From the top

I've had so many things to share that seem to lengthy for the Spectrum Circle Facebook page to have as a wall post. And of course, now that I'm beginning my journey into bloggerland, I suppose I should start from the beginning? I have a 2 year old NT (neurotypical) daughter and a 6 year old son with PDD-NOS, OCD, ADHD and severe mood disorder.  This one is long, but here's the story of our family's beginning.

When I was 24 I became pregnant with twins. It was rough from the very beginning, with all the usual pregnancy thing. I was having fetal ultrasound checks every two weeks, then when I was five months along, we went to the scheduled Monday appointment, and we found out that twin A (Avery Lane) had died. It was later confirmed that this was a result of atypical Twin-to-twin transfusion syndrome, and Avery became my "big baby" very suddenly and without warning, and his little heart could not keep up with all the extra blood and nutrients he was receiving. Generally it goes the other way, where the 'big baby' will be the survivor.

When I found this out, I immediately went into labor. Just. Like. That. Right there in the doctor's office. The office happened to be located in a hospital, but the pregnancy wasn't far enough along for that. They had to break out the big guns. We were sent to St. Vincent's Women's Center, where I was put on Magnesium and terbutaline to stop these hard contractions. The docs were able to get them curbed. I was still able to feel them, but they weren't as intense, and I wasn't dilating anymore (thank GOD!). I was told that I would remain in the hospital until delivery, and that I had to remain pregnant with twins until twin B (Benjamin William) was delivered. I remember asking the doc, "are you seriously going to make me lay here in this bed for four more months?" He looked at me and said that it would be closer to 4 or 5 days. WHAT? It was too soon. I may have been preparing to be a first time mom, but I knew that 5 months gestation was WAY too early.

The next day, they wheeled me down to the NICU and showed me all the preemie babies. Their motive was to show me that they had the best facility to accomodate all sorts of needs. What actually happened was that I just got really sad, seeing all these tiny tiny babies and their parents, not allowed to touch them. When I got back to my room, they told me that they would do all they could for my baby when it was time, but not to expect to be able to hold him right away if he survives the birth. A pediatric neurologist tried to explain to me that babies born this soon tend to scream when touched, that the slightest breeze or touch to his skin would be excruciating and that he wouldn't likey ever speak or walk.

Well, the four days passed, and I was given a surprise. Instead of heading to the OR to deliver, I was given a terbutaline pump in my leg and sent home. WOW.

So I went home on bed rest, and kept up with the ultrasounds, only now they were EVERY Monday. This continued for about two months, still having about 6 contractions an hour. I got really good at changing the needle, med container and tubing for the terbutaline pump in my leg. Then when I was seven months pregnant, that familiar pain came back. Intense and regular, every 4 minutes. I called the company that watched the monitor that was strapped to my belly 24/7, and they agreed that it was time to go. I called the doctor at around 3am, and we were off. I layed on the bed, changed into the gown, and they determined that Benjamin was in distress and we went straight into the OR. No time to wait for a contraction to stop so I could get my spinal block, oh no.

They had him out within seconds, but wouldn't let me see him. Instead they swaddled Avery and gave him to me. They wouldn't let us get pictures of Benjamin right away, and I didn't hear him cry. The first words when the doctor pulls the baby out are normally "it's a boy! Look Mom and Dad!" Not here. I'll never forget what I heard. "Well THAT'S not a good way to be born." Ohmygosh, what?

Turns out the cord was around his neck, and he had to be revived twice. It was three days before I could hold him for the first time, and I had to pump instead of nursing him. He spend a day under the O2 hood, and had a feeding tube for what seemed like FOREVER. Thankfully though, he was 3 lb 6 oz, which gave him a fighting chance.

To wrap this up, I'll just say that after our stay in the hospital, we brought him home at exactly 4 pounds. Our little miracle, who did NOT scream when touched. Now he just yells a lot for other reasons ;) He looked like a little old man. <3

BW was a week old in this shot.

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