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Pieces of You


2003-11-30 ... 7:53 a.m.

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poy, tough times

pieces of you: tough times

the toughest thing in my life was when i was pregnant with the dude. i had all the normal tests, whatever, and they all came out fine. i was really sick with morning sickness, though. there were days i was just green, and would lie down at work until the nausea would pass. after 5 months, i had only gained 11 pounds. i lost my appetite, but then after the nausea was gone, i could eat again.

when i was about 7 months pregnant, i was really big! and since i hadnt gained that much weight, but i looked like i was ready to deliver, the doc ordered another ultrasound.

i knew the ultrasound tech, since i worked with him. he wouldnt give me any information other than that my baby was a boy. he also called the radiologist (my boss) into the room, and he said hed get back to me. ok, whatever. it wasnt a big deal, just standard procedure.

i went to lunch, and when the elevator door opened, there was the ultrasound tech and my ob physician on the elevator. i didnt think anything of it, since they often talked. i made a joke about having just had the ultrasound, but neither of them laughed much. it really didnt occur to me that they had been talking about me.

when i got back from lunch, my ob doc (steve) called me on the phone and said, "we need to talk". i knew then that something was going on. he was working one floor down from me, i told my coworkers i would be gone for a bit and ran down the steps.

i walked into the waiting room, and they took me right in to a room. ok, now i know something is really up, since i had never been there before and not had to wait. steve came in, and we both sat down. oh oh

he told me there were some unusual findings on my ultrasound. ok, what? the nuchal fold was bigger than expected. (its a fold of skin behind the neck) the babys long bones were shorter than expected. the face was "bossed" meaning that the forehead was a bit flattened, the bridge of the nose was pushed back a bit. but nothing else was wrong. nothing else?? shit, wasnt that enough? ok, so what does this mean?

your baby has either down's syndrome, or dwarfism. man, it was really getting hot in that room, and i had to open my lab coat. the doc was tugging at his collar, he agreed it was pretty warm in the room. he wanted me to see a geneticist, the next day. he needed to know before delivery what was going on with the baby. we talked a bit about dwarfism and downs, i was in his office for 90 minutes, but i really dont remember much about it. i didnt even know what wed talked about that day. i guess i heard all i needed to remember in the first 5 minutes.

i went back to work, and i was kind of in a daze. steve called my boss and told them i was going home. i called the office to get a replacement for me, and the boss there, liz, was impatient with me, well why do you have to leave? i remember saying, something is wrong with the baby and i have to go. even though she had to come from across town, my replacement got there in what seemed like 10 minutes. i stopped at the store the man was working at, and told him to come straight home after work.

when he got home, i told him. he took the next day off to go see the geneticist with me.

the next day, i remember crying in the shower. i couldnt believe this was happening, and i didnt know how we would deal with this. what would the baby be like? as i came out of the shower, my phone was ringing. it was one of the doctors i worked for, jim, and he was almost yelling, "they are wrong, you'll see, it isnt true". he was in more denial than i was.

we got there about 10 am. we filled out papers, papers, and more papers. not for insurance, but family and current history. it took an hour. thats a long time to fill out paperwork. they wanted to know if anyone in our families had birth defects, or any kind of medical condition.

then for an hour we talked with one of the nurses, (who i actually had worked with in the past) and the doctor. (the doctor was absolutely the most charming man i have ever met in my life) he was from south america, so he had a heavy accent. he was a bit hard to understand, but very patient about repeating himself. then it was on to ultrasound.

i had 6 hours of ultrasound that day. they took hundreds of pictures, and videotaped the entire thing. they looked at and measured every bone, in every dimension. the baby had a lot of hair.. lol.. and a lot of skin, but short bones. he had no internal organ malformations, in fact, had urine in his bladder, and his heart was complete with no anomalies.

i had to get up and walk around for a bit, its hard to lie on your back for that long when you are pregnant. they tried to get a picture of the dudes face, but he was shy, and wouldnt turn enough for them to see it. they actually could see it, but only from one direction, and they needed other pictures.

the last procedure i had was a fetal biopsy. they put a needle into my abdomen, it was about 8 inches long. and thats not an exaggeration. the needle was hollow, with a piece that went down into the needle that would collect tissue and fluid. they took some amniotic fluid and placental tissue to do dna testing on. this procedure really didnt hurt, and they kept telling me how well i was doing. the man, however, was looking a bit green when they stuck the biopsy needle into me. but at least he didnt pass out. they tried, while they were in there, to get umbilical cord blood, but couldnt get into the artery, and apparently it wasnt important enough for them to continue trying, because they quit. at that time, it was a new procedure, and the doc didnt want to mess around too much. so, ok, get up and dressed and we will talk later. i still have the scar from the needle.

by this time, it was about 8pm. definetly a long day. the doctor sat down with us, and said he was 98% sure that the baby was an achondroplastic dwarf, and didnt have down's syndrome at all. he based his decision on the fact that there were no internal organ problems, which are the standard for down's syndrome. he couldnt see the babys face well, and that can be an indicator too, so he needed me to return in a week. the increase in size of the nuchal fold and all the extra skin was due to the fact that the babys genes told the skin to grow normally, but held back the growth of the long bones. well that made sense. he showed us pictures of what the baby was likely to look like as a child, and as an adult. he really was counseling us, and told us we could come back or call if we needed more counselling. he said the dude would likely be 44" tall at adult height. that is the norm for dwarves of his type. the man asked a few questions, and the final word was, he would be short, and his arms, legs and head would be out of proportion to his trunk, but he would be normal in all other respects. it was a much better diagnosis than downs syndrome, and infinetly better than some of the other forms of dwarfism, where the baby is so grossly deformed that they usually die within a week of birth. goody.

we got home, psis had stayed with the kid all day, and the man told her what was happening. i fell into bed. i guess i was too tired to do much else.

the next day was work as usual. i got quite a few hugs from some unlikely people when they were told the news. i didnt cry much, i dont know if the shock still hadnt worn off or what. but jim, one of the docs, still insisted the geneticist was wrong.

i had another appointment, a week later, to be measured, and have more ultrasound, to see if they could document the babys face. the reason i was so huge was that i had 1 1/2 times the amniotic fluid i was supposed to. the original ultrasound tech didnt believe the geneticist, and was convinced that the baby had down's. the radiologists report stated undeniably that my baby had down's syndrome. he felt it was unlikely to be anything else.

i had another genetic appointment a week later, but it snowed so much that their office was closed. but they had called me with the news that the dna results were perfect, that there was no dna abnormalities, which meant 100% that the baby did not have down's syndrome. that was really good news, and it made me cry, finally.

my ob doc called one day, and told me to "call off my dogs". apparently jim had cornered him in an elevator, poking him in the chest with his finger, telling him, and threatening him, that he shouldnt be doing this to a pregnant woman, it wasnt good for me or the baby, and that he was wrong, wrong, wrong. thanks, big brother.

about this time the geneticists report came, it was 30 pages long. steve and i went over it, discussing what was on the report, and what everything meant. i will always be grateful to steve, he was very compassionate at this time.

at 8 months and 2 days, i went into labor. at 11 pm. lol doesnt it always happen at night? i had had to find a new physician for the baby, since the family practise doc i had wanted wouldnt come near the baby. he recommended a group of pediatricians. so we were all gathered in the delivery room, me, the man, the doc, and another ob doc he grabbed out of the hall for help, 2 nurses and a pediatrician. the man was stuck in the corner and couldnt get out, and he was very pale. labor was short, 6 hours from when my water broke till delivery.

the dude was not crying when he came out, due to the drugs they had given me. they gave him some narcan, and the needle stick made him cry. they whisked him away, and i never really saw him, but the man made his way out of the corner and insisted on watching the docs work on him. thank you, man.

i went to my room, took a shower, and got an early breakfast. and then i got breakfast again at the regular time. dang, i was hungry. i wandered down to the nursery, where the dude was in an isolette having a chest xray done. the doctors felt he might have inhaled some fluid, since his oxygen levels were a bit depressed. the techs had to come back and repeat one of the views, so i watched that too.

the nurses let me come in and hold him then, tubes and wires, and all. i started to cry, and i heard this voice in my head that said, "dont worry, mom, you'll see, i'll be ok". i was so shocked, i could hardly hold him. i truly believe the dude sent me those words. i tried nursing him, but he was too weak. poor little thing. i sat and rocked him for about 30 minutes, then the nurses made me put him back in the oxygen and i went back to my room.

i had a lot of visitors from the office i worked in, the nurses had to kick some of them out because it was such a steady stream of people. none of the radiologists i worked for came to see me, maybe because they really didnt know what to say.

since i had come in to the hospital in the very early morning, i could stay that day, and another. the dude was not allowed to leave, and the hospital let me stay until he could go, for free. i stayed another day, and the man made me come home because the kid was missing me too much. she was only 3. so i spent one night at home while the dude was in the hospital. i think that was one of the hardest things, to leave him there and go home. i cried all the way.

the next day, my parents came and took me to the hospital to pick up the dude. he was jaundiced, and they did a blood test to see how bad it really was. they said, oh no problem he can go... but then they came back and said they had gotten the report on a different baby, the dudes was much higher. but i had a death grip on him, and was NOT about to let him stay another night alone. so they had no choice but to let him go with me.

a home health nurse came and brought a set of lights i had to keep the dude in to help resolve the jaundice. at the time, i had a dog, and she wouldnt let the nurse in the dudes room. lol. so i had to bring the dude out for her to look at. he had blood testing done every day for a week, and when his blood was ok they took the lights away, and we were on our own.

after a couple of weeks, i took him to my former work. my boss, jim, looked at him, and said he could no longer deny that yes, he really is a dwarf. i took him to the geneticist, and he said the same thing. it was definetly the better of the two options, but still, i had hoped he would have been normal when he was born.

the dude did have foot trouble, his feet turned in, and he had bowed legs, so he wore casts for a few months. he does have a few anomalies, his hips are not normal, and he sees a chiropractor for back pain. the chiropractor (dr b) said he just "wasnt put together right" and he is adjusting him to get things to line up the way they should. other than that, he has no physical problems.

he is shorter than all the kids in his class but one, no, growth hormones wont help. but he is over 50" tall, and only 13, so he has a few years yet to grow and even though he will never reach 6', i am already glad he has made it this far.

he has made up for his physical stature in the intellect department, though. he is a very smart boy, he can read or hear something twice and remember it word for word. this was apparent early. at age 4, he could count by 2s, 3s, and 5s, and tell time. he would come home from 4 year old kindergarten and tell us, for example, all about polar bears. he talked for 10 minutes one afternoon about what he had learned at school. quite unusual for age 4. the teacher would recite a poem every day, maurice sendak's chicken soup with rice and he would remember it the first day the teacher would say it. also unusual.

he is in accelerated classes now, but in most respects is just a normal boy, other than being short. we deal with the stature and other problems as they come up. now, its just part of who he is, and i wouldnt have him any other way. he will have to deal with this forever, but we have always treated him like we would have if he had been "normal", and i believe that was the best way to go. no special treatment, other than having a lot of step stools around for him to use.

and this whole things has given me a much different attitude. other parents complain about the stupidest things, i just think, you dont know how lucky your child is to be "normal" looking. i dont take my children for granted anymore. i do appreciate their differences and love them both.

just a note added on 12-8, this was chosen as the winner of the week? month? yay!!

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poy, tough times - 2003-11-30

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