Kim C.

[Guest guest]

Hi Kim,

No, ot wasn't planned at all. As a matter of fact, I was pretty

shocked when at 32.4 weeks the doc. brought me into his office (one

time when Rod couldn't be there.....figures!), and told me that I had

a decission to make. Either I wanted a live baby at birth, or risk

the really good chance that would be stillborn if he let me go

to term! I was like, " WHAT? " So, I knew a few weeks prior they

where thinking had Trisomy 18, but I had no idea it was going

to come to that. He told me that he had stopped growing, and I

better make a decission about what to do. He told me I had two weeks

at the most. was born a week and a half later, at 34 weeks

exactly.

Wow, your was really small. How long was he in the

hospital? Did or does he have a feeding tube? struggled

witht his fromt he beginning. He has always had some sort of tube,

and he has what is called trachiomalasia (sp?). It is where his wind

pipe is very narrow, and doesn't open enough for him to get the air

he needs. Certain positions would cause blue spells. He had to be

bagged several times for this, and on oxygen for two months!

was 17 months old when we finally got to Dr. H. He was

weighing 10+ lbs. at the time. He was very frail and skinny. She

was the one that confirmed he had RSS. But, at birth they finally

ruled out Trisomy 18, but couldn't give us a hint as to what it could

be. We went home not knowing anything. It wasn't until a later

hospital stay at 10 months old that RSS was a possiblitly. And, they

weren't even sure that was it. They did the UPD 7 study on ,

and that came back normal, so the ball was dropped from then until a

metabolic specialist mentioned RSS. He gave us Dr. H's info. and

told us about another RSS patient he treated. Low and behold it was

, Pat's grandson. Pat helped me out a lot with the RSS thing,

too! ) It was a long journey, and suffered so much due to

it, but he is doing so much better now!

I hope is doing well, and look for me at the convention! I

want to talk to you. By the way, my oldest son, who is four, is

named ! ) Great name!

Jodi R.

> > Kim and Leah,

> > was also delivered early due to severe IUGR. They took

him at

> > 34 weeks. He weighed a mere 2 lbs. 12 1/2 oz.! He was sooo

tiny.

> > Anyway, I just wanted to let you know you guys aren't alone!

They

> > thought had Trisomy 18!

> >

> > Jodi R.