Every year we host an amazing community event filled with a celebration, a remembrance time for our heart warrior angels, we have vendors, raffles, an auction, food trucks, a 1 mile walk in remembrance and in celebration of heart warriors like Hudson, and SO much fun. We even decided to add a timed 5K to this year's event for all of our competitive running folk!
Since this pandemic has come and changed everything we decided to go ahead with the event, but with socially distanced staggered start times, and also in providing a virtual option.
Unfortunately we won't be able have the big celebration, or the vendors, or many of the fun things we love about this special. However, we will still run/walk to honor our heart angels and heart warriors, and also to continue to raise awareness for CHD. Additionally, we are excited to still have the opportunity to share our 2021 Jax Healing Hearts Race Ambassadors and their stories! Today we are sharing sweet baby Hudson! His mom has beautifully shared their journey with us while reminding us all of how important this heart community is! I also want to add there is still time to join us on February 21st, click the Jax Healing Hearts link above to register by February 7th!
…Later in December we found out we would be having another boy. After about 45 minutes of difficulty trying to see all 4 chambers of the heart, our sonographer decided that we should probably be referred for a more in-depth scan. I wasn’t really concerned. We had been referred before on our previous pregnancy and everything turned out fine. The appointment was made the same day and soon after we were sitting at our second scan. This sonographer let us know she needed to step out and grab the doctor. The doctor came in and of course gave us all the good news first. Then he told us he wanted to discuss Hudson’s heart. After a pretty in depth talk and showing us the defect on the scan, he told us that they thought he likely had Hypoplastic Left Heart Syndrome (HLHS) and without surgical intervention the defect would be considered fatal. Immediately, I burst out in tears, trying to hold it together for just a few more moments so he could finish his conversation with us. My husband did a good job of being the listener after that because I was pretty much numb.
After leaving, I had pretty much done what felt like a years worth of research on just our drive home. I began networking over the next few days. Trying to come in contact with every parent I could whose child had received the same or similar diagnosis. That’s when I found The Healing Hearts Project and how I met some of the people who would give me advice that would help change our sweet boy’s life and my own.
It would be 5 weeks before we got in to have another scan and meet with cardiology. At that scan the cardiologist felt like maybe this wasn’t HLHS, which was a huge shock to us. Everyone we had spoken to prior were all so certain that it was. They guessed that maybe it was this or that, but never really pinned down an answer. The pregnancy pretty much dragged on after that and we had scans every 2-3 weeks.
Fast forward to delivery, Hudson was born and they of course whisked him away to do a full cardiac workup where we received the final diagnosis, Shone’s Complex, where a lot of his left heart features were smaller. Hudson did have a hypoplastic left ventricle, but it was functioning sufficiently and at 7 days old they decided it was time to do an arch repair. The big concern was whether or not that hypoplastic left ventricle would in fact function well enough or would pressure begin to build on the right side of the heart. As we’ve learned, plans can change in an instant and surgery was postponed for 8 more days. We were sad and frustrated. A lot of tears were shed in those 8 days, but what we didn’t know was God was working on Hudson. In those 8 days Hudson’s heart changed. His left ventricle was no longer considered hypoplastic. His arch looked less constricted. His VSD closed on its own and even his aortic valve improved. God had basically taken every fear we had about that hypoplastic left ventricle and threw it away. We learned the beauty in waiting and the value in trusting God, that He knows the perfect timing for all things and we do not.
Surgery day was tough, you’re basically handing your most precious gift over to strangers at their mercy and saying “please bring it back safely.” From the time we left him at the OR doors to the time he rolled passed past us in the waiting room after surgery was about 6 hours, the longest 6 hours of my life. God had given us an overwhelming sense of peace though, so we just waited patiently for the updates. I had kept myself together pretty well that morning, it wasn’t until I saw my sweet boy laying in his warmer, hooked up to what felt like every IV, tube, drain, and machine in that whole hospital that my heart just broke. There is no amount of prep that prepares you for that moment. However, THHP and the wonderful families were there cheering us on, offering surgery day meals and the sweet mamas in the group were checking in frequently on Hudson for the 30 days we spend in the Cardiac ICU.
After leaving, I think I probably reached out to the people I had met through THHP daily seeking advice for therapy, O2 monitoring, follow ups, car seat riding… the list is infinite. Having these people there to hold my hand and help ease my nerves as we made the transition to “normal” life was vital.
Hudson is now a thriving 4 months old. We’ve been very fortunate to keep our little man healthy. We still have a lot of watching and waiting for his cardiac anomalies, but his current status is no more surgeries in the near future. Hudson’s scar now serves as a reminder of the wonderful grace and miracle God has given us. I hope he always wears it proudly as a testimony for not only himself but for his dad and I also.
THHP provides so much support for local heart families. 1 in 100 babies are born with heart defects. Prior to Hudson’s diagnosis, I’ll be honest, I had no clue how prevalent heart disease was in infants. This group provides hope through networking. And in this most complicated time of COVID when only one parent is allowed at bedside, they provide snacks and toiletry items for that mom and dad who are glued to their sweet baby’s bedside. What a blessing they are to be able to provide these local families a surgery day meal, where in that moment the parents and families are so overwhelmed. Most importantly THHP is a group where we can help spread awareness about congenital heart disease and provide love and hope to all the families who are currently living through the unknowns and those to come. I’m thankful to have been loved on by the members of this group and am thankful we get to share and support others as they transition through these moments.
-Hudson's mom, Rebecca