Today is World Prematurity Day. I keep seeing picture after picture of so many amazing kids who beat the odds. It is pretty cool to see 🙂 Mattie was 9 weeks early, born at 31 weeks. With only a 23 days stay in the NICU, we were hopeful.
Here is a pic of Jim holding Mattie’s hand when she was 4 days old.
In honor of World Prematurity Day, March of Dimes is offering two kangaroo plush beanies for just $20, including shipping. From their website: “We’ll send you one to keep and we’ll send the second to a family in a newborn intensive care unit (NICU). By sending a beanie, you help spread the word about the important health benefits of kangaroo care. You also bring a little bit of comfort to a family during a difficult time.”
As I look back and remember those difficult days, I remember when those little acts of kindness made the world to me. If you would like to read about the day Mattie was born CLICK HERE. The 9 weeks that followed with her in the NICU, coming home, and then back to the hospital with pneumonia follows.
Tonight my thoughts and prayers are for all the babies, moms, and dads who are currently going through this. Sending love your way. XOXOXO
Exactly 2 years ago to the day, Jim and I were told I would have to live in a hospital until Mattie was born. Just typing this out makes my heart hurt a little. We were devastated. We kept looking at each other wondering how this happened to us, what would happen to Mattie, how were we going to get through this? I have re-read my carepage blog a few times since then. Even now, 2 years later, I have no idea how we did it. I chalk it up to courage, faith, and an amazing support system of family and friends, but it was not easy. I do not wish that experience on anyone.
For those of you that started to follow our story after Mattie was born, it was a rocky road to start with. My water broke at 17 weeks pregnant. We were told several times that we need to have a late term abortion. Obviously that was never going to happen, so I went on bed rest until Mattie was born. Initially we thought Mattie was going to come at any minute, but she surprised us all. Once I was 23 weeks pregnant (6 weeks after my water broke), the doctors finally put me in the hospital since Mattie would be old enough to save (viable). I lived in the hospital for 55 days. Each day never knowing if that was going to be the day Mattie would be born. She had a 12% chance of survival. Mattie was born 92 days after my water broke. It was a miracle! She came 9 weeks early and was 3 pounds 14 ounces.
5 Days Old
17 Days Old
Two years later, do I regret our decision? Will Mattie regret our decision? The latter haunts me daily. Tonight I held Mattie and we watched Baby Signing Time. She was signing along with the movie and occasionally would look up at me and give one of her million dollar smiles and I know I have no regrets. The past 2 years have been a journey we never expected to be on, but we are here and doing it, mostly with a smile on our face. Mattie has taught me more about life in her short time than I ever thought was possible. Miracles do happen. Maybe Mattie is not perfect, but who is? She is our miracle. Everyday holds the possibility of one 😉
With hope and love,
Having a child with PVL is a waiting game we were told. No one knows the effect the cysts in her brain will have on her development, motor skills or cognitive skills. I remember in the beginning charting milestones… or should I say not charting milestones. Milestones were so important to me. I would spend time every week going over what she was doing and what she was not doing, I was driving my self crazy and it really was not helping. Now, a year later, I pretty much stopped charting since there was really not much to mark down. “Pretty much” meaning that I look at it every 3 months 😉 Mattie is at a 6 month old level in most skills except gross motor where she is more like a 4 month old. Since Mattie was born 9 weeks premature, she is still very small for her age. Mattie weighs 16 pounds and just recently made it on the growth chart for weight (7% Woohoo). Even though Mattie was diagnosed with cerebral palsy in December, we are still playing the waiting game. We are not really sure what Mattie’s full potential will be.