Stephen's Journey: The Calm...

Tuesday, March 1, 2011

The Calm...

Before The Storm.

The house has been scrubbed from head to toe, the flash cards are written out and taped up around the house, the cycler has been setup, and Mbbel had tubby time tonight. Now with Billy out of town for the night in Orlando on business, the girls (Mabel and I) are snuggled up in bed getting ready to watch a movie. I'm soaking up the last night of total silence and getting ready for another busy/crazy day tomorrow before discharge day. I learn how to work the feeding pump tomorrow, do another trial run with the cycler, we have our last appointment with physical therapy, and I need to wrap up a bunch of loose ends with nursing care, insurance, Medicaid, and hospital billing. I also started to bring home lots of stuff we've been accumulating in Stephen's room in the NICU. I need to do more of that tomorrow and get the frozen supply of breast milk from the NICU deep freezers to Tish's deep freezer at her house (since we don't have one in our house. Breast milk is only good for 3 months in a regular freezer, but will stay good for one year in a deep freezer).

Then it's to the airport to pick up Billy and back to the hospital for our last night time visit. It's almost too good to be true!!

Good night!!!

6 comments:

AnonymousMarch 1, 2011 at 11:24 PM
Dear Lindsey,
We are so excited for all of you!! The nursery looks so warm and cozy--Stephen is sure to love it!! I know everything will fall into place and it will be a smooth transition. We have been thinking about you almost constantly and will continue to do so as the big day nears. What a wonderful Miracle!!!
Sleep tight....
Love,
Aunt LuAnn
P.S. Uncle Dick is working on the plane!!!
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Rossetter TwinsMarch 2, 2011 at 4:58 PM
What a journey! God is good:) Enjoy your little man (finally) in the comforts of your own home. You are an amazing mama!
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ciaraMarch 2, 2011 at 9:17 PM
This time tomorrow your baby boy will be home
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AnonymousMarch 2, 2011 at 9:45 PM
We couldn't be happier to hear the news of Stephen coming home. His journey continues to be miraculous and we love to read the updates. Best wishes for a beautiful and memorable homecoming!!! Love, Colleen & Casey
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DebMarch 3, 2011 at 10:43 PM
Sooooo happy for you guys! Prayers are powerful! I will continue to pray for strength for all of you - and at least a little bit of sleep here and there. Your family is an inspiration to so many... cherish every moment! XOXO
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AnonymousMarch 3, 2011 at 10:50 PM
God Bless you today and always Stephen !!!!! Sending you a big hug and Kiss. We are all so excited you are coming home !!!!!! Love Carrie Tom CC Tommy and Quentin
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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!!