We’ve had a lot of questions and I thought this might be a good place to answer some of them. A lot of these are generalized for now but will be more detailed plans once we see Huck’s doctors again in March. Right now they just want me to stay. pregnant.
What will happen when he’s born?
As soon as he’s born, they’ll make sure he’s stable and get him to the NICU. He’ll have some things to help him remain stable until his first surgery, like prostaglandin for his lungs, and they’ll do testing and heart echos to get a 100% sure clear idea of how his surgery needs to go. He’ll have his first open heart surgery (the Norwood) within the first week. Second surgery will be at 3-6 months and third surgery will be at 2-3 years old. His most critical time will be the time between first and second surgeries.
When will he get to go home?
They said he’ll get to go home after a few weeks barring any additional complications but our house will be like a mini hospital and we won’t be going many places, if any. We will have to be diligent in limiting visitors and making sure they’re not sick. If he’s around anyone remotely sick or anyone that smokes, it could literally kill him.
How common is HLHS?
HLHS is pretty rare, and according to the CDC, less than 1% of babies born in the US have it which is about 960 babies each year. Congenital heart defects as a group affects 1 in 100 babies. #1in100
What causes it?
They’ve told us that it’s mostly hereditary, but since we don’t have a family history on either side of any type of congenital heart defect they think in our case it was sporadic. Sometimes if the mom doesn’t know she’s pregnant for an extended amount of time, certain medications or lifestyles (drugs, alcohol, smoking) can cause it but we knew we were trying and we knew I was pregnant prior to a missed period, so I was extra careful even before we found out. Not that I do drugs or smoke but I have an occasional beer that I refrained from, starting when we started talking about baby #2.
Where will I deliver?
We live in a small town about 45 minutes from our current OB. We live about 2 and a half hours from where his surgeries will happen in Houston, Texas. I will deliver at the same hospital his surgeries will happen at. We actually have to pick a new OB but that decision will happen after our next appointment with the pediatric cardiologist when we discuss detailed surgery plans and it will also depend a bit on our insurance. Some of you know I lost my job in June of this past year and with that, I lost our insurance coverage. We had to get coverage privately and it has limited the places that accept us, plus being high risk. I’m currently remaining under the care of my original OB and they’re aware of the situation and going to continue monitoring heavily for preeclampsia and checking growth patterns on Huck. They’ve actually increased my visits a little bit and have said they’ll see me every day if need be.
Will he be able to live a normal life?
For the most part, yes. It’s all based individually on each child with HLHS but we have every faith in the world that our boy will get the best care possible and once these doctors perform these miracles on him, he’ll be no different than any other little boy. He probably won’t play sports or run marathons, but let’s be honest… Nolan and I aren’t really sporty people and if you see me running, you better run too because something is chasing me. I’m sure he’ll have plenty of hobbies otherwise. Nolan already talks about hunting and fishing with him. 😍
If you have any other questions, please feel free to ask. I’m glad to answer them if you’re curious. I won’t find anything offensive and to me, it helps to raise awareness about HLHS and congenital heart defects. A lot of HLHS cases are individually based on the specific child so every story you read on the internet is different. Also, February 7-14 is congenital heart defect awareness week.
I also wanted to say a sincere and huge thank you to all of the support we’ve been receiving lately. My mom started a Go Fund Me and I have cried more than once seeing the donations from people we know. My mother in law has cooked dinner for us so many times in the last few weeks and it has been great to have one less thing to think about. My sister in law and brother in law donated the proceeds from a garage sale we had last weekend to help with expenses and my dad and stepmom are planning a benefit event and raffle in April. And just the rest of our family, friends, and community have been amazing at showing their support and offering help and prayers. I’ve had so many people text just to say we were on their minds and I think we’re on every church prayer list in southeast Texas. The amount of gratitude we have is unexplainable. So thank you from the bottom of our hearts.