“The Lord has done great things for us, and we are filled with joy.” Psalm 126:11
It’s funny to sit down to type up the events of the past few days because every stage was “steady as she goes” and every minute was surreal. Every step was laced with peace and hesitancy. Our minds are having a hard time grasping that one week ago our Little’s heart stopped five times in one day and this week her heart is pumping with such ferocity that you can see her chest rising and falling. It is truly amazing.
The beginning of this phase of our journey found me sitting down to get some work done in the CICU family lounge. Jeremy and our Coordinator came walking in with funny looks on their faces and I had just enough time to get nervous before they announced in unison that we had an offer! SO MANY EMOTIONS all at once and quite a few intense thoughts pounding through my brain! Little had been so sick they hadn’t been sure they would accept if an offer were made. The donor’s family would have just heard such devastating news of their own. What do we do first? Should I put my computer back away? Jeremy steadily explained that Little would be getting a CAT scan in four hours to check and make sure her colon and brain were well and then the transplant decision would be made. It was exciting but there was a hesitancy because the answer could be no. I sat down and did the work I was planning to do – steady as she goes.
They took Little down for the scan at 4:45 PM. She was so sick that they didn’t need to give her medicine to help her stay still! It had become obvious to me that each day her heart was getting worse and worse and there was an unexplainable peace as she went to radiology – THIS was His perfect time for Little. It was going to be time for her to go be with Him or time for her to get a heart. It was surreal. I mean, we went downstairs to get some dinner and the phone rang while Jeremy was standing at the salad bar. Dr. A told Jeremy that the scan looked great, we were going to accept the offer and the operating room had been scheduled for 4:00 AM. We paid for our food and walked over to a table, our heads shaking the entire way. We were thrilled … amazed … hesitant.
Just because we accepted the offer it didn’t mean Little would get the heart. They had to go get it and check it and they could reject it all the way up until the moment it was supposed to be sewn in.
What did we do next? We called all of our family and told them the news! We went upstairs and kissed Little goodnight! We went to the RMH and went to bed! That’s right! We slept from 9—12 PM and then returned to the hospital at 1 AM to give Little the news and make sure we didn’t miss anything.
I am sure that anyone I tell this story will be wondering what Little said when she found out about her new heart. I think they will be disappointed, but will better understand how sick she was at the time. She had her last episode of vfib on Wednesday night and had been sedated through Sunday. During that time we had stayed away because the sound of our voices made her blood pressure go up and she would start to cough and then there was risk to her sick heart. She had been awake one day but we had only made short visits because of that same response/risk. When we came in to give her the big news we found out that she had yet to sleep a wink that night and when she saw us arrive it had the opposite effect this time – she relaxed and snuggled down to go to sleep.
We went in and leaned over her and said, “Little, before you fall asleep we want you to know that we think they have found your new heart.” Her head popped up and her eyes got big and she said, “Did they really?” We smiled and let her know that we think so and so we were going to get her ready for surgery and get her sleeping, but we won’t know until after she’s asleep if it’s the right one. She said, “Okay” and snuggled back down and fell asleep – “Steady as she goes!”
I think my favorite moment between then and surgery happened just before they took her away. Our pastor had arrived to pray with us, which he did, and then he read the verse that Little has been calling “her verse” since Easter. Ezekiel 36:26, “And I will give you a new heart, and a new spirit I will put within you. And I will remove the heart of stone from your flesh and give you a heart of flesh.” As he read it Little’s head popped up for the first time and she said, “Who is reading that?” I stepped over to her and said, “That’s Mr. Hoskins. Did you hear him reading your verse?” He stepped into her line of sight as she was talking and it went like this, “I did hear him – heeeeeeeeeey!” Her eyes lit up and she half-smiled before putting her head back down and shutting her eyes again.
They took her back to the OR later than planned and we went to the waiting room to … wait, of course, and to field phone calls in-between updates from the nurse:
- “We have her cleaned up and ready – we are just waiting for the surgeon.”
- “Hey Andy. They just took her back. It should take 6 hours -ish.”
- “She is open and ready – we are just waiting for the delivery.”
- “Hey Mom. We just watched them walk by with a cooler. It’s here. We’ll know in a bit if they plan to accept it.
- “Her old heart is out and she is on the bypass machine.”
- “Hey Anna. Oh, my baby girl is on a table with no heart at the moment.”
- “They have just a couple more sutures but her new heart is already trying to beat on it’s own!”
- “It’s done! She looks great! They are closing up the incision.”
- Text to Family, “Done.”
We weren’t allowed to go back and see her for several hours. Her blood pressure was all over the place and they needed to get her settled in her room and everything in place to help get that under control. When we were allowed back they gave us a stethoscope to listen to her heart and that is when I finally cried. It was so loud and strong and there was such relief and gratefulness mixed with such agony and sadness.
They told us they expected her to be asleep for a day or so and neither Jeremy or I wanted the anxiety of watching them fight with her blood pressure and so we went to our room and went to bed. Turns out she woke up before we did and we arrived at the hospital the next morning to find the breathing tube gone and her sitting up in bed playing with the iPad!!!!!!!
“The Lord has done great things for us, and we are filled with joy.” Psalm 126:11
Little facts to remember:
- Her sick heart was gray and done. They said it just laid flat when they took it out. The Lord sustained her until the perfect time.
- They don’t tell us about he donor and that is by design. I don’t think I will ever look at our girl without thinking of this mystery person/family and it is better that there isn’t a lot of information to go with that.
- Her new heart is BIG. The Lord used “Jabba the Heart” (Little’s sick heart) to make space in her chest cavity for “Dwayne” (Little’s healthy heart). He knew her donor and He knew what she would need and He made a way. The heart has been adjusting to it’s new home and will continue to do so. For now her organs are getting a LOT of blood flow where there had been very little. Her feet are actually warm and you can see the blood in her veins.
- When she woke up she asked for Root Beer.
I am a bit nervous that folks will stop praying and we need prayer now as much as ever. They say that the transplant is not a cure – you are trading one chronic illness for another. Next week we begin discharge education and we will learn about the medications Little will take to help her body not reject “Dwayne”. There are foods she can’t eat and foods that will be important for her to eat. She’ll be completely immuno-supressed and we’ll need to learn what that means for her and our family and how we live. We pray that Little doesn’t reject “Dwayne” and that Jeremy and I can retain all the information they throw at us next week.
I am struggling more with anxiety now than I did pre-op. I’m realizing that while I was saying “My hope is YOU alone” I was putting quite a bit of hope in that new heart. The Lord has taken that out of the equation and there is nothing left to hope in but Him. I pray that I will trust Him – He is obviously trustworthy.
We have to stay in Denver for three months once discharged and so our attention now turns to making arrangements for that. The RMH will only let you have two children … we have three … and so we are making arrangements for an apartment so the family can be together more easily and often. We are praying for those details to fall into place.
KB and Bubba are in KY with my Uncle’s family now and will return next week. We pray that they have a good time, are safe, and get home safely. We are praying for them as they adjust to this new phase of life too. I pray that this will build compassion and flexibility instead of bitterness and frustration.
We long to walk in a way worthy of Him. We are thankful for those who have gone before us and lived lives worth emulating – none of them have had these exact circumstances but that’s why we live by principles derived from Truth. We are thankful for those who are praying for us as we navigate this amazing road to which He has called us. And so thankful for the multitudes who have prayed with us this far. It is humbling to see the Body of Christ at work in such a way … it’s amazing.