Zane's Story
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Zane's Story
I had a pretty normal pregnancy other than high blood pressure.
I thought Zane moved around quite a bit, but looking back on it..he didn't.
We had no idea something could be wrong, while we were pregnant...little did we know.
Zane was born on February 13th, 2001 at 7:55pm. I had a normal labor and delivery. When he
was born, the OB rushed him to the warmer because he wasn't breathing. They kept assuring me
that he was ok, his hearbeat was fine, he just wasn't breathing on his own. The Neonatologists
came in, intubated him and rushed him off to the Newborn Intensive Care Unit (NICU). After I
was done with all my delivery stuff, I went
straight down to see him. He was pink and trying to cry, but didn't
move a lot and was only breathing 4 breaths a minute on his own. He was on the
ventilator for 5 days. He eventually worked up the muscle power to breath on his own, with the
help of a little oxygen blowing in his face. Since he was
on IV fluids and an NG tube since the day he was born,
they tried to bottle feed him at about 2 weeks old. He just couldn't do it very well.
We got him to take a bottle but it only
lasted about a week and the most he would take by himself was 10-15ccs.
So they went back to using the NG tube (a tube inserted through the nose that
goes to the stomach). When he was about 2.5 weeks old,
they noticed that he was having seizures. It didn't make the diagnosis any easier,
it still took them blood test after blood test to find out what it was. Everytime they came up with
something that it "might be" we had to go through the horror all over again. "It
could be Down's Syndrome, It could be Hyperglycinemia"...both of which are horrible diseases.
Well the genetics test came back and it wasn't Down's...we were so
relieved. Little did we know. About a week later another test result came back and said that it was Zellweger Syndrome.
A peroxisomal disorder that causes hypotonia (muscle weakness), difficulty
sucking, seizures, mental retardation, liver failure, and sometimes deafness and blindess. Well
eventhough we KNOW he could hear, as he reacted to our voices, he failed his hearing test.
When wee learned that the average life span for a child with Zellweger Syndrome is 4-6 months...
we were devastated but had a positive outlook because he was doing quite well. Well, in mid March, the Neonatologist brought
up to us that the NG tube couldn't stay in any longer
because it could cause irritation, so we had to get a Gastrostomy tube put in. They make an
incision in the stomach and insert a feeding tube so you can feed them directly to the stomach.
Well, that was the only choice we had...so we did it. He did really well with that and was only on
the ventilator for 2 days.
Finally on March 27th, they told us he could go home on the 29th...we were SO excited. We had
been waiting since February to bring him home! So, he came home on the 29th and came off
oxygen about a week after that. He had a GREAT few months. He did wonderful with his check
ups and had a lot of fun with us. He loved TV and music.....he even had a favorite song and
favorite tv shows! He loved for people to sing to him and he slept a lot..just like Daddy! lol. He
didn't really like toys much but had a dinosaur colors book that he adored. He would stare at it for hours.
We moved in with my mom when he was about 3.5 months old and he got very close to
her and my sister. He had grunting contests with my sister :)
Well in July he got a flu that turned into a cold soon after.
A cold for someone who has such weak muscles is very
dangerous and it quickly turned into pneumonia. He was in the hospital for a week
with that and was on a pressure ventilator. It cleared up and he got to come home, but he never
really got well. A week later he got it again and we stayed in the hospital 5 days that time. We
thought it was gone this time. He came home and did very well for about 2.5 weeks...but when he
got sick again, we found out that his organs were failing. His liver had been failing slowly
throughout his life, but now it was his heart too. On August 10th at about 3:20am, his heart
stopped and the chest compressions couldn't get him back. He passed away at 3:31am. We had
him cremated and his ashes rest in a beautiful ceramic building block in our living room.
Zane was the most wonderful baby in the world and I am so honored that
The Lord and Lady chose Jason and I
to be his parents. He taught us so much in his short life and I wish you ALL could've known him.
He made us so happy, and he still does. I know that
he's happier now. He's with The Lord and Lady.....what
could be better than that? He doesn't have
seizures anymore, he doesn't get sick and he can move
around all he wants. He's always with me. Although I miss him more than anything, I try to
remember that this is what's best for him. He was the reason I was born.
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