Hello, my name is Bethany. My son Connor Michael was born on 1/14/23 at 12:01 am weighing 6lb 11oz by emergency c-section because I had severe preeclampsia. He had a complete unilateral cleft lip and palate, which we were aware of before birth. He is my miracle baby! I have been told my entire life I could never have children, and SURPRISE, here comes my son!!!!!
When he arrived, unfortunately, I did not get to meet him until later that day due to being in recovery from my surgery and him being taken straight to the NICU. My husband, on the other hand, did get to and was in amazement of our amazing son. When I finally got out of recovery, the nurses took me to meet my son for the first time, and I got 15 minutes…that’s all. I was so disappointed and angry. The next day a nurse practitioner and a pediatric doctor woke me up to tell me my son had stopped breathing periodically multiple times throughout the night and they had to insert a breathing tube. They did an EKG with no findings. They didn’t know what was causing his breathing apnea. They monitored it for a few days, and on 1/16/23, they decided to finally take his tube out because he had been doing great! It was successful! He was breathing completely on his own, and I got to hold him!!!! Now our only concern was getting him to eat, or so we thought…
On 1/26/23 at 1:30 am, I received a phone call telling me my baby had once again stopped breathing multiple times, and this time he also had a seizure. They put in a trachea breathing tube. They also did an MRI & another EKG to hopefully find out what was going on. The MRI and EEG came back with no findings, so we moved on to the next set of tests. They tried lumbar puncture to see if maybe he had an infection in his brain that was causing his seizures. Results took a couple of days to come back, so we just kept our fingers crossed and prayed for the best. They had him on an IV seizure medication that controlled his seizures. They also gave him antibiotics to fight any infection that he may have had.
Connor was doing a lot better. The seizures were under control with medication even though we still did not know what was causing them. Controlling the seizures meant his breathing was under control, so the tube was removed. Little man had a sore throat and some sores in his mouth from being intubated. He still had an NG tube for feeding. They added a thickener to help with aspiration and swallowing issues. But all in all, he was doing a lot better. We needed to focus on feeding and getting more volume with each feed.
Fast forward to February 9, 2023… his seizures were under control with medication which in turn made his breathing better. He was able to breathe fully on his own without any assistance! But he was having major issues with feeding. We had to make multiple changes multiple times. It was a roller coaster. He took 10 full bottles and has not had to use his NG at all!!!!! There were a few last-minute tests to be run, but things were looking up in Connor’s little world!!! We still had a lot of challenges ahead, but getting home healthy and thriving was step one!
We finally got to go home on February 11th after 29 days in the NICU. We were so excited to start our lives outside the small walls of our NICU room. Connor was doing so much better. We still have a long road ahead of us. The ACPA Approved Cleft and Craniofacial Team at Children’s Mercy Hospital in Kansas City, Missouri, have been absolutely amazing. Dr. Jiang (plastic surgeon) has done some miracle work with his surgeries, and Dr. Hendricks (orthodontist) is wonderful with Connor. He had his first big lip adhesion surgery in May and will have another surgery in July. We are still working to try to narrow down what is causing his seizures, and we are working on ways to improve his breathing issues as well.
All in all, my miracle baby is just that: a MIRACLE!!!