Congenital Heart Walk Pittsburgh


Congenital Heart Walk
Justin & Owen at The Pittsburgh Congenital Heart Walk

We had a lovely weekend in Pittsburgh. For 6 long months we’ve been eagerly awaiting this trip. Our nephew Ian was born on November 13th and has faced an uphill battle with a congenital heart defect that has presented him with many challenges. When Ian was first born, we made trips out to the Burgh to be with Meghan and Justin for his birth, first open heart surgery and first challenging weeks of life. Then, my pregnancy was coming to a close and the time to hunker down close to home, coupled with several nasty snow storms started a long road and an unexpected extended period of being away from my sister and her family.

We had fully expected to sit tight, awaiting our little bundle and return to Pittsburgh with our son to meet his Pittsburgh family and to snuggle little Ian. Well, as per the usually, “life is what happens when you’re busy making plans!” As I’ve shared before, Jack was born with his own little challenges and our travel plans were delayed. We were then planning to visit for Easter when Ian was approved by the FDA to undergo a ground breaking procedure that was being done at CS Mott Children’s Hospital in Michigan. He was approved on a Thursday and by Friday, they were on a plane headed to Michigan, making Ian the 3rd human that this procedure was performed on. Again, our visit was postponed.

For anyone who knows me and my sister, you probably know that we are very close. We talk on the phone every day. We have shared everything and been each other’s support system through the the best and the most difficult life experiences since we were little girls. The last few months have been slightly short of torture not being able to be together for some of the most important moments in our lives. This weekend was long awaited, much needed and I don’t think I can ever go that long without my sister again.

Thankfully, Jack is doing great! He has met his weight gain goals right on schedule and we are just waiting for a surgery date for his ostomy reversal. Ian is also doing great! He is recovering back in Pittsburgh in the CICU at Children’s Hospital of Pittsburgh after his surgery in Michigan. With the help of a dissolvable splint created with a 3D printer and an amazing team led by Dr. Green, Ian’s airways are now open and he is pink and breathing and happy (most of the time 🙂 )

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Jack in his carseat, looking happy…for now 🙂

We made the 5 hour drive out to Pittsburgh on Friday. The trip there was a bit rough. Jack hates his carseat and our plan to leave at nap time did not work so well. Not only did he not nap, but he cried and whined for most of the ride and his ostomy bag leaked not once, not twice, but 3 times!!! Needless to say, we were very much looking forward to getting out of that car! Lesson #1 – You really do need a bigger car to travel with a baby and a dog. Lesson #2 – You absolutely can change an ostomy bag 4 times in one day. Yep, it leaked again that night. (Bring more supplies than you ever think you will need. I brought 6 changes and figured that was plenty. We have never had to change his bag more than 3 times in a weekend.) Thank God one of the babies in the CICU with Ian has an ostomy and thank God I have gotten to know his mom. She saved the day and gave me extra supplies for the ride home.

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Owen & Jack

When we arrived, Owen was over the moon excited to see us and his big huge 4 year old bear hug almost made up for all of that lost time and that just made my heart soar! He could not wait to get on the floor and play with Jack and I don’t think I’ve ever seen something so sweet in my life.

Tetralogy of Fallot
Aunt Dee Dee w/Ian. Holding him for the first time. Lookin a little rough after a long, not so fun ride on the Turnpike.

Later that night, Jack stayed with Daddy, Uncle Justin and Owen and I went to the hospital to see Ian. I was able to hold him for the first time, which was like filling up your heart with big warm fuzzies. At first he was a little apprehensive, but quickly warmed up and I even got a smile out of him. It was so good to see him! His skin was pink and he’s getting so big. He loves his wubbanub and can put it in his mouth all by himself.

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On Saturday we took Owen and Jack to Dark Hollow Woods with the dogs for some fresh air and sunshine. I cannot begin to express how good it felt to throw rocks in the water and watch the dogs enjoy the cool water. Some nice, non-heavy, easy, no stress, no worry time!

Saturday night Aunt Meghan watched Jack so John and I could go down to the hospital to spend some time with Ian. He did okay that night. I don’t know what it is about our family, but pooping seems to be an issue all around. Ian has a really tough time when he has to go #2. He had a little bit of trouble when I was holding him and had to go back into his crib. Once he passed his business, he was fine, back to his healthy pink color and fell fast asleep w/his wubby.

Congenital Heart Walk
Ian’s Infantry walk team. We ranked #4 in the top fundraising teams! YAY!

The grand finale of our visit was the Pittsburgh Congential Heart Walk! We were so happy to be there to walk for Ian and show our love and support in the effort to raise awareness for Congenital Heart Disease. It was amazing to see the support of lifelong friends of Meghan and Justin’s, co-workers, family and even Owen’s daycare. We had a great turn out and Ian’s Infantry was in the top 5 teams for funds raised!!!! So beyond proud!

The trip home went much better. Jack slept half of the way home. He whined and cried for the other half. What can we do, the kid just doesn’t like the car seat. But, this time no bag leaks, so that alone made the ride so much better 🙂

 

 

 

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