Journey to Transplant: Part 3

Some of my memories are a little fuzzy from the emotions and trauma of it all, but please bear with me as I try to share our story. After almost losing Emma that September night in Spokane, we were very shaken up and weren't sure what to expect next. The doctors plans were to try to get as much fluid off Emma as possible, in hopes of getting rid of the fluid that had built up around her lungs. The hope was that doing so would help her heart function improve. But as time went on (which hours felt like days back then...) it became clear that there were more issues than just the fluid on the lungs. Her heart was very enlarged and the right ventricle was really struggling to do the work of the entire heart.

We never expected her heart to start failing so soon. After the hybrid went well, we thought we were in the clear, at least for awhile. We had read so many success stories of kids with HLHS. There is a series of surgeries (Norwood, Glenn, and Fontan), to help an HLHS child live with only half of a heart. But it turned out that Emma's heart just couldn't handle it. The initial plan was to continue monitoring her heart to see if it improved with the new meds she was on, and they also scheduled a cath for Tuesday (5 days after being admitted) to go in and see if there was anything that needed to be ballooned or stented. They wanted to try to get her more stable before the cath and on echo it didn't look like there would be anything they could do.

In the meantime the doctors starting talking to us about options. We basically had two options: comfort care or transplant evaluation. There wasn't even a choice in our minds. Of course we would go for a transplant. We were willing to do whatever it took to give our baby a chance at life. The day she was born we were given the choice to let her die, and we chose to proceed with a very risky surgery, because it gave her a chance at life. We knew that her life was in God's hands and He knew the number of her days. It's not up to us to decide that. Yes, she could have died in that very first surgery, but she didn't for a reason. So likewise, as we proceeded towards transplant we did so with the understanding that she might never make it, but no matter what, her life is in God's hands. We believe that Emma will live no matter what, either here on earth, or in heaven with our heavenly Father.

So Emma's fight continued. In the days leading up to the cath, we began pushing to get transferred to Seattle for transplant evaluation. Some of the doctors were supportive and others weren't. But we knew we needed to get to Seattle, because she needed to be somewhere with a pediatric transplant center. The day of the cath came and they were 98% sure that there would be no intervention that they could do. But we said that no matter the outcome, we still wanted to be transferred and get a second opinion. It turned out that there actually was some narrowing, which was a good thing, because there was something they could fix! They placed a stent in her aortic arch and although Emma did not show immediate improvement, that improved blood flow would help her get through the next several weeks.

At some point after cath, Emma had another heart episode. Her heart rate started dropping rapidly and her eyes rolled back in her head. It looked like she seized. This was so scary, especially since she was already intubated at this point. It was another one of those terrifying moments that you never want to experience. After that, it was unclear whether these episodes she was having had to do with her heart, or if they were seizures. So then began the 24 hour eeg to watch brain activity and check for seizures. They also went ahead and started her on anti-seizure medication...because if it was a seizure, her heart and body couldn't take much more trauma like that. It ended up showing that she didn't have any seizures in that 24 hour period and everything looked okay. So it must've been her heart. The team in Spokane tried to get her extubated for transport...but that didn't work.

Monday morning, the day after Emma turned 4 months old, we left for Seattle. That day was so full of emotions. We were headed to Seattle to have Emma evaluated for transplant, knowing that this was her last chance. That was terrifying. Mickey and Emma flew with Medstar and I drove. I knew that Mickey would handle dealing with a new hospital/new team better and I wanted to be able to stop and pump milk if I needed to...I also really appreciated the time in the car to process my emotions and pray. As an introvert, I really needed some space from everything and all the people. It was so hard to leave Sacred Heart though. The team there had become like family and the hospital felt like home. I went back to the Ronald McDonald house and packed up. They knew the situation and told me not to worry about cleaning the room and just to get on the road. It meant the world to me for them to give me that extra time to get to Seattle to be with Mickey and Emma. They also gave me restaurant and gas giftcards for the trip. I was in tears because of everything...all of the emotions of the day, as well as the amazing kindness I was being shown. I stopped at the Dutch Bros to get some caffeine to get me through the trip. I ordered and paid and then the barista asked what I was doing today. So I told her. "My daughter is being lifeflighted to Seattle to be evaluated for transplant, so I'm driving there to meet her." I'm sure that barista must have been a bit shocked... I don't even remember what she said. I just remember that she was so sweet and gave me two fully stamped punch cards to use when we got back. So many acts of kindness carried me through that day, and have also carried us through the past 16 months. I stand amazed as I look back and am reminded of all of the love we've been shown.

I got to Seattle and had no idea where I was going, but was able to meet up with Mickey in the CICU. I had milk in hand, so they could restart Emma's feeds. In the process of transport, milk was forgotten, so Emma had to go a few hours without it until I could get there. Then I said hi to my baby girl and met her nurse. I had only been there for a few minutes before Mickey and I were taken back to a conference room to speak with the heart transplant doctor on duty. They had evaluated Emma's scans and cath results and not only was her heart function very poor, but she also had a leaky valve. They were certain that a transplant was her only option at this point. After talking with the doctor for quite a while and asking many questions, we signed paperwork and the transplant evaluation began.

It was a weeklong process, but it felt so much longer. She had to have more scans done and many blood tests, and we had lots of paperwork to read through and fill out. But what made it so long was wondering if she would be approved. There had been a couple doctors she had seen previously who had told us that she might not make it onto the transplant list. This put a lot of fear in our minds that I wish we wouldn't have had. But it also pushed us to rely on God that much more. During that transplant evaluation week, Emma began making improvements and was able to be extubated! Being on milrinone to help her heart pump was helping so much. It wasn’t enough to fix anything, but just to give her body a break for a little while. The day finally came when we got word that she was listed 1A (top priority) on the transplant list! We were overjoyed!! Of course we didn’t want her to have to have a transplant at all, but since that was her only hope, we were thrilled that this was one step closer to her getting a second chance at life.

Since Emma had stabilized and showed so much improvement, we figured she would be okay waiting months for a heart. They had told us of a child in a similar situation who waited a year, but another child in a similar situation who waited only 24 hours. The average wait time was 3 months. So we began our wait. It was so strange waking up every day not knowing if today would be the day…that became more true the more time had passed. In the meantime we enjoyed the days together. Mickey went back to work during the week and came back over for the weekends. That meant he was 7 hours away from us most of the time, so we really looked forward to the weekends. 3 weeks passed.

 Then one weekend my mom and older sister came to visit us. That weekend Emma started throwing up a lot. We figured it was just her normal response to them increasing her calories. The nurse that weekend told us that it could also be a sign of heart failure. But I was sure it was just because they had increased the fortifying formula to increase her calories. My mom and Elizabeth left on Sunday to go back home and Mickey left on Sunday to go to a military training in Georgia. The nurse who had been on that weekend went home and a new nurse took over. That’s when things got really bad. The weekend nurse was exactly right. All the vomiting was a sign of worsening heart failure. I guess I just didn’t want that to be true. But that evening Emma was throwing up even more. She was absolutely miserable. She was having trouble keeping her sats up, and she started letting out these horrific screams of pain. That night there was talk of intubating her. They ended up trying cpap instead and then going back to highflow because she hated cpap so much.

On Tuesday, the doctor, transplant coordinator, and social worker came in to talk to me. I knew it wasn’t good. The transplant doctor was preparing me for the fact that Emma wasn’t going to make it much longer, and they were running out of options for her. They were going to try another cath to see if they could open up her aortic arch anymore to help with blood flow. They planned to intubate, sedate, and paralyze her in order to take as much work off the heart as possible. They also expanded the search region and the size of heart they were willing to accept, because they knew that Emma might only have a few days left to live. Mickey got on a flight back to Seattle that day. He got to hear her voice a little bit and see her smile before she was intubated and sedated. He was so excited to see her and Emma was so happy to see her daddy again. We didn’t know if we would ever see her smile again after that. Thursday morning they intubated her and started the sedation and paralytic. They wanted her to stay as calm as possible and we weren’t even allowed to turn on Frozen for her, because they were worried the sounds might stimulate her too much.

That Friday Emma went back to the cath lab. We were so nervous because of all the risks associated with this procedure. One of the major risks was that if they ballooned or stented, it would stop the blood flow for a second and could potentially stop her heart, due to her anatomy and heart function at the time. They weren’t sure she would be able to recover from her heart stopping, even just for a few seconds. We spent so much time praying and just clinging to God. Eventually we received word that they were done and Emma was doing okay. Praise the Lord!! The doctor told us that he was able to place another stent and in doing so created a better curve of the aortic arch to help with the blood flow. They expected this to help her improve, at least for awhile.

On Saturday, the Heart Transplant Doctor told us that her heart function hadn’t improved as much as they expected or wanted but they were going to give her just a relaxing day without any changes. That day, my sister was there visiting us and doing what she could to help out but really, nothing short of a heart transplant was going to help. We just spent time with Emma, trying to cherish every moment. As we came back from ordering pizza for lunch, the doctor walked into the room. This seemed odd to us, since they weren’t planning on making any changes that day. He then told us that they were accepting a heart for her – but with much hesitation because it was a high risk heart.