of my new baby Ethan and some confessions about my pregnancy and his birth.
Today Ethan is exactly 3 weeks old. I love him incredibly, but feel very protective of his health. In fact, unlike Emmett, I protect Ethan like he's a fragile doll. I won't take him outside unless i really have to go somewhere. I am observing (the best I can) the 40 day moratorium of the Orthodox Faith. I feed him whenever he wants. There's a lot that happened with this child, and only a few of you know.
I never wrote about this in my blog, but the last six months of my pregnancy was ruined by something called a Triple Screen Test. It's an optional test but it's presented as routine. They give it because it can be an indicator if there's something wrong with your baby. It tests chemical levels for things like Spina Biffida and Downs Syndrome and a bunch of other things. I didn't take the test with Emmett because I knew I wouldn't get an abortion, but with this baby, I didn't even realize that it was *that* test. I just did everything they said.
About month 4 of my pregnancy, my doctor called to tell me that there was some concern. I'd scored 1 in 91 chance that my baby could be born with Downs Syndrome. The regular odds for my age were 1 in 283. He said it wasn't something to freak out about, but it was something to note. He arranged for me to have a full body ultrascan which would determine the baby's sex and would give us more information about him. The bottom line is that I scored a "positive" because teh chemicals in my body showed a higher chance of downs syndrome.
The full body scan showed no signs of anything, but still, I could not rest about it. I could have opted for an Amnio (which would tell for sure), but it's an invasive prodcedure with a one in 100 chance of hurting the baby or miscarriage. How unfair! 1 in 91 for downsyndrome and to find out, almost the same odds of killing or hurting my baby. I was totally stuck. It is the most unfair position to put a mother in. How awful would i feel getting the amniocentesis if it ended up hurting him? I couldn't do it knowing those odds.
For six months, I was very, very depressed about all of this. When I found about about the test, I started smoking again and for the rest of my pregnancy, never fully gave up, which made me more depressed. I would smoke for a week, quit for a week, smoke a little, quit for 2 days...I was always battling it. My depression led me to want to smoke. When I smoked I got more depressed because I felt like I was hurting my baby. It was a terrible cycle. And I just lived with it. Everytime I had a doctor's appointment I talked about it. There was nothing anyone could say to me. I couldn't accept it. I couldn't deal with it. I was preparing for the worst. A baby born with downs syndrome and damaged from smoking. So what I did was not deal with it. I tried to not be pregnant in a weird way. I tried to absorb myself in other things. There was only a few days (one of which I blogged about) that I felt excited for my baby to be born. The rest of the time, i was arranging the pieces of why it would make sense for God to give me a Downs Syndrome child (make Mike and I closer...as punishment...etc.)
I was technically in labor for two days, i gues, but we didn't know it. On the day he was born, one of the nurses who had seen me previously at an appointment was on duty. Months before I told her about the test and how scared I was. She told me that the same thing happened to her, and I saw pain in her eyes as she recounted her hellish six months. In the end her baby was fine. She couldn't say anything reassuring to me because she knew that nothing she could say would help.
When Ethan was born, no one told us if he was okay. They just whisked him out of my arms and took him over to clean him up. Mike and I were calling "Is he okay" over and over, and that angel nurse came running over to me and said "I remember you from before. Your baby is fine. He's perfect." I cried out six months of worry at that moment, while I was waiting for my baby to come back to me. It was only two weeks before I had Ethan that I was ready to accept that he might be born with a genetic disease, and that acceptance was thanks to my friend Beth Haidle (subscribe to her
zine).
We left the recovery room one day after I had him. I couldn't wait to get him home and Emmett was having a preschool play. He was a leaf. Mike's parents (and their big fat divorce-a whole other presence), my parents and Mike's mother's friend all came down to visit the baby and to see Emmett in the play.
After the play, Ethan started shaking in a seizure like way. These violent jolts and jerks that were patterned. Both his hands and feet would punch violently, over and over again, and I could barely wake him up. My mother and Mike's mother were both like "Call the doctor right now. We've never seen anything like this". I grabbed my baby, ran upstairs, Mike called the doctor and I was bawling uncontrollably crying trying to wake him up. He kept jerking...he kept having these seizures. The doctor talked to me and said that this didn't sound normal and to go to CHOP (Children's Hospital of Pennsylvania) immediately. We did. I was uncontrollable in the car. Ethan was doing it more. I was in the back acting like the world was ending. It was for me.
I spent 6 months fearing my child would have Downs Syndrome, and after the intense flood of relief, I was suddenly fearing my child had something even more serious. My reaction was devastation and fear.
We got to CHOP, they took us in immediately. I tried to be composed, but wasn't. WHILE THEY WERE LOOKING AT HIM, he began doing it. They said "Oh, but if you touch his hands, he'll stop, right" and they did it and he didn't stop. "Oh, but he's easy to awaken, right?" and he wasn't. They became very concerned and called the Neurology team. I could see and hear them meeting with the other doctors. They took his blood, they tried to put a catheter in him. HE WAS ONLY TWO DAYS OLD. So in addition to worrying about him, I felt helpless as a mother. All he wanted was peace and to sleep, and the second day of his life was cold, filled with people poking and prodding him and pain (needles).
About 4 of the neurologists came in. They looked at Ethan and talked to us for about 15 minutes. At the end, the lead neurologist (very Hillary Clinton like) said that she could not be sure, but she felt it was something called Myclonic Infant Syndrome, and that it was normal. I started crying with joy. But, she said, that she needed to talk with the other team of physicians to see if there were any additional actions they wanted to take.
For 20 long minutes we waited. I could see the two teams talking outside of my door. And finally, one of the residents came in and explained that the two teams couldn't agree and they'd like us to stay overnight for monitoring. We were devastated, but happy to think about a nicer spot for our baby.
They moved us up to a horrible, horrible place. The crib was in a cage and it was a shared room with an epileptic 4 year old girl that spoke another language and seemed to have torets. She was loud and rammy. There was no place for us to sleep, except for a chair. I just wanted to take my baby home. They were asking me questions and I just burst into tears...EVERY instinct I had as a mother was being challenged. Every fear I had was coming true. And still, my sweet baby, for every moment I held him, was totally at peace. I was the only safe spot for him, but I could tell that there was a fracture in his trust. That, even at 2 days old, my voice was no longer synonymous with total safety; only with a few moments of safety.
Eventually, we got moved to a better location and I got into the crib with Ethan and stayed with him the entire time. He was hooked up to all these monitors. They drew blood several times. Eventually, all these wires were attached to his head...And if there is only one good thing from all of this, it's that I bonded with my baby very, very fast. He knew me and I knew him by the end of that 24 hours, because I went through everything with him.
The next day they told us that they couldn't be sure, but based on their tests everything seemed normal. They'd just wanted to be sure. I was relieved, again crying with complete exhaustion. I can't tell you what this whole thing has been like
.. I can only imagine if something was wrong with my child.
Tomorrow, I'll tell you another secret and something that I've been struggling with for 3 weeks. It's too much to say it all now.
