Stephen's Journey: A Super Special Day

Sunday, January 23, 2011

A Super Special Day

Christmas came early today for Stephen's Grandparents as we were allowed a very special visit with all four grandparents today in the NICU. A visit we didn't think would happen until either Stephen came home or until flu season was over. The NICU has a strict visitation policy during flu season that only parents are allowed in the NICU. It's a tough policy for people like us whose babies will be in the NICU for an extended period of time. Up until today, the only glimpse of Stephen the grandparents had gotten was the morning of his surgery when he was wheeled down to the OR (aka the bowels of the hospital) in his transporter. And even then, they really couldn't see him because he was so covered up and attached to so many machines and tubes. And it was so fast.

We never imagined 19 days ago that we would have Stephen here on Earth with us and after his setback on Wednesday night, we figured it wouldn't hurt to ask just once if we could have a visit with the grandparents. So on Friday, we did just that and the amazing NICU staff and our nurses made the visit happen today despite the strict visitation policy. Of course it was a huge help that Stephen is in own private room, and we were able to sort of sneak the grandparents, two at a time, into Stephens room through a "back" door. Not only was the visit great because they were able to see and touch their grandson, but it was also great because they now understand and have seen first hand what it's like for Bill and I on a daily basis. They can now relate a little bit and understand better about what's happening at the hospital when we talk about our day.

We owe everyone at the NICU a huge huge THANK YOU for making today happen. You made four grandparents' wishes come true today!!!

Grandma Tish got Stephen his Giants jersey and Mimi (Grandma Noll) got Stephen his Terribel Towel. Some of Stephen's nurses are Steelers fans, so he's now an honorary Steelers fan! And this week we are going to work on decorating the rest of his room. Momma needs to learn to get crafty!!!

4 comments:

NaomiJanuary 23, 2011 at 5:50 PM
Fab post, do le me know how Stephen is doing in himself x
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CiaraJanuary 23, 2011 at 6:01 PM
Though i cannot support your decisions with respect to your son's NFL team allegiances, what a great post!! I can only imagine how special that moment was for you and Bill, and both sets of parents. It must have been so hard to not be able to proudly show off your amazing creation to your parents for so long. I am so thrilled for everyone!
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AnonymousJanuary 23, 2011 at 8:19 PM
How wonderful that Stephen finally got to meet his grandparents. It must have been a very special moment for all of you. Stephen is looking more handsome and stronger with each update!!! We look forward to the blog and photos--Dad is doing a great job with the camera. Love and prayers to all of you....
Aunt LuAnn and Uncle Dick
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{darlene}January 23, 2011 at 9:34 PM
I am SO happy for all of you. What special special moments that you will all treasure! Keep fighting Stephen. You are an amazing little guy.
We are praying you safe, healthy and home!
love,
Darlene and the boys
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!