My name is Alicia, my husbands name is Derek and before our heart baby we had three children, one daughter Charlee (9), two sons Kahl (7), and Waylon (6). On December 19th I found out I was pregnant with our 4th baby and to say we all were excited was an understatement. We had wanted a 4th baby for awhile and our youngest at home was 5 about to be 6. Charlee and Kahl both really wanted a
sister while Waylon didn’t have a preference. It was a fairly normal pregnancy with sickness and fatigue but I was so happy. We could hardly wait to find out the gender. April 10th (our youngest at the time) Waylon’s birthday and the day after Easter it was time for our 20-week scan. My pregnancy was going well still and I was feeling pretty good. We had a fairly new to the job tech and I will never forget that they went and got another tech to take some more looks at baby’s heart. I tried not to get too worked up but inside I was worried. The next day I got the call saying we needed some further scans and would have to drive to Bismarck, ND to MFM for another ultrasound and during that scan it was confirmed our sweet baby had some heart defects. Our doctor was still not convinced they knew all of what was going on but we were told hypoplastic left heart syndrome and double outlet right ventricle. All of this info had me googling and adding pages on Facebook to get some more information. It was all so scary. Our adventure of frequent scans began which I didn’t mind because we got to see our baby a lot. She was a little spitfire both in the womb and out.
These scans and all the information we found out from them made the decision for delivery at Childrens Hospital in Minneapolis. We live 9 hours away from Minneapolis and with having 3 kids at home we knew this was going to be quite the journey that we were going to take head on. We had a ton of support from friends and family who helped take care of our kids and make sure our house was in
order always. I convinced the doctors in Minneapolis to let me relocate at 37.5 weeks instead of 36. I have always had scheduled C-Sections and my water broke with our last baby at 38 weeks and 5 days so I was confident it would be okay. We took off on Sunday August 13th, 2023 and got there late that night and checked into our room at the Ronald McDonald house. A place we will forever be grateful for. I was struggling with high blood pressure and so I knew in my heart our precious baby was coming sooner than 39 weeks and I was right! At my appointment on August 14th the doctor took my blood pressure twice in 10 minutes and it was decided that Miss Gentry Shae was going to make her entrance into the world. At 7:17pm our sweet girl was born weighing 6lbs 12oz and was 19.25in long. We were so in love!
Gentry was immediately taken after a quick peek and IV’s were placed in her umbilical cord and a PICC Line in her arm and she was put on oxygen and put on the CVICU Floor. Derek stayed with me until I went to recovery and then went to be by Gentry’s side. Gentry had Echos and EKGs those first few days and was actually able to come off oxygen. This was just the beginning of her journey of being poked and prodded for IVs and blood draws. We were fairly certain she would need to have her first surgery shortly after birth but we found out she was Hypoplastic and had D-TGA (Transposition of the Great Arteries). It was then told to us our daughter had heterotaxy syndrome. Her liver was midline and she didn’t have a spleen. A swallow study would have to be done to check for malrotated intestines. She was officially diagnosed with Heterotaxy with asplenia, unbalanced AVSD with hypoplastic left heart syndrome, transposition of the great arteries, pulmonary stenosis and bilateral SVC’s. Despite the odds she was holding her own so they kept monitoring her and as the days went on she was showing us all her great strength. She had an episode of high heart rate. She was put on a medicine to help this and it was helping but she had to have a CAT Scan and the dye from the scan mixed with the medicine caused toxicity and a plummet in her heart rate. Due to this they put her on a different medicine that caused glucose issues which is a side effect of the medicine so this was not a surprise. The third time like they say is the charm as the third medicine they tried did the trick. Those were a scary few days with more downs instead of ups and a lot of unanswered questions while things were getting figured out. After meds were figured out things were looking up again. Gentry was moved to IMC because the plan was to go home since she wasn’t needing surgery as soon as they thought. Her oxygen then started dipping in and back to the drawing board as to why and echos weren’t showing anything different but they continued to do tests and swallow studies for aspiration. The swallow studies showed no issues and another Echo was done and Gentry’s PDA was closing and that was causing desaturations so it was decided she would need a BT shunt.
One day before she turned a month old she had her first open heart surgery and like the rockstar she was she came out of that and was extubated a few short days later. She then started feeds by NG tube. She always loved eating but wasn’t always able to get all the calories she needed because she would get tired so they kept her tube in to help with that. We continued working on feeds and she came off all oxygen and by October 5 th we were able to go home. It was a long and exhausting ride but we made it home and we could not wait to have her home and be a family. She was on a lot of meds and we worked hard on feeds and getting all her meds in as they were 3 times a day. She came home with no feeding tube which was amazing. We did bring home a scale to weigh her everyday as well as a
pulse ox machine to spot check heart rate and O2 levels. We doctored a lot while we were home but it was still great to be home.
November 8th, we had another appointment in Bismarck which is 3 hours from home. Unfortunately, her Echo showed her heart AV valve regurgitation had gotten worse and her heart function had decreased. Again, so very scary but we went home while the all the doctors looked at her Echo and EKG and started changing meds. While at home I noticed heavier than normal breathing and reached out to our home health team in Minneapolis and they decided it was best for us to come back to Children's Minnesota to get her medicines managed inpatient. November 17th we were readmitted at Childrens for what we thought may be a week long stay until they could get her regurgitation under control. It turned into us never coming home. After a few days it was decided she needed her second heart surgery known as the Glen as well as an AV valve repair. We were devastated because we knew
they wanted her to be bigger but her heart couldn’t wait.
On November 30 th she went back to the OR and this time was even scarier because this was extensive surgery and we were warned there was not always great results with the tricky valve. Again, our baby came out of surgery without ECMO (life support) and we were ecstatic. Things looked okay. A few short days later there was still not much improvement with heart function but we were still just
giving her body time to heal. A week went by and our baby was in pain and they took her for exploratory abdominal surgery as she was malrotated and she had a twist in her intestine. It was also discovered that she had been poked by her NJ tube when they opened her up on December 9th . That was a tough surgery on our little girl. She was healing from that and her open heart surgery and another few weeks went by and she was still intubated and Echo showed her AV valve regurgitation had gotten worse again. With this news another open heart surgery was scheduled for December 28th .
We had all of our kids in one place for Christmas break and that kept our minds busy trying to get through another surgery. This time the doctors all said she will more than likely come out on ECMO and to just be prepared for that. We prepped ourselves for that and once again she came out NOT on ECMO and we sighed relief. She was however put on a pacemaker during this time. 5 days later on
January 2nd , Gentry went into cardiac arrest and was put on ECMO. Our amazing surgeon and doctors told us Gentry had suffered greatly. CPR was administered for almost an hour until ECMO was placed. Gentry’s new valve was stuck open and not working and her brain was damaged due to the lack of oxygen during the cardiac arrest/CPR. We made the decision on January 4 th to let our Gentry Shae go to
Heaven and be in the arms of Jesus and Mary. This is one of the hardest things we have ever gone through but because of amazing Drs, surgeons, and nurses we were able to have 4 months and 3 weeks with our angel. We met so many amazing heart warriors and their families and we will always hold them in our hearts as we continue to raise awareness about congenital heart defects not just in the month of
February but always. Gentry brought our family so much happiness and joy and she will be forever missed.