He was supposed to start his new 3-5 room today since it's his birthday, but at about 11pm last night he woke up crying and threw up monumental amounts on his bed. He was sick this past Saturday, but I thought we were in the clear. I think it's his acid reflux, though, because he woke up asking for food and besides being a little sleepy is acting okay. I stopped giving him his medicine a while back because it gave him really yucky diapers. But obviously he still needs it, and probably always will. (FX kids often have reflux. Last time putting him on meds helped a lot at bedtime.) We have his 3 year checkup on Monday, so I'm sure we'll be getting a prescription.
A few people asked for it, and I didn't have a blog when I was pregnant, so here goes:
It was my senior year of college. I was looking for stability. Unfortunately for me, I sought it out from the most unstable person on earth--Punkin's dad. We dated for about 5 months. Even as I write this, it sounds so ridiculous. Five months?? He didn't even go to my school. He was a friend of a friend and lived in another state. So we dated, long distance, for a few months before we determined that we were obviously meant to be together forever.
It was May of my senior year in college. I was "late." The previous month had sent me to the hospital for some serious pain in my midsection which turned out to be a cyst on my ovary. I was still waiting for the cyst to go away, and I still had a little pain. Add that into being late, and I thought something was wrong. I called the dreaded college health center. The same health center that had a reputation for suspecting everyone of being pregnant, even when they came in for ankle pain or a sinus infection. This same center didn't see a need for a test. ??? I called my doctor at home, who was concerned about a tubular pregnancy. So on a quiet day during my last little stretch of college freedom, I went into my roommates room to rouse one of them to accompany me to the health center for a test. (They weren't really my roommates anymore, they lived down the hall, but they had been my roommates the year previous and they will always be labeled my roommates. One of those situations where we didn't need to knock or ask permission to do things anymore.) Sarah got up and went with me. The health center nurse rather reluctantly obliged to test me and light-heartedly asked me to pee on the stick. A few minutes later, she returned with stick in hand, glanced down, and froze. "It's positive." She immediately began apologizing for not taking me seriously and even called later that night to reapologize and make sure I was okay. Anyway, after Sarah and I stared at each other for a while, we left hand-in-hand to rouse Laura (aka: Lion) and tell her the news. I phoned my doctor to tell her the results, and she insisted I go to the hospital to make sure the pregnancy wasn't tubular.
The hospital was a 30-minute drive, so we had plenty of time to say our "what ifs" and call Punkin's dad. Now, I know some people are cut out for dealing with stressful/emergency situations and some are not as gifted in this particular area, but I would have to say Punkin's father takes the cake. He called the emergency room EIGHT times during my brief visit, after our previous five conversations on my cell phone. I eventually had to give them permission to tell him I wouldn't take any more calls. The emergency room doctor didn't do much; I basically paid $100 to find out that I was pregnant, which wasn't the best deal considering I already knew that. In the meantime, I had called my parents to tell them where I was and, gulp, why. It's a good thing they had that hour drive to calm down before I met them at a restaurant and confirmed the news. My dad said congratulations and ordered a beer; my mom sighed and asked for a margarita. (Here I was with the perfect excuse to join them and I couldn't.) But they were very gracious and forgiving. I'm sure they were most upset that I had lied to them about my lifestyle choices. I got back to school and made an appointment the next day to see my doctor at home and have the ultrasound I should have gotten in the ER. I think I fell in love the minute I saw his heart thumping away in black and white. I even got a second ultrasound a week later to rule out twins (phew!).
Punkin's dad and I started fighting more and more. And as I settled into the realization that he was in no way ready to be a father, I admitted that he was also not ready to be a husband. I was visiting my sister for a few days when I finally called off the engagement. It was the first week of July. I was almost 3 months along and hadn't stopped puking since the beginning of month two. I lost at least 15 pounds before I finally starting gaining. Blech. My body felt awful, but my heart felt good. My sister said the relief was evident, and she kept me busy painting pottery, going to movies, and playing putt-putt. During this time, Punkin's dad started harassing my family and friends with phone calls and e-mails. Funny how someone who manages to isolate you from your friends and family turns to them in an effort to win you back. Not so much a good strategy. Many thanks to everyone who stuck it out.
Once I stopped barfing and started gaining weight, life was pretty good. Punkin started moving and grooving inside me; my belly grew bigger every week. I worked at a grocery store. Very glamorous job. When a pregnant woman ventures into public, she is assaulted with looks, comments, and questions. When a pregnant woman is ringing up groceries, she is bombarded. "How far along are you?" "You're so skinny!" "Boy or girl?" "What will you name it?" "When I was pregnant....."
I'd say the best comment was from a young man. He noticed that there were quite a few pregnant women working that day. "Yes," I said, "I know of four people besides myself." "Wow," he replied, "I know what you guys do in your spare time." Nice.
I had asked a few times about being tested for Fragile X. I went to a group practice and had to see all of the different doctors during my pregnancy. One of them told me, "Well, that sort of thing is something we usually worry about in kindergarten if a child is showing delays." He had no idea. But once I had the ultrasound that told me Punkin was a boy, my mom and I were more serious than ever about being tested. My main doctor at the group, also a member of our church, hooked me up with the right people.
I knew that my mom and grandpa were carriers, and I wanted to be fully prepared. I had been tested in high school, but my mom was always suspicious of the results because they were very vague. We knew that there were different kinds of tests and that one was much more accurate than the other. Turns out my mom was very right. I have a full mutation of fragile x (over 250 repeats) and the gene is completely methylated (turned off). This meant I needed to have my baby tested as soon as possible after he was born and find a pediatrician who knew something about disabilities.
I also had a fainting issue. Very Scarlet O'Hara. Just a result of really low blood pressure, I guess. Then I had a gall bladder issue. I thought I was dying. My mom thought I was overreacting, because, let's face it, I overreact when it comes to my body. Well, one night I was pretty sure I was having a heart attack along with contractions that felt much stronger than the Braxton Hicks that started around 22 weeks. After I got sick a few times, my mom drove me to the hospital. The pain was IN-TENSE. An ultrasound and an exam revealed that I was not in labor, but that my body was rejecting the french fries and brownie sundae I had indulged in earlier that night. I have to share this next part with you regardless of how much it grosses you out. The way I see it, if I had to experience it, then you have to hear about it. I got sick in the hospital. It was green. Like if you blended up grass. (Hot, right? What? You want my number, right?)
Well, the very nice surgeon said he didn't want to operate on a preggo lady unless he had to, so they monitored me overnight and sent me home on a low-fat, bland diet. Now it's a good thing I was eight months along because I don't think I could have gone any longer than four weeks without a Hostess cupcake.
This is when the insane itching began. A crazy, unexplained internal itch from my toes to the top of my head. My face itched. My hands itched. The bottoms of my feet. And there seemed to be no apparent reason. I woke up with bruises on my arms from scratching in my sleep. That is when I hated being pregnant.
So the big due date finally came. I'd been having pre labor for about a week, so I was starting to dilate and thin out. A week later and still no baby. My doctor said she would induce first thing Monday morning (it was Friday). At about midnight Sunday I realized that the pre labor was turning into real labor. At 5am I woke up my mom and my sister, and we called my doctor. After I was admitted, they ended up giving me pottossin to speed things up. I insisted we watch The Price is Right. I'm taking a bit of artistic liberty when I say my doctor broke my water during Bob Barker's Showcase Showdown, but I do know it was sometime during the ten o'clock hour. I wasn't progressing very quickly at all (only 2cm), so no one bothered to check me until two hours later when I asked for medication around 12:30pm. At this point the nurse was shocked to discover I was over 7cm. This meant happy meds! Hooray! But before the nurse could get the doctor and get permission for the meds and get the meds from the pharmacy and bring them back, I looked at my mom and told her I was ready to push. He was born at 12:53pm. Four pushes, but no happy meds.
9lbs 1oz and 21 inches long. So much for the little baby all of those grocery store customers insisted I was carrying. Two weeks after I had him, I went in for gall bladder surgery. I weighed 32 pounds less than before I got pregnant. My body has been on a roller coaster for over three years now. (12, 6, 4, 6, 8) But that night I had the most restful nights sleep I've had my entire adult life. I remember a few things from the day of my surgery: my blood pressure was about 54/90 and every time I was almost asleep the heart machine would beep because my heart rate dropped to 40, the operating room looked a lot like ER, my sister brought me a Charleston Chew, and I had the best phone conversation with Lion ever.
The day after Punkin was born, we met a more loving, patient pediatrician than I could have imagined. I called his office after I had my genetic testing and found out that not only did he have other patients with FX, but that he had even attended a conference with them. On his one month birthday, he called me with the news. I was living with my parents at the time. We cried.
But even to this day my biggest fear is not having a child with FX or how to handle his behaviors and his needs, even though I struggle with those things every day. My worst fear is what happens when I'm gone; that's what keeps me working with him even when he hits and kicks me. That's what makes me open my mouth when I am afraid to ask for help or disagree with a professional. Because someday I won't be here, and he needs to know how to help himself. And now I think I need to move on because there are tears.
So that's what I was doing three years ago. THREE YEARS. In the meantime we have moved into our own apartment and made some truly significant gains. In the past year, Punkin has:
- Stopped blowing his nose in his bread at dinner. Although this can only be counted as a half gain because he has stopped blowing his nose altogether.
- Started speaking in one and two word phrases, relying less and less on pictures and sign language.
- Learned how to sit on the potty, dress, and undress.
- Learned how to take off his diaper and poop on the carpet.
- Become less defensive about touching grass and not defensive at all about touching the snow.
- Learned how to draw a circle and a vertical line with a crayon.
- Learned how to stack small objects, put beads into a container, and begin to put together puzzles.
- Learned how to express his wants, likes, dislikes,and began to learn how to make a choice.
- Started to learn how to catch a ball.
- Learned how to pray before meals and bedtime.
- Learned how to delay bedtime by asking for water or to go potty.
- Learned my name, his name and age, and the names of other important people in his life.
- Learned his basic colors and begun to learn his shapes.
- Learned how to say, "I love you" back.
We've come a long way, baby! Happy Birthday! We've had a lot of help along the way, and I'm warning you that we will need more. =)