Re: Stacey/frustration--> Hess

[Guest guest]

Jen,

I just posted a message on here to Salem that you might want

to read, but I aslo wanted to respond to you directly. I am so sorry

to hear about all you have dealt with and are still dealing with. I

can't imagine the physical and emotional pain you have/are

experiencing. I feel terrible about your hysterectomy, and the loss

of your brother being so close together, at that. It would be hard

enough to deal with just one of those things, but to have them happen

back to back....I can't imagine and I feel for you so much. I am so

glad that you felt comfortable enough here to share all of that with

all of us. Sometimes it just feels better to get stuff out and tell

other people. It doesn't make it go away, but the support you get

from others can be a real boost to your spirit.

I had doctors tell me the same things about my pregnancy with

. They told me he had Trisomy 18 and that if he probably

wouldn't make it out of the pregnancy, and if he did he wouldn't live

ong, or past the age of one at the most! After a couple weeks went

by and another u/s, the doctor brought me into his office (I knew

something was wrong then), and told me that if I wanted to have a

live baby I had to decide soon waht to do. He couldn't gaurantee

that was going to live much longer inside because he had not

grown in the two weeks. So, we decided at right before 34 weeks to

be induced. To make a long story short, once was stable and

he was in the NICU his geneticist looked at him and said that he

didn't have trisomy 18, but she ran all the chromosome tests just to

be safe. Needless to say his chromosoomes are fine, and they had no

clue waht the problem was. Due to lack of growth and failure to wean

off the oxygen, and the fact that he didn't eat by mouth, he was

hospitalized for the first three months. We didn't find out unil

this past October 23 that has RSS, and that was confirmed by

Dr Harbison in New York. So, our first 17 months with were

full of the unknown and what if's, etc. I was to the point that I

was afraid he would die because of his lack of weight gain and feeble

little body. He was so small and fragile. His health was good

considering, but I was still so scared. That is why I took him to NY

to see Dr. H. I knew taht she was my only hope for him at that

point. Thank God because she turned him around and he has done so

much better since then. His weight is up almost 4 lbs. in three

months. Very good for . Especially considering he would only

gain 3 ounces a week at the most and he even had a feww one ounce

gains!

I know exactly how you feel about your friend being pregnant and

doing all that yucky stuff. I was like you. I didn't do a thing

wrong while I was pregnant. I didn't even drink caffiene and I would

be hard pressed to even take ONE Tylenol. I did all the right

things, took care of myslef, drank water, all the things they tell

you to do while pregnant. But, at 20 weeks my world came crashing

down. That's the first detection something was wrong with my baby.

I have to say, I am even enviuos of pregnant women I see walking

around me. I look at them and long for that wonderful pregnancy. I

think about how I am so sure their baby's are just fine. My cousin

was pregnant at the same time I was pregnant with and I

remember her complaining about her back hurting and how big and

miserable she was. We are very close, but I was a little upset by

it. Plus, when she found out she was having a girl, she acted a

little devastated and standoffish! I was like, " What? " Be happy

YOUR baby is GROWING, and doing well.!! Oh man, waht I would have

given to have her pregnancy. But, I digress. ) I am a VERY

sensitive person myself, if you haven't already noticed! )

Jen, I hope things get better for you, and once again I am sorry

about all you have been through. To answer your question, I don't

know how I get through each day. I have other things that I struggle

to deal with myself, and that on top of all that goes on with ,

I don't know how I am not in a looney bin somewhere. Some of the

things are pretty hard to deal with, but I guess I deal with them

only on the days I have to deal with them. But, as far as

goes, I deal with that everyday, and everything adds up somedays and

I just want to hide and not go through it anymore. But, somehow, I

find the strength and go on. Like you, I love my kids and would go

to the end of the world for them, so to speak. I guess they are my

strength. Someday my downfall when they are at each other or when

the oldest is mouthy! )

Take care Jen,

Jodi R.

's mommy

IUGR/RSS 20 months old, 14 lbs. 7 oz. today!