Transplant 3--A little background

I was 22 years old and 16 weeks pregnant with our second baby when we heard devastating news about Bela's anatomy.. she would not be compatible with life. They were sure enough about this that even though my Dr. knew how we would feel about it, he assured me it was okay to consider aborting the pregnancy because in the next few weeks I would spontaneously miscarry her. She had Turner’s syndrome and 99% do not survive in utero to birth. On top of that we were told she had Hypoplastic Left Heart Syndrome, a single ventricle heart, so the two together were not going to be survivable. 

So everyday I did the terrible task of doing ‘kick counts’. Everyday I waited to stop feeling her move. Everyday I waited to make the call that it was time to come in and deliver my stillborn baby. But she was still kicking strong at 30 weeks, and so I started going in for twice weekly appointments to monitor her heart rate and movements. Everyone was surprised. It was hard to even know what emotions to have. We weren’t given a lot of hope, if any, and I knew that if she was somehow born alive, my tiny newborn would undergo open heart surgery within her first week with very little chance of surviving it. So I didn't even know what to feel or what to want. I was mostly just sad and scared for the pain that was surely coming for our young family. 

On leap day of all days, she decided to make her debut at 38 weeks. She was tiny, but cried right away and I had been told that would be a very good sign if she did that. She was whisked away from me after getting to look at her for a few seconds. I was immediately deeply in love and deeply afraid. She was kept in the nicu and on a breathing tube, sedated and given meds that would keep her alive until the surgery. Tanner gave her a name and a blessing. Benson came to meet her. On her 6th day of life she went back for an experimental procedure that would be less invasive because she was so weak, but also more risky.  They had tried it on two other babies before Bela and neither baby had lived, but they still felt it was her best chance. I never held her before she went back. Throughout all of this, I never doubted once who was in charge. Bela’s life would be what God intended it to be. We would do everything in our power to give her more time with us, but ultimately He would be the one to make that call for her. At the time, I very much thought it would be a short time that we would get with her, and I was grateful for every minute I had with her. We sung to her, held her hand, and prayed for peace. 

My five pound baby girl, who was already born an absolute miracle, made it through surgery. She recovered from surgery. She came home. Again I didn’t know how long we’d have. Some nights I stayed awake most of the night watching her.  I pumped and tube-fed her constantly to try to get her to grow, and cleaned up a lot of vomit. We kept her as safe as we could. It was beautiful but exhausting. We were back and forth from the hospital all the time. I tried to do my best and trust in God’s plan for my life. By His grace, she made it to 6 months and finally 10 pounds, which was her goal weight to have her second, big surgery. They would do both the first and second stage surgeries together. It was going to be an even bigger feat for her. They weren’t sure what her body would do, how the Turner Syndrome would affect her because they had no data to go off of. We sent her back knowing she was in God’s hands again. It was incredibly painful to say goodbye. 

I remember not recognizing her when she came back. She was SO swollen and puffed up. She had a crazy scary recovery with a couple of code blues. We heard a lot during the next few months after what a fighter she was. It made me proud and happy, although I didn’t quite know how to understand that. I watched a lot of babies pass away born that same year with her. Were they not fighters? I don’t believe that. I held to my faith that it was all God’s plan for them.  But there was no denying that she had divine help and a strong will to live.  She again pulled through.

We were in and out of the hospital a lot that first year.  She got an infection in her incision that had to be reopened and cleaned out, and also had double pneumonia where she barely made it to the ICU in time before she coded and was intubated for awhile to rest her lungs.  It was hard to watch her go through so much. It was hard to understand sometimes. But we learned a whole lot that year, and we were grateful for the service of many who helped us through it.  We tried to acknowledge God's hand as much as we could, for we felt we saw it constantly.

Fast forward to August 2012, she was 4 1/2 and she had lived an amazing 3 years and was the sweetest, happiest little toddler. FULL of life. She loved to sing and dance and adored her older brother and her baby sister. Taking her in for that third surgery was at that point that hardest thing I’d done in my life.  With every piece of me I did not want to do it. But again there was no choice. I think that might be the hardest part to stomach.  All of this just to experience life, something I got to just simply do. Why so much? How much could she take?  I think you have to make a choice in life everyday.. We aren't in charge, so we chose to trust that God is. When we choose to have faith and hope in that, we also choose Christ’s strength to be with us. I know He gives His children what they need to get through their trails because I’ve witnessed it time and time again. 

She did really well during the third surgery and came home only 3 short weeks later.  It was another miracle no one really knew how to explain. The amount of times we heard she "beat all the odds” or “exceeded expectations” up until that point in her life was humbling. 

Sorry to make some of you just read a lot of what you already knew if you’ve known Bela since birth. But I wanted to write it here in a concise version because I feel I can’t share her transplant story without sharing all of that. Grace and miracles had already been written ALL over Bela's story.