spite of not knowing what’s going on throughout the day. Trust us, we feel the same ways sometimes.

Today’s lesson: I’m not sure but that’s okay.

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.
• Everly’s umbilical cord IV doesn’t cause an infection before we can remove it.
• Everly will receive great care as we hand her off to two new neonatologists in the coming days.

Much love from Team Everly