My Husband and I were so excited in December of 2006 to learn the news that we were expecting our 3rd child...Our due date was Aug 23, 2007. We didn’t tell anyone for quite a while since I had a miscarriage in 2004 and was scared that the same fate would follow...
In February of 2007 I had a screening (new to me) that I didn't have with my other boys...A Nural Tube defect screening. Had the test done and didn’t think anymore of it until the Dr.’s office called and said the Dr. wanted to see me the next week since she was going on vacation....Sick with worry. Was a horrible week...my husband and I drove an hour to our Doctors Office and she told us that our babies test came back positive for Spina Bifida. Then something told me to ask if it came back for anything else and she said yes, Trisomy 18 and I asked what that was and she told us that the baby would not be compatible with life....
Our world was turned upside down. I had to make phone calls to let the family know and I couldn't do it; my husband, "MY Rock", did it for me... I cried and cried. But I knew that we could take care of a baby with Spina Bifida. We could do this...
We were scheduled with a Perinatologist for the end of the next week. I was 16 weeks along. Our appointment was in March and I was a wreck. It went along ok as she did her measurements and we opted for an amino in case the baby had spina bifida that way we would be prepared at home if we need to be.. She was sure by the utrasound that the baby had Trisomy 18 and gave us the option to terminate... Out of the question for us... This was a gift from God and we had to give it up to him. The next week was the worst waiting for the results from the Amino...When they came in and told us they were normal we were SO EXCITED... So relieved except for the fluid on the brain...
Colby’s Vents were enlarged so they told us it was Hydrocephalus...I had heard about it since a young woman at our church has the same thing and she was my inspiration that our baby would be ok.... After many check ups through out the next 5 months and plenty of worry... I just felt in my heart that this baby I was carrying was going to be ok...
Colby James was born on Aug 7, 2007 on our middle son Jeremy’s 7th birthday...He was on oxygen and was eating but had a NG tube till he got his sucking down and then was in the NICU for 1 week before we were released and had an appointment with his NS from Stanford. Dr Edwards was not happy with the way he looked because of the oxygen, so he turned it up and he looked better but still wasn't to happy, so he called his team and Colby was then medevaced to Lucille Packard Children’s Hospital in Palo Alto California where his shunt was placed, We live an hour from Reno... So my son was taken in a fixed wing aircraft and flown to LPCH without mom or dad...
Hardest day of my life, we then traveled down by car and my husband Doug would call the NICU every time I asked to see how he was while we were on the road. Every time we got the same answer he was doing great. He even got off oxygen about 2 am that was a relief...the next day he was having his shunt placed and did really well...We came home for about a week and we noticed a bunch of fluid around his shunt.. So he had to sit in his car seat to sleep so gravity would drain the fluid downward...till we could get in with his NS. He had his appointment with his Pediatrician and he was running a low grade fever. So with being under 2 months old he was admitted to the hospital... for 1 week he was in the hospital all tests were coming back negative we had no idea what was happening... finally Dr. Edwards at LPCH ordered a shunt tap… In my heart I knew it was a shunt infection when everyone else didn't think so...
What else could have it been when everything else was coming back negative. Finally after 2 days of CSF not getting antibiotics in the lab his cultures started to grow and a shunt infection was diagnosed... So medevaced again to LPCH and he was on an external shunt for 14 days and that shunt was then removed and we got to come home.. 3 week later we returned for shunt placement once again... then after 3 weeks at home his shunt started to pull out of his head. He was doing the best that he had ever done... more head control... still didn't like tummy time but was as happy and joyful as a baby could ever be... Smiling and cooing, just joyful... We were then headed back for a revision…
That was November 6, 2007 that was number five in 3 months and since then he is thriving and learning and observes life like no other... He is in School and loves it and is still that joyful little boy and doing fantabulous......We are so Thankful for the NS team at LPCH and the no sugar coating it... telling it how it is, and taking care of THEIR baby when mom had only 1 huge meltdown when he was in NICU and got him the pain meds he needed instead of just Tylenol after a brain surgery......
I am so thankful for my husband and children that have been there every step of the way and new we could do this... My Parents, My sister and her family, and all my In Laws...What a support team I am so thankful for.......
I am so thankful the PHF Inc, and for Kim and Michael and NiCole Atkins, Sawanda Middleton, Sherri Lee and Sara Gilliam and Bethany Wright... They were my first friends on this journey that our Colby has brought us on and I wouldn't know what to do without them... They are my ROCKIN MOMS... If I forgot anyone, I am sorry... Thanks for all the support and ears to turn to when we have a questions...
You all made this journey a whole lot easier...