Kai’s Story - Congenital Diaphragmatic Hernia
We found out our diagnosis at 22 weeks pregnant. We were following up about a short cervix when they found the defect. We were TERRIFIED of what this meant for our little girl. While googling for answers, we came across Tiny Hero and Fore Hadley. We reached out and were paired with other families to talk to and ask questions. Honestly, this scared me more because I was hearing firsthand how hard it would be and how difficult of a journey our little princess had waiting for her. Because of our diagnosis, we were considered a high-risk pregnancy, which meant many doctor appointments and even more non-stress tests. At about 29 weeks, the doctor started seeing dips in Kai’s heartbeat, ultimately leading to me being hospitalized at 33 weeks for constant monitoring.
After several weeks in the hospital, I was finally induced at 37 weeks. After 16 hours of labor and a failed epidural, I was rushed to the OR to start pushing. They were afraid she would need more care than she did at birth or that it would become an emergency c-section, so I had to deliver in the OR just in case. I remember the nurses yelling as they rushed me to the OR that her heart rate was dropping and I had to get her out ASAP. After about five minutes of pushing, she was here! And much to our surprise, she cried. She shocked EVERYONE! There were about 20 people there to help with delivery, and the NICU team was there waiting for her. She was immediately scooped up by the NICU team and intubated. And she was on her way to the NICU in a matter of minutes. After hearing her cry, after weeks of doctors telling me she would not be able to, I knew she was going to be a fighter.
When she was four days old, she had her repair surgery. Those were the longest four hours of my life! The doctor told us everything went well and I broke down crying. I was so relieved yet so scared for her next step. But I knew she was strong and I knew she would fight through everything thrown at her. They were able to stitch the hernia closed without the need for the mesh patch. Which we were told has a lower chance of reherniation in the future.
At one week, she was weaned off all her pain meds. At two weeks old, we got to hold her for the first time. She was so tiny, and I remember being so happy to FINALLY have her in my arms. They took her breathing tube out at about eighteen days and switched her to a cannula. She also finally got cleared to start feeding. She was a quick learner and quickly learned how to drink from a bottle, but with the feeds came the emesis. She had horrible acid reflux, making keeping food down a bit hard. They put in an NG tube so we could help her with feeding and keeping it down. On day twenty, she was off the ventilator and breathing room air. On day twenty-four, the NG tube came out and she was strictly bottle-fed but she struggled to gain weight, so they had her drinking formula mixed to get extra calories. She was progressing so well that they began talking about her coming home — we finally had a goal to reach! On day twenty-eight, we got the call asking if we wanted to bring her home. They had us come in the next day to room in with her so we could adjust to her schedule and learn how to feed her and give her meds on our own. I barely slept. I remember just watching her like she was a porcelain doll. The next day, I remember being so proud to report how well our night was, but I remember being so afraid they wouldn’t let her come home for some reason. But after a month in the NICU, my little superhero was finally coming home!
Once home, we had a new scare that led us to the hospital after she had only been home a few days. She was vomiting so hard that milk would come out of her nose and mouth, and she would poop. We later found out it was because she was still learning how to poop! She was pushing so hard that it was making her vomit. We dealt with that every other day until she was about three months.
At six months, while doing all the follow-up visits required of children who were in the NICU, it was brought to our attention that she had Brachycephaly, an infant skull deformity. She has since gotten a DOC band to correct it. At eight months, at a follow-up with cardiology, they found an aortopulmonary collateral vessel. The doctors are monitoring it but have ultimately said she will probably need surgery to correct it.
She is officially nine months now and follows up with doctors every three months. She is still in the first percentile for weight but she is crawling, rolling over, and standing like a healthy baby. She loves to dance and cuddle and play with her big sister. Kai can say mama and dada and ALWAYS has a smile on her face as she continues to show the world how remarkably strong she is. She is not completely out of the woods yet, but I know she will fight through her latest diagnosis. She’s our Tiny Hero!
