Eight years ago today, my life changed........ forever. It had actually begun to change some 17 weeks before when were first heard the words
{MOSAIC TRISOMY 16} .....
But that's not where it began. It begun after 5 miscarriages, one older brother, 5 years of secondary infertility, an awesome new doctor, 3 rounds of clomid and a blood test I didn't believe, so I took this....
Yep, I was definitely pregnant!
But I was scared, hesitant to believe this wouldn't end like the others.... but this one just felt ...
different. Little did I know how
different it was.
When we had an early ultrasound and I saw this little blob of a baby with a flickering heart, I knew then, this baby would make it. Then another ultrasound, and another. My due date was March 17th 2002, but with each ultrasound the "estimated due date" would get pushed back further and further based on his size. It was obvious, very quickly, that the baby wasn't growing right. I got the AFP (triple screen) blood test, and it came back positive for both downs and spina bifida. I just wanted to get the diagnostic ultrasound and between my (now ex) husband and my wonderful doctor, they talked me into the amnio. So, we got the amnio done and on the day before Halloween we went into the office, sat in a little exam room ... and heard the doctor start off with "Well, good news is it's not Spina Bifida or Down's Syndrome... bad news is that it's an extremely rare genetic disorder called
{MOSAIC TRISOMY 16}... everything else he said fell on deaf ears pretty much until he said "Oh and by the way, it's a Boy!"
Everything was pretty much a daze for the rest of the pregnancy. Doctors appointments upon ultrasound appointments on top of ... fear of the unknown. Right after the diagnosis I had gone in for genetics counseling and heard the worst case scenarios and faught that things could turn out better then that. I was told flat out, they wouldn't, and was given the option to "interrupt the pregnancy" ... I sat there thinking, in that split second, but if you interrupt the pregnancy now, the baby will die, and then it dawned on me that the recommendation that he was giving me was getting an abortion. I told him, with the exact words, "That isn't an option."
Die during pregnancy, be stillborn, die right after birth - or shortly after... die in the hospital... if by some miracle, he DID go home, he'd be so mentally and physically delayed, it "wouldn't be worth it" ... that's what I was told.
Regardless, due to his genetic disorder, we knew, that at any time, for any reason, for as long as he lives ... any organ can go out at any time because there is no way of knowing what organs, if any, the MT16 effects, or the cells of that organ is changed due to his MT16.
He had a name... everyone who looked at him as a number, as a statistic, as a hope-less cause, we told them, he has a name... Noah Alexander.
I have no idea how many people thought that they would be right. All I knew is that I was scared I would have to bury the baby that I fought five years for. I came to terms with it, as best I could, and I decided I wouldn't
TRY to focus on it, but I would remain hopeful and focus on that. We didn't prepare for a baby the way expecting parents prepare. I was to afraid to buy anything new. I would walk into the baby department and pick up little blue clothes, touch the softness, long to toss it in my cart as if it was nothing, and then put it back with a heavy woeful heart. I didn't buy a crib, or pick out bedding. I was given a changing table, and my Mom got a bassinet, and a carseat/stroller combo. We got some preemie clothes off of E-bay because we knew he would be tiny. I thought he'd be about 4 lbs... but he wasn't...
Not even close.....
I prepared Calahan as best you can prepare an excited 6 year old big brother. I told him the baby was sick, and that we'd have to stay in the hospital with him until he was well enough to come home. I did tell him, there was a chance, we wouldn't be able to bring him home.
One of my favorite ultrasound pictures of him. You can see his little profile of his face, looking over his shoulder, his spine, and he's all curled up with the umbilical cord on his side...
Then it happened, one morning really late in January 2002, I had a doctors appointment. I had been "flirting" with pre-eclampsia for a long time. However, as I lay there doing the non-stress test, tracking the baby's heartbeat, movement, and contractions that I was having every couple minutes... Noah had a heart deceleration. They came in and threatened me with a shot to stop the contractions, I drank more, tried to calm down - no needles please. I managed to escape it that day, but they wanted me back the following day. Between my high blood pressure, the contractions, and the heart deceleration, they were concerned. The following day, I went in and my blood pressure was worse, I had pre-eclampsia for sure now, and he was having more heart decelerations. I was given the first steroid shot for his lungs before I even left the clinic
I was sent to the hospital. For the first time I allowed myself to be scared to tears. This was it. They managed to get the other 2 steroid shots in (it was 3 total with Noah, based on the type given at the clinic) and then I had to go through another amnio to check his lung developement. I'll never forget that amnio, Noah actually tried to grab the needle, thinking it was a toy. Dr. B actually had to pull it back out of my womb, and he said "Bad Baby!" ... but the results came back saying that the lungs were close, but not all the way there. Regardless, he was sending me off to the hospital 2 hours away - where the higher level NICU was. It was time to deliver the baby. Between my pre-eclampsia and Noah's heart decelerations... it was time to get him out. Dr. B told me that it would probably be the following day, my Mom's birthday, that he would be delivered.
I got put in an ambulance, and through a snow storm, traveled to this foreign small town that held the salvation for my child. His only chance.
I got there, they ran test after test. Blood, urine, ultrasound... the placenta was tired and failing... and the Doctors came in and said they weren't going to wait. I got there around noon, and about 3:20 I was wheeled into the O.R.
Without reliving the whole traumatic birth again, at 3:45 - Noah Alexander came into this world, at the amazing 1lb 12oz and 13 3/4 inches long. I was 33 weeks pregnant. He was the size of baby on the cusp of survivability, but the gestation to make it. We could only hope, and pray .....
They didn't let him attempt to breath. They got him on the vent as quickly as possible (which meant I didn't get to see him at all after he was born) ... He was so tiny. There is no explaining how tiny he was. I would tell people, he's about the size of a ruler, a little heavier then 2 soda cans - however he doesn't feel like it, and his head fits in the palm of my hand. He came off the vent after only about 40 hours on it. He never went back on. People would walk past, see this tiny baby and wonder why he wasn't on the vent... and I later found out they (the nurses in the NICU) were told he wouldn't live through the first 24 hours. But he did, and he kept right on living.
Just a couple days old, at his lowest weight - with HOPE the TY beanie
On Valentine's Day - tiny Noah hit 2lbs! That's ALL Mommy wanted for Valentine's Day!
This was taken during Kangaroo Care.
Noah came home the day after his due date. He only weighed 3lbs 10oz then. He had to come home in a Carseat Bed. It didn't matter though, he was coming HOME!
He grew, slowly, but he grew, and before we knew it ... he was ONE!
Two Years Old
Three Years Old
Four Years Old
Five Years Old
Six Years Old
Seven Years Old
And today, we'll celebrate him turning EIGHT years old!!! For someone who started out so very tiny and we were told he wouldn't live...... he sure has proven them wrong! May he continue, to PROVE THEM WRONG... for a long long time!!!
Want to read more about Noah....
AGAINST THE ODDS is an article I wrote about Noah. On my other blog, a couple years ago when he was 5, I wrote more about
his pregnancy and birth story ... and recently, I wrote
Pity, for Pity's Sake (Noah's Story)... also on my other blog.
Noah at the end of January 2010
The Germs have decided it would fun to take up residence in our house. I say they can get the hell out - but what do I know??? Thursday when Nathan got sick, I used lysol a lot. Kaedyn had been sick the night before, just threw up once, in his crib, at some point between being laid down for bed and the morning. When we got him up Wednesday morning, there was vomit all over his crib. We quickly cleaned it and him up and then proceeded to ask our 18 month old son who doesn't talk ... why he didn't let us know. I mean a cry would have been helpful! Then Thursday at 11:30am Nathan started throwing up and he didn't stop until around 7pm... and at 11:30pm he perked right up and was feeling himself again, it seemed. So he kept me up until 3am Friday morning. Friday everything seemed fine... I thought the force field of Lysol I had put up was working. The shield against the germs was in place!
