Our journey began when I was 27 ½ weeks pregnant and went to the hospital with complications. The doctor gave me steroid shots to “quick develop” the baby’s lungs and I was sent home after a few days on best rest, medicines and with monitoring. Two nights later I had severe abdominal pain and we went back to the hospital. After several doctors and tests, the high-risk obstetrician came into my room and told me, “We know what’s wrong and we know what to do and we have to do an emergency c-section now”. I had a condition called HELLP syndrome (which is a life-threatening complication considered a variant of pre-eclampsia) and the only treatment was to deliver the baby.
Rex Bauer Martin was born at 28 weeks and was 1 lb. 7 ounces. As soon as he came out Rex peed and the doctor gave my husband John a “thumbs up”. They rushed Rex up to the NICU and I could not see him for 2 days. John brought me a picture and gave me one of his tiny preemie diapers which I kept with me until he came home (and still have).
On day 3 Rex was transferred to CHOC at Orange for a PDA ligation where they performed a heart operation to close the duct that connects the aorta and the pulmonary artery. Up to that point, the medicines they had been giving him had not stabilized his blood pressure and oxygenation levels, and we were told that that this was his best chance of survival.
Two days later Rex returned to CHOC at Mission for the remainder of his NICU stay, and just like the doctors had said, it was “one step forward, one step back” as he struggled to breathe on his own. Rex had issues gaining weight and digestion; he required transfusions and medicines to keep his blood pressure stable and underwent tests, scans and procedures during his entire NICU stay. After 76 days in the NICU we brought Rex home with a monitor after he had reached a whopping 4 pounds.
It was by no means our last hospital visit as he had double hernia surgery in October and was hospitalized with suspected RSV in January. With so many specialists and therapy appointments my husband and I felt like we had earned an honorary degree in medicine specific to premature babies. Rex continued to need specialized medicine and care for a few years, and today at 9 is still receiving growth hormone therapy to try to “catch up” size-wise to kids his age.
Our experience with a premature birth and a preemie baby has been tough and something we would not wish on anyone. We know what a miracle it is to have a healthy, happy, active and funny 9-year old boy. Our experience has also brought us into contact with other parents of preemies who we have had the privilege to share our experience with and offered advice and support. When Rex was born one of my girlfriends sent me some micro-preemie outfits, a preemie “purple heart”, a book about preemies and a journal. The story of the preemie purple heart begins, “One day a child was born, too early, too small but loved as much as any child could be. As the parents of this child entered this journey they found themselves feeling alone. They had the joys of being new parents but the fear of losing their child, the thrill of giving birth, the grief of a lost dream. This was supposed to be a joyous time, not a time filled with grief, anger and pain.”
We were lucky. At the time of Rex’s birth I had insurance through my job and it was phenomenal. We paid some out of pocket expenses/co-pays but everything else was covered. I am not with another company and even today his daily growth hormone and specialists visits are covered. I am grateful for insurance, but I would be mortified and offended if anyone questioned the value of this spending. I did nothing wrong and the premature birth was not caused by my actions or inactions.
I have now taken this experience and become an advocate and supported the work of the March of Dimes who is working daily to reduce the number of premature births and work on research to prevent premature births.