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Challenge: NICU Parenting

The Long Journey

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Our long preemie journey started 18 years ago. And what a journey it’s been!! Right before the holidays I started getting horrible pain and found out that I had HELLP syndrome and had to have an emergency csection in order to save my life. I was life flighted to Hershey to deliver my baby. My daughter was born at 27-1/2 weeks weighing only 1 lb 11 ozs. While I had to recover I couldn’t go to the NICU and see my baby for a few days. Finally, when I was allowed to go see her I wasn’t allowed to hold her. That didn’t come for a few more weeks. Doctors prepared us for the worst. At that time we didn’t know anyone who had a preemie and didn’t know of many stories like you do now. We were devastated. Nothing had prepared us for this journey. Leaving the hospital without our daughter was one of the hardest things I’ve ever had to do. I cried the whole drive home. Living 2 hours away was hard. My husband could only visit on weekends and I would make the drive every day to visit plus it was winter. There were days the weather was bad and I couldn’t go. We would talk with the nurses every night for our report. Had many ups and downs and even had an emergency call to get to the hospital because she ended up having Necrotizing enterocolitis. Finally after 81 days we were able to take our baby home. But the journey continued! For the first couple of years we had so many appointments they were hard to keep straight. She had weekly appointments with her local pediatrician, appointments at Hershey with the pediatrician to see her progress. Ophthalmologist appointments in Hershey for her ROP. Also, Speech and OT appointments at the house. They had warned us that preemies are delayed. She was very delayed and took years for her to reach all her milestones and to be at the correct age for where she would be. And The journey continues! They warned us school would be our next hurtle. They suggested to start the education process as soon as we could with her so she could get a head start since she was so delayed. Starting early was one of the best things we could do. But wow, did she struggle. We worked very, very hard with her and luckily we had a great school system. They worked with her even having her attend summer school for reading and math to keep her with her age group. Finally all the hard work payed off! In middle school she started to thrive. She even started making the honor roll in 9th grade. This past June she graduated high school and is now attending Penn State University. The long preemie journey has finally ended. (Hopefully!!). It’s been a long journey and wouldn’t trade it for anything! Now when I hear of someone that has a preemie I try to tell them about our journey to prepare them but also let them know they aren’t alone. I also tell them to look at my daughter and show them the long journey is so worth it!!

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