Day 19: #TeamEverly Update — Colby and I have decided to let Everly die. She’ll pass in our arms Sunday. Our daughter is already slowly dying and keeping her alive would be for us, not her.
Here’s a video of Colby washing Everly for the first time.
AN IMPOSSIBLE DECISION
Evelry has Osteogenesis Imperfecta. That’s when your bones break easily. It’s treatable and manageable and many people live with it and it in no way defines someone’s life. It’s just a part of someone, in the same way having freckles is a part of you. We love so many OI families already.
Everly has one of the most severe forms of OI. I heard someone on our medical team describe Everly’s bones in the hallway recently. He or she said she has multiple, multiple, multiple fractures. We’ve counted at least 50.
The majority of these fractures were likely there even before Everly was born. During Colby’s c-section, doctors were able to lift Everly out of Colby’s belly en caul. That means she was still protected by a bubble of amniotic fluid. It’s hard to pull off but it was the best way to minimize forces on Everly’s body when she was born.
If you watch someone break over and over, you think it’s tragic, but that’s the wrong perspective. If you’re the person who breaks bones twice a month, it’s not a big deal. It just happens. You wrap or splint something if you can, pop a pill and after 10 minutes you move on.
If Everly just had OI, she would have a chance for it to not define her. She’d have a chance to live a long, uneventful life watching Doomsday Preppers and eating chicken nuggets.
But Everly doesn’t just have OI. The severity of her OI means that she has had multiple, multiple fractures in her ribs. Because of the breaks, her ribs have formed irregularly. Her ribs are smaller and more triangular in shape.
Because of how Everly’s ribs have developed, Evelry’s lungs have developed at the same pace. They are small and underdeveloped. They don’t work without lots of support. Lungs branch out over and over till each branch ends in little cavities called alveoli. These cavities move oxygen into your blood stream. Everly has an abnormally low number and size of alveoli. Without the ventilator, Everly wouldn’t have the lung strength to keep her lungs from collapsing.
Our doctors have told us over and over that our child is dying and we finally believe them. We aren’t in a just ok hospital. We’re in the best hospital in our state and our hospital rivals all great hospitals in our region. We’ve been in contact with the OI clinic in our hospital and the clinic has reached out to other OI experts in Australia, Canada, Nebraska, and Maryland about our situation. Unfortunately this isn’t an OI issue. It’s a lung issue.
On Everly’s third day of life, we gave her an injection of pamidronate. This is a drug that can help strengthen bones. But unfortunately, it hasn’t helped Everly fast enough and even if Everly’s bones continue to grow stronger, we don’t have a treatment for her lungs.
The only way to take Everly home into a stable environment would be to take her home after a tracheostomy. That’s a surgery that allows you to have a breathing tube through your neck. But there are two issues with this. First, she would still be slowly dying because of her lungs. And second, it’s not possible for Everly to get a tracheostomy. Surgery for Everly carries a high risk for breaking her neck because of her severe OI and her upper airway isn’t developed enough to be a candidate.
Despite Everly being incredibly cute, she is dying in the hospital and there’s not a way to take her home. She is needing increasingly more pain medicine to manage her pain. This will eventually kill her. In addition, the high amount of pressure the ventilator is using can’t be weened – believe us, we’ve tried. This is damaging her lungs. Small little leaks start to form when a ventilator pushes your lungs farther than they want to go. Eventually, a ventilator can cause a lung to pop. The ventilator is slowly killing her.
When Everly was born, the doctors saved her life. She wasn’t breathing on her own and they put a breathing tube in her. We stand behind this intervention because we believed she had a medical shot of living. But each day we keep Everly alive is also an intervention. Without the ventilator, Everly would die.
So, when does an intervention save someone and when does it harm someone? Saving someone’s life when they are nearing their painful end isn’t a loving thing to do. No longer intervening means Everly will be healed. We’d personally rather have Everly alive as long as possible, but that isn’t what’s best for our daughter.
This is an impossible decision. We may never have complete peace that we are doing the right thing, but we have enough peace. Colby and my decision rings true to us. Unless God heals her before then, we’ll hold Everly in our arms as she dies on Sunday, 1/18/2015.
Sometimes I forget other people mourn alongside me. I feel my wife’s pain. I see her shaking and crying in front of me multiple times a day. But the weight and numbness I feel is so consuming that I often forget that my own family is mourning alongside me, or rather I don’t have the energy to act on it.
I know Everly is impacting people in waves radiating out from her. So sharing how I’m handling this may be useful to others. Many of us have lost someone dear to us, but painting a plastic smile over brokenness is a mistake.
When I close myself off to feeling tragedy in my deepest parts, I’m robbing myself of having the capacity to feel joy in the deepest parts of myself as well.
If I don’t start the long process of feeling sorrow, it’s just building up. It’s staring me down with bigger and bigger eyes till I let it run through me.
I believe in a Heaven, so I can be joyous Everly is going to a better place where she will be healed, but as a human, I have a flaw. I’m selfish and I think about myself constantly. And the truth is Everly being healed doesn’t mean I can turn off my pain.
It’s easy to forget there are more Psalms of lament than of any other type in the Bible and Torah. It follows that it’s a normal, healthy pattern for us to cry out for help.
God is big enough to hold our pain, joy, disgust, numbness and rage all in his hand at once.
That’s the God we serve. Our God is big.
There will be memorial services open to the public in the following places:
Nashville, Tennessee — The evening of Friday 1/23. More details to follow. Ellijay, Georgia — The afternoon of Sunday 1/25. More details to follow.
Please don’t send flowers or gifts for Everly or our family. We can pull those up from the side of the road for free. If you’re looking for a way to honor Everly with a gift, please consider one of these four options.
- Donate $25 to the OI Foundation in honor of Everly: http://nate.at/donate2theoif — The OI Foundation funds important OI research and helps spread awareness about OI. We printed out the OI Foundation’s nursing guide and it currently sits by Everly’s NICU bed. I thought it might be polarizing to tell a nurse how our baby needs to be handled, but many nurses have told us they’ve read the guide and that it is very useful. We also have been in touch with an OI board member and they have been incredibly helpful.
- Donate $25 to the Center For Courageous Kids in honor of Everly: http://nate.at/donate2cck (Be sure to designate the donation for osteogenesis imperfecta.) — The Center For Courageous Kids is a camp in Kentucky that accepts seriously ill children who would not be considered for other programs. Many of our fellow OI families go each year. Colby and I are excited to stay involved in some way. Here’s a video about what they are about: http://youtu.be/kEU_1zHru_g
- Donate $25 to the Schlegel Family Mourning Fund in honor of Eldon Schlegel: http://nate.at/donate2schlegelfam — Michelle and Eldon Schlegel were married 21 years before Eldon suddenly passed away. Eldon is survived by many children, 3 of which have OI. Eldon was the Schlegel family’s only source of income and they have a massive stack of medical bills on top of their regular bills. Please consider helping this family financially as they adjust to a new normal. Family friend Jodi Aldis Hora set this fund up.
- Donate $25 to the orphanage in Migori, Kenya in honor of Everly: http://nate.at/donate2migori — Colby went on a mission trip to this Christian orphanage, which helps children that are orphaned due to AIDS. These children stole Colby’s heart. Supporting this extension of our family would be a wonderful way to honor Everly.
A GUIDE FOR COMMENTING ON THIS POST
It has been an experiment to share Everly’s journey with so many people and so openly. Overall, it’s been amazing. Through our openness, God has had more room to work in people’s hearts. Everly is making a bigger impact because more people know her. And we benefit from the outpouring of love and information.
There are disadvantages of being so open though. Reading comments that make us feel misunderstood can hurt. In this post in particular, please keep this in mind when commenting. Feel free to message me (Nathan) directly if you’d like to have a more open dialogue.
Today’s lesson: God is big enough to hold our pain, joy, disgust, numbness and rage all in His hand at once.
Please pray that:
- God heals Everly’s lungs. This is my prayer till her very last breath.
- God will bring us all closer to Him.
- Our family will be able to be fully present when loving Everly.
Much love from Team Everly