Heart Hero of the Month July 2023

Story by, ❤️Mom & Dad

Our CHD Story

Our story starts just like everyone else’s that is on this same journey: with the diagnosis. Our pregnancy went as expected and we were slowly getting excited to meet our little girl. On June 15^th, 2018, we welcomed our first child, Skyler Hoerstkamp. Although delivery did not go as planned and required me to be bedridden, we were ecstatic to become a family of three.

Later that night when the nurse asked us if we would like our daughter to spend the night in the nursery, my husband and I thought that this would be best. At 2:00 in the morning, one of the nurses comes in to explain to us that something had happened to Skyler while in the nursery and that in a couple of minutes the doctor would be in to explain more of what was happening. I will be honest, what happened next still is a blur to me as my husband and I listened to the doctor explain to us that our daughter had turned blue, and something was wrong with her heart. He would go on to explain that she is being transported to Omaha Children’s Hospital for further examination and we would have time to see her one last time. Since I was not able to be discharged, I would remain at Lakeside Hospital so I could continue healing while my husband would go with our daughter. After a tearful goodbye, I sat there alone and confused. To this day, I will still never forget the nurse that came in and just sat there, silently crying with me. In that moment, I felt just a little less alone.

The next day, as soon as I was able to be discharged, I joined my husband at Children’s Hospital. We would have a multitude of doctors come in to explain that our daughter had Tetralogy of Fallot and would someday need surgery to fix the hole in her heart. However, their main concern was that she had a cyst in her nasal cavity that was blocking her airflow that would need to be removed. At 6 days old, Skyler had her first surgery. The surgery lasted less than an hour and quickly we saw her oxygen rate go up from there. However, during this surgery, it was discovered that something was going on with the blood flow in her head. Again, after a multitude of neurology doctors would explain that they aren’t confident about what is going on in her head and that we were going to just monitor to see how it progresses. For now, they would diagnose this as a vascular malformation of the brain and there was nothing else we needed to do except watch for her hitting her milestones.

Over the next couple of days, Skyler would progress in her healing to the point where the doctors felt comfortable releasing us from the hospital without requiring heart surgery. At 10 days old, we were able to come home together as a family of three for the first time! This joy was short-lived as Skyler would turn a blueish-grey color after bath time. We did as we were instructed and put her knees to her chest while we called cardiology. After calming us down, they explained that after bath time it could be normal to turn that color if it was cold in the room but it would be a good idea to set up an appointment to get it checked out.

During this appointment, the doctors informed us that during our week at home, enough had changed with her heart that it was time for surgery. On July 18^th, 2018 surrounded by our family, Skyler would arrive at Omaha Children’s Hospital for her open-heart surgery. We all patiently waited in the pre-op room, not saying a word, just waiting for what would come next. Slowly nurses and doctors filled the room where we were told what to expect during surgery and it was time to say our “see you later”. Another nurse led us off to a reserved room where we would receive updates during surgery.

Words cannot describe how it feels to hand your baby over to the doctors and all you can do is just pray that everything goes well.

Hours had passed, as we paced the room waiting for any updates. What had felt like an eternity, finally our surgeon, Dr. Hammel, entered with good news about a successful surgery and someone would be up to take us to our daughter in the ICU.

Nothing prepares you for seeing your child hooked up to every machine possible. I remember looking at my daughter, with a puffy face, bandages over her chest and a breathing tube down her throat, thinking that this is not my daughter.

How could what they have done help save her when all I see is my daughter in pain and I am not able to comfort her. Over the next week, we would soon figure out our new normal and how to take care of her once we were home. We were anxious but ready to be home again!

Time would pass and we would slowly start our healing process for what we had gone through. Although our family and friends always meant well when they would ask us how we were doing, they never really understood what the three of us had undergone. It would be my dad that would tell us all about how one of his coworkers had told him about getting Skyler her own cape from an organization called Heart Heroes. We would also come to learn about different Facebook groups we can join and different Heart Heroes events around the Omaha area all supporting heart heroes. It felt nice to be a part of a community that understood how it felt without us having to explain it all over again and relive that moment. I loved being able to see how all these older kids were living life to the fullest like it was no big deal! Our hearts and minds would soon forget all that we went through with each cardiology appointment that told us Skyler is doing great!

However, at a regular 2-year check-up, our pediatrician told us it was time to get an MRI to make sure everything in her head was still looking good. Since Skyler had hit every one of her milestones, we had no reason to worry. When I personally received a phone call from our doctor at work, I knew this was not good. She explained that the MRI had shown this mass of blood vessels had grown and she is sending us to a specialist for more testing. Overcome with grief, I left work early to just be with my husband and my daughter, once again just feeling alone and confused.

Over the next 6 months and tons of meetings with numerous specialists, numerous MRIs, CAT Scans and angiograms, we finally had an answer to what was going on in Skyler’s head. Skyler was also diagnosed with a rare genetic disease called MoyaMoya and would need neurosurgery. We felt lost and like we were right back where we started. We knew this time felt different than the cardio surgery. Without her cardio issue, we had seen the warning signs and understood it was time for surgery. This time, we didn’t understand. When I looked at my daughter, I saw a normal healthy child. So many questions ran through our head with the number one question being, what if we go through with this surgery and it makes things worse for her? We reached out to one of the top MoyaMoya surgeons at Boston’s Children’s Hospital. We needed answers. Dr. Smith explained what this diagnosis means and how lucky we were to find it when we did. He explained that we could wait but it could lead to Skyler having a stroke one day. The other question that ran through our head is what if this surgery doesn’t take? This surgery had only a 50% chance of being successful and may require another surgery in the future if it doesn’t take.

After a lot of discussions and many tears, we decided to go through with surgery and that we would be traveling to Boston for this procedure. This time, we knew Skyler would be a baby and not remember. This time, she would be a 3-year-old that would understand that someone is causing her pain. Once again, we felt ready to put all this behind us. Thankfully through Brandon’s work, we were able to meet another heart warrior family who lent us their condo in Boston since they often traveled there for their daughter’s heart procedures. We felt a little less alone this time with the support of another heart-warrior family. When we arrived in Boston, Skyler is starting to question what is happening. As a parent, it was hard to explain to our daughter that this may cause some “ouchies” but she will feel better when it is all over, even though she didn’t feel bad before surgery started. It was a gut-wrenching conversation to have.

On November 16^th, 2021, surrounded by our parents, we arrived at Boston Children’s Hospital where we would be staying overnight to start IV fluids before surgery. Not only did this time feel different because we were in an unfamiliar city, but we were also getting surgery during covid and procedures were in place. Unfortunately, that meant that only the parents could be there waiting with Skyler but our parents stayed nearby to wait for any update we could give as well. Knowing what was going to happen the next day, neither of us was able to sleep a wink that night. On November 17^th, 2021, just like before, we had all sorts of doctors and nurses slowly enter the room. Dr. Smith explained what will happen during the procedure and promised us that he would take care of Skyler as if she was one of her own daughters. At this point, tears filled my eyes as once again we had to tell Skyler to “have a goodnight and we will see you when you wake up”. You would think because we have done this before that we would know what happens next, but it doesn’t get any easier the next time around. Once again, we had to hand our daughter over to the doctors and all we could do was just pray everything would go well. Hours passed again and all we could do was wait. Thankfully, Dr. Smith would return to tell us everything went pleasantly boring which is what he likes to see! Although it was hard seeing our little girl in so much pain and hooked up to every machine possible, recovery did go smoothly. Shortly, we were able to return to our normal lives like nothing had happened.  We would have follow-up appointments throughout the year, and Dr. Smith was pleased to tell us that surgery did take. We now are on yearly check-ups to make sure it continues to progress the way it should.

Looking back at our journey, I wouldn’t wish these moments on some of my worst enemies. But I can’t help but feel proud of how strong my little girl is! She has never let her diagnosis stop her from accomplishing her goals. When you look at her, you would never guess that she has undergone so much at such a young age because she looks like any other ‘normal’ kid. With support from other heart warrior families that we meet along the way, it’s been nice to be able to move forward and see my daughter reach her full potential. Just like any other superhero, that cape is her badge of honor and I can’t wait to see how she will be able to use her superpower to help others one day.