On August 15, 2021, we relocated from our new home in Tallahassee to my parents’ lake house in Interlachen (45 minutes from Shands)

On 8/31, I had a scheduled c section so that our baby could have a chance at life. I held him for approximately 10 minutes as I lay on the operating table, and then he was whisked away to the NICU. Later that evening, as Matthew and a doctor (who I later learned is the top pediatric anesthesiologist and a pediatric cardiologist) moved him from the NICU to the PCICU, our baby stopped breathing. He was resuscitated and that became the first of many scary situations that the Lord brought him and us through.

In the first 2 weeks of his life, Benjamin made 2 trips to the cath lab where the doctors tried to place a stent into his PDA valve. Twice, Benjamin didn’t cooperate. The valve refused to close and cost the team several hours just waiting to see what he would do. Looking at it now, I see that God was probably keeping the valve open to direct us down this path.

At the ripe old age of 2 weeks, Benjamin had a shunt placed in his heart, as well as a ventricular assist device (VAD). Plastic cannulas were surgically placed through his skin and sutured to his heart. This machine proved to be a blessing and a curse.

In November 2021, Benjamin suffered a stroke and several invisible (as in no physical signs) seizures.

On December 3, 2021, he suffered a second stroke. I can’t remember if there was seizure activity this time.

On January 1, 2022, he was diagnosed with COVID. For approximately 2 weeks, I was his only allowed visitor. He didn’t get terribly sick, but his respiratory symptoms took longer than we expected to resolve.

In January/February he also fought a blood infection and a skin infection. Also during that time, the team took him to the cath lab again and discovered that his heart was improving. There was a great deal of talk of weaning him from the VAD (surgically removing the machine) but the top minds couldn’t come to a unanimous decision. Again, I see the hand of God driving the decision making. Although at the time, it felt like we’d been blindsided by another disappointment.

On March 15, Benjamin finally received the match we’d been waiting for and he’s been grooving ever since.

The heart was described as being perfect for Benjamin, which is absolutely wild. But it’s absolutely God. For months and months, I’d prayed that Benjamin’s heart would grow big and strong. And it had. Just not in the ways I’d expected. Or wanted, honestly. Less than 4 hours after surgery completion, Benjamin was extubated and trying to wake up!

Three weeks later, on April 5, he came home to the lake house! The last 7 days have been a whirlwind and a dream. We’re learning his med routine, and feeding schedule. We’re finally learning his different cries and really just getting to know him in a way that wasn’t possible in the hospital. We told Marjorie that Benjamin broke out of the hospital, and now she’s convinced he actually BROKE the top off the hospital and now it has people-eating birds in it. (No idea, but she’ll def need counseling when she’s older.)

On Monday, May 2, we came h-o-m-e to “The Blue House”. The weekend before, a group of our family and friends descended upon our house to get our house ready for us. They did all the house projects and yard projects and probably things I don’t even know about. When we arrived in town, all of our neighbors wanted to know where we’d been and how we were and I’ve never been so thankful for our street!

Benjamin’s now been home for a week, is taking all of his daytime feeds BY MOUTH and yesterday, with the help of OT, tried baby food for the first time. And loved it. Naturally.

We were gone from our new home for 262 days. 217 of those, my baby spent in the hospital. Thank you to everyone who has walked alongside us, carried us, dragged us, wept and laughed and prayed with us. And to all of the doctors, nurses, PAs, ARNPs, therapists, techs, and surgeons who worked tirelessly to save my son’s life, I will forever be grateful.

I’ve also learned that my understanding of who God is needs work, but I’m so thankful that He saw fit to provide a chance of life for my son. And is currently sustaining him and the rest of my family as we figure out the start of this next season. We’re slowly getting our bearings, and loving every moment as a family of 4.