The highs and the lows

Smooth sailing would be pretty boring after a while, wouldn't it? Throw in some bumps and hills and hairpin turns, and things stay interesting. I could use a bit of smooth sailing at the moment, but something tells me to fasten my seat belt and hold on for the ride of my life.


On our way to the Outer Banks in NC for our vacation, our youngest had a seizure. I heard a noise that sounded something like she was spitting, but it just wasn't a sound that I had ever heard before. I was deep in discussion with Jason, so I said, "Emily, stop spitting." Emily didn't respond. I don't know how much time elapsed from there--a second, a lifetime, and eternity--but I repeated myself as I turned around to see what she was doing. Her head on resting on her hands which were in her lap. She had a long string of spit coming out of her mouth. I quickly got angry. "Emily! No spitting!" No response. "Emily!" Nothing. "EMILY!" Nothing. I reached back and pushed my fingers against her forehead to make her eyes meet mine. I pulled my hand back and her head flopped down into her lap, limp, with her blue eyes staring widely, unblinking. Undefinable terror stabbed my heart. I can remember screaming something to Jason as I scrambled into the backseat to get her. What happened next was a blur. I don't know if she came around before I had unbuckled her and pulled her into my lap or after I had her up front, screaming for Jason to pull over. Her eyes were still distant, but she was back. She clung to me as I sobbed. After several minutes, she looked at me and asked, "What happened?"

What did happen? I just don't know. We were on the Pennsylvania turnpike close to nothing, further from home than our destination, and for better or worse, we kept going. Our vacation was wonderful. Friends and family, lots of sun and children, rest and relaxation (most of the time, there were 20 children in the house after all). Emily was great. She showed no signs that anything had happened, and I convinced myself it was a fluke thing. We were forty miles from home on the way back when I made Emily mad by skipped past her favorite song on the iPod. She crossed her little arms and pooched out her little lip in protest, and I turned around laughing to tell her that throwing a fit was not going to make me play the "ABC Song" for the fourth time in a row. She stared at me and got stuck--kind of like when a DVD skips--for several seconds. She was not seeing me or anything else. It was horrible to watch this happen right before my eyes. Literally one second she was pouting and the next she was just...gone. Jason happened to catch it in the rearview mirror, and later told me that he immediately thought, "what is going on?" and "is she dead?" Within seconds, each a small eternity, she was back, crying.

The next morning, we were at the pediatrician's office. She was not surprised to hear about the seizure because of Emily's autism diagnosis. She was thorough and kind and told us that we would need to follow-up with her to make a plan for Emily's treatment and to discuss her learning needs. We got the name and number of a neurologist (who had also evaluated our son for other issues) and made an appointment for the following day. Her initial EEG was clear, and now we are waiting on an MRI. Waiting and watching this little girl who keeps me on the edge of my seat. A little girl who has made me fight for every precious moment with her.



***


I had a slip-up with my birth control pills. We were taking a family vacation to the beach, and I knew I was due for my period during that time. I had read somewhere that I could take another week of active pills to keep from getting my period. Uh, no. Instead, I had a hellacious 2 week period full of cramps. Thinking I should step away from the pill for a while, I did not finish that pack. In the meantime, I was reading Taking Charge of Your Fertility. Jason and I had tried for about a year to have another baby after Laura, and nothing happened except my periods got terrible, hence the return to birth control pills. I thought I was experiencing secondary infertility, mainly because it had taken 6 years and failed rounds of injectible fertility meds, AI, and finally a good old fashioned diet to get me pregnant with Alex. After he was born, I dieted again, got pregnant and miscarried, dieted some more, and got pregnant with Laura before he was even 6 months old. At the time I got pregnant with Laura, I was afraid our good luck pregnancy well would dry up, and at the time of my slip-up, I was convinced it had. Reading TCOYF and more dieting convinced me that I could at least permanently stop taking the pill and at least understand when and why I would experience terrible periods. If you've ever read TCOYF, you'll know there is a time of in a woman's cycle when something gross, yet fascinating happens that signals ovulation. Hmmmm, I thought. I'd had never noticed that, but yet there it was. Interesting info, but not valid for me because I just knew I couldn't get pregnant again.

Two weeks later, I was in Macy's trying to buy a shirt. I had lost 40lbs, and I was in Misses--not Plus--sizes finally. None of the shirts fit me. None of them. I looked down and my chest seemed to have grown several sizes overnight. Not painful at least, but huge. Sadly, I walked down to the Plus department with my Misses sized jeans and bought a size 2x shirt. Hmmmm, I thought. The scale said I was down a pound, so where did these boobies come from? Hmmmm, I thought again. Maybe, just maybe, I need to test. So I did. It was...negative? positive? Dunno. Either that was the faintest pink line or I needed to clean my contacts. Too scared to take a digital test only to read the words "not pregnant" again, I waited another day to take another test. (As a side note, why can't the makers of those digital tests make the darned thing say, "I'm sorry, honey. Try again. It will work next time" or for the gals who are hoping for a big fat negative: "Honey, you just dodged a bullet. Step away from the penis." Wouldn't that be a much better way to break the news or slap a girl back to her senses?) New test--still light, but definitely there. A positive! Holy crap! I'm pregnant! I called my GP and went for a urine test at the hospital. A big, beefy smelling guy in the waiting room was patiently holding his cup of pee just like I was. The tech came out and got both. She came back with my results. Not pregnant. Hmmmm, I thought as I looked down at my gigantic hooters and over at the beefy guy. Something, other than that smell that was about to make me hurl, was not right. The next day, another home test confirmed with an even cheerier pink line, that something other than my chest was growing. I went to a walk-in clinic for a blood test. Now that one was positive. I even still have the computer print-out to prove it.


So back to my slip-up. Jason was entering his third, and most difficult year, of medical school. All along, we planned not to have a baby or make a baby or think about having or making a baby during third year. Yet, here I was, pregnant, at the very start of third year. Unlike the first two times when I screamed out the news while I was still on the potty taking the test, I didn't tell my husband. For three whole days. Whether he was freaking out on the inside, I'll never know. He handled the news extremely well. No hiding under the bedcovers or pouting for days like the other two times. He was a trooper. That was good for me because almost immediately, I started having problems. I blacked out in the shower, I blacked out getting dressed, I blacked out pushing Alex and Laura in the stroller. I started spotting and cramping and I began to have the most incredible pain in my side that sent me to the ER after blacking out in the lab before my first blood draw with my new OB. After an excruciating internal ultrasound, the tech wrote that I had a possible ectopic pregnancy and that she could see an intrauterine pregnancy that did not look normal. By dates, I should have been over 8 weeks. By the ultrasound, I was about 5 weeks. The nurse came in to brief me about my miscarriage and give me instructions. She said she was sorry, and left. The doctor came in next and gave me...hope. He said it was either a very early pregnancy, which he thought it was, or it was a miscarriage plus an ectopic. The spotting and pain continued, and my OB had me come in almost daily for bloodwork to monitor me. She called me and wanted me to come in with my husband. She explained that the numbers were increasing in an odd way, and it looked like an ectopic pregnancy. She said that she would need to give me an injection to stop the pregnancy before it ruptured my fallopian tube. Before she did that, she wanted me to have one last blood test. She then sent us home and told us to come back later in the afternoon for the injection. We came back, were put in an exam room, and we waited. And waited. And waited. I was full of dread. After all this time, I was finally pregnant again, only to lose the baby. When the OB finally came in, she was smiling. The bloodwork results put me out of the danger zone, and we were having a baby!


I was still spotting, and later found out that I had lost a twin. I was on and off bedrest for most of the pregnancy for various reasons. My OB had a mental breakdown, and I had to switch practices. I had terrible morning sickness, faintness, and bleeding. Preterm labor started about week 20 or 21, and I was down for the count. I was in and out of triage at the hospital, in pain, sick, and so frightened for this little miracle. I rented a Doppler and listened to her heartbeat every night. It was my only link to sanity some days.


At 34 weeks, I was taken off bedrest. At 37 weeks and 2 days, Emily was given a gentle pitocin shove into the world via the smoothest, most relaxed, pain-free delivery I could have ever dreamed. My new OB cried with me as we gazed at the most beautiful, perfect little girl. She aced her newborn screens and was able to stay with me the whole time we were in the hospital, unlike her brother and sister who were whisked away the minute they were born. We took her home thinking our adventure was over, but like the song says, "We've only just begun."

Emily was a happy baby...as long as I was holding her. She nursed constantly, taking sometimes an hour at a feeding. She was gassy and her poo was mucousy--not at all like the breastfed poo her sister passed. Gas drops helped a little, but when we finally put her on Pepcid, she was like a new baby. At five months, Emily seemed interested in trying food. She liked cereal, but on the third day of trying it, I noticed that she was bloated and irritable. Our beloved pediatrician suggested oatmeal, but that too gave her the same reaction. We decided to hold off on food for a while longer, as our son also had food issues, but Emily stopped gaining weight and growing. At her six month appointment, I can remember crying in the pediatrician's office. Emily was never happy, never let me put her down, and I was falling apart. We left with a new medicine--Axid--that turned Emily around again. She was happy, but she was getting thinner and thinner. By eight months, she was on Pregestimil formula, and my milk supply was gone. At ten months, she got rotavirus and dropped to below 12lbs. Neocate formula saved her life. Here is the link to the blog I created about our Neocate days:

http://for-emily.blogspot.com/2006_05_01_archive.html.

I am forever in debt to the people who scoured the Internet for the old-label Neocate cans, to those who wrote letters to the company, to those who donated formula or bought it off of Ebay for me, and to my friend Lucie who inspired me, encouraged me, and who never lets me forget how special Emily is and how far she has come.


Just shortly after her 2nd birthday, Emily was eating real food! Occasional issues aside, she was better than ever before. Her speech development seemed to have stalled for a while, but she was still ahead of her brother and sister at that age. She was sick with throat infections and rashes almost constantly, but I was willing to endure anything with her because I thought the worst was behind us. As the new school year started, I knew something was not right. Emily qualified for Early On, and we began a new chapter in her book called Autism. I have yet another blog that is mostly about our struggles with our oldest child, Alex, but I explain her diagnosis and school placement issues in that one. Please excuse me, I haven't updated it in quite a while, and there is no rhyme or reason to the entries, except that they are semi-chronological (LOL!):

http://autismexpanding.blogspot.com/

Emily continued to be sick constantly, so in July of this year she had her tonsils and adenoids removed, and her airway scoped. She still had signs of damage from reflux, so she is back on Pepcid. After her recovery, she was in beautiful shape. She was happy and healthy-looking, and no longer sick and gray. As an added bonus, she started talking! In full sentences! Things were looking up!

Still, I watched her constantly, fearful for no good reason. She would pass me sometimes, and I would get a strange thought--she's going to have a seizure. The thought would pass, and I would think I was nuts for thinking it. A few times, I have woken up in the middle of the night with the same thought--she's going to have a seizure. I would check on her and watch her sleep peacefully. The day before our beach trip, I remember having the same thought.

So, what is around the next bend with Miss Emily? I don't know. I do know that it will surprise me at times, scare me at other times, and always make me grateful for the precious moments I have with her. Like no other child, she can get my goat, make me laugh, and melt my heart with her red-headed antics. I love the way she curls up in my lap and say, "I yuv you Ma." I love the way she is attached to her "cuppy" like it is her dearest friend. I love the way she pretends to be a dog, even if that means she is licking the ankle of a fellow Mom in the waiting room at the allergist's office like she did today. (Thankfully that Mom was a good sport and had some hand sanitizer.) I love to wake up in the morning to find that she has snuggled into my bed sometime in the night, even when I wake up in a puddle, again like today. She is a child so full of love, so full of opinions, and so full of mysteries and surprises. Whatever happens, I am so blessed that I have been given possession of this incredible little person.