Wednesday, March 28, 2012

2 years post surgery

A Good Anniversary to Forget - Part I

(disclaimer: I can't talk about this topic and be brief!!)

Many of you know Jack had open heart surgery when he was a baby. The two year anniversary of his surgery was last weekend, but it passed unnoticed at our house. I realized it a few days later and it's had me doing some reflecting.

We didn't know about Jack's heart defect when he was born. There was nothing abnormal detected in his ultrasounds and when that big 8 lb, 10 oz baby came out, he seemed the picture of health. (I have to say I even wanted to pat myself on the back when he got a 9 and 10 on his Apgar scores at birth, as in I may not have done it at all gracefully, but I did just birth a healthy baby!)

The next morning, the pediatrician visited while I was taking a shower. Jacob said she heard a murmur when listening to his heart, that it was probably nothing serious, but they'd like to do a heart echo (ultrasound) to make sure. I took his recount at face value and we continued to celebrate our healthy baby. But then the doctor came back that afternoon and I could tell from her face when she walked in that we were about to get unsettling news. In a kind twist of fate, her own son had been born with a similar heart defect, so she had a lot of empathy as she told us that Jack had a medium sized hole in between his ventricles (Ventricular Septal Defect). Even with just the initial ultrasound, she warned that while many VSDs close on their own, the placement and size of Jack's made him a likely candidate for needing it closed surgically. I remember looking over at Jack and feeling so sad all of the sudden (such a shift from the emotions of the previous 24 hrs). He was so small and helpless and I felt sad and even guilty that he hadn't been born fully healthy. I also was scared. I knew nothing about heart defects and it just seemed so frightening to think of his little heart not being formed right. How was this going to affect him?

The pediatrician set us up with a cardiologist visit a few days later and had us come into the pediatrician's office weekly for Jack's first month. We quickly became educated and learned that Jack would be closely monitored to see how the VSD affected him as his lungs and heart started to work together in his first weeks of life. They would be most interested in his ability to gain weight - i.e. would the "exercise" of both eating and breathing tire him out?

After a scare at the one week mark (a night in the ER and at the Children's Hospital bc of Jack's really rapid breathing rate), we were thrilled to watch Jack turn into a very chunky baby. After a month of being seen frequently by the pediatrician and the cardiologist, everyone seemed to breathe easier and feel like Jack was doing excellently and not showing any adverse signs of his VSD. As long as he was doing well, the doctors would give his heart time to see if it could heal on its own.

It was this mindset that we went in to a check-up with the cardiologist when Jack was 2.5 months old. We were so in love with this precious child and were starting to feel really good about his health. At his cardiologist visits, he would have a heart echo done, vital signs taken, and then the doctor would review the ultrasound and then come and chat with us. We took this picture while we were waiting.

And then WHAM, when the cardiologist came in, he explained that in Jack's first ultrasound, some slight muscle growth had been noticed in his right ventricle (we knew about this, but the amount of it was not something we were told should be concerning). At this ultrasound, a dramatic growth in the muscle was seen, nearly dividing Jack's right ventricle into two chambers (leaving him with a "double chambered right ventricle".) This muscle was growing because of the inefficient way Jack's heart was pumping bc of his VSD. The cardiologist felt like surgery was necessary and probably needed soon, but he wanted to confer with the surgeons in his practice.

I made it to the car before the tears came. It was news that felt like it came out of nowhere;we had been told all along that Jack's VSD would most likely not close on its own and would need to be closed surgically, but he had just seemed SO healthy and everyone had been so positive in the last month that we were just not expecting to leave that appointment with surgery on the horizon.

A few days later we got confirmation that the cardiology group was in consensus that Jack needed surgery and that it should happen within the next month. The nurse got on the phone with me to schedule the surgery and to walk me through what to expect. I quietly cried through the call as everything she described just seemed so foreign and scary.

It was about 3 weeks between learning about the surgery and the actual day, which allowed us to prepare for the experience, both logistically, spiritually, and mentally. So many families that have to go through scary health experiences don't get that luxury and we realized we were lucky. My parents flew down to take care of us so we could take care of Jack. Jacob's mom made plans to be in town. Jack's surgery was to be at Children's Hospital, only 10 minutes from our house, and they were excellent in providing information in advance.

At times I felt calm and at peace, but a lot of other times I felt incredibly scared. I couldn't imagine handing my child over to a team of people I didn't know and literally trusting them with his life. It hurt me to know that Jack would hurt through this experience. And it was all just so unknown, it was hard to wrap my mind around it.

to be continued...

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