Our names are Kaylee Aisling and Malcolm Samuel Moffitt. We were born on June 7th at 5:40 and 5:42 in the morning. We weighed 3lbs 9oz and 6lbs 15oz respectively. Everything about our gestation was normal until the very end. It was then that one of us was diagnosed with UGR uterine growth restriction. (Kaylee) Two weeks later at a follow up appointment, our midwife made the sad decision that she could not safely deliver the both of us like she and mommy had planned. We went to the Med for a confirmation ultrasound and Dr. B decided then and there that we should be born the next day, because waiting another two weeks wouldn’t help anyone and could further complicate my (Kaylee’s) already complicated situation.
A few hours and a lot of tears later we were born via cesarean section and taken to the NICU. We were taken to the NICU because I (Kaylee) was so small and had a bilateral cleft palate and some other less obvious developmental abnormalities. And I (Malcolm) had a single cleft palate and wasn’t breathing well enough on my own. I had to be intubated immediately and rushed away in an incubator for urgent care.
A few more hours later, we were stable and so was mommy, but the road ahead was long. Over the next week, we would both undergo repeated blood work, nasogastro feeding tubes, and nasal cannulae to help us breathe. We would both be placed in heated isolettes and cared for by some very nice and extremely caring nurses while mommy recovered from her surgery.
Soon mommy and daddy went home, but we couldn’t. We had to stay and get bigger and more stable before we could. And soon I (Malcolm) did, I gained weight back up to my birth weight and I learned to take my feedings through a bottle. I have to have a special nipple to feed correctly at this point, but progress is progress. I (Kaylee) was not so quick to grow. I began losing oxygen at varied intervals due to my cleft palate allowing mucus to drop into my tiny wind pipe. I do not have a roof in my mouth, so my tongue doesn’t have anything to work against in order to swallow these secretions and they build up, needing to be vacuumed out periodically. At this point I have been ultrasounded and xrayed several times and blood has been drawn for genetic testing. My test results reveal that I only have one kidney and that my heart has three holes in it. One of which is normal in newborns, but my atrial sinus defect and ventricular sinus defect are not normal and will likely require surgery. I (Malcolm) only have two holes in my heart at birth, the normal one and a small atrial sinus defect. Mine are closing up on their own.
One month after we are born Malcolm gets to go home. He begins life at home by fussing for attention, daddy immediately puts him in the bed between himself and mommy, the fussing stops. Now Malcolm spends more time sitting in somebody’s arms than he does in his swing chair or bassonet. I (Kaylee) have been moved to Le Bonheur for further treatment. I am having a feeding tube put into my tummy so I don’t have to have one running down my throat. This is called a “G” tube, specifically a low profile Mic-Key button. This means it is very close to my skin so it should hang up on things less. The nurses here are very nice and I have my own room now, so mommy and daddy can stay the night when they aren’t too busy holding Malcolm.
Soon I will be going home, but that is still only the beginning of my journey. I have a heart surgery ahead of me and several reconstructive surgeries after that to repair my cleft. I (Malcolm) will also have at least one surgery ahead of me to repair my cleft. That's why we need help. We have a long road ahead and a great deal of growing and healing to do. Every little bit helps, so please give. Thank you and blessed be.