Hello, my name is Jennifer VanDooren Cromwell, and my little heart warrior is Indy Cromwell. I am her mother and her caregiver.
Our journey began when I was 16 weeks pregnant and getting the phone call about our baby’s gender and down syndrome screening. My doctor told me my baby had a 96% chance of having down syndrome. And then proceeded to ask me if I wanted to make arrangements for an abortion twice before even telling me she was a little girl. I remember the call like it was yesterday. I was driving down the highway and felt like someone had knocked the breath out of me. I felt as though I was in a dream. I knew nothing about children with down syndrome, so fear set in instantly. But I did know abortion was never an option for my family. The following weeks were a blur. I found out down syndrome babies have a 50% chance of having heart defects. I was saddened to think of the possibility of my baby living a life in and out of hospitals. We prayed she was one of the ones that had a healthy heart. After being sent to a maternal fetal specialist we soon found out that wasn’t the case. Not only did she have 1 heart defect she had 2. We found out she has Tetralogy of Fallot with Atrioventricular Septal Defect. The next bad news we received was I had to deliver this baby in Ft Worth or Houston TX. That was the closest hospital with a pediatric cardiothoracic surgeon. Me and my husband were devastated to say the least. We then began traveling to Cook Children’s Hospital in Fort Worth for multiple sonograms on our baby girl’s heart. Every appointment seemed to bring more bad news. I lived in fear and anxiety my entire pregnancy. We were told how severe her heart defects actually were. She would need open heart surgery as soon as she was born and several more after that. I remember questioning if this baby was even going to survive after birth. I will be honest, after never receiving any good news from the doctors it was hard to be positive. There were days I lost my faith altogether. After a few weeks of processing the news my husband became the positive and strong one for us. And our wonderful parents kept the faith for us. They would always tell us everything is going to be ok. I prayed that was true.
We soon found out baby girl was breech and I would need a c-section. We were told to pack up and head to Ft Worth at my 37 weeks date in case I went into early labor. I went in for check up a few days after we arrived in Ft Worth only to find out our baby wasn’t growing like she should along with some other complications. We were told we were having this baby today. We were in shock and clearly not prepared. But ready or not, here she comes! Our amazing parents rushed down to Ft Worth as soon as possible. They couldn’t come to the hospital, but they were still such a great support system and would get us anything we needed.
Indy James Cromwell was born at 9:38 pm on March 24, 2021. As soon as she was born, they whisked her away to the NICU at Cook Children’s Hospital. My husband got to take a quick pic and told me how beautiful she was. I barely caught a glimpse of her as the doctors rolled her by in an incubator. It was 3 long days before I got to meet my baby girl. I was in so much pain and she was in the hospital next door which required a long walk to get there. When I did finally get to meet her, she was the most precious baby girl I had ever seen! It was hard to see her with all the tubes and wires hooked up to her. We spent 32 long days in the NICU because she was so small and couldn’t keep her temperature where it needed to be. After several more tests now that she was here, we found out she didn’t need open heart surgery at this time. She did end up getting a balloon catheter procedure to open up one of her valves. She did great and we were released 3 days later. We went home on 1 medicine for her heart. We met her cardiologist in Midland every 2 months for checkups. She was doing so well.
Then at her September checkup, the time came schedule her heart open heart surgery. It was such a strange feeling of being scared and anxious but also ready for it to be here, get her heart fixed and get it over with. So, on October 12th our family, along with both our wonderful parents, loaded up and headed for Ft Worth. Her surgery was re-scheduled 3 times which caused much grief. But I told myself God has this all planned out and will happen when it’s supposed to. On October 18th at 9:35 am we handed our precious baby girl over to a surgeon, who we had only met twice, to stop our baby’s heart and repair her tiny walnut sized heart. It was the hardest day of our lives. I remember thinking this could possibly be the last time I see this baby alive, but I clung to hope and my faith that God was going to hold tightly this baby girl in his hand. After 6 long hours, we were told the surgery went great and the surgeon had repaired the holes in her heart and divided the bundles of RV muscles. We got to give her a quick kiss as they were taking her to the recovery room. She was mostly covered up, but she looked so good.
We went back to the waiting room and waited some more. When it was time to go to her room and see her, devastation set it. Along with multiple wires and tubes coming out of her and being on a ventilator, she was also bluish in color. They told us she was having a hard time. The left chamber of her heart wasn't pumping like it should have been after surgery. This was making it hard for her to breathe on her own. The next 3 days were a blur to say the least. I heard a few stories of babies getting this surgery and being released from the hospital in 7 or 8 days. That definitely wasn’t the case for us. I’ll never forget one of the doctors sitting me down and telling me, “Your baby is very critical and sick” she must turn a corner and soon. I was so scared, I begged God to heal this baby. I reached out to my wonderful friends and family and asked them to pray with us. Indy has an amazing team of prayer warriors. This baby girl came into the world on her own time, and she was going to heal on her own time. The amazing doctors in the CICU worked on her day in and day out. The next day our prayers were answered! They said she still had a long way to go, but she was headed in the right direction. The cardiologist had told us 10 days was the average for a hospital stay for this surgery. We were there 22 days. This baby girl likes to keep us on our toes for sure. We were sent home on 6 medications. To say we were overwhelmed would be an understatement. I’m so thankful God sent me a fellow down syndrome/heart momma angel friend who helped make us a medicine schedule. We couldn’t wait to get home.
Besides some sleep issues from being woken up so much in the hospital this baby girl has done amazing! We just went to her post 5 month check up and got wonderful news. She gets to drop a medicine and start weaning off her oxygen medicine. She is now down to 2 medicines. The doctor said her heart looks great and we don’t have to go back for another 4 months. She will eventually need another open-heart surgery to replace her valve but the doctor said this could be 10 years down the road, thank goodness. This baby has taught me more about my faith than I ever thought possible. There are still some days I don’t understand everything we’ve gone through, but I know we serve a loving God and I’m so thankful He chose me to be Indy’s mom. I wish I could go back and tell my scared pregnant self that everything was going to be better than ok, its going to be amazing and this baby is going to bring you more joy than you ever thought possible! Of course, there will be hard days but if there weren’t hard days, we wouldn’t appreciate the good days as much. This story wouldn’t be complete if I didn’t tell you about all our amazing friends and family that helped us so much during this journey. We couldn’t have made it with our all these wonderful people that prayed for us and supported us every step of the way and I’ll forever be grateful.
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