(This is from Ashlee, a guest contributor telling us about her sweet boy, Noah. Thanks Ashlee for sharing him with us!!)
This is Noah! He has a smile that can light up a room. He has big beautiful blue eyes. His favorite activities are wrestling, snacking his sisters, climbing in and on everything. Giving his mama a heart attack at least twice a day. Hiding in cupboards. Drinking chocolate milk. Playing trucks outside, screaming when he doesn't get his way and dancing with his mama. He also enjoys long walks on the beach :) Oh...I almost forgot he also has Trisomy 8.
No-man (as he is sometimes referred) is going to be 2 years old on March 3rd. That is huge for a little boy with a genetic condition that has the label "incompatible with life" attached to it.
We found out about Noah when he was 2 months old. His case worker called us and told us that we needed to really think whether or not we could parent a child that would most likely worst case be a vegetable. Wow. Heavy. My husband Paul and I looked at each other. If God wanted Noah to be our child we would not say no. If he didnt, well then we wouldn't get chosen for him. No harm in trying right? 4 weeks later his beautiful birthmom handed him to me to be my baby forever. I must say that the moment we said yes to Noah God started healing him. He was doing things he had never done before. When we got him he was 3 months old and 3 months delayed. So basically fresh from the womb. We saw about 25 specialists. Noah had Trisomy 8, extremely high pain tolerance, a sub-mucus cleft palate, hyperactive gag, no suck and I am sure a myriad of other issues I have long since forgotten. See thats the thing about NICU moms and moms of medical babies we get a kind of PTSD. It's the only way to survive and keep going really. He had multiple surgeries his first year. He had a gtube placed and vomited about 10-15 times a day. Not cute lil spit up either. Massive amounts of projectile vomit. My house reeked of it. gag.
There is so much to his story...too much to do it all justice here but I want to highlight an area that I remember all too well.
December 25th 2010- My son had no woken up for 3 days. We made 31 visits to the childrens hospital in 2 months time. Something was wrong with him. No one believe me. That day I had enough. I sent my other 4 kids to stay at grandmas. Paul and I rushed Noah to the ER of Children's Hospital. The doctor who first saw him laying there lethargic and not awake said he was fine. She said it was his first winter and he wasnt use to it. She wanted to send us home. Next 2 young drs come in and say they believe me and would like to get a ct scan. Enter first dr again. "Oh you are that kind of mom that would pump your kid full of radiation for no reason!" she said. I ran out of the room crying. I called Noah's transitional care mom. She told me to keep fighting for Noah. A lot of people were praying for us all over the country. That doctor never came back. Noah had his ct scan was rushed to the 4th floor and had to have immediate surgery. They had missed a 2 month old double ear infection and it was starting to errode his skull bone.
Wait wait wait. Pick your jaws up its just getting good. After the doctors blaming me for this one came in and said," I think you should think about removing his gtube and letting him go." Kill him?Why?! "Because I have never met a Trisomy 8 adult. Well Buddy just wait I will bring him back in 18 years! That doctor never stepped foot into Noah's room again.
The doctors said he would need 3-4 weeks minimum in the hospital. A PICC line and all kinds of things. He left that hospital in a week without anything other than ear tubes and a gtube. God is so good and so much bigger than doctors.
One thing I would say to a new mom of a SN child is find your voice. Doctors will write your kid off, but you are his mama! You fight as much or as little as you want. If you want breathing treatments or oxygen fight for it. Don't let the doctors talk you out of it saying it is "excessive measures." You should have the right to make medical decisions for your child.
To follow Noah and read all about his journey with Trisomy 8 go to:
Feel free to ask me anything as I am an open book. No subject off limits. I can talk about adoption, special needs, Trisomy 8, surgeries, gtubes you get the idea :)