Friday, June 7, 2013

Happy 2nd Heart Day, Super Joe!

Last year I had the idea to celebrate Joey's Heart Day-- the yearly anniversary of his open heart surgery. We don't do anything major, but we get a cake and we thank God for watching over Joey for helping him repair part of his heart. It's just a little moment we take to celebrate how far Joey has come along in his journey

2012 Heart Day

Joey has been a fighter since before he was born. Overcoming a septated cystic hygroma around his brain, fetal hydrops (excessive fluid built up all around his body), fetal ascites (fluid built up around his abdomen late in the pregnancy) and congenital heart defects were the first battles our Super Joe faced before he was even born.

Our doctor decided he needed to be delivered 3 weeks early due to all of the fluid build up. It was an incredible day-- August 27, 2010.

He was born with extremely high bilirubin levels and spent his first 8 days of life under the bilirubin lights.

He was never able to breastfeed, but after a few weeks we finally figured out the way to help him drink thickened breast milk through tiny little bottles that I pumped for six months.

People have asked us why we took Joey to Michigan for his surgery. For us it was simple. We looked at the top five pediatric heart surgery programs in the country. Then, because Joey was not allowed to fly, we narrowed it down to those in the top five that we could drive to. That is how we arrived at The University of Michigan. From there, we researched and learned that Dr. Bove was the surgeon we wanted for Joey. 

Joey's original congenital heart defects were a PDA (that closed on its own), a large ASD in the middle of his heart and a leaky mitral valve. The surgery in Michigan repaired his ASD and attempted to repair his mitral valve, but it was too small at the time, so they were only able to put one stitch into it.

Since his surgery we follow up with our local cardiologist who has been Joey's doctor since he was in utero. Dr. Khan is an awesome, awesome cardiologist. During our latest follow up and echocardiogram we found out that Joey's PDA has re-opened. It is currently a very small hole, but it, along with his leaky mitral valve are still closely followed and at some point will likely need surgery again.

Two years ago tonight we tried to get to sleep in the Med Inn at the University of Michigan C.S. Mott's Children's Hospital. For nine days we stayed inside the hospital and never left. The day before Joey's open heart surgery we spent almost 7 hours in pre-op appointments and twice his surgery was almost called off due to his white blood count levels and his thyroid levels. Late the night before we got the call that the surgery would still go on. 

This picture still cracks me up!

One of the hardest parts of going away for Joey's surgery was leaving his little brother, Tommy behind at home.  At the time Tommy was 2 1/2 and we had never spent this much time away from him. To help, we got him a bear that has a "repaired" heart to try to help explain what we were doing with Joey. We sent him a "mended heart bear".

Mended Heart Bear

After turning Joey over to anesthesia we headed up to the family waiting area and waited and waited and waited for what seemed like forever. When we finally got the page that he was out of surgery we were both excited and scared.  What would he be like? What would he look like? 

Here is what it was like:

Bloated. On what seemed like a million machines. In a medically induced coma. This was what post-surgery looked like for about 36 hours and then slowly but surely we were able to hold him again and every day another piece of machinery and tubing was slowly taken away until he started to look like our Joey.

And finally, he found his sweet smile...

It's hard to believe this was our little man two years ago. We are so grateful to get this chance to look at where he was and how far he has come and to celebrate his beautiful little life.

2013 Heart Day Cake with two sets of stitches for his two repairs.

Joey's life has given our lives a reason to celebrate every single day. We celebrate the major milestones like his heart day as well as the minor ones such as him starting to say "hi", "Hersh", "Jo Jo", "please" and "bye". We celebrate his "new" braces which are really his old braces that have been shortened and are working much better. In the past two months I have received texts from four different people who have all had dreams that Joey had started walking. That will soon be our next celebration-- there is no doubt!

Thank you for celebrating his story and his life with us and we hope you have a very happy heart day as well!!!

Dottie and Super Joe

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