Thursday, July 26, 2007

Surrounded by Babies

Yesterday at feeding therapy there was an adorable brand new baby. He was perfect right down to his wrinkles and his skinny little feet. One of my close friends just had a new little girl, too (congrats, Candi!). It seems like there are new babies everywhere.
I would love to add to that mix but I'm chicken. Doctors have told me that there's a 30% chance that I would get HELLP again. A 70% chance of it not happening is really pretty good odds, but the stakes are a little high for me. Everytime I think about having a baby I get flashbacks to that night when I was shoved a c-section consent form and told that there was no time to go over surgery risks, but none of them were worse than dying (which is what would happen if I didn't get into surgery right then). That was a scary time, but how much scarier would it be with a very needy little boy waiting at home? How could I knowingly risk my life knowing that my little Noah needs me?
We said that we would "never say never" until I turned 34, but I think we're at "probably never" at this point. Maybe amazing new therapies will come out in the next 5 years that will change my mind. Maybe Noah will grow into such a capable little man (or my parents will finally move local) and the idea of long term bedrest won't seem so daunting. Maybe we'll have an "Oops" baby. Who knows.
Then of course there's the issue of adoption. I would love to adopt but it's so expensive. And then of course there's the issue of disability. If I adopt a "normal" child will Noah think I'm trying to replace him because he's not good enough? Am I willing to take on the responsibility of a second disabled child? I just don't know.
I suppose in time these questions will answer themselves. But when I see new babies I can't help mourning a little what a probably won't have.

Wednesday, July 25, 2007


Lisa tagged me to post 8 random facts about myself. Here are the rules:

1. Each player starts with eight random facts/habits about themselves.
2. People who are tagged need to write their own blog (about their eight things) and post these rules.
3. At the end of your blog, you need to choose eight people to get tagged and list their names.

Without further ado, 8 random facts about me.
  1. I used to be an overachiever. On the day that I was admitted to the hospital in liver failure I insisted that my husband stop at school so I could drop off plans for my substitute (ummmm… did I mention I was dying?).
  2. My family beta-tested cable modems. We had high speed internet before most of my friends had heard of dial-up.
  3. I went to a small Christian college in the middle of nowhere and loved it. I had full pre-med scholarships to Tufts and John Hopkins. My parents were…. surprised.
  4. I was home-schooled for 7th-12th grades.
  5. Brian (my husband) and I met doing work-study jobs in college. He worked at the computer repair shop and I worked at the help desk right across the hall. Our first date was my 20th birthday although we didn't start dating seriously for another 3 years.
  6. Noah and I were born at the same hospital but in different buildings. The building that used to hold the main hospital is now just offices.
  7. My first engagement ring was a watermelon ring pop.
  8. Although I was born in VA I have spent most of my life in the northeast. I would love to move back to either NH or rural western NY.

Most of the preemie bloggers I know have already been tagged, except (hopefully?) for Tracy. I'll also tag Jule Ann, another fan of small Christian colleges in the middle of nowhere. That's all I can think of for now. I'll have to add more later.

Tuesday, July 24, 2007

You know you have a vision impairment when...

This morning we met our OT at the park to work on our goals of "walking on uneven surfaces" and "going up and down steps". Noah walked on blacktop, grass, pebbles and mulch and didn't fall down once. That's a huge improvement! He was hesitant about steps but we helped him go through the motions. Out OT says that it's not that he can't do it, but because he can't tell the difference between a color change on the sidewalk and a huge step he gets scared. She said that once he feels comfortable with steps it'll just be a matter of having someone with him to cue him the first time he goes someplace. Anyway, there was pink neon caution tape keeping cars from going back to the playground area. We lifted the first tape for Noah to go under but by the time we got to the second tape Noah was running a few steps ahead. He ran right smack into the tape. Of course it didn't hurt him, but we were laughing because we had just been talking about how nice that the tape was bright enough for Noah to see it. I guess not.

Thursday, July 19, 2007


Sometimes you get so caught up in the day to day struggles you miss out on the progress that is being made. Since Noah left the day patient feeding program I've felt the constant NICU-like pressure to get him to gain weight (or else!). Each good day is a victory and each bad day a defeat. When we were day patients our nutritionist told me that they didn't all have to be good (feeding) days - as long as there were more good than bad everything would work out in the end. I thought that was really great advice. Unfortunately I spend so much time worrying about the bad days that I don't often notice the good days when they do happen.
Today we had feeding clinic and met with all of the specialists who follow the day patients. They were quite pleased with Noah's progress. Not only has he continued to make (slow) progress as an outpatient, he's growing like crazy. At Noah's discharge he weighed 21 lb 7 oz (9.74 kg) and had a height of just over 30" (76.3 cm). Two months later Noah now weighs 23 lb 6 oz (10.6 kg) and has a height of just under 31" (78.2 cm). If you had asked me yesterday I would've told you he was struggling with his weight gain. Guess it's time to look at the big picture.

Saturday, July 14, 2007

Confession of a Crazy CI Mom (without enough sleep)

Sometimes I want to stick things on the magnet in Noah's head. Like paperclips or the magnetic letters that are on the refrigerator. Just because.

Friday, July 13, 2007


I added some more links of blogs that I read. If I read your blog (or if you think I should) please leave a comment. I know that I didn't get all of them on there.

Wednesday, July 11, 2007

Get over it!

Apparently my time limit for remembering that I had a preemie has ended. Over the past few weeks/months I've been hearing an awful lot of "get over it" said with various degrees of niceness. Last night at my women's Bible Study one of the ladies who is very pregnant had gotten a ride with another class member because she was having contractions every 3-4 minutes (for the last week) and her doctor didn't want her driving. One of the non-mommy members asked if all pregnant women stopped driving at a certain point in their pregnancy and everyone started talking about their past pregnancy experiences. I learned early on that my comments weren't really welcome so I usually keep my mouth shut, but Candi (the pregnant one) specifically asked me if I had to stop driving when I was on bedrest. Before I could answer another mom said "Don't get her started" and I was left to sit in silence once again. I don't think that I harp on my pregnancy & birth experience, although perhaps I'm wrong about this. If anything I tend to keep quiet because my comments just don't fit. I never went into labor or experienced even one contraction. I didn't make it to my childbirth classes, and I never breastfed Noah (although I made a valient effort at pumping). Most of my friends are at the very least tolerent of my different experience, but it seems there are a few who have started a quest to get me to forget it ever happened. I'm not really sure what they hope to accomplish with this, but I find it very hurtful. I don't have an awful lot of true memories from that time in my life (mostly I know what my husband has told me) and so I cling to the few memories that I have. Someday Noah's going to want to know why his baby pictures are so different then everyone else's and it's not going to do anyone any good if I pretend I don't notice the tubes & wires.

Tuesday, July 10, 2007


Noah was a little cranky the day we returned from our trip, but we didn't think too much of it. Then on Sunday evening he had a temperature of 101. We tried to get a doctor's appointment Monday and they were all booked, so today when his fever went up to 102.3 we took him to Primecare, a doctor's office that accepts walk-ins. My initial concern was either an ear infection or a UTI. The doctor examined him and pronounced it viral. I realize that this is likely and pretty standard for a toddler, but I'm used to the thouroughness of our regular doctor. Noah's pulmonologist, neurologist, nephrologist, and otolaryngologist all really don't like it when he has fevers and in the past every fever (even the little 99 ones that he got when teething) warrented a chest x-ray and a urine culture and if it didn't go away in a few days blood tests as well. Is Noah really big, strong, and healthy enough to warrent only a check on the ears and a pat on the head? Is this new doctor underestimating the medical issues of a healthy-looking 2 year old? Only time will tell...

Sunday, July 8, 2007

All's Well That Ends Well

We had a wonderfully successful first vacation. Nobody died, none of our medical devices were confiscated by the TSA, and we had fun to boot.
Our vacation started out in Austin, Texas where we did the family reunion thing for Brian's grandparents 60th anniversary. Noah got to meet all sorts of extended family that he'd never met before, and he had a blast. We also spent a day in San Antonio being tourists at the Alamo and the River Walk which was great. Noah's a little young for most of the Alamo stuff, but he thought the river boats were so cool and he loved seeing all the different plants and flowers that don't grow in our area.
After Texas we flew all the way up to Boston to spend time with my family. We went to the New England Aquarium which Noah loved and mainly just hung out. Grandma is the only person besides Mommy, Daddy, and the feeding therapists who can feed Noah, so Brian and I crammed in a lot of baby-free time while we were there.
It wasn't all good of course. Noah loved swimming in the hotel pool, but some people didn't appreciate him vomiting in there. And I could think of better ways to spend our final day of vacation than with a 2 hour flight delay at JFK, missing luggage, and lots of turbulence. But overall things were a success. We now know that taking Noah on vacation is not only possible but actually a lot of fun. He loves new places and has such a sweet personality that he charmed people everywhere we went. In the end we're exhausted but happy and I think that's not bad for a first family vacation.