Stephen's Journey: March of Dimes Walk for Babies

Friday, April 8, 2011

March of Dimes Walk for Babies

It's no surprise to anyone who has been following my blog that we LOVE our NICU family. And when I say family, I mean all the nurses, doctors, and staff at INOVA Fairfax hospital NICU. So when we heard the March of Dimes Walk for Babies is in May, we knew we had to participate.

March of Dimes typically helps preemie babies, but really their goal is to help all families with babies in intensive care; whether they are premature or suffer from other illnesses, diseases, and disorders. Having a child in intensive care is not easy and most of the babies in the NICU are there for extended stays, so March of Dimes tries to make that stay easier for the families by providing support groups, instructional classes, and other events to help make that time a bit easier. And although we weren't really able to take advantage of most of their services, we know what it's like to have a sick baby. And we would do anything to help other families with sick babies and to support the doctors and nurses who take care of and cure those sick babies.

So we are more than excited to participate in the Walk for Babies! I've added a badge to the right side of the blog in case anyone is interested in supporting us and the NICU. We would appreciate any and all support, even if it's just a shout out on the blog!

And a big shout out to everyone we saw today during our mini-reunion at the NICU. Stephen had labs at the hospital and we got lucky that we were able to see so many of our favorite people! It was so amazing to see you all and we miss you everyday! Big hugs and kisses!!!!!!

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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!!