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Challenge: NICU Parenting

A Diagnosis Before Birth

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My son Stephen was diagnosed with a rare kidney disease, ARPKD, when I was 27 weeks pregnant. His kidney's had completely shut down at some point during my pregnancy and as a result, I had no amniotic fluid left. Because of the severity of this disease and it's early on-set, many doctor's did not believe that Stephen would survive. Some thought he wouldn't make it to full-term, other's felt he wouldn't have enough lung function to survive outside the womb, but his Dad and I didn't give up hope. We found other families through Facebook who had children with this disease and held on to the belief that as long as Stephen could survive past birth, he could have both of his diseased kidney's removed, giving his lungs room to expand and grow, and he could live on dialysis until receiving a kidney transplant. We knew this would be an incredibly difficult and long road with a long NICU stay, but we were on board!

Our miracle was granted on January 4, 2011, when Stephen was born and rushed away to the NICU to be evaluated and stabilized. He required respiratory intervention via CPAP, but didn't need to be put on a ventilator; another miracle. He was incredibly sick, but he was alive with all 10 fingers and 10 toes! I pleaded with the nurses to allow my husband to take me to the NICU so I could see him later that night, and even though I had just had an emergency c-section, they agreed for fear Stephen wouldn't survive the night.

It was an agonizing three days of visiting the NICU day and night without holding him. A feeling that only NICU parents can understand. When that moment finally came when the nurses untangled all his wires and cords and placed him in my arms, it was overwhelming. Holding a child I never expected I would get the chance to hold alive.

At 5 days old, Stephen was baptized by the hospital chaplain with just his Dad and I to watch (cold and flu season restricted visitors to only parents). And at 6 days old, he was packed into a tiny little clear "box" with all his equipment and wheeled down to surgery where both of his kidneys were removed, a peritoneal dialysis catheter was placed in his abdomen, and a gastronomy tube was inserted into his stomach. Our family was waiting outside the NICU that day to get their first glimpse of Stephen. While we had gotten used to seeing all of the tubes and wires and equipment, it was shocking for them to see this little baby in such distress.

Following Stephen's big surgery, he did well through recovery, but a week later, things took a bad turn and the real roller coaster ride began. Every day brought something new; good or bad. The nurses, doctor's and resident doctor's became my new family. They cried with us, helped us celebrate milestone's and taught me how to be a new Mom. Even on days when things were pretty status quo, I couldn't leave Stephen's side. Taking 30 minutes to pump in the mother's room, was torture.

Around 45 days, it became apparent that Stephen was improving enough to start trying to breast feed and take a bottle. Then came the physical therapy and all of the teaching so that I could become Stephen's primary caregiver at home and learn how to keep him alive. And it was time to do some serious shopping! Because we were told Stephen would never live, there was no baby shower or celebrating the arrival of a baby. The only things we had were a crib and rocking chair (the place I would sit and pump during the night). Shopping for baby gear took on a whole new meaning!!

The day Stephen came home, March 3, 2011, was so emotional. These amazing people were the reason my son was alive and they cared for him just like he was their own child. Could I do this on my own? What do I do without all the help and guidance? And it was scary to think the next time he would be admitted to the hospital (that would happen many times), it wouldn't be within the walls of the NICU.

The NICU is an emotional place. One minute you can be elated seeing your child's eyes for the first time and 10 minutes later you can be discussing devastating news with physicians. But if you harvest all of that energy into hope and positivity and focus on one minute/one hour/one day at a time, you'll eventually get to the end of the tunnel and get that happy ending of going home.

The end of the tunnel for our story is that Stephen received a non-related living donor kidney on May 9, 2013, and is now a vibrant, funny, loving 6 year old boy!!!

Stephen's Journey blog

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