On Sunday, March 23rd, we celebrated Owen's one month birthday a day before his open heart surgery. He wasn't having the greatest day, but he was still somewhat awake and interactive. We cut this onesie down the back so we could slip it on him for a quick picture. The pants were a little difficult to pull over all the lines he had, but we made it work! I loved seeing him dressed. I mean, the pants alone are just precious. He was so handsome!
We passed out cupcakes to people on the floor in celebration. I loved telling people that Owen wanted me to give them a cupcake. He also left candy and chocolate chip cookies at the nurses station with little notes. Maybe that's why he was such a popular little guy. :)
Around 7:30 am, the anesthesiologist and his team arrived at Owen's bedside. And then we started the dreaded walk to the operating room. Oh how I hated this walk.
We kissed him goodbye and told him how much we loved him and that he was going to be just fine. We left teary, and a little scared. We passed Dr. Kanter in the hall and could barely look at him. He could barely look at us. This was serious, and everyone knew it.
When Brian and I arrived in the waiting room, we both felt a sense of total peace. We knew this was from the Lord and from so many people praying for us that day. We sat in the corner of the waiting room near a window and passed the time by catching up on shows on Hulu and watching Jimmy Fallon. When I started to feel anxious, I flipped through a book of verses and prayers my mom had written down for me to have during his surgery. They were verses and prayers people had written in comments on Owen's caring bridge site. They were such an encouragement to me during that time. Sam, the chaplain came to visit us with her therapy dog, Uno. We loved Uno. He was such a comfort.
Another friend, Lacy and her son Josiah (who was also a heart baby) came to visit. This was our first time meeting in person. It was so wonderful to visit with her and meet Josiah. Susie (our respiratory therapist) was off that day, but had a class at the hospital, so she came early to chat with us too.
We got calls every hour or so, updating us on what was going on. It was a long day. Around 4:30 pm we got a call saying that they were winding things down and everything had gone well. We got another call soon after saying that when they put the patch over his open chest, there was a lot of bleeding, so Dr. Kanter had to go back in and figure out where the bleeding was coming from. We didn't get another call after that. It was an excruciating hour and a half wait after that last call. Finally, the PA came in and took us back to the consult room to meet with Dr. Kanter. Was he able to come off bypass successfully? Was he on ECMO? Did they stop the bleeding?
Dr. Kanter told us the procedure went well, and that he stopped the bleeding by adding a few more stitches. Owen's chest was left open (covered by a patch) to help the swelling. We knew this would be the case. He had 2:1 heart block, so he was being paced by a pace maker, but Dr. Kanter said not to worry about that. He said Owen successfully came of the bypass machine and did not have to be put on ECMO. This was huge! We were thrilled with this news, but we knew the next 24-48 hours were critical for his recovery. If he had a hard time recovering from his previous less invasive surgery, chances were he would have a harder time recovering from this one.
When we saw him, he was awake and doing great. The doctors and nurses were all so happy to see how well he was doing. Seeing their relief in the medical staff made us even more aware of how serious it was. Owen defied the odds just by coming out of surgery alive and not on ECMO. We had a lot to be thankful for.
Unfortunately, Owen's recovery didn't go as well as we hoped for. His urine output wasn't as much as it needed to be to remove the excess fluid his body was holding on to. He also had developed an infection in his skin from one of the lines that had been in his body for a while. Due to his poor urine output, he was put on CVVH (a form of dialysis). He had a large catheter put in his right leg which caused it to turn dark blue because of venous congestion.
Even with his chest open, he was awake! People were quite surprised by this. Apparently, it's not the norm, but he was comfortable, so they didn't need to sedate him more than he was already. We continued to read lots of books together. He was still swollen and puffy, but it was starting to go down. One morning after surgery, Dr. Kogan, one of the other surgeons came by to check on him. We examined his open chest and the patch, and he explained things to us. I asked if I could touch his heart and feel it beat, and he said that I could! So I placed my finger gently on Owen's open chest and felt his actual heart beating. Brian felt it too. Not many parents can say they literally touched their baby's heart!
It's amazing how different he looked after surgery... Over the next few days, his edema went down and he got less puffy.
Owen's chest needed to be closed. We were told that every day it remained open, it was less likely that he would ever make it out of the CICU. It was serious. Closing his chest seemed just as stressful as his surgery. On April 1st, Dr. Kanter closed Owen's chest. We were told this might be another time when he may need to go on ECMO (if he didn't tolerate the closure). It was a successful closure, and Owen tolerated it really well at first. Right after we got back to his bedside after it was closed, things took a turn for the worst. His blood pressure began to drop significantly, and his chest had to be re-opened. His CO2 levels went up, so they switched him to the oscillator, and he started doing better.
I stayed with him until 2:30 in the morning. I needed to see that things were more stable before going to bed. It was a busy night for him, but he was doing better than before. His chest was open, he was on a lot of support for his blood pressure (dopamine, epinephrine, and vasopressin), he was still on CVVH, and he was back on the oscillator. At least he wasn't on ECMO.
We got a call early in the morning (around 4 am) telling us that things weren't going well. His blood pressure had dropped again, and he wasn't responding to high doses of medications. We needed to come in. They were getting ready to put him on ECMO. The hope was that by going on ECMO, his heart and lungs would be able to rest for a few days, and then be strong enough for his chest closure. This was not the news we wanted to hear. It felt like so many steps in the wrong direction. Things just kept getting worse and worse after that. He started having a lot of bleeding through the patch over his open chest, so Dr. Kanter had to go in and clean it up. And then he had bleeding in his abdomen, so Dr. Kanter had to go in once again, but he couldn't see where it was coming from. The general surgeon was consulted and on standby in case the abdominal bleeding didn't stop. Thankfully, it did.
On Thursday April 3rd, Dr. Raviele told us that Owen's chances of living were not good, and that we needed to be prepared for the worst. He was very straight forward with us as he had to be, but it was heart felt. He was with Owen from the very beginning at Northside. I had developed an attachment to Dr. Raviele that I didn't feel with any of the other attending physicians. He was almost like a father figure, and I knew he cared a tremendous amount for not just Owen, but for us too. I could go on and on about this man, but I won't. Just know that if someone had to tell us that news, I wanted it to be him.
Still, we did not give up on Owen. We kept praying for God to heal his body. We had several conversations with doctors and staff about the fact that we were still doing things for Owen, not to him. We were still providing him with the best medical care and fighting with everything we could to help him survive. The doctors assured us that if we got to the point where we were doing things to him, they would let us know. We weren't there yet.
Susie (the respiratory therapist) gave Owen this book, and we read it every day. It was so fitting for him. I cried many times while reading it, but I made sure to make all of the train noises... This was the last book I read to him.
Owen's days on ECMO were my darkest days. If you are new to our story and want to read specifics, feel free to do so here. But right now, I can't relive it. The days were so hard. So hard. I was still pumping breast milk for him, hoping that one day he would get to use it. Every time I handed it to the nurses to freeze, I wondered what they thought. Did they think I was ridiculous for still pumping? Did they think it was stupid of me because my baby was going to die? I know some of our nurses read this blog, and I want them to know that I NEVER felt judgment from any of them. This was all in my head, but I was in a dark place. I felt like we were slowly watching Owen slip away from us hour by hour. Seeing him look that sick was unbearable. When I think of Owen now, that's not the baby I picture. I picture him looking healthy and strong.
We celebrated his six week birthday on April 6th. My sister-in-law made this cute card for him.
We were scared. But even at this point, I couldn't give up. I refused to give up on my baby if there was still a chance. We were still praying for a miracle. Susie was with us that day and insisted that I hold Owen. Amanda did too. I wanted to, but I didn't want to risk his chances of coming off of ECMO successfully. They assured me that they do this all the time, and that it would be just fine. So I did. They turned the screens away so I wouldn't fixate and worry about his numbers. Brian was right beside me. I just held him and told him over and over how much I love him. Over and over and over again. I love you, Owen. Daddy loves you too. You are our favorite baby ever. You're so strong. So brave. So handsome. God loves you so much, and He is here with us right now. I love you. I love you so much. You are my sweet, sweet boy.
Dr. Kanter came by around 7:00 that evening and told us it was time. We knew that if he was unable to come off of ECMO, he would not be put back on. That would be the point where we would be doing things to him instead of for him, which we did not want to do. We were confident that Dr. Kanter would do everything in his power to keep Owen alive. With tears in my eyes, I made him promise he would, and he did. Brian and I waited twenty feet away in the consult room, trying not to listen to what was happening. We listened to music and flipped through pictures of Owen on my phone. We were still praying for a miracle.
Owen's little body just couldn't fight any more. God's plans were not our plans. That night, Owen went to be with Jesus. God chose to heal Owen's body in heaven, not on earth. Brian and I were the ones now with broken hearts. The pain we felt that night was unlike anything. I really can't describe it.
Our dreams for Owen were shattered in a matter of minutes. We would never take our baby home. We would never get to teach him things. We would never hear him say, "I love you mommy and daddy." We would never get to watch him grow up. Our dreams were crushed, but we knew he was completely healed. We knew he was with Jesus. Our minds knew these things, but our hearts ached. They still ache. When we held him all swaddled up that night, we knew it was just his body. His spirit was in heaven. We knew we would get to see him again.
We can't wait for that day.
Thank you, God for sending your Son to die for our sins so that we may have life. Eternal life. Life with no pain or heartache. Thank you for loving Owen perfectly and more than we ever could. Thank you for giving him to us for forty-three days. Thank you for showing yourself to us through him.
I read this today, and it really speaks to my heart.. especially when remembering these last few moments with Owen--
"No matter what is happening in your life now, your story has an amazingly happy ending. Though the way ahead may look dark to you, there is still brilliant everlasting Light at the end of your earth-journey. My finished work on the cross secured this heavenly hope for you, and it is absolutely assured. Moreover, knowing that your story finishes well can fill your present journey with Joy. The more you put your hope in Me, the more My Love-Light shines upon you - brightening your day. Remember that I am with you continually, and I Myself am your Hope!" -- excerpt from Jesus Today by Sarah Young
...continued in Part Six