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|Thu, 10-04-2012 - 11:57pm|
So, I'd been getting ultrasounds every two weeks to monitor my cervical length and Aislynn's growth. At 31.5w everything looked great. At 33.5w things were very different. My perinatologist sat me down in a conference room and proceded with the hard job of telling me that Aislynn had a severe bleed in the left ventricle of her brain. It caused a midline shift and her right ventricle was also enlarged. There was also a low amount of amniotic fluid (indicates kidney issue) and her placenta had thickened (calcification of the placenta means it's not functioning well if at all). She offered me the opportunity to cut the cerclage because time was an issue as her head size was increasing exponentially and it frightened her how fast this bleed was increasing in size. She said that if we removed the cerclage and let things happen there was a good chance (about 40%) that she'd die in the delivery. She then offered further diagnostics by going to OHSU for a fetal MRI (the gold standard of testing for fetal anomalies).
Needless to say I felt like my heart was being ripped out. The other bad thing was that my husband was on a cruise with his dad and wasn't due back for two days, and this was the day after my 37th birthday. I opted to get as much infomation as possible, so I went to OHSU, keeping the cerclage in and getting further tests. Hoping that it was all a problem with their machine.
OHSU is our research hospital, one of the best teaching hospitals in the country, also housing Doernbecher Children's Hospitla, a pioneer in childhood issue research. I had a second ultrasound there, then the MRI the following morning. I met with nine doctors in all including the hospital ethicist (all hospitals have them in Oregon due to the assisted suicide law here). The pediatric neuroradiologist (I had no idea there was such a thing, very impressive) was waiting to sit with me right after the test, she showed me the scans and I was terrified. She said, "This is not a bleed, on the u/s it looks like one, but this is a choroid plexus tumor, there are two kinds, a papilloma (benign) and a carcinoma (cancerous). Now, your doctor said it wasn't there two weeks ago, and now there's this (the scan looked like Europe took up almost 2/3 of the inside of her cranium), it's grown so fast I would wager that it's a carcinoma. These are so rare, I've seen it twice in 10 years of practice.
I just lost it. I wanted her to be able to be fixed, but when I saw this and it was explained how it was seated, in the lower part of her ventricle, it was explained that even with surgery and treatment, she would be blind, deaf and so severely handicapped she would have no quality of life. I was devastated. I was almost 34w pregnant and she was still kicking and moving around. I became so angry. Everyone knew my history and all they could say was I'm sorry.
It took 13 years and 6 losses to get the twins, this was the first spontaneous pregnancy to go beyond 9w.
She was born at 4:40am September 26th, exactly two weeks before her brother and sister turn one. She was 5lbs 5oz and 18.5in after a 2 hour labor. We confirmed at 12pm the day before that she had passed away. She was so beautiful with a head of red hair and looking just like Isabel.
After several phone calls, there was an OB GYN who expressed an interest in her brain for study, I was fine with this, because I'm a nurse and because when I tried to research this, there was one paper on a fetus with a 4mm papilloma who survived, but my baby's tumor grew to 8cmx6cmx5cm sometime in a two week period. Luckily I didn't have to endure the recovery of a c-section because her head was still small enough to come through.
OHSU performed the autopsy and we will have that report in 4-5w, we will also have her ashes next week sometime as they are cremating her for us free of charge.
Now, we have to wait at least 9 months before I can try again as my cervix needs a vacation. The twins turn one next week and I'm thankful I have them as a distraction. It's been harrowing, I never thought this would ever happen to me. My DH has been the most supportive man I could hope for, he's let me have my bad days (yesterday was a VERY bad day for me as our neice announced what her healthy twins were, granted I'm happy for her, but my SIL hasn't been the most tactful, she had to throw in that she didn't want to tell her daughter what was happening because of her pregnancy, nice of her to make sure I knew the conversation wasn't about me, she even slid in there that their u/s on the same day showed her babies spooning). I wanted to jump off a bridge.
I have drugs that are helping, both with the physical and emotional pain, I'm going to focus on the kids, school in December and weight loss. We've decided not to tell anyone the next time I get pregnant for a long time. It was hard for me to put her things away, my MIL returned her swing for me and I returned her car seat yesterday. I'm trying to focus on the idea that maybe she was sent to me so that someone could learn something, it's the only thing keeping me sane right now, because why should the ball slide into my roulette slot? I've even lost a friend over this because we had the option to go out of state and end the pregnancy to keep her from suffering, luckily she passed before we had to do that, but my friend thought I should do everything to keep her living. I couldn't fathom the kind of existence she would have because it wouldn't be a life.
I love my daughter as much as my living children, she will be cherished, remembered for the beauty she was and for the spirit that will always be with us. I was able to spend the day with her and there will be pictures to remember her and teach her brother and sister and any future siblings. They said this doesn't have a genetic component, but I know that I can never enjoy or get excited about another pregnancy, I will be watching the weeks go by and I was told by my perinatologist that I will be watched even more closely next time.
I apologize for the length, I just hate this so much. It was hard leaving that hospital empty handed when I was so close to holding my dream (that's what Aislynn means) I guess it fits well right?