IN THE BEGINNING
From the moment of conception, Cassie was completely different than my first daughter. I had morning sickness (well, all day sickness) from the first day until the day I delivered. It was a strange set of coincidences that brought us to the ultrasound that would change our lives. I was in the office or the maternity section of the hospital so many times I can hardly remember all the things that got me there; I dialated early & got put on bed rest; got the flu with a fever that wouldn’t come down. I had several ultrasounds in the office, where they were trying out new ultrsound equipment. I had my routine one done in the lab at 16 weeks. Stubborn & awnry as she still is, she would not let us see if she was a boy or girl. We were so anxious to know. I asked the doctor if I could have another ultrasound. She asked if we had any birth defects in the family. When I told her my sister-in-law had clubbed feet, she said she’d schedule me for a level 2 ultrasound and genetic counseling. With the genetic counselor was the first time I remember the words “cleft lip” coming up. We had to draw a family tree. She went through each person asking if they had cleft lip/palate, or any of several other things (which don’t stick in my mind now, of course).
By the time we got to the ultrasound I was so nervous they’d find something wrong, it’s all I could think about. I still wanted to know what the baby was, but that was the LEAST of my concerns going in there. We saw from the very start that she was a girl. We could tell before the tech even told us. I was 32 weeks along, and it was plainly obvious what we were looking at.
The tech went over each part of her body, as they always do but kept going back to her face. I kept thinking, “You’re looking at the wrong end! How are her feet?!” Finally, after what seemed like forever, she spoke, “I’m trying to get a better look at her face; she wont move her hands from in front of it.” I asked her “but how are her feet?” She said they looked fine, but she’s trying to get a better look at her mouth. We were so excited for a minute! Yay, no foot surgeries! Then she said, “You have a family hostory of cleft lip, right? I’m just trying to get a better look, but she just doesn’t want to move her hands.”
Cleft lip? No way, that’s not what we’re here for. No wait, we asked about her feet, it’s her feet, not her face. They’re just being extra cautious because of that silly family tree thing, right? She must’ve been seeing things. I had a million ultrasound pictures at home of my baby’s face, nothing was wrong. (they were profiles)
Then she said she’d get the doctor she MAY have seen something. My mind was racing with confusion. Are we happy or sad here or what? The doctor came back and said he was going to take a look. He said the tech said she MAY have seen a cleft lip. He put that ultrasound back on & moved it around her face awhile while we held our breath, until he said “Looks like the baby has a cleft lip.” Then he showed us on there & I still couldn’t believe it. It could just look like that, right? I was looking RIGHT at it & still was in denial.
He tried to get a look at her palate & told us that there was a good chance her palate was not affected. He could see her bony palate in the front was intact. He said it’s hard to see the soft tissue of the soft palate on ultrasound so (and this was the first of MANY times we heard this) we would just have to wait and see.
CONFUSIONIt was really hard to figure out how to tell everyone. I called everyone who was anxiously awaiting the news and announced, “It’s a girl! But she has a cleft lip.” I said the same thing to my coworkers when they all came in from lunch. No one really knew how to take that news. I got a lot of bewildered responses (much like the one I gave the doctor who told me). I went through a whirlwind of emotions over the next few weeks. I was so excited to meet my new baby girl, but it was overshadowed by the curiousity of what her little face would look like. Would I have to fake it for everyone around me? Or would I truly appreciate the beauty of my child? I kept telling myself (& everyone else kept telling me) that it could be a lot worse. This is no big deal. Her heart is fine, her brain is fine, this is just cosmetic. But my poor little baby would have to go through surgeries; she’d have to go out into the cruel world, where people aren’t always nice. This is her FACE, and she is a GIRL. Did I do something to cause this? Did I do this to my sweet, innocent baby? I smoked while I was pregnant. I tried to quit, but told myself it was okay that I at least cut back A LOT. Better than I did with Cayla. Was it the antibiotic I took before I knew I was pregnant? Was it that night 2 weeks before my pregnancy test that we went out & drank way too many whisky sours? My poor little sweet & innocent baby. Along with the normal anxiousness of the last couple weeks, we met with a cleft palate team. We told them the ultrasound doctor said the baby’s palate appeared fine. I only half paid attention when they explained special bottles & feeding. My baby just has a cleft lip; we don’t need this information.
LABOR DAYCassandra Jane, my Cassie Janie, came into this world swiftly (I was 5cm at 1:00) at 1:44pm, on Sunday, June 4, 2000. She was 7 lbs 6oz and was born completely bald & screaming her head off. To my delite, she was the second of the three most beautiful girls I have ever seen. They took her from me for what seemed like forever. From across the room I heard them say she had a cleft in her soft palate. I again was floored, even the doctor said it was weird how it was her lip & gumline & then skipped most of her hard palate, (only affecting her soft palate & a very small part of her hard palate). But this time it was totally okay to get that news, because I was looking at my little girl. Whatever the problems, we would overcome them.
I tried to nurse her but had no success. It was so sad, I had been so intent on breastfeeding this one after I hadn’t with my first. She could almost get what looked to be a seal if I had her on my left breast, but got nowhere at all on the other. Either way, though I tried for two days, she got no suction at all with those muscles missing from her soft palate & all that open in there. I pumped & fed her with a haberman feeder (special cleft palate bottle), and tried to nurse her.
Poor Cass was so hungry I finally, tearfully, at 4am on the second day, asked the nurse for some formula for my starving baby. She finally stopped crying for the first time since her birth. I pumped for two months and gave her some breastmilk bottles & some formula bottles, until I completely dried up and had no choice but to stop. I’ve since learned that no sleep, food or drink for Mommy, means no milk for baby. There just wasn’t time for taking care of me.
ON WITH OUR LIVESThe next few months were pure insanity, coupled with the pure joy of having an infant. I reluctantly went back to work fulltime when Cassie was 4 weeks old. We desperately needed my medical insurance. I worked 8am-5pm, and Brian worked 12pm-11pm, or 3pm-11pm, depending on the day and our family's abilities to babysit. That was back when we only had one car, so we all got up at 6am to start our day & drive me to work. Brian brought the kids home, got Cayla ready for kindergarten(some days her clothes matched), dropped her off at my mom's to catch the bus. Then he'd drive to my work to leave the car, where his mom picked him up and drove him to work. I'd leave on my lunch break to go see Cassie, but she was usually napping then anyway. Then after work, I'd pick the kids up and bring them home to take care of dinner, bathing, and housework. I'd put them to bed. Then at 11pm, I'd drag the poor sleepy kids out of bed to go pick up Brian. We'd come home, get the kids back to bed by midnight, just to get up with Cassie again shortly.
When I went back to work, she was still eating every 30 minutes or so, 24 hours a day.She would get tired from trying to suck before she could get full. I literally was a sleepwalking zombie that entire first year. Thank God, by about 2 months, she was sleeping an hour or two at a time, once we figured out a good rythm with the haberman feeder.I cried that first night I finally slept for a straight hour; I was so happy.
In the middle of all this, I spent an awful lot of time at work trying to sneek in calls to different people about getting a mortgage and finding a house. Rent was about to go up alot, adn we had NO room for all the baby stuff Cassie had.
SURGERY TIMEWhen Cassie was 3 months old, we moved to an apartment with a short term lease and put all our stuff in storage while waiting to find a house. On October 9,2000, when Cassie was 4 months old, she went in for her first surgery. She had lip repair and myringotomy tubes in her ears. It's sounds funny, but I was so sad that they'd have to change my sweet baby's face. I loved her funny wide smile, just the way it was. I was angry at the rest of the world; it's their fault I had to change my daughter and put her through this surgery. I wanted to keep her just the way she was.
We got up early in the morning, with our poor starving little girl(she wasn't allowed to eat before surgery)and went to A.I.DuPont Children' Hospital, where Dr. Christopher Saunders did her lip repair, and Dr. Riley did her tubes. She and I both cried when I handed her over to be brought back. It was the hardest thing I ever had to do, and when she came back, she'd look like someone else. By the time we got settled in the waiting room, Dr. Riley came out only minutes later to tell us the tubes were done and they were starting her lip. What seemed like forever passed, and the nurse came out to tell us they were finishing up. Dr. Saunders came out shortly after that to tell us she was headed to recovery, she did great, and we could see her soon.
This story still in progress :).....
