Blakelee’s Story - Congenital Diaphragmatic Hernia (CDH)

I found out I was pregnant with twins in June of 2020. At my 16-week ultrasound, they told us the genders of these sweet babies and more. The ultrasound tech gave us the envelope with the genders and told us to hang tight that a doctor would be in to talk to us. At that moment, I knew something was not right, but I had seen the heartbeat, so what could it be? The doctor came in and informed us that Baby B (girl) had a hole in her diaphragm and her stomach was already in her chest. They informed us that she would need surgery at some point after birth and she would be on a breathing machine. I would now need to see a high-risk OB at least once a week and have a lot of tests throughout this pregnancy. She told me to stay off Google until we knew more. The first thing I did when I got home… I got on Google.

At my 24 week ultrasound, the ultrasound tech once again left the room to get the doctor. I was there by myself (thanks to COVID), scared because I knew what had happened the last time they went to get a doctor. The doctor informed me that the nuchal fold on the back of her neck was enlarged and that typically meant there was a chromosomal defect so they recommended further genetic testing. They told us with CDH babies, they typically see Trisomy 13, Trisomy 18, and Trisomy 21. Trisomy 21 was the only living chance she had. If it was Trisomy 13 or Trisomy 18, they would not intubate. Fast forward to all the testing, they found absolutely NO chromosomal defect, and the next ultrasound showed no inflammation of the nuchal fold. God is great!

We then decided to reach out to Dr. Kay's at John Hopkins All Children's in St. Petersburg. We wanted to hear what he had to say. We spoke on the phone for about 2 hours that evening with Dr. Kay's and he told us he wanted to save Blakelee. He didn't guarantee us 100% that he could but that 95% chance he gave us felt like 100%. After speaking with him, we knew this was where Blakelee needed to be.

On December 6, we left for Florida with our 1-year-old and relocated. Many doctors appointments, tests, and meeting new people, but deep down, as hard as the relocation was, we knew this was where we were supposed to be.

On December 30, I went into labor, and they could not stop it at 33 weeks and 4 days. So we had an emergency C-section with a room full of MANY doctors. They had a team ready for Brooks (Baby A) and a team ready for Blakelee (Baby B). Blakelee ended up weighing 5 pounds & 6 ounces which is a pretty good weight for a preemie. I didn't get to see her until 8 hours after my C-section. I wanted to hold her so bad, I wanted to touch her, but I sat beside her bed, prayed, and told her she was the toughest little girl there ever was and one day she would get to meet her older brother and her twin brother.

One week after birth, January 6, she underwent a left-sided hernia repair. Looking at the MRIs, they were planning on patching the diaphragm. They ended up stitching it together. Luckily, the hole was not as big as they thought it appeared which was great news. The surgery took 3 hours on the dot. The surgeon said he was pleased with Blakelee's surgery and she should recover pretty quickly. She got extubated 5 days after surgery on January 11. She breathed for the first time on her own at 12 days old and I got to hold her for the first time that day. She drank milk for the first time at 14 days old. She did phenomenally and went to wall oxygen on January 14. We were planning on discharge being January 24.

On January 21, Blakelee was not acting normal. She was having trouble breathing and running a fever. They placed her back on the CPAP machine and started running many tests. On January 22, they bagged her 4 times and Dr. Kays emergency ventilated her. Her blood work came back and she had sepsis. We had rocky days, days where we didn't really know if she was giving up her fight or if she was going to continue. I remember them telling me her pH levels were very low and that showed them how well her body was handling the infection. They told me her body was tired and could not keep up. I remember crying and being so angry at the world. I got to hold her and feed her just a couple of times and it wasn't enough time with her. I wanted her to just get over it and I wanted to touch her again, to feed her again. I sat beside her bed that evening and talked to her just like she could understand me. I continued to tell her everything I imagined she would be. She was by far the toughest human I have met. She was beautiful and I told her if I could switch places, I would do it in a heartbeat.

Fast forward to January 27, they extubated her and placed her on the CPAP. We worked on feedings, weaning off medications, and soon moved to wall oxygen.

On February 13, we got discharged on wall oxygen and she got to meet her brothers for the very first time. 45 days in the NICU. The longest and hardest 45 days ever. I always caught myself daydreaming about the day we would get to take her home, the day her big brother would get to meet her, the day she would reunite with her twin brother, the day our family would get to see her in person. All I ever imagined was excitement. That day was filled with a lot of emotions, worries, questions, and what-ifs. I didn't have a nurse next door to go get if something happened. I didn't have machines to keep staring at and reassuring myself that she was okay. One week later, we went to her checkup and they approved us to go back home to KY.

Blakelee is now a year old, standing by herself and eating table foods. She is no longer on medications or oxygen. Finally, no tubes on our precious girl. She is the happiest baby you would ever meet, her big brother and twin brother are her very best friends. Anyone who meets her would not know that anything was ever wrong with her. This journey has been far from easy, but it has been rewarding. I have met amazing people throughout and I am so thankful that Blakelee was able to get the best possible care. I can't thank Dr. Kays and his team enough for the care that Blakelee received and for saving my baby. There is hope!