Faith’s CDH Story

I'll never forget the day I found out I was pregnant with Faith. I was in a gown, IV in, and ready to be wheeled back for surgery due to prolapse. The nurse wanted to do a urine pregnancy test before I went back "just in case"...even though I told her several times that there was no way that I could be pregnant. I was 40! I was done.

The test was positive. I was angry. I was angry with Brett and angry with God.

Slowly...very slowly...the idea of another baby grew on me. I began counting down the days until we would find out the gender. We decided that since I was "geriatric," we would find out the gender early while doing the blood work to test for any abnormalities in chromosomes.  I always enjoy finding out the gender, beginning to shop, and picking out names. I became quite excited when we found out that it was a girl. We decided on her name very shortly after. Faith. Little did we know how much that name would mean.

When we went to our 20-week ultrasound, it was so exciting to see a baby and hear the heartbeat. I could tell something was wrong as the ultrasound tech took way longer than normal to look at various things. After the ultrasound, our OB let us know that the tech was not able to see the baby's stomach. She had a suspicion that it was Congenital Diaphragmatic Hernia (CDH). However, referred us to Sioux Falls to have further tests done. While we were waiting for our appointments in Sioux Falls, I looked up information about CDH. The statistics were scary. The information was sad. I didn't know if we were going to get to take our girl home one day. Sioux Falls confirmed our OB's suspicions. I tried to hope for the best while preparing for the worst. Sioux Falls referred us to Children's Hospital Colorado. More tests. Ultrasounds. MRI (which was the most HORRIBLE experience).

They sat down with us and let us know what they saw. Many of Faith's organs were in her chest. Her lung volume was low. I would have to have more tests as the time got closer, so that they could make a plan. The team was amazing. They showed us what they saw and explained everything in great detail. They knew what they were doing. They had done it before. They spoke hope. More tests. Another ultrasound. Another MRI (if I never have to do one again, I'll be happy!) The plan was for me to relocate to Colorado before my due date. This was supposed to be the end of January, so we planned on going after Christmas break. I continued to see my OB here weekly. She became quite concerned about the extra fluid, and if the extra fluid continued to build, I would deliver early. She made it clear that if I were to deliver in Rapid, the baby would not survive.

She told me to go early. Our family drove to Colorado the day after school let out for Christmas break. We thought that I would come back home with them and then go back in January, as was the original plan. I thought that they would drain the extra fluid and that I would be okay. They drained the fluid but told me to stay. There was still a high probability that Faith would come early. They monitored me frequently and decided, due to fluid and high blood pressure, to schedule a C-section the day after my birthday. Christmas was spent with my family in Colorado. We made the best of it and learned that the most important part of the holiday was being together. I was so thankful to the Ronald McDonald House Charities of Denver, Inc., and Aurora for making it possible for my girls and Brett to visit and stay with me. The stay was free, and many meals were provided for us. We are beyond grateful for this wonderful charity.

January 10, 2024.

I was terrified. The team put me at ease and made the entire process "easy". Dr.McNulty was the wonderful woman who did my C-section.

She was amazing and treated me like a person, not just another patient. I got to see Faith for just a minute before they whisked her away. There were a lot of doctors and nurses in Faith's tiny room. I couldn't even count because there were so many. They were all working to make sure my baby stayed alive. Shortly after Faith was born, she was put on ECMO (heart and lung life support). Her lung volume was low. I was terrified again. The first time that I was wheeled down to see her, she was hooked up to so many machines. I did not get to hold her. She spent 28 days on ECMO. They had 2 failed attempts to get her off. On one of those attempts, she almost died. I saw her every day. I talked to her. I sang to her. I prayed. She was orange. Her hands and feet were purple. Brett went home to spend time with the girls and to work. I was alone a lot. He came to see me as often as he could. He brought the girls when he was able. After 28 days, I got to hold Faith for the first time. It took several nurses to put her in my lap. I had to hold her very still as she was still intubated. Holding her was terrifying, but I knew that she and I needed to bond. She spent 180 days in the NICU. There were many ups and downs, including several fistulas, seizures, and infections. When we thought that she was going uphill and that we would get to come home soon, she took a turn for the worse. This happened often. I had many breakdowns. Andrea Elizabeth Marazzi and Michelle Chadbourne were two NNPs who were my biggest encouragement while I was there. They taught me so much and brought me so much hope. Nurses such as Anna Richards, Chelsea Wieser, and Caroline Robinson became more than nurses. They became friends. Many days into our journey, I met another CDH NICU Mama. Her daughter was born a month and 10 days after Faith. She became a great friend, and we were able to rely on each other for encouragement and understanding. BrookeLynn Grace Roybal was like the NICU's Mr. Rogers. She got to know EVERYONE, and her laugh could be heard all the way down the hall.

After 170 days, Faith came home. We had to learn all of the ins and outs of the G-tube and being on oxygen. She had a feeding and med schedule that was to be followed. The drive home was stressful as we were on our own with her for the first time. Faith is a miracle. She has grown and learned so much! Faith is now 18 months old. She is off daytime oxygen and is working on eating real food (a slow journey, but progress is being made). We have a wonderful friend here who watches her while I work. Samantha Meyer has been the biggest blessing! She adores and spoils my girl, and I never worry about her while I'm at work. God has provided more than we could have imagined. He put people in my path that He knew I needed, provided financial support, people who prayed, and hope on my darkest days. This diagnosis can be SO scary. Thanks to our awesome GOD and the very knowledgeable team at Children's Hospital Colorado, we have a very spicy little girl! :) I wouldn't change a thing!