Getting Tired

Day 15: #TeamEverly Update — We’re feeling the pain as the number of acceptable options for Everly seem to be dwindling into one option. And we’re not sure Everly wants to be in this fight anymore.

Here’s a video of Everly and Colby taking a nap. I wonder if Colby would have started snoring louder than Everly’s air leak if I didn’t wake Colby up. We’ve been showing up more tired each day.

Today it rained all day and that about sums it up. Our team told us that Everly is never getting better and if we stay the current course, she may die without family rather than with family by her side.

A not-so-short medical explanation:

Everly likely had 50 or more breaks before she was born. Life outside the womb is even rougher for her. All indicators point to Everly having the very most severe type of OI. It’s the most lethal type. There are drugs to help strengthen bones but they aren’t believed to make a dent in babies with Everly’s type. Because of the multiple, multiple breaks in her ribs, her lungs didn’t have the area they needed to properly expand. Her lungs aren’t just small. They are underdeveloped and require a ventilator to keep them inflated. Everly needs lots of help breathing, but sometimes she also checks out at random times and doesn’t breath any of her own breaths at all. She takes heavy doses of pain medicine and is expected to need more over time.

The medical staff puts Everly in the category of having a lethal condition. That means there’s no medical chance of her getting better. If her heart stops, they wouldn’t do chest compressions because it would break her ribs and the pressure would likely kill her. If her breathing tube comes out, they likely wouldn’t put it back in from fear of killing her or badly hurting her. They aren’t willing to do a tracheotomy because the operation would likely break her neck. They won’t check her blood pressure because it would break her arm. They won’t weigh her because it carries with it the risk of breaks.

Everly’s recent gains in breathing more on her own have exposed a plateau in progress that is a brick wall.

The only plans the medical staff have for Everly is to not harm her and to make sure we can spend quality time with her.

The message from the medical staff has been consistent, but as each option for treating Everly turns into a dead end, we’re faced with the message getting louder.

The message is simple. What is best for Everly?

It’s not possible to take her home. She’d need a vent and to have a vent she’d need a tracheotomy, which would likely break her neck. She also would need a dream team staff even if we could get her home.

It doesn’t seem possible to stay the course. The nurses are afraid that eventually Everly is going to knock out or cough up her breathing tube and that’s her life line. That’s the only thing keeping her alive and the staff likely wouldn’t try putting it back in.

The only other option is allowing her to die.

It’s been hard to figure out Everly’s voice in all this, but we’re not sure how we can say she’s still fighting at this point. If I were Everly, and I knew all I know now, I would tell my parents to pull the plug.

“Um, yeah. Send me to heaven. I’ll keep a seat warm for you. You know my lungs are half the size they need to be and my x-ray looks like a broken glass jar right?”

So unless God intervenes or unless there’s some medical hail mary pass we can pull off, things are coming into focus a bit more around the Baker family.

If you know of any treatments or clinical trials we should be looking into for both OI type 2 and severe pulmonary hypoplasia, let us know. Seriously. We want to make sure we have all the information we can get our hands on.

There’s a narrative for OI kids. It goes like this. They are fighters. They have a higher pain tolerance. They grow up learning how to be different and awesome. They rise to the challenge. I expect the narrative is mostly true.

I believe Everly is a fighter. Not calling her one would be like saying my kid isn’t cute. But even so, I wouldn’t push my daughter into a gun fight with wooden nunchucks. How can she be ready for that type of fight?

For those OI parents who have had to make a tough decision about their child, is fighter the best term? Maybe Everly can still fight for others with her story. The OI community has been amazing. When we have needed hope, OIers have delivered. I suspect, if we make a decision to let Everly die, that there are those standing in the background waiting to come forward and explain how the death of their child has impacted others.

If any OI parents want to comment or message us about the death of their child, it’s now appropriate. We can handle it.

It’s a harder story to tell, the one where your baby dies. And not many people like hearing it. I don’t.

But maybe it’s just as important.

Maybe that’s how we can help other severe OI babies in the future to have a better chance. And maybe if we share our stories right, it will help us all love those we have on this side a bit deeper, and maybe it will draw us closer to God. And just maybe it will show us how incredibly short our lives really are. And maybe we won’t forget that lesson so quickly this time.

Thank you Lord that you’re starting to show us a bit more clarity on how to best love Everly based on where she is now. You’ll need to give us extra strength if we go down this path. We’ll be angry at you and we won’t know how to answer the question “So how many kids do you have?” when we’re at parties, and we’ll break into tears randomly when we remember something about Everly, and we’ll have to learn how to not covet all the babies who aren’t dead, and we’ll be hurting.

But Lord, we also know you had a son who you loved dearly. And you let him die so we could live. And you did that when we hated you. So I know you understand our level of our pain, because you went infinitely further. Help us to praise you and love you when we don’t know what you’re doing. Help us to be ok so one day we can use everything Everly has taught us to continue the battle.

Today’s lesson: Maybe we need to talk about death more.

Please pray that:

• God heals Everly.
• God will bring us all closer to Him.
• Colby and I will clearly see the next step we need to take.
• Our family will be able to be fully present when loving Everly.

Much love from Team Everly