Everly's First Kiss

1/5/2015 Team Everly Update — Everly is between a rock and a hard place. She’s still fighting, but we’re praying she takes a hard, right turn.

I gave Everly her first kiss today. I was being super careful not to agitate her or to use too much pressure.

The last 24 hours have been the worst stretch for Everly so far. Some of the medical staff are trying to prepare us and set expectations that Everly may never get better.

It’s pretty clear the medical staff thinks Everly has OI type 2, which is the lethal kind. It’s the kind that kills most everyone who has it.

We know OI kids who are living normal, happy lives who were diagnosed by doctors with type 2 and they ended up having type 3. So, we’re not ready to treat Everly like she has type 2 yet.

There is a spectrum for all types, but if you have type 3, you have a much, much higher chance of surviving. We have some blood work pending for Everly, but it can take up to a month for it to get back.

There are two things that were hard to hear today.

First, Everly has been needing more oxygen than she has in the past. Through most of last night she was needing 80% and 90% oxygen because she was having a fit when we were switching up her pain medicines. She was down to 52% today, but she is heavily medicated and in the past she’s be closer to 40% with that much medicine in her. It’s bad if Everly has a new baseline for needing more oxygen as the goal is to get her off oxygen and ventilator support.

Second, Evelry hasn’t tolerated our first attempt of weening her off her primary IV pain medicine, Fentanyl. What’s why she was having a fit last night. The team started giving her morphine and then started weening her off Fentanyl. When we eventually brought Fentanyl down to about half of what she was getting, she continued to cry and fuss and required more oxygen to calm her down. She was in pain. Eventually, we bumped her Fentanyl back up to about 80% of what we were giving her while keeping the morphine dose we’re now giving by mouth. She is now stable.

Not being able to get Everly off Fentanyl is bad news because we can’t give Fentanyl orally and Everly’s umbilical cord IV is “a ticking time bomb” as our neonatologist put it. (Neonatologists are the folks who run the medical team at a NICU. They care for babies in high risk situations.)

Everly’s umbilical cord IV is likely to become ineffective in 1 to 5 days because there will either be a blood clot, it will cause an infection, or medicine will stop passing through it. You usually want to abandon an umbilical cord IV in 7-10 days, but we may press our luck.

The problem with finding an alternative line of access is that to do an arm IV would break Everly’s arm. We’re not sure someone is willing to do that. A scalp IV only lasts for 3 days and then you’d have to do another. There are other options which also have complications for Everly.

Everly is in a tight spot. We have a care team meeting Tuesday at 2:30 p.m. central. It’s when representatives from all of Everly’s teams will be in one room. We’ll put our heads together and figure out a plan. The medical team wants part of the discussion to be figuring out if our current goal is to help Everly live or help her die.

Colby and I aren’t at a place where we are ready for end-of-life care for Everly. She is still showing us she’s ready to fight. Tonight our neonatologist was surprised she had made so much progress at coming back down on the oxygen she needs.

So we’ll need to fight for her in the conference room. And convince a few people that there is still plenty of hope and plenty of options to explore. Everly will make it clear to us if she’s too tired to fight.

In the meantime, I’m cool with an angel appearing to me in a dream and telling me I need to walk around the hospital three times while playing a kazoo. God sometimes waits till something is impossible and then asks some of His children to do the most crazy thing ever so only God can be glorified. God may have a plan like that, or He may not.

When Everly gets a feeding of milk, the caregiver checks the milk against Everly’s medical record number. They read the number out loud.

You know what type of people have numbers for names? Prisoners.

My daughter is in prison, and God is going to break her out of there. Though it’s not up to me to decide how He does it.

When we felt Everly kicking in Colby’s stomach, was she kicking because she was in pain? I have no idea, but I know a lot of people are kicking into Heaven from here on Earth and God knows we’re in pain.

He’ll set everything right in His timing. I just pray He lets us kick into Heaven a little earlier from this corner of Earth.

Today’s lesson: God knows more than me.

Please pray that:

• Everly will be able to breathe more on her own
• God will bring us all closer to Him
• The team figures out a plan after the umbilical cord IV is ineffective
• We’ll be able to ween Everly off of IV medicines so she’ll be one step closer to coming home, and that
• We’ll have a breakthrough care meeting will the medical team at 2:30pm central on Tuesday

Much love from Team Everly