Written by Watson's Mom
At 12 weeks gestational, the doctor asked if I wanted to do an NIPT blood test (which people often do to get gender results early).
Being in my early 20s, it never occurred to me that something might come back abnormal. I remember the nurse calling to ask to go over the results in the clinic. My mind went crazy. I started using Doctor Google to figure out what could be wrong.
At the clinic, the doctor told me that the baby had a chance of having Down Syndrome. Then at 28 weeks gestational, we discovered Watson had fluid around his heart.
Watson was born at 37 weeks with NICU on standby while I delivered him. He was 7 pounds 7 ounces. He was so cute! None of the doctors had any concerns.
We were able to bring him home after two days in the hospital. We were later remitted into the hospital after a routine checkup due to his bilirubin levels.
Watson was a very sleepy baby. They say to sleep when the baby sleeps but when I had to wake him up to feed him, it was hard to sleep. I expressed my concern to the pediatrician, and I kept advocating for my child. We finally saw a cardiologist when Watson was only 20 days old.
While driving to the appointment, I could hear Watson’s breathing change. When we got to the cardiologist, I told them the issues and they immediately hooked him up to monitors.
They found a hole in his heart, so the cardiologist told me to take him to the ER.
I sat in the ER with my child, not knowing his vitals. I waited hours before a doctor finally came in and admitted us into the pediatric unit. No one told us very much, but I was paying attention to his test results coming back on MyChart. Finally, the nurse told us his heart enzymes were too elevated that we would have to be transferred to the Children’s Hospital via carelift.
When we got to Children’s Hospital, the doctors were certain we would only have to stay until we could get Watson on diuretics for his heart. They placed him on high-flow oxygen and eventually got him in an oxygen cannula where he only required a little amount of oxygen.
In the hospital, I still worried he slept way too much. I would be lucky if I could see his eyes open for two hours or more a day. Watson’s not my first child — I have two others at home, so I knew this wasn’t normal.
When they put him on room air, it got harder to wake him up. He wouldn’t finish his bottle, so I asked the doctor to come back. He told me he would put him back on oxygen to help me feel better and to show me that he didn’t need it.
As soon as the oxygen went back on, Watson woke up and stayed awake a little bit that night. Cardiology wanted to send us home with high flow oxygen. I fought to stay in the hospital. We spoke to so many different doctors throughout our stay and none of them stayed on the same page. I finally asked for our cardiology and NICU doctors to sit down and have a care conference to figure out a plan for Watson. They knew I didn’t want to take him home until I knew it was safe for him. We finally agreed we would stay in the hospital until Watson was at the weight limit for cardiac surgery.
We finally set a surgery date for October 11. After 48 days in NICU, we transferred to the cardiac ICU and Watson had heart surgery to close his VSD and PFO. Watson did great during surgery. Six hours after surgery Watson started having trouble breathing on the ventilator. They couldn’t figure out what was going on. They had to go back on his settings and told me that they would try to give him a break and let him rest three days later they would extubate him and had to re-intubate him because he wasn’t able to handle it.
There were multiple times that we had planned to extubate again, but something would happen. He would start running fever and get sick. After asking multiple times to try to get pulmonary on his team because his lungs were filled with so much fluid.
After 20 days, he self-extubated and was able to go on the BiPAP machine and he handled it well.
In November we finally moved out of ICU, but Watson still could not go off oxygen. They just wanted to send us home without knowing why. I advocated for my child, and I requested to transfer to the pulmonary floor if cardiology couldn’t help us any further.
In December we transferred to the pulmonary floor. While there Watson finally got a sleep study! Doctors diagnosed him with and treated him for severe sleep apnea and by the end of our stay, he only required oxygen at night. Finally on December 21 we were able to take Watson home and have Christmas as a family. Watson came home with an NG tube because he would not take a bottle.
We had some trouble finding the right DME for our family. After lots of back and forth, we ended up with Wave (after initially leaving to try another company).
We went back to Wave Healthcare because the person I worked with was so caring. She always made sure everything was right. She took time to understand and help advocate for my child.
Watson has come a long way since 2023. He has had airway surgery to fix his laryngomalacia, eye surgery for his tear ducts, and has worked on physical therapy, occupational therapy, and feeding therapy (which he graduated from in February 2024). Let me tell you this boy loves his food!
He is now walking and will start school in August!