Emma's Heart Day

I vividly remember those moments in time a year ago...waiting for a heart and wondering if there would be one in time. I desperately wanted my baby girl to live. I wanted to take her home and hold her, love her, and watch her grow up. But I also had to constantly remind myself that I might not get to. I didn't want to miss out on those moments we had together in the hospital, in case they were our last. That third week of October was probably the hardest week of my life. Up until that point, there had been so many hard times with Emma. Times when we might lose her. But there's was always hope of something else...another surgery, another procedure. By this point we were still hoping for a transplant, but we were running out of hope. I couldn't possibly hope that another child die so that mine could live. Maybe God's plan didn't include Emma living here on this earth. There was no way for anyone to know if she was going to make it or not, but it sure wasn't looking good. I remember so many tears. I wouldn't leave her room for more than a few minutes to walk down the hallway to the bathroom where I would just sink to the floor, and cry to God in tears of desperation for my daughters life.

Two nights in a row she couldn't sleep through the night, before they reintubated her. She would just wake up screaming, the most horrible screeching screams of pain. They kept increasing her pain medicine, but her poor little heart was physically hurting because of the poor blood flow, which basically caused her to have heart attack type episodes. It felt like a nightmare. 

Other than intubating, sedating, and paralyzing her to take the work off her heart, there wasn't really anything else the doctors could do. Her anatomy disqualified her from some of the other potential options. They just kept telling us that she really just needed a new heart. We still always had a sliver of hope, but I'll admit that it was starting to feel hopeless. We were relieved to find out that she was the only one her age in our region waiting on a heart and she could have any blood type because she was so young that they could just replace her blood type during the surgery. So it was just a matter of a heart her size being available in our region. I couldn't just pray for a heart for Emma because I didn't want to be praying that someone else would lose their child. One of the transplant coordinators reminded us that it's not that a child dies so that yours can live. Because sadly, people die anyways. But organ donation provides their family a beautiful choice to bring life in the midst of tragedy. 

When they told me that, it helped me clarify my own emotions about it all, and I was able to pray that Emma would live long enough until a perfect heart was available for her. And I prayed that in those tragic moments of losing a precious loved one, families would make the decision to donate life. That's exactly what a family did, and it has allowed Emma to live another year. We don't know the family, and may never get to meet them, but because of their decision, Emma has experienced so much life. I'm sure their decision saved other children as well. At least I hope so, because it means that even though their child's life was cut way too short, the life of another child was able to live on. 

We are so thankful that Emma was given a second chance at life, and she has exceeded the expectations of so many. The doctors were so leary of putting that heart into her, because the heart was traveling from so far away, and Emma was so critical.

• She was supposed to come out of surgery on ECMO. But she didn't. That little heart started beating strong right away in the OR. 
• They expected her to have a weak heart, because it had such a long eschemic time. But she doesn't. She has a strong heart that doesn't need any additional heart medication aside from anti-rejection meds. 
• They were supposed to reopen her chest after surgery. But they didn't. They had everyone standing over her ready to reopen, and then her numbers improved right at that moment. 
• She was supposed to need dialysis. But she didn't. 

Those are just a few of the many answered prayers. Everything with surgery that night went perfectly, according to the surgeon. They got her opened up and reconstructed her aortic arch, and as soon as they were ready for the new heart, it arrived right on time. So many problems were expected, but things couldn't have gone more perfectly. We are so thankful for the way God revealed His glory that night and answered thousands of prayers!! Emma's life is truly a miracle. 

We are just amazed and thankful for how well she's doing and for the life she's been given. The donor family will forever be in our hearts. We want to take the best possible care of her hero's heart and never forget the family who lost their baby and then made a choice that saved our baby. 

We are also so thankful for the countless medical staff who have taken care of Emma over the past 17 months. If you are reading this, thank you. You loved our daughter like she was your own. You laughed with us and cried with us. You became like family when we were living in the hospital, and most importantly you worked so hard to keep Emma alive, and for that we are forever grateful.

Thank you also to the family, friends, and thousands of followers who have prayed for us, loved on us, and supported us throughout this journey. We couldn't have done it without you.

As we celebrate Emma's heart day, and honor her heart donor, we ask that you would love extra hard, hug your loved ones a little longer, and find some way to bless someone else today. May God Bless you all. 

Happy Heart Day sweet girl! 

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
Psalm 73:26

Awesome news from clinic day! (1 year post transplant appt)

Today was Emma's monthly transplant clinic day. It started of with a blood draw, which is always hard. But today they needed a lot more blood than normal...20mls to be exact. It made Mickey and I nervous that they'd draw that much blood at once from our baby girl, especially since it's normally around 7-10 mls for her bigger blood draws. But they made sure not to surpass the maximum allowable amount for her weight. The first poke didn't go well at all. Her tiny little vein jumped like it normally does and wiggled out of the way from the needle. Meanwhile Emma screamed and tried to thrash around. It feels like it's getting harder on her, and harder to watch the older she gets. I think since she's starting to understand more and is getting bigger and stronger she's trying to fight them a lot more. But they did manage to get all 20 mls with the second poke, so we are thankful for that! 

Unfortunately the blood draw sets the stage for the echo, ekg, blood pressure, and everything else that follows. But labs just have to be done first because some of them are timed blood draws.

Anyways we managed to get all of the other tests and vitals done, and pretty soon Emma was back to playing and pretty content as long as no one touched her. 

The transplant doctor we saw today hadn't actually seen Emma since last December after discharge, so she was really amazed to see how good she looks! The doctor said that Emma looks fantastic, her echo looked good, her labs all looked good (including BNP which had been elevated and a cause for concern last time!). So she didn't have any concerns for us. What an answer to prayer! Also, because Emma is a year out from transplant now, she doesn't have to take Bactrim anymore, so that's one more med down! It also means we are down to a one page med list!! 

The doctor didn't notice any negative effects on echo from going off sildenafil last month. They will be able to evaluate that better during her cath in January. That brings me to the most surprising and amazing news! Apparently Emma is doing so well, that they canceled her next two transplant clinic appointments and she doesn't have to come back until her cath in JANUARY!!! 3 months from now!! We had no idea a big change like this was coming! We are still in amazement and praising God for this excellent report! 

We still have one other appointment in Seattle next month, and the blood draws every few weeks. But it's just amazing that Emma is so stable that she doesn't need echoes and ekgs every month. She's never gone more than a month without a cardiology appointment, so it makes us a little nervous, but we'll get used to it I'm sure. ;) 

Thank you for your continued prayers! Praise God that Emma is getting to experience Fall outside the hospital this year and her story can be such an encouragement to so many. She's our little miracle. ❤️

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.

Just a little update

We keep thinking that life will slow down and yet it never seems to! So instead of putting off writing because I'm too busy, I'm going to write a quick update on our lives right now.

We are currently living with my parents who have been so gracious and hospitable. Even though we didn't leave our apartment on the best of circumstances (the flooding kind of led to a phase of chaos for us), it's been really nice to have the extra time with my parents. It's been especially good for Emma to have the extra attention from grandparents when they aren't working. :) Right now Emma is doing really well health-wise. She has her "normal", which is much different than the average persons normal. She is still on 8 meds/supplements 3 times a day, has to have vitals checked daily, has to have blood draws every couple of weeks, and has multiple appointments a week (doctors, dieticians, therapists) including a monthly trip to Seattle. We also deal with stomach upsets and diaper blowouts almost daily because of her medications. We are pretty used to the routine of it all, and it feels fairly normal to us. But it can still be exhausting. There are times that I hate the fact that she'll never get to live a "normal" life. But on the flip side, I am so completely grateful that she's alive at all, and she really does seem to enjoy life right now! If I stop and think about it, it all seems somewhat unreal. It just seems like a whirlwind has happened since she's been born. We expected to have a healthy baby and take her home and begin life as a family of three! Instead we had a baby who was born missing half of her heart, thought we would lose her, and then ended up spending most of her first year of life in the hospital, and she ended up receiving the heart of another child who had lost their life. It's just hard to fully grasp all that has happened in the past 16 months. Needless to say, I often struggle to even understand my emotions. But overall Emma is doing well, and she is loving life! She knows how to crawl and she crawls everywhere, even up steps! She recently learned how to pull herself up to standing and cruise along furniture, and she's been having fun getting around that way. She says lots of new words everyday. Some of her words are dada, mama, doggy (oggy), kitty, Minnie (mimi), hot, hi, baba (grandpa), papa, nana. Plus she knows "all done", "more", "please", "eat", "ball", "milk", and "music" in sign language. :) Emma loves to read books and listen/dance to music! She also loves to play with the doggies and has recently discovered how fun it is to share her food with them! She also really loves her Minnie Mouse doll now and if she doesn't know where Minnie is she will try to find her and then give her a hug. It's so sweet. :)

Mickey is on dayshift at work now which has been really nice. He used to be on swing shift and we didn't get to spend the evenings with him. Now he gets to come home and spend time with us after work, which has been a blessing! I'm getting ready to start working a little bit to help with bills. Money has been so tight ever since Emma was born. There were just so many unexpected expenses, but the hardest part was the time off from work, especially since I had to quit my job to be with Emma in the hospital. That was the best decision for our family at the time, but we are entering a new phase of life and I've been praying about other ways to help with finances. We are also getting ready to buy a house and will hopefully close at the end of this month!