Cooper’s CDH Story
We received Cooper’s diagnosis at my 20-week anatomy scan. What we thought would be a routine appointment and a chance to see our little guy on an ultrasound turned into the ultrasound tech stepping out to ask for help. I knew in that moment something was wrong. The doctor came in and gave me the news, “Your baby has a serious congenital disability,” and continued to explain that he had a hole in his chest, his stomach was up in his chest, and his heart was pushed to the right. He did not, however, say, “your baby has Congenital Diaphragmatic Hernia (CDH),” which left me googling away until my follow-up appointment the next week. I was so scared and worried sick. I just wanted my baby to be okay.
We were referred to Lucille Packard Children’s Hospital (Stanford), where we made many trips (a three-hour drive for us) to receive prenatal care and come home with a birth plan. At 36 weeks, I left my husband and 2 year old to relocate to Stanford to finish out the rest of my pregnancy and be close to the hospital in case the baby came early. Relocating was the hardest part of this journey. But we endured to receive the best medical care for our baby. On May 17, our baby boy, Cooper James Coronado, came into the world, met with a room full of the highest level NICU team that took him away as soon as he was born. We were prepared beforehand that they would be intubating him right away, as they did not know how he would do breathing on his own. We were lucky enough to have his surgery scheduled for May 19, where the surgeon was able to laparoscopically fix his hernia and put his organs back in his stomach. Soon after his successful surgery, Cooper was extubated just a few days after his surgery and placed on CPAP. This transition was hard for him, but we were able to get him comfortable and focus on rest and recovery. Just 2 weeks after his surgery Cooper was taken off CPAP and was tolerating room air.
During this time, we had started working on feeds through an NG tube. We thought he would be coming home any day. Then Cooper started vomiting and had respiratory distress. The rollercoaster started again, not knowing why he was vomiting. This caused Cooper to need respiratory support, so the doctors put him on a high-flow nasal cannula. We reduced feeds and tried to take it slow, but Cooper continued to vomit. The doctors tried various ways to help Cooper, but ultimately decided an exploratory surgery was needed to see what was causing the vomiting and discomfort. He underwent his second surgery on his one-month birthday, June 17. This was our biggest hurdle yet. The recovery was intense, and he was in so much pain. The surgeon found that one suture had popped from his original repair and suspected that it was tugging on his intestines each time he was fed. She repaired the defect. After the surgery and recovery, we were able to start trialing feeds through the NG tube in slow, small amounts.
Thankfully, Cooper was able to tolerate the feeds and the volume of milk was increased slowly every 12 hours. We encountered some hiccups along the way, and the doctors would pause the increase in volume to allow Cooper’s body time to adjust to the amount of milk in his stomach. Slow and steady was his pace. Respiratory-wise, he was on a high-flow nasal cannula before and after his second surgery. The team felt as though he was breathing well and trialed room-air; however, this was too much on his body, and he needed to go back on the high flow. The goal was to get Cooper to full feeds. Slowly but surely, he was taking feeds at his goal volume and overall doing so well. I started advocating for Cooper to get transferred to our local Children’s hospital, Valley Children’s, to continue working on feeds and receive respiratory support. This process was so stressful, with lots of back and forth between hospitals and insurance. We just wanted some sense of normalcy back. I had been gone, living in Palo Alto, since the end of April. My husband and daughter were back home and visited on the weekends. The travel back and forth was so hard on them and I missed my family so much. We felt that Cooper was at a point where he could be managed by Valley Children’s until he was ready to come home. After much back and forth, we were able to agree with the transport company and pay the difference out of pocket that insurance did not cover.
Finally, I was back home with my family and Cooper was only 20 minuets from us. He truly thrived at Valley Children’s; his first night there, they said he finished a 15ml bottle, something that Stanford never even offered him. Cooper continued making amazing progress, and we thought we were going to get to take him home. We started taking all of the classes and preparing for discharge when Cooper’s breathing started changing, and the doctor suspected pneumonia caused by aspiration. They had to stop feeds and do a swallow study, along with starting a round of antibiotics for the pneumonia. We felt so defeated at this point and wanted so badly for Cooper to get a break. He was tired. Thankfully, the swallow study came back negative, and Cooper was able to continue bottle feeding. The IVs that they kept placing for his antibiotics kept getting pulled out or going bad. Poor baby couldn’t catch a break. By day 5 of antibiotics, his symptoms had resolved, and the doctor said that we could discontinue the antibiotics and did not have to try to replace the IV. We continued to work on Cooper, taking full feeds by the bottle, and eventually, he was able to!
On Monday, July 21, I parked myself in Cooper’s room and waited for the doctor to round. I was determined to take him home that day. At that point, the hospital wasn’t doing anything for Cooper that we couldn’t do for him at home. The doctor agreed that Cooper was ready to go home! We were over the moon and so nervous at the same time. We brought our baby boy home after 65 days in the NICU, 2 surgeries, countless procedures and tests, and many more obstacles that Cooper took like a champ. The strongest boy I know. We are enjoying our time with him at home with us, and each day, he is a reminder to never take anything for granted.
