Surgery for a broken heart

I can honestly say that yesterday was the scariest day of my life so far. This roller coaster with Max turn a HUGE dip.

It was our first morning since he was born to just stay home with Ella and Alex. No preschool, they were going to Laura's for the afternoon, it was supposed to be a slow, easy start to the day. The kids were crazy, we dropped them at Laura's a little early and thought we were getting a smoother than expected start at the hospital.

I had called to speak with Max's nurse earlier in the day and he indicated his x-ray was a little cloudy, but that's been developing over the last few days, so we were not initially concerned. I wanted to talk to the doctor, since this would be the first morning that we were not there in person for rounds, so we asked to see her when we arrived.

It was such a wonderful start to the afternoon. We had a new nurse, Larry, who let me be more hands on with Max that ever. I have not been able to hold him to my chest yet, and just snuggle, but Larry let me change his diaper and lift him up and hold him inside the isolette a couple of times, while he changed his bedding, etc... It was MARVELOUS! Troy was out making a call the first time and came back to find me crying. I was the closest I've come to holding my boy and I was just so happy to feel his heart beating in my hands. He is so tiny, I didn't know just how light he would be until I picked him up for the first time. I never wanted to put him down.

It wasn't long until he peed out of his diaper and I got to do it again. ( I did offer to let Troy have a turn) And the next thing we knew, a pediatric cardiologist was coming in to do another echo of Max's heart. She talked with us as soon as it was done, told us the PDA (hole in his heart) was "moderate to large" and she could see his heart enlarging. She said the neonatologist would talk to us shortly about treatment options for this.

We had already discussed this ourselves. We've known this leak in his heart, causing a murmur was also causing more problems. It's been there for more than a week, they tried to treat it with medicine, but had to stop after just one dose, when his perforated bowel became the primary concern. Turns out the drug that can help heal his heart can also harm the bowel which is trying to heal as well. Surgery was an option down the road, but they didn't want to attempt anything until his body was stronger and the bowel was healed, because of the risk of infection. He's been on an antibiotic since birth and even before he was born they put me on an antibiotic because of the anticipated infection in my womb. That's helped him, but would it be enough???

The doctor came in to tell us that the PDA (leak in his heart) was bigger than anticipated and getting worse. It was now causing more problems, fluid on his lungs, dangerously low blood pressure, and possibly poor circulation to his already ruptured bowel. She spoke with the pediatric cardiologist who said Max surgery and the pediatric surgeon, who said it needed to be done NOW. We had about 2 hours to sign forms, prep him, meet with the surgeon, anesthesia, and basically say good bye to our son.

I can't tell you how hard I cried when the doctor told us what we already knew. This risk was one we had to take. The surgery was a danger that we didn't even consider 2 days earlier. Now it was necessary, if we wanted Max to survive.

We trust these doctors. They care for Max and if it weren't for Dr. Schooley's diligence in getting another echo of his heart, we might have been too late to save Max. But that's little consolation when you're faced with the reality of what this all means. It's a common surgery, but it's dangerous and when it goes wrong, it's almost always "catastrophic."(according to the surgeon)

When we left Max, he was sedated, unable to move, couldn't even blink his eyes. He was naked, hooked to more wires than ever, and lying on his side in a isolette, all alone. It's the hardest thing I've even done. Saying goodbye to him, knowing how dangerous this all was, and knowing that I had yet to hold him, and the first time might be when he died. Troy and I were both emotionally spent.

It was about 2 hours later when the surgeon came out to tell us the procedure was complete. Max's hole was not "moderate to large" it was "HUGE." In fact, they use a staple to close it up. The surgeon has 3 different sizes that are used on babies, and for Max, he had to find a bigger clip, used for adults. This was going to kill him if the doctors hadn't made the decision to do surgery last night.

It was a rough night, his body learning how to maintain a new, higher blood pressure, his left lung re-inflating after the surgeons had pushed it aside to make way into his heart, and so much more. Troy and I stayed with him until after midnight. We came home to sleep for a few hours and were so relieved to hear good reports from the nurses over the phone.

We are told the 24-48 hours after surgery can be difficult, and we're prepared for the worst. But so far, Max has surprised us at every turn. We cannot believe how strong he is, how he fights everything that's thrown his way, how resilient his body is and how it just keeps coming back for another round. We' re scared of losing him and we are still a long way from anyone telling us he'll survive, but as long as Max keeps fighting, so will we. He has touched our heart already and we just can't imagine life without him. We can only hope this great challenge at the beginning of his life will make our boy stronger, and better prepared to take on the world!