Some 24-36 hour journey we have just had. Wednesday night, I (Brian) went home with my mom for the night. I did not sleep the best, but my plan was to get into work early and head back to the hospital because Kim had been having some rough late morning/early afternoons with Amelia. I have no clue what time Kim called, but there was a potential donor for Amelia. I made it in to work early to get some things done. Kim called, our doctor was headed to the airport. I finished a few things up and headed to the hospital. Our transplant coordinator said we would know by 12:00 noon. Then the call: The doctor found a perfect match and we are a go!!! While Kim and I signed paperwork and talked to everyone involved with her transplant, Amelia slept most of the morning and early afternoon until the nurses and doctors came to take her down to the OR it is about 3:00.
Kim and I took an hour or so to grasp the gravity of where we found ourselves. One year ago, we were about five months pregnant, two weeks from “the phone call” that no parent wants to get and completely unaware of what HLHS is or the journey we find ourselves on right now. Little did we know how much we would grow and how much we would learn. We cried and talked about how we got here and prayed for protection and peace.
Then, we got a call from Kim’s dad saying a vehicle just pulled, flashing lights with big letters spelling out: Organ Transplant. Out jumps a number of people and a cooler. As they walk through the front door, he asks, “Is that for Amelia?” A nod and a smile as Amelia’s heart walks into the hospital. It is about 4:30.
We finish cleaning up the room, taking some of Amelia’s things (swing and highchair) to the car since we will have lots of machines in the room and space is important, and she will not be able to use them for a while. We eat dinner and continue our wait. We were told to expect to wait until around midnight before we are able to see Amelia. We get periodic updates and everything is going well.
Our first “good” update comes from one of the cardiologists. With a smile on his face as wide as my arms will stretch, he tells us she has done AMAZINGLY. We could not have received a better heart! She is doing amazingly and will be up shortly. It is about 8:00. About 30 minutes later, our next “good” update. Our Chief Cardiology Surgeon comes up. His report was even better than the previous. What you have to understand is this. We love our surgeon! He is brilliant. But, he is straight up honest, to the point and matter of fact. He does not show emotion. We understand this and have come to expect it. He is brilliant and fights very hard for his patients. When he left, we knew that she did GREAT!!!
We were finally able to come to her room about 10:00. She looked so much better than we ever expected. We were ready for her to be similar to what we saw after her first surgery, limp on her bed. However, it looked like she was peacefully sleeping (with a 1000 line and tubes and wires, but sleeping). We watched as the nurses moved and arranged her IV lines and wires and everything else. Kim and I finally tried to crawl into bed for some sleep about 1:00. Tried is the key word. There were 3 nurses in our room with every light on. We were tired enough that sleep came. We awoke to our transplant NP in our room and one of the ICU NP talking about extubating her, which they did at 9:20. She has been doing wonderful since.
It has been amazing, scary, exciting, wrenching, tiring and wonderful to walk this road. We have a long rode yet to walk. The next 12 months are critical for Amelia. We will be watching closely for rejection. Kim and I will be learning a new set of medicines, complications, rejections and side effects. We will have to learn a new baby. That is exciting and scary for us. We have done it once…we will do it again.
God continues to show is exceedingly abundant Love and Grace toward Kim and I and our Lady Bug. We are grateful for the wisdom and knowledge He has provided our doctors to know how to treat her. He has giving Kim and I the strength to walk this road with Amelia and Amelia the strength to strive despite the difficulties and complications she has been dealt. We are humbled by the love we have been shown.
Please pray for continues recovery. Pray for Kim and I as we care for Amelia and continue to raise her. Pray the doctors are able to identify and treat any problems that come alone and that Amelia’s body will not reject this foreign material that has been implanted in her body.
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