In the Beginning... Decimated Dreams

My beloved daughter, Center of my Universe, Light of my Life, my sweet baby Ellie, is now three years old. She is a three year old trapped in the body of a five year old, that functions like the body of a two year old, with the intellectual development of a four year old, and the emotional development of a two year old. Ellie has Spastic Quadriplegic Cerebral Palsy and Autism Spectrum Disorder, strongly suspected to be (but not yet confirmed) Asperger's Syndrome. The CP was caused by the circumstances of her birth, and the ASD may have been as well. It is possible that she would have had the ASD with or without the CP, and in some ways the ASD may be as much a gift as a curse. Depending on how it affects her as she matures, maybe (hopefully) she won't care about her physical differences or be affected by the opinions of her peers. I'm trying to find a silver lining here.

My great fear right now, considering the probable genetic link for the ASD, is that our second-born, Marty, will have it as well. I am currently four months pregnant with Marty, and the possibilities are constantly on my mind. Marty will be born by cesarean - I'm not taking any chances on the birth going wrong again. Ellie will spend a lifetime suffering for my inexperience, because I didn't insist on a c-section after being in hard, induced labor for 24 hours - because I didn't beg for someone to listen to me and believe that I KNEW something was wrong! I won't make that mistake again.

I was pre-eclampsic with Ellie, and she was induced three weeks before her due date. No one knew that she was "sunny-side up" in the birth canal. I pushed for six hours, and it did no good. Every time I pushed, it only bent her little head back - she couldn't move down the birth canal. I KNEW she wasn't moving down, I did beg for them to use the vacuum to help her. Her poor little head was so badly molded by that point that the vacuum couldn't suction on. That's when they finally realized she was in the wrong position, but she was too far down to change plans. The doctor had to push her back in and turn her over - THEN she moved down the birth canal. When her head emerged, she had the cord wrapped twice around her neck, so they pushed her back in and untangled the cord.

When she finally came out, she was unconscious. She wasn't breathing. The doctor put her on my belly, purple and still. She was so dark, and so still. He announced she was a girl (we hadn't known until that moment), almost as an afterthought because he was so worried about her. They snatched her off my tummy and took her to the corner, to a waiting bassinet, and started working on her to make her breathe. He asked what her name was. I shouted her name - at least, I think I shouted - and he started talking to her by name as he worked to breathe for her with "the bag." I heard the faintest mewling whimper as they whisked her away to NICU.

Then I started bleeding. The placenta hadn't come out. Instead, it ripped in two. There wasn't time for them to get tools from the ER, I would have bled to death in minutes. The doctor had to reach up into my womb with his hand, grab the rest of the placenta, and rip it out. I had to have a blood transfusion - two pints - to bring me BACK to anemic. I was not allowed to get out of bed, and my newborn daughter was in dire straits in NICU - a world away from me. I laid in the hospital bed and prepared for them to come and tell me she was gone, and prayed that she wouldn't have to go alone.

Late that evening I was allowed to be wheeled to NICU to see my Ellie. They had spent over an hour breathing for her before she could breathe on her own, and her little, misshapen head was stuck in what they call the "hatbox" - a clear, circular container with a little cutout for the baby's neck - in pure oxygen. She had an IV running into her belly button, a "central line." She was bright pink, but covered in vicious dark bruises from the delivery. She was crying, and I realized it was her newborn voice I had been listening to for hours. She couldn't stand to have her head touched. She was in so much pain that the nurses called the pediatrician on call to request Tylenol for my less-than-24-hours-old baby. He said no. I couldn't hold her or even stand up out of my chair. Stretching, I could barely kiss one of her little feet, which is what I did. I stroked her back and kissed her foot while she cried, and I cried. The nurses insisted that I go back to bed and rest, so I was wheeled back to my room, where I cried myself to sleep alone listening to her sobs from the other side of the ward.

The next day, I was wheeled back to NICU and allowed to hold her. She was out of the hatbox, but still had the IV. She had stopped crying but still was in pain from the bruising and head molding. No little newborn bonnets for her! She couldn't' stand hats until she was two. She still doesn't like to have her head or hair messed with. I held her as long as they would let me before taking me back to my room.

That evening, they did remove the central line and brought her to me in my room. I wanted to hold her and keep her to myself, but there was an endless stream of family who showed up as soon as they heard she was out of NICU. I sat in my bed and leaked tears while everyone else passed her around, when I wanted to be selfish and hold her close. I wanted to keep her in my room that night, but Husband, concerned about my well-being, insisted that I send her back to the nursery. I spent the night slipping out of bed and going back and forth between the room and the nursery, spending as much time as I could manage up before collapsing with the anemia.

The next day, I tried to breast feed her, but she wouldn't latch on. She'd already lost 6 ounces of weight, so I tried to express milk into a bottle and feed her that way - she literally spat the milk out. She was a bottle baby, by her own choice. I felt like a total failure as a mother, and she was barely three days old. I kept her with me in the room all of that day, except when they came and took her for tests. My husband, worried that keeping her in the room would wear me out, tried to make me send her back to the nursery again that night, but I said no and kept her in the room. I was not going to be separated from her again.

We stayed in the hospital for six days, which doesn't sound long, but is actually 3-6 times longer than the average stay. Taking her home was terrifying and wonderful. I was still severely anemic, and would be for the next two months.

So that was how my Ellie came into the world. It wasn't what you see on A Baby Story on TLC, or what they show you in the birthing videos in your prenatal classes. It wasn't the glorious and beautiful bonding experience your friends crow about when discussing their babies. It was frightening, painful, literally life-threatening, and left my daughter disabled for life. It wasn't what I'd dreamed of, what I'd planned and hoped for, and the only part of my birth plan that actually happened was having Bach playing in the background.

The injuries Ellie suffered that day will never heal. She will always struggle with her body. She will never be able to dance, march in band, run races, play sports, learn martial arts, or walk without pain. These are the gifts bestowed by the CP, outside of the social and emotional blocks awarded by the ASD. These were the first dreams to crumble. ASD stole the rest.