University of Virginia Heart Center Reunion Picnic with Mended Little Hearts

We went to the UVA Heart Center Picnic a few weekends ago. We thought about going last year, but it was the weekend after Owain was released from the hospital and we were so happy to have him home we had no desire to go back after everything we had be through.

It was exciting to go and meet other families with Cardiac babies and children. It was interesting and comforting to see all these little kids with the big scar on their chest. It was one of those things where I am sure a year and a half ago, I would have thought “Aw, poor little guy” or “Oh how sad, they must be suffering so much”. Odd and strange thoughts. Owain is not a “poor little guy” and he is not in any way sad or suffering. In fact, he bangs his chest on his high chair when he gets excited, and while learning to stand has fallen right on his chest. Two things that even 8-9 months ago I thought would still bother him. He seems to not have any soreness or lingering pain, even though twice in his 13 months he has had his chest cut open…we have a really cool x-ray image of his chest after his surgery when he was 9 days old. It is neat to see the wire they used to hold his chest together, we call it his Iron Man picture.

I wonder what the new metal ties from his October surgery look like now? Looking at Owain now, and all of the others kids I saw at the reunion picnic, now I think of things like, Brave, Strong, and Made of Awesome!

In the month before Owain’s first birthday I had huge amounts of anxiety. On many days it was overwhelming. It was something I was not expecting and threw me off my game. I think one of the weirdest things for me was that I am pregnant again, and in April, just before his birthday my belly was big enough for me to have this odd feeling like I was being transported back in time. I kept thinking about how I was pregnant waiting for Owain, how he was overdue and still not knowing about his Heart Defect. It got to the point where I had a hard time concentrating and couldn’t even make it through the day without crying…it also didn’t help that my current pregnancy hormones magnify all my emotions. And it is not like being pregnant watching one of those birth and baby shows on TV…and every woman who has ever watched those shows while pregnant knows what I mean…you just sit there and cry, baby after baby, episode after episode…its the hormones and you just can’t help it. I would start thinking about his birth and how quickly everything happened…about sitting in the waiting room outside the NICU for hours after he got transported to UVa and being in complete shock…how I just wanted to be back in the recovery room where I delivered him, hanging out with family and holding him and just the thought of all of that was too overwhelming. After almost a year, everything was coming back, all the emotions and fear and anxiety and there was nothing I could do to stop it.

His birthday was wonderfully relaxing and calm. We did very little and had a simple and humble birthday lunch for him with no party. It was enough for me to have him here with us. The weeks following his birthday were just as hard as the weeks before. I would walk out of the house first thing in the morning with the kids to take them to school and just the smell of the air in May was enough to bring back memories of leaving the house early to go to the hospital to sit by his bed. I still felt like I was in some strange floating time, where I couldn’t quite figure out what was going on. I would see flowers blooming and think, hmm, I don’t remember those coming up before…then realizing I missed it last year because I spent all day in the hospital.

It was all very strange, and very difficult to deal with.

He was released from the hospital last year on the 29th of May, and the Heart Center Reunion was on the 30th this year. If they always have it on that same weekend, it will be a nice way to celebrate his home coming every year.

When we got to the picnic, the first thing I saw was the NETS Van, (Newborn Emergency Transport System). It was right there in front of me, before we even parked and got out of the van. I had seen it from far away in the parking lot at UVA and passed by it driving around the hospital and it never affected me emotionally. I would point out to the kids, there is Owain’s ambulance and never think twice about it. This time when I saw it, all the emotions came back all over again. I couldn’t even get out of the van, I just cried. Before we got there, I wanted so bad to see it, and once there, I couldn’t even look at it. It was a huge shock! I was so surprised that I got that upset, I had no idea that it would affect me that way at all. After I settled down, I still had a hard time dealing with it. As we were walking by it, I felt like everything was moving in slow motion. I ran into a few things with Owain and Little Nut Nut’s stroller, but I still couldn’t bring myself to stop and look inside. Looking back at it now, I wish I could have held it together to look inside and talk to the EMTs for a few minutes, but it is something to look forward to for next year.

Being a family with 4 young kids, we ended up getting there later than we had planed and missed most of the activities, but we all had a great time anyways. The kids really didn’t know what they missed out on. There was a huge inflatable bouncy room that the kids went on over and over and that was enough to make them happy. We got to see a few of Owain’s Cardiologists, a few of them we had not seen since he was released a year ago. There was tons of food and we got to sit and have a nice picnic, talking to other Heart Center families and Cardiologists.

While we were eating, I noticed that we were right across from the Mended Little Hearts of Central Virginia table. They are a support group for families with Cardiac Babies and have monthly meetings in the Children’s Hospital at UVa. I have never been able to go…mostly because I didn’t realize that they offered child care during the meetings…which makes total sense that they would, now that I think about it. Mended Little Hearts has awesome care bags that they give out to parents of Heart Babies when they are admitted. It had lots of toiletries for overnight stays, as well as simple and thoughtful things that probably change out, like a little notebook, batteries, crayons and little coloring & activity books for siblings, magazines, and an awesome book called It’s My Heart. That book was so wonderful to have and was such a huge help in learning about Congenital Heart Defects and what we could expect. There were lots of other little things in the bag like snacks, pens, a Mended Little Heart cup and many other things that I can’t now recall. The bag was packed full! They also had a Build a Bear for Owain. The care bags had a little bit of something for everyone in the family and it was the perfect thing to receive, especially going in completely blind and not knowing a thing about Heart Defects.

The most exciting thing about the day was that I found out that there is a new chapter for Mended Little Hearts of Charlottesville! Their table was part of the Central Virginia table. They are a brand new chapter as of this spring and their website just went live very recently. I am excited to learn that I can take all of my kids with me to the meetings and be a part of a support group that will both help our family as well as give us the opportunity to help other families when they find themselves in a situation similar to ours. I think it is wonderful that my children will be able to connect with other siblings of Heart Babies.

I get to go to my first Mended Little Hearts meeting next Monday and I can’t wait! It hasn’t even been a full two weeks since we went to the Heart Center picnic, but it seems like I have been waiting for this meeting forever. I have been trying to write down Owain’s story to submit to the C’Ville chapter for their website, but every time I sit down to do it, I start getting overwhelmed again just thinking about it. I think it will probably take me a few weeks to get the courage to sit down and do it. Who knows, I may just have to wait until after the baby is born so I can sit down without a surge of emotions interfering with my thoughts.