We spend that summer 2005 with faith that somehow our baby would be ok and survive the birth even though the doctors painted a gloomy prognosis. We worked on fixing up the house, maintaining a garden, entertaining our 4-year old son, Roy, and keeping him worry-free, working at our jobs of course, more doctor appointments, and praying that somehow our baby growing inside of me would escape the perilous fate the doctors warned us about.
Then the day came that everything changed, about the 2nd week in September. Our home is a split level so all of the staircases are just 7-8 steps long. I was headed downstairs and had a pregnancy clutz moment–I slipped on the stairs and ended up bouncing down a few steps on my rear end! That hurt a little but I got up and knew I had an ultrasound scheduled the next morning. Doctors still don’t have an explanation for what they saw on that exam table the next day during the ultrasound. It was a miracle. All of the fluid that was trapped in the baby’s bladder had moved out of the bladder and there was a regular amount of amniotic fluid! The doctor even pulled the last ultrasound to compare to be sure they were looking at the same uterus! As of that day, all of the doctors concurred that this baby might have enough time for the lungs to “catch up” in development to sustain his life after birth. The doctors that suggested to terminate this pregnancy now were saying that this could be a viable baby! None of them could figure out why, but it’s not the way it usually happens. A few hours later I was checked into the maternal-fetal unit at the hospital for 6 weeks of fetal monitoring. That’s a whole other story, but that room at the end of the hall on the high-risk floor was my home for a while.
Finally mid-October came and it was almost time. This whole odyssey had been unconventional so why would it be a surprise that this baby was breech and a c-section was planned. Docs gave me a dose of surfactant to help the baby’s lung pockets open for the best possible chance at breathing. A week later, with my husband and extended family by my side I was taken to the operating room for the C-section. We didn’t know what the outcome would be so Father Emilio (our parish’s newly ordained priest from Italy) agreed to baptize our baby as soon as possible after his birth. A few moments later, Joseph was born (a life changing event for Father Emilio as the first birth he witnessed), my husband did great and stayed calm while one team attended to this fragile baby and the other team worked on stitching me up. Father Emilio baptized Joseph with oil on the warming table before he was whisked off to the NICU and I was whisked off to recovery (the aftermath of the c-section was a little harrowing and I needed a blood transfusion). I recovered the next few days just down the hall from the NICU.
Joseph was in Children’s Hospital for 3 months before we could bring him home with the diagnoses’ of Eagle-Barrett Syndrome, End Stage Renal Disease, Bilateral Club Feet, Failure to Thrive, and urological abnormalities. He had a series of leg castings for many months, had his first surgery at 7 days (a vesicostomy) and his second surgery at 30 days to start peritoneal dialysis which would become a nightly ritual for the next 3 years.
Remember in Part 1 of this story we really wanted a semi-rural home but our realtor, Beth Ann, found us one in the suburbian metro area. Turns out it’s just about 45 minutes, all highway, from Children’s Hospital (less on low traffic days). Well, at the old Children’s Hospital there was no room for parents sleeping in the NICU (the new hospital changed all of that). Daily drives to the NICU and even after he came home on peritoneal dialysis, there were countless trips to the emergency room when dialysis wasn’t working right (with the dialysis machine in tow), every little infection he had was serious, multiple monthly appointment with nephrology, urology, gastroenterology, over 21 surgeries, follow-ups, lengthy hospital stays several times each year, it’s not hard to see how important our home choice was to not only be with our new child but also be present for our older son, Roy. It definitely wasn’t easy through those most fragile, scary years and things got exponentially better when we got the call Thanksgiving weekend 2008 that there was a kidney for Joseph! The next night Joseph had a hero that said “yes” to organ donation and received a new kidney. It’s been almost 9 years now and the family of the man who put that heart on his driver’s license is always part of our hearts. Now his check-ups are only every couple of months and we can usually plan on at least one hospitalization per year, sometimes more, because of one complication or another, but it’s not every 3 months or so like when he was younger.
If we got the home location we wanted many of those trips to the hospital would have turned into an emergency situation, we may have had been stranded due to snow and not been able to get Joseph the help he needed many times without the intervention of ambulance transport, and just so much more cost in gas which many times was a hardship in and of itself not to mention that the “hospital mom” (me) still needed to eat while staying in the hospital with Joseph.
During my years as a “hospital mom” I have met many families that travel from South Dakota, Wyoming, Utah, New Mexico, and throughout Colorado for the specialty treatments only the Children’s Hospital of Colorado can provide to the smallest patients.
Instead of getting what we wanted, we got what we needed–even though we didn’t know we needed it at the time. A home in a suburb only 45 minutes from Children’s Hospital, all because of Beth Ann Mott, our heaven sent realtor.
Joseph is now a 2017 Children’s Hospital Ambassador. Here’s his personal link to help raise funds for Children’s Hospital: Foundation:http://support.childrenscoloradofoundation.org/site/TR/TeamChildrensColorado/General?px=1239638&pg=personal&fr_id=1163
