Sunday, November 11, 2012

Spotlight on Preemies...Nora and her Mommy

Renee is my guest blogger today, she can be found over at:

Who is "your" preemie? (daughter, niece, grandchild, friend) & Tell me a little bit about him/her...
My daughter Nora was born at 25weeks due to a bicornuate uterus that caused me to go into preterm labor. In her 97day NICU stay we experienced a lot of the normal preemie related issues, she had a lot of blood transfusions, chronic lung disease, a PDA (heart murmur), weight gain issues, and we also had two major infections that could have taken her life (strep epi and group b strep), also a bi lateral grade 3 & 4 IVH (brain bleed). Nora is now 9 months old, 5.5months adjusted and doing well. She still has her PDA, but she is off oxygen and happy as can be. We are still struggling a lot with weight gain. She is a tiny little thing, but she is a determined little fighter and our miracle!
How would you say YOUR experience has affected you?
It has affected me tremendously. I always say I walked into that hospital on Feb 1st one person, and walked back out on May 10th a completely different person. The days and hours leading up to her birth were the most terrifying times of my life. When a baby is born at 25 weeks they are only given a 50% chance of survival, so we had absolutely no idea what to expect and there was nothing we could do except to hope and pray a lot! It has definitely made my faith stronger, my marriage stronger and made me a much better Mom than I ever would have been. It has made me a stronger person over all, and a more compassionate and grateful person.
How were you able to handle the NICU experience?
I have absolutely no idea. My only answer to that is God, the power of prayer and my husband. Nora has been home for 6 months now, and I look back and have absolutely no idea how I left that hospital every night. I can't stand to even leave to go to the grocery and come back, so I honestly have no idea how I left my sweet baby girl for 97 days. I do know that you find strength you never thought you had in situations like this. There were some really rough days in the NICU, days when we had no idea if Nora would survive, and the only way you can get through those days are prayer.
Before this experience what did you know about preemies?
Very little. I had absolutely no idea what it meant to have a 25weeker. I had no idea what it meant as far as a NICU stay and no idea what it meant for years after she left the NICU.
What have you learned from all of this?
I learned how small a 1lb 14oz baby really is. There is much more to a NICU stay than just feeding and growing. Also There is so much more to prematurity than a lengthy NICU stay. Prematurity can affect a baby until they are 3 or 4, or in some cases a lifetime.
What advice would you give another person in your situation?
Find a good support system. Your family and friends will say they understand, and most of the time they will try... but they really can't understand it until they have lived it themselves. Find a few people, or at least someone else who has been through it, or going through it to lean on. Someone who will understand all your frustrations, heartache and will celebrate the teeny tiny milestones with you as if your child has conquered the world! Also take it one day at a time, always remember how far your child has come, and remember all the issues of prematurity do not stop when you leave the NICU. Do not be afraid to ask questions, trust your gut instinct, and always remember you have to be an advocate for your child.
Anything else you want to share?
I think one of the biggest misconceptions of prematurity is that once the baby is cleared to leave the NICU, everyone thinks that everything is ok and the baby is healthy and just like a newborn baby. This could not be farther from the truth. Nora has at least 2 appointments per week and sometimes up to 5 in one week, they can be anything from cardiologist, ophthalmologist, NICU follow up, Pediatrician, PT, OT, EI, and Nephrologist and these are just the appointments we go to on a regular basis. Nora is 9 months old and we currently deal with a PDA, high blood pressure, very low weight, ROP and she is on 3 different medications. She cannot roll over, sit up, eat cereal, or crawl yet. Currently we are working on lifting her head up off the ground for tummy time. Prematurity is a very very long road, but we are so thankful she is here...and getting stronger and stronger everyday! Nora is so perfect to me, and I couldn't possibly love her anymore than I do right now!

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