In our January edition of our Preemie Family newsletter we learned about the lovely and resilient Adelynn Evans, a preemie born at 24 weeks and 1 day, weighing 1 lb. 2 oz. and who spent 5 months in the NICU.
Read more in an update by her Mom, Bethany . . .
by Bethany Hubbard, Adelynn’s Mom:
My daughter was born in 2011 at 1 lb, 2 ounces. She had a blockage in her intestine that was discovered through a routine x-ray and she had surgery at two days old. My girl was a wiggler from the beginning and a week later, her ostomy had to be repaired. For four months, I waited and prayed for her to hit that magic weight where they would reconnect her intestine. While we waited, Adelynn suffered from all of the typical micropreemie problems such as PDA ligation, TPN intolerance, jaundice, cholestasis, ROP, and failed extubations. Her biggest challenge was gaining weight. Due to the location of her ostomy, most of her food did not travel far into her small intestine making weight gain a very slow process. Finally we hit that magic number on her due date in July and she had her final surgery the following week. Over the next month, Adelynn weaned her oxygen use and began full bottle feeds. I always thought it was quite fitting that Adelynn came home on Labor Day weekend in 2011.
Everyone says the NICU is like a rollercoaster. What people don’t tell you is that leaving the NICU is only the beginning of the ride. Once Adelynn was discharged from the NICU, our entire lives changed. She came home on 1/8 liter of oxygen and an apnea monitor. My entire family became germophobes because we had been warned for five months that Adelynn’s health would be delicate. I carried Lysol wipes and hand sanitizer everywhere I went, even when she wasn’t with me. We kept her pretty much quarantined to the house during her first winter. Knock on wood, my daughter has a fantastic immune system and hasn’t had more than a couple colds.
As for milestones, Adelynn has hit some on time and some we’re still waiting to hit. She started crawling at a little over one year adjusted and walking at 16 months adjusted. When she began walking, I noticed her balance was terrible. Her therapists thought it was because she had such low trunk strength from her multiple abdominal surgeries. It made sense, so I didn’t start to worry until I noticed that it wasn’t continuous. Some days she walked almost like any other two year old. Some days she wobbled like a drunken sailor. There was no rhyme or reason why some days were better than others. Adelynn can’t run or jump. She also doesn’t see descending stairs. It would be like walking off a cliff for her. She had an MRI done in September and I was prepared for the cerebral palsy diagnosis. Imagine my surprise when the neurologist said it was not cerebral palsy but cerebellar hypoplasia. We’re now playing the waiting game to see how it affects her in the long term.
Speech is an ongoing battle. Right now, she has about two words: ball and baby. She uses them for everything. She babbles a lot and just started making the “m” sound. I will cry the day she says ‘mama’ for the first time.
Adelynn is currently two and half years old! She turns 3 at the end of March and I don’t know where the time has gone. Time moves so slow while in the NICU but my baby is no longer a baby. She’s over 3 feet tall and weighs a whopping 35 pounds! Not bad for a 24 week preemie.
Being a preemie mom has definitely changed my outlook on life. I don’t sweat the small stuff and just go with the flow. Adelynn was my first child and I feel like that has kept me from comparing her to other children her age. She will talk when she’s ready. She will run when she’s ready. I don’t realize she’s delayed until someone points it out to me. To me, my daughter is a happy, healthy, normal little girl and that’s all any parent can hope for.