If I’m going to ask you to invest time and energy in reading my blog, I should at least tell you our story. For the sake of my son’s privacy, I’m not going to outline all of the medical details, but I’ll give you the highlights.
N was born perfectly healthy. We had a normal pregnancy, a natural delivery, and we had no major hiccoughs in the hospital. My husband and I spent seven wonderful, albeit sleepless weeks at home with our perfect baby boy. We even had several lengthy conversations about how lucky we were that he was so healthy and such an easy-going child. Seriously, we were spoiled.
When he was seven weeks old, N suffered an unexpected cardiac arrest at home while nursing. Thankfully, my husband and I were with him when it happened, and my parents and two aunts were down visiting, so we had extra help with calling 911, performing CPR, and getting the life-saving help he needed. He was ambulanced to our local hospital, stabilized there, and then transported to the local pediatric intensive care unit. We spent a couple days there while he underwent several tests. He had another cardiac arrest there, and it took several hours for the staff to stabilize him again. At that point, they couldn’t really do anything else for him, so he was airlifted to Shands in Gainesville to their pediatric cardiac ICU. He had a third cardiac arrest there before they decided to place him on Extra-Corporeal Membrane Oxygenation, or ECMO (aka, life support). The system acted as his heart, lungs, and kidneys to sustain him until another route for treatment could be taken. This was the point of no return.
The moment my family and I were told that N would need a heart transplant will forever be seared into my memory. When the doctors told us, I could barely breathe. My head was swimming. How could this happen? He was so healthy and perfect! What did we do to deserve this? He’s just a baby. I remember screaming that to my husband in frantic hysteria while they were resuscitating him before putting him on ECMO. He’s just a baby! How could this happen so suddenly and without warning? What was happening to my precious boy?
After he was stabilized, our transplant coordinator came in to talk us through what it meant to wait for a heart transplant. I just remember thinking to myself, “Okay, that sounds like a simple enough concept. Let’s do this. Do anything you have to do to save him.” And then she started outlining everything that a transplant actually entailed, not just the immediate surgery, but all of the accompanying medical processes. She told us about the medications he’d be on for the rest of his life; about the vaccines he couldn’t get; about how immune compromised he’d be; about how, at any time, his body could reject the transplant and we’d have to start over from the beginning of the process. Everything around me dissolved into a fog as a million questions bubbled up in my brain. What am I supposed to do? I know nothing about raising a child in general; how am I supposed to raise a child with all of this “extra stuff” to deal with? I couldn’t comprehend it all.
He was on ECMO for a couple weeks before they decided to try to wean him off of it; for other medical reasons it was extremely dangerous to keep him on this system. They were able to successfully wean him, and his heart sustained him with very limited functionality for almost another two weeks. Then, due to an infection, his heart failed completely, and he was put back on ECMO for another week and a half. After that, we had no other option but to have him put on a Berlin heart pump while we waited for a donor heart. He had his Berlin for ten days before receiving his miracle gift. I’ll never forget that phone call as long as I live.
From there, we were still several frustrating weeks from going home, because N had to learn how to be a baby again. Luckily, though, we had incredible speech and occupational therapists teach him how to suck on a bottle and eat. Our amazing respiratory techs helped wean him off of his ventilator and develop his lung capacity. The physical therapists were phenomenal and incredibly inventive when it came to strengthening his core and extremities while he was on sternal precautions. We truly had an army of doctors, nurses, and technicians helping us fight our battle, and I cannot speak highly enough of those amazing men and women. I owe them everything. They are angels, and I am thankful every second of every day for their dedication and expertise. They helped us get N back home.
Even with all that we’ve been through, we’ve been exceptionally lucky to have the support and love of so very many people. I can’t even come up with the words to express how grateful I am for everyone who has helped us through this last year. And while I feel like every minute we were in that hospital lasted an eternity, the whole ordeal, from his first cardiac arrest to him getting his heart, was only fifty days. We joke now that N’s great storm wasn’t forty days and nights, it was fifty. And even with the extra time after his transplant, we were only in the hospital for eleven and a half weeks. Seventy-nine days. To many waiting for a life-saving organ, that’s the blink of an eye. There was a patient in our ward who waited on his Berlin for over a year for his heart. A year!! We were so incredibly lucky with how everything worked out for our N.
But our journey has really just begun, and we are so excited to see where it leads us!