Monday, 3/14, started out just like any other day – my mom and I met at the hospital so she could see Benjamin. Shortly after we arrived in his room, the transplant team came in. But they have stopped by periodically over the last several months and were just checking in. My mom was able to ask them a lot of logistics questions and we both left that conversation feeling relieved knowing that when “the call” came, we would have ample time for someone to come get Marjorie. They told us it would be probably 12-24 hours after the call that the surgery would happen. And that while they were receiving calls about him, they’d yet to find a heart that was “the” one. 

So we ate lunch, got the baby dressed, and proceeded with our afternoon of snuggling. A little bit later, maybe around 1 or 2 pm, we looked up to see the transplant team coming back into the room. Our wonderful coordinator (Stephanie) had been in clinic earlier in the day, so I just assumed she came for a visit. Boy was I wrong! As they came in and gathered around my mom, Benjamin, and me, Stephanie told me that the team had some exciting news that they wanted to tell me. I proceeded to tell her to “Stop it” repeatedly. And was just shocked/in disbelief. It didn’t (doesn’t) seem real. But they had been offered a heart that checked all of the boxes that he needed. 

*READER DISCRETION ADVISED – TALKING ABOUT AN ORGAN DONOR IS SUCH A BEAUTIFUL, EMOTIONAL THING. WE HAVE BEEN PROCESSING IT FOR MONTHS AND WHILE I WON’T BE GOING INTO MEDICAL DETAIL, PLEASE DON’T READ FURTHER UNLESS YOU’RE SURE YOU WANT TO HEAR MORE ABOUT OUR TRANSPLANT DAY EXPERIENCE. 

Time slowed down and sped up all at once. There were forms to sign, and phone calls to make. I video called Matthew while the team was in the room to tell him, because I couldn’t believe it myself. Then we had a video call with my mom, dad, and mother in law to give them the news/spread the word. Because my mom was already in the hospital room with me, we decided that she would go to the lake house (45 minutes away) so that Matthew could pack a bag and be at the hospital with me. Then my dad met her at the lake, and my inlaws planned to drive from Tallahassee to Shands. 

As afternoon became evening, Matthew and I went to eat dinner although I really just felt nauseated. I don’t know how many times I used the phrase “I’m going to throw up”. Matthew and I spent the evening hours in the hospital, because our OR time had been set for 1 AM. We have heard that Benjamin usually sleeps all night, but he must have sensed something was happening because he was wired! We snuggled right up until it was time to take him to the OR. 

This was moments before we walked with him to the OR. He had been awake all evening, and then finally fell asleep on me. I cried, begging God to protect my baby and bring him through. Transplant isn’t a guarantee, and we were now on the cusp of the moment I had been dreading since June 1 (diagnosis day).

Walking from the OR into the hospital waiting area in the middle of the night was the most surreal experience. My mom and inlaws met us (my dad was at the lake with Marjorie) and we sat there, getting more delirious with every passing moment. Texts and FB messages came pouring in, and I failed to respond to almost all of them. Our church had an overnight prayer meeting that we crashed for a few minutes. At around 4:30 AM, our beloved Pastor Josh texted Matthew and me that he was on his way. To the hospital in Gainesville. From Tallahassee. In the meantime, we all sprawled out on the waiting room furniture. At around 5 AM, a waiting room attendant arrived and fussed at us for rearranging, and made us put the chairs back in their normal places because the waiting room was about to get busy. (It didn’t.) 

Josh arrived at the hospital around 6 (I think), and then we got word shortly after that the surgery had gone well, and that they were just monitoring Benjamin for a few hours. They were able to close his chest immediately after the surgery instead of waiting a few days, and he has been a nonstop beast ever since. But I’m getting ahead of myself. Following the surgery, the incredible, miracle working Dr. Bleiweis came and talked to us. Hugged us. Told us that the heart was perfect, and that Benjamin was doing great. This man, this genius man, put the VAD into my baby’s heart at 2 weeks old, told us that he didn’t feel comfortable weaning the VAD/attempting the other surgical option, and then held our baby’s actual heart(s) in his hands and gave him a chance of life. I asked him, probably repeatedly, if I was hallucinating when he gave us the good news that surgery was over and had gone so well. I once stopped him outside the Chick-fil-a that I have frequented way too many times, and asked him to please let me know if he ever thought things were getting to be too much for Benjamin. He never gave up on him, on us. And quite literally saved his life. 

The waiting room party ended around 11ish, and everyone went their seperate ways. Matthew and I finally got to see Benjamin around noon and his (Benjamin’s) eyes were O-P-E-N. Just a few hours after surgery and he was fighting sedation and trying to get the breathing tube out. He was in baby handcuffs and raging. The breathing tube was removed shortly after. 

That afternoon/night, Matthew and I got a hotel room across the street from the hospital. Matthew fell asleep almost immediately, and I attempted a nap but ended up watching The Office. I found myself back at the hospital later that evening, and back in the hotel around 9. {Funny side story. A new friend and I went for coffee that evening, and on the way back into the unit a nurse stopped us and told us we needed to use the red phone to be buzzed in. We just looked at her like “You must be new”. And then kept walking. It was just so silly because the day that my baby was literally the most talked about on the unit is when a newbie tried to stop us. But if any of my 10-2 fam are reading this, just pretend you didn’t 😉 } 

I finally fell asleep around 11 pm, after being awake for over 36 hours. If you know me, you know I turn into a pumpkin at around 10 pm, so I was entirely loopy by the 36 hour mark. But our nurses were so kind, although I’m sure I was out of my mind. 

The next day (maybe 2 days later?) Dr. Bleiweis came into our room and told me that he was so happy with how Benjamin was doing. Then he said “And no hallucinations, either.” I sat in my chair thinking “How can you tell if a baby’s hallucinating?” and then said “OH YOU MEAN ME” 😀 I’ve had plenty of dumb moments to the staff on this journey, but that was the icing on the cake! 

Since transplant (aka over the last week), Benjamin has come off all sedation and pain meds, and is literally rocking it. We went outside for the first time ever on Sunday, and naturally he pooped. Everywhere. 

Benjamin Matthew, you are my hero. The difference over the last 7 days is amazing. I don’t know what the future holds for you, my handsome boy. But I do know that God has brought you this far.

#prayforbabybenjamin #chdwarrior #chunkymuffin #becauseofadonor #passthecoffee