June 6, 2012

Hello friends.

I have been working on this update for months. I have wanted to share this, but it just has not been easy to do. Thank you for being so patient, so warm, so great to our family as we have been navigating these five months without our Oakesie here with us. Please, grab a box of tissue.

Both Greg and I have talked to several people about the day that Oakes died. I think it has been therapeutic to talk about it, but it has also been heartbreaking to say the words and accept that he is really gone.

These are my words.

In the weeks leading up to Oakes death I had shared that he wasn’t doing well. He had bounced from 7West to the CICU, he had several crazy unexplained fevers, his numbers were not very stable and then his right lung was punctured and then it collapsed. After the collapsed lung he had been paralyzed for weeks as they tried to reopen the lung. He had a series or brocs where they were putting surfactant in his lung to try to get it to inflate. While that was going on I was getting daily reports from the attending pulmonologists about moderate improvement, but at the end of the week there really wasn’t significant collective improvement at all. For anyone that had received a lung transplant a collapsed lung would have been a huge problem, but for Oakes a collapsed lung that wouldn’t reopen on top of all of the other issues that he had been battling, this was just too much.

When the surfactant didn’t work, we were, for the first time in a place where we had no other good options. But there was still a glimmer of hope and like always, we desperately held on to that hope.

At the end of the week where the surfactant was repeatedly placed, my youngest sister was getting married out of town. We had bought tickets to attend the wedding months in advance and were planning on going unless something crazy was happening. In hindsight, something crazy was happening, but I think the SLCH staff that as you know, were not only Oakes’ caregivers but also our dear friends, encouraged us to go. They confidently told us they wouldn’t do anything over the weekend. Oakes would be paralyzed, meaning he would be stable. The weekend would be boring. We should go, take Isla, have fun, celebrate, and get away. So we did. We left town on Thursday for the wedding knowing that Oakes was not good, but we were hopeful that a weekend being paralyzed would give him rest, and energy to rally like he always did. On Saturday morning as I was getting my hair done for the wedding, I got a call that Oakes’ status had changed. He was still paralyzed, but his numbers were dropping. He needed more support; more Oxygen and his vent had been turned up. This was a new low for us – paralyzed AND unstable. The attending had decided they should lift the paralytic and see how he responded. I initially pleaded for them to keep him paralyzed, I desperately wanted to be there when he opened his eyes like I always was, I was so scared since he didn’t have a good track record of coming out of paralytic but the attending reminded me that it would likely take him a day or two to wake up and that we should stay and enjoy our time at the wedding. And so we did, we stayed. My sister was a beautiful bride. Their ceremony was touching, the love in the church was palpable, and the reception was a true celebration. But it was hard to keep my thoughts with me. I was standing on the alter holding a bouquet of flowers thinking about Oakes, and smiling taking pictures wondering about his numbers. It was impossible to really relax, but looking back, I so am glad we went. I’m glad I got to be with my family, see my nephews, hug my siblings and parents, dance with Isla and Greg, and meet all of my sister’s amazing friends. I am glad Isla got to go on a little adventure with us. She was in heaven around her cousins, and flying on a plane and hitting the Zoo were just extra perks. I’m glad I had a break from the hospital even if it was more stressful than I had hoped. After the wedding we changed our flights and returned to St. Louis first thing on Sunday.  We dropped our stuff off at home and got Isla settled in, then Greg and I went right to the hospital. Of course we were so anxious to see Oakes, all we wanted to do was to talk to him, to let him know we were there and try to encourage him to open those eyes. We were worried, but still hopeful. On our way up to the hospital we learned that his team was all gathering and we would be having a Care conference that night.  When we got to the room Greg and I did our usual stuff, we talked to Oakes – told him all about the weekend, kissed him all over, wiped him down, and I fussed around the room, gathering his laundry, straightening the blankets on his bed. It was good to see him, I was thrilled to be back, but he didn’t look good. He was puffy and I hated seeing all of the new settings on his machines. And I really hated that we were having a Care conference – at night, on a Sunday. I knew going into the meeting that we would be getting bad news. I kissed Oakes, took a Xanax and bravely walked into that conference room. That evening Greg and I were greeted by I think 16 of Oakes caregivers. Oakes’ surgeon was there, a team from cardiology, a group from pulmonology, a renal team; I think every attending intensivist was there, as well as several therapists and a handful of CICU nurses. It was a meeting I hate to relive. What we were told was that Oakes was in heart failure; kidney failure and they believed that he was in chronic rejection of his lungs. The rejection they suspected was called Bronchiolitis obliterans – which is fatal. There was a lot said at that meeting that I didn’t hear. The sadness that came over me was numbing as I began to process that we were at the end of our fight for Oakes. Letting go of the beautiful, uplifting hope that I had always focused on physically hurt. At one point I just put my head on the table and cried. The nurses were all sitting behind me and I could hear them crying too. Someone reached out and rubbed my back. Someone passed me a box of tissue. I somehow propped myself back up. Dr. Eghtesady, Oakes’ cardiothoracic surgeon did offer some surgical options. I think there were four of them. They were all extreme, and risky. He didn’t know that Oakes would come out of the OR alive for any of them. I remember for one his lungs would have to be collapsed just to get to his heart, and another he would have had to go on ECMO just to start the surgery. At the time he had our attention because it was an option other than letting go, but even then the options seemed like really, really awful options. There was a good amount of talk about redirecting his care – changing his care to hospice care, end of life care – keeping him comfortable, not taking extreme measures to keep him alive, but to honor him and keep him comfortable while he stayed with us. I was just sick with sadness. And writing this just takes me back to that night. There are just so many tears. When we were talking about redirecting his care someone was explaining that we would have a say in how things went, and could kind of lead the decision making process and I remember after the meeting ended I stayed and talked to one of the doctors and just kept saying, “I will never give up, I will never say it is OK to let him go, I will never tell you that I have had enough of him, never.” I did not want to redirect his care, and I know Greg didn’t either. We wanted to fight, we wanted Oakes to rally, and we wanted to beat the odds. We wanted to bring him home and just be a family. That is what we wanted to do.

We didn’t make any decisions in the meeting. Greg had taken notes during the entire thing and after spending lots of time with Oakes that night we went home and talked about everything. We had lots of questions about the surgery options and lots about redirecting his care. While we hung out with Oakes that night he was nonresponsive. The paralytic had been off for well over a day and he wasn’t moving at all. His numbers were not still dropping, but he still required that extra support. He was not rallying.

Greg and I went back to the hospital on Monday morning and met with Dr. Gazit. He sat with us for hours and answered all of our questions. At the end of that meeting we had pretty much decided we would redirect Oakes care but again, we wanted to process everything and think about it. I stayed with Oakes all day Monday as usual. He was really puffy, his cheeks were big, his fingers were swollen, he looked like he would have been uncomfortable if awake but he still wasn’t moving.

Again, on Tuesday Greg and I returned to talk to Dr. Gazit. More questions. We wanted to understand what moving ahead would mean. The one big part about moving forward was that when we redirected his care we could no longer give Oakes paralytic. Ethically that was not an option. The option that we were looking at was if Oakes could not tolerate breathing on his own, then we would basically put him in a comma and then decide when we would let him go. And because Oakes had been on paralytics for so long we knew that this would be a huge obstacle. Of course as soon as the discussion started about redirecting his care, we wanted to know, “how long will we have with him?” We wanted someone to give us an answer. We knew that this was an impossible question, but of course we asked everyone. No one knew, and no one would guess. So, by taking away the option to use paralytic we understood that we would likely say goodbye to Oakes much sooner than later. Not to mention, he still was not moving. Not even a little. Comments were made about this brain function. Had he recently had a brain bleed, or a little stoke? We had no clue. So, no true redirecting of care happened that day either. When we were at home that night I remember just crying and crying and telling Greg, “I just need him to wake up. I need to see his eyes one more time. I need him to see me. And I want to see his smile again.” I was in no way ready to say goodbye and let him go. But, if we were listening to Oakes his tone had changed. He was telling us something new. And more than ever, Greg and I were unified and we were as dedicated as ever to giving our Oakes the best. Somehow we slept that night and I woke up on Wednesday morning to a smiling but tearful Greg. He will have to share the details on his own, but he had a dream about Oakes, where Oakes was healthy and radiating peace. Greg thought it was Oakes reassuring him, that we were doing the right thing. I agreed with Greg’s interpretation of the dream and got out of bed feeling a little peace.  We didn’t know it then, but this was the day that Oakes would die, Wednesday, June 6, 2012. And now, looking back, Greg’s dream was the first of many amazing little moments that were scattered throughout the saddest day of my life. The day unfolded in slow motion. The timing throughout the day, just the way that things naturally progressed and occurred seemed divinely orchestrated. Of course, the day was awful, heartbreaking, literally my worst-case scenario coming true, I did not want Oakes to ever leave us. And so, I was shocked at how I saw beauty in that day. There were moments that were so full, moments that were so completely enormous, so meaningful, so healing. I was losing my baby, I was saying goodbye, but even on that sad day I was getting so much love from that sick, paralyzed little boy. Oakes was dying, yet some of the moments in the day were so full of life I could not help but feel some joy. It must sound crazy, but he was there with us that day, he was loving us right back, he was helping us through the day, and he didn’t leave, he didn’t check out until his heart stopped.

After Greg shared his dream, I was up and moving. Somehow Isla and I got to the hospital about thirty minutes before Greg did. When we got there, Greg’s sister Shani was in the room visiting with Oakes. We didn’t know she would be there, it wasn’t a planned visit from Iowa, but there she was and we were happy to see her. Oakes still wasn’t moving and the paralytic had been off for 5 days now. Isla was all over the place as usual. We were sort of loud just going about our regular routine, when Greg showed up. We were all standing at the foot of Oakes bed catching up when I noticed Oakes’ eyes were open! I could not believe it. In a second we were all at his bedside talking in cutesy high-pitched baby talk. Isla had climbed up right in front of him and she had the sweetest words for him, “Hi, Bubby!” “It is good to see your eyes, I love you Bubby!” His eyes were open for minutes, maybe ten. In the excitement and craziness, Ali, Oakes’ nurse who had been with us for the last two days picked up my camera and started snapping away. What amazing and important images she captured. While we talked Oakes twitched a little, his hands and his feet, he was tracking us and looking at all of us, and even though he didn’t smile, the little dimple on his cheek that would usually indent when he did smiled was going crazy, as if he was trying to smile. It was amazing. It is what I begged God for. I saw those beautiful blue eyes. And he saw all of us. Greg and I took turns rubbing his head, we both told him how much we loved him and Isla did too. He quickly dozed off and Isla climbed in the crib with him. She laid there on her side just watching him, talking quietly to him and sort of stroking his arm and head like she had seen us do so often. He opened his eyes a few times to look at her, but then he stopped opening his eyes. That was the last time we would see his eyes or see that little dimple. I have to believe that was Oakes saying goodbye and telling us that he LOVED us. I have often thought of the phrase, “I love you to death” and he did.

As the excitement over Oakes quieted down, Isla became a little restless so I called my dear friend Ellen and asked if she would come and get Isla, which she gladly did. I walked Isla downstairs and later learned that as soon as we left the room Oakes became very unstable. His numbers started dropping and he required even more support. It was as if he was waiting. He opened his eyes, was saying goodbye and when Isla left he started to really let go. In the past when he would become unstable like this we would have had him reparalyzed, or would have given him a one time dose of paralytic but because everyone knew we were going to redirect his care we didn’t give him the paralytic, he just settled out with a few other meds. Soon after Oakes settled down, my friend Carey stopped by to visit. Carey had visited Oakes while we were away at the wedding so she knew more than anyone else that we were in a bad place. She brought us a beautiful blanket that we could hold Oakes in when he passed and right before she left she got to hold him for a second. Carey had brought us groceries when Oakes was briefly at home well over a year before and I think as a Mom of two little boys she was hesitant to get to close to Oakes as a fragile newborn with all of his tubes and tape, but whenever times would get scary she would always send me the most uplifting emails about how she believed Oakes would come home, and when he did she wanted to sit on our couch and hold him. On that Wednesday, I knew that time would not come, so I had to offer that she hold him then. After Carey left Oakes had another episode where his numbers jumped around. Even though Dr. Gazit was not the attending he had heard about Oakes rough morning and he was all of the sudden in Oakes’ room wanting to help us navigate what was coming. We could give Oakes a bolas of paralytic and see how he responded, we could turn the paralytic on full speed to buy time or we could give him the medication to induce the comma. Greg and I stood on either side of the bed, holding hands over Oakes and talked briefly about what was happening. It was as if we knew what we needed to do, but we were stalling, buying extra minutes, mustering the courage to say the words out loud. We just cried and cried and said very little for a while. But then, for both Greg and I, what we needed to do seemed clear. We had always listened to Oakes. We always wanted to do what was right for him. I had just cried days before assuring his doctor that I would never be ready, and I wasn’t ready, but I knew in my heart that letting Oakes go was the right thing to do. Oakes had done so much for us; he had been so strong for so long, it didn’t seem right to drag out his death. If he wanted to go then we agreed that we would let him. So not only did we decide to put him in a comma that day, but we also decided to remove his trach and remove all support.

And that is what we did, we let Oakes go. Greg and I were together, frightened and nervous on the day Oakes was born. We were so scared about the tough life that our baby might have, and we were afraid that we wouldn’t be able to handle all of the challenges that we faced as his parents. And then there we were 15 months later, together, sad beyond words, our hearts hurting, but somehow there was a little peace in room 9 of the CICU. Peace in knowing that he would be OK. He would be free of that body. He wouldn’t have to fight anymore or be strong for us. He had taught us so much, and lived this crazy, amazing, beautiful, short life. Greg and I both had red eyes and tear-streaked cheeks. We did not want to be there, doing what we were doing, but in the moment, while we were there we both felt something amazing stir within us. Maybe it was shock, and grief and denial. Maybe it was all of that or some of that. I think thought that it was something bigger. I think it was more than our brains and emotions at work. I think it was God, or Mary, or the Universe or maybe even Oakes comforting us, letting us know we were doing the right thing. The hurt was big that day, but the peace was too.

I held Oakes in the blanket that Carey brought. Greg was at Oakes’ head. Oakes trach was removed. Greg and I had our hands on Oakes’ chest and we could feel his heart slow down and then stop. His passing took minutes. It was peaceful. It was sacred.

After Oakes passed we both held him a little more. It was one of the only times in his life that we were able to hold when he wasn’t connected to machines. We gave him one last bath and wrapped him in the green hound’s-tooth blanket that I always used to take monthly pictures of him in. It was the same blanket that I used when photographing Isla during her first year too.

We stayed late into the night. I wanted to clear out his room. I spent hours alone with him, talking to him, listening to music, packing up all of his stuff. Greg’s parents came up to say goodbye. We sat in the garden. We hugged every doctor and nurse we could get our arms around. We thanked everyone. And there were so many people that showed up to hug us and say goodbye to their little friend. People that were not working that day showed up. Dr. Huddleston even came over from Cardinal Glennon in a coat and tie to say goodbye to his friend. The way the staff walked with us, along side of us that entire day was amazing. They not only honored Oakes, but our entire family. With a loaded down car we left St. Louis Children’s Hospital that night. It was a surreal drive home. We picked up Isla from Ellen’s house and then came home, sat on our porch, toasted our amazing Oakes and drank our finest bottle of wine.

And since June 6, 2012, well, life has gone on for us.

We are all still OK. We still have good days, and we still have bad days. The pain hasn’t changed; it is still as deep and as raw tonight as it was months ago. And so far, the huge lesson about moving on has been that we have had to learn to live with the pain, and not wait for it to subside.

There are pictures of Oakes all over our house. We talk about him daily. If you ask Isla, yes, of course, she still has a brother; he is just in heaven now. Greg and I have struggled with the casual innocent question from the cashier at the grocery store, or someone in a restaurant, “do you have kids?” or “how many kids do you have?” The answer is simple, but we both usually feel so uncomfortable answering. But, we are figuring things out day by day.

We have been very busy with MOHF. I have a lot to share, lots of happy stories and uplifting reports and I promise that will not take 5 months to post. I have been pushing myself to complete this post before I did any other posts, so now that this is up, you will hear from me more often.

The last part of Oakes death that I have to share is what we learned from his autopsy. We just got the results maybe 5 weeks ago.  We were so anxious to get one final update on our sweet guy. We believed we had done what was best for him by letting him go, but naturally we both wondered and at times questioned our decision. So, when the results came in we got a call from Dr. Gazit and made plans to meet with him. First, I have to say, that it was great to see our friend Avihu Gazit. He has always taken such good care of our family, and it meant the world to us that he would take time to walk us through the autopsy report. When we sat in his office, there was not a lot of small talk at first, Greg asked right away, “Were there any surprises?” Which Avihu answered, “Yes.” And what they found was that Oakes was much more sick than we even knew. He was in heart failure. His heart was so large, and the muscle was so very thick, much thicker than they could detect from an echo. He was in rejection, and they believed he always was. He was in a form of the Bronchiolitis obliterans that I mentioned earlier. His lung tissue was so abnormal. The smallest airways where gases are exchanged in the lungs were mostly gone. They didn’t even exist. His lungs were so sick that these smaller airways had stopped working and then had basically been reabsorbed by his body. This absolutely explained why his lung weren’t reopening after the puncture. They were dying. They did not have the ability or integrity to respond or reopen like a healthy lung. Finally, his kidneys were also much more sick than they had known. He was in full-blown kidney failure. His kidneys were five times the size that they should have been because they were working so very hard. The beautiful news, the amazing news (which sounds crazy, I know), was that somehow that kids brain was beautiful. There were no signs of brain damage, bleeds or strokes, which for some reason feels really good to me. I guess this part just helps me conclude that his last smile, was really a smile. He really saw us and it all computed. After we went through the really important parts of the autopsy, Avihu who was sitting in front of Greg and I lowered the handful of paperwork that had been in front of him, and slowly shook his head and said very slowly, something like, “I have no idea - how - he lived - as long as he did.”

Which reminds me of something that was said during that last care conference. Dr. Sweet, a pulmonologist and the head of the lung transplant team got my attention that night. The team of doctors had been sharing how sick they thought Oakes was, and someone said then, “I have no idea how your son has done what he has done” but Dr. Sweet had a theory. He leaned forward in his seat, took his glasses off, laid his arms on the table stretched out in our direction, palms down and said something like, “If you leave here tonight hearing anything I want you to really hear this, your son is alive today because of you two. You have given Oakes something amazing to fight for. He is alive today not because of what we have done, but because of what you have done.” Like I mentioned before, I did not hear everything that was said that night, so I am glad Dr. Sweet got my attention and said what he said. I heard Dr. Sweet’s message and I have clung to it. In this awful, gut wrenching experience, of fighting for Oakes, of letting him go, and learning just how sick he way, I hope that we did give Oakes the best medicine, the best therapy, and just every reason to fight that he needed. The love that Greg and I have always had for Oakes is immense. We expressed it to Oakes in different ways and at different times, but we did give him all that we had. We know that Isla did the same, as did all of his family. He was SO LOVED, and I really do believe that he knew it and felt it.

Thank YOU for loving Oakes, for loving us, and for supporting us. Oakes thrived because he knew our love. And I could easily spend a day with Oakes, completely loving on him because I had the best support.  I knew Isla was in great hands; she was with Grandma having a ball, at school with her friends or playing with Cate. I knew someone was bringing us dinner or stocking our fridge, I knew someone was organizing a fundraiser, and someone was leaving me a sweet voicemail or shipping us a care package. I knew my Mom would be back in town in just a week or two. I knew that heartstrings were taking over his room, and that his vortex was epic. I knew masses were being said in his name, and our prayer warriors were going to mass for him daily. I knew rosaries were being prayed and entire convents were lifting Oakes up. We could not have done this without you, and these words seem to simple but thank you, thank you,

                                                    t h a n k   y o u!

 Shani visiting in the morning.

He opened his eyes.

Oakes looking at us.

Sweet Isla P.

Carey + Oakes

                                                      

Our sweet, sweet Oakes Lee Ortyl, the mightiest boy ever, whom we will always LOVE.