no more struggle

I really hate that I have to write this update tonight. 

Yesterday morning around 6:20am we got a call from the PICU, Tony was coding. We physically ran to the hospital. By the time we got there he had been coding for probably 10 minutes. They told us he got upset, probably trying to poop, and his oxygen saturation dropped. Then his heart rate went with it. They tried to use the ambu bag to give him breaths instead of the vent and couldn't get his airways to open back up. After probably 30 minutes of chest compressions they decided to try to put him on ECMO. That's a machine that basically does the work of the heart and lungs for a time. At first we said okay, but after seeing how long it was taking to get started, knowing that he had been without much oxygen to his brain for more than 30 minutes, I started telling them that I didn't think we should proceed. They agreed that there was almost no chance that his brain was being perfused most of the time they had been doing CPR. That meant that even if they could save his body in that moment, he wouldn't be Tony again. And there was a very high chance they would never be able to take him off of the machine. Fredy and I decided it was time to let him go, let him go see Jesus and his grandma and all of the other people who had only loved him from Heaven. 

We took all of the tubes and wires off and enjoyed him in the most natural state he had been in since he was born. Nothing to tangle, nothing to pull, nothing to hurt him. No alarms to alarm. No people wanting to poke him, take his blood pressure and temperature every time we just got comfortable. No more struggle. The first time I didn't have to constantly check his monitors and his breathing and his vent. No suctioning. He was so peaceful. We could walk all around the room with him. Hand him to each other. We gave him a bath and poured water over him for the first time. We put the Easter outfit on him that he didn't get to wear because he was too sick last weekend. We got to put it on over his head because there was no trach and tubing in the way. Every single thing reminded us of how unnatural our entire 8 months had been. We were surviving. We were trying to give him the best life we could give him in that small room hooked up, but it was no where near normal. 

We don't know why after 8 months one event could take him away. We knew he was fragile, but by this point everyone acted like we would get him home no matter what. Whether that took 6 more months or 12 more months. We hadn't really factored this into our possibilities honestly. He seemed stable enough, and was doing so well developmentally. I personally believe that he was getting so strong that he was able to overcome the vent too well, causing him to clamp down worse than ever. He had been able to cut off his breathing so much easier this week. He was so much more advanced than his little lungs were. They suspect it sent him into a pulmonary hypertensive crisis, which I didn't even know could happen in an instant like that. My biggest fears were him being stuck there until he was 2 or older, never coming off the vent, or coming off and still having a terrible time down the road. We could have gotten him home and then had this happen, or worse. This past week I started really becoming concerned with the future. No one is able to tell anyone with a baby like Tony what his future would hold. He could be 10 years old with emphysema. 30 years old on oxygen. There's no research. 

Thankfully while we held him all day I talked with a lot of people and in the end we got it arranged for Tony to donate his lungs for BPD research. The tissue will be kept within the IU health system so that the doctors who work at Riley can use the grants that they have for that specific type of research on his lungs. He was also able to donate his heart to help other babies. They will specifically be able to use his valves, and the doctor we spoke with said she could think of multiple kids in Riley right now that could use them. It took a lot of work, even leading into this afternoon, to get that all arranged. It's crazy that we had to fight for what we believed was right for over 24 hours simply because of miscommunications and lack of follow up. But it was so worth it, just like every fight we fought for Tony. 

Yesterday, while extremely difficult, did seem orchestrated in so many ways. The social worker who we worked with closely in the NICU never works weekends and never gets called in, but she was somehow the one who was called in to help us, which led me to be able to contact her today to close all of the loops that were left open by others. There isn't a better person for her job! I asked to see lactation so they could walk me through how to stop pumping and how to donate my saved milk. I had never met the lactation consultant, but she ended up being an extremely kind woman who lost a baby herself 5 years ago. She was able to share her story and also a devotional that she happened to read that morning that was extremely helpful. I'll post it below. Our favorite NP came in on her day off to see us and put us in contact with the doctor who thought outside of the box for me and spoke with the chief medical officer (CMO) in order to give the okay to keep his lung tissue for BPD research. The CMO was there during the latter part of his code, and hugged me tight when we made the decision to call off the ECMO. She thanked me over and over for not putting him or them through the suffering that comes with hanging on. I had met her one other time, and she is actually the sister of the head of pulmonology, who I have gotten very close with the past few months. There were other people working against all of the Good, but there was so much Good that it won in the end. 

We left his room crushed and exhausted, but full of joy for Tony. He was so perfect, he truly looked like an angel yesterday even in death. We somehow have a lot of peace. I think we knew from day one more than anyone that Tony was struggling day in and day out. Last week people kept coming in to say hi to him for a minute, getting him to smile at them, telling me how great he was doing, and then leaving. I started telling them that he was doing okay in that moment but they really needed to stick around to see the full picture. Most people just saw a cute trach baby that could drink out of a bottle and couldn't imagine that he wouldn't go on to live a long happy life. They couldn't even look past his sweet smile to see his body retracting trying to pull in air as they talked to him. He was too sweet for them to see. Yesterday was the first day I didn't feel crazy, like I was looking at a different baby than them. There was no arguing about how well he was doing, trying to convince me that he just needed time. 

We are doing okay so far, surrounded by family, not living in constant worry for him for the first time in 250 days. No guilt about leaving him at night to go sleep, wondering if we'll get a call. Sitting in our own home together. Death is not always the worst outcome, we know that. And we trust that God will work this all out for Good, He already is. We are so thankful for Tony's life and the impact it has left. Even yesterday the physicians changed the way they did hand off at shift change to include family wishes in the event of a code because I guess they weren't doing that before and they felt unprepared for Tony's situation. We're so thankful that we knew that so many people were praying for us this entire journey, and supporting us in so many ways. I'm so sorry that it couldn't be the outcome we all hoped for. Thank you all so much, I truly hope that his story has impacted everyone who knew him from near or far. 

We don't plan on doing a funeral service, but would like to have some kind of service eventually and will keep everyone informed when the time comes. Fredy and I have and will be well taken care of, so if anyone would like to do something in Tony's memory we would love it if donations would be made to the Ronald McDonald House in Indy. If it wasn't for that place, we couldn't have stayed within walking distance of his room safely almost every night since he was born. We wouldn't have been able to run there and be there to make those decisions with as much information as possible by being in his room within minutes of the call. The link to donate is https://donate.rmhccin.org/give/399475/#!/donation/checkout

and you can put Antonio's name in the honoree blank and my name and email sghersnisu@gmail.com in the recipient blank if you'd like. It's kind of an odd format, but the recipient just means that's who will get the message and notification. You can also call 317-269-2247. It's truly a good cause. 

Fredy and I are going to take some time to rest and recover together, so if we don't get back to someone we apologize in advance, but will try to stay in touch as we can! Thank you for all the love. 

I pulled the text out and will paste it here since it's hard to read there: 

When You Can't Make Sense of Devastation

2 KINGS 25

I have stood in front of a smoking ash heap of my broken life. My dreams and what thought my life would be like turned to rubble and ruin. Maybe our stories are different, but in the end, our grief looks the same. We're deep in ash and dust and we can't make sense of it, sense of God. Maybe it even feels like our faith is out there in the ash heap with everything else.

The story of the destruction of Jerusalem is hard. It looks so devastating, so final-death, captivity, and the destruction of the temple. And yet, tucked in before this book of history closes, as though sin and hardship wouldn't get the final say, is the story of King Jehoiachin. A chapter prior, Jehoiachin is taken prisoner (2Kg 24:8-12). After sitting in a cell for thirty-seven years, he is released and given a place of honor (2Kg 25:27-30). It's a reminder that no matter how bleak the circumstances, hope is never lost. God does not abandon His people or His promises.

If you are sitting amongst the rubble right now, let me share these three truths with you: One, in the midst of devastation, look for small mercies. I promise they are there. It's the favor shown Jehoiachin. It's the help of a neighbor, the listening ear of a friend, or the perfect story shared at a memorial. Write them down. They may seem insignificant when we are drowning in an ocean of grief, but mark them anyway. One day, we will be able to look back and recognize the faithfulness of the Lord in these times.

Two, loss is not where you find peace. It can feel like the undoing of your faith when you can't understand God or the reason for your pain. We want to believe in God whose peace surpasses our understanding, but we live like peace comes with understanding. Faith in a god we understand is no faith at all. If we think we have a handle on God and His ways, there's a good chance we've made God in our own image. God is holy. His ways and thoughts are beyond our comprehension (Is 55:8-9). His perspective spans eternity. Maybe this place of devastation is exactly where we find faith in a God beyond all comprehension.

Three, we have been raised to a living hope (1Pt 1:3) and all of God's promises are secure. God promises to give beauty for ashes (Is 61:3) I can tell you from experience that trying to make sense of loss, rearranging your ashes as though you could make them beautiful, is not where the miracle happens. It's when you hand it over and fully entrust it to God that He can bring beauty out of the rubble. Death precedes resurrection. We have so much hope in the resurrection of Christ. I cannot tell you what God will make with the broken pieces of your life, or when, but whether this side of heaven or the next, God raises the dead to life.

Beautiful Brokenness