I was 28 years old when I became pregnant with my daughter. I was fit, healthy and it never occurred to me that anything could go wrong or that I would have anything less than a healthy child and uneventful pregnancy.
That is until Mid May of 2000 when I went in for a routine ultrasound. My entire family was with me to find out if it was a boy or a girl (although I already knew it was a girl with every fiber of my being). The mood was excited and festive. The tech was taking pictures of my growing belly and everyone around me was ooh-ing over the little fingers and toes magically appearing on the screen. That was my daughter! I was seeing her for the first time and it was magical.
Slowly the tech stopped talking and the air in the room begin to grow cold. Something was wrong. She excused herself. I lay on the table staring at the ceiling KNOWING that whatever came next was going to break my world apart. A few moments later a Dr. came in and introduced herself as a perinatologist (I didn't know what that was). She was kind, but brisk as she asked me to sign the papers to do an amnio. I asked her when I should schedule and she paused for a moment then said," No dear- we need to do it NOW. I am going to do it right now. We don't have time to wait". I watched the needle be inserted and the fluid being removed and although I knew I should feel pain I felt nothing at all except the cold that comes from deep fear.
When it was done my O.B. came in and together the 2 of them explained to me that this new dr- this specialist for very high risk pregnancies- would now be taking care of me. My daughter was sick. She had a condition called fetal hydrops which was causing fluid to collect in her body and lungs.
"I was lucky" they said, "because I was at UC Davis and they had one of the best NICU'S available”.
My mother said,"but why would we need that?” My 2 dr's -the old and the new- glanced at each other for the briefest of seconds before saying the thing I was most afraid of.
"You must understand. This baby WILL come early. You are only 22 weeks along. There is a very good chance that you will have her in the next 2 weeks. The likelihood is that she will not survive. But if you are willing to fight for her, so will we."
In one hour, and with 6 sentences, everything I knew about myself and my world shattered. I was certain that this was my fault- after all I was her mother and I had failed to protect her. While I grieved and learned to cope with my new reality, the staff at UCD rallied around me and worked on a plan. What we were dealing with was rare. It had a 1% survival rate, but as my dr often reminded me," 1% was still SOMETHING". Specialists were brought in and consulted. Every day I was brought to the hospital to be monitored before being sent back with strict orders to move as little possible. The days went by, and although I did indeed go into labor at about 24 weeks (just as they predicted), we were able to control it.
At 33 weeks to the day my daughter was born via emergency c-section. I had been in "active but non progressive labor" for 9 weeks by that time. The staff joked that I had set a new record. I heard her mewl like a kitten before she disappeared to the NICU, where she would spend the next 13 weeks battling for her place in this world. During those endless hours of sitting next to her incubator watching the machines do her breathing for her, I watched other parents keep the same lonely vigil. I celebrated the small steps forward right alongside them; and I grieved with them when their children slipped away. We were all now bound together in a club no one wanted to join.
Earlier I mentioned that the Dr. had said I was "lucky" on that first day, but it was a very long time before I truly came to realize what she meant. I was at a level 1 trauma hospital with every specialist imaginable there for the sole purpose of giving my daughter and me the best possible chance of survival. The hydrops had been caught early and we were able to monitor and control the situation because I had excellent prenatal care. If I had been at almost any other hospital the outcome would have been very different.
As for my daughter- despite nearly impossible odds and a thousand setbacks and frustrations, she survived and has even thrived.
I named her Zoe. In Greek it means the divine life- which seemed like the perfect choice. It isn’t perfect and it isn’t easy. She has to take meds daily and needs oxygen support because her lungs are so weak that even small outings exhaust her. We have spent months at a time at UCD children’s hospital. She has been on life support more times than I can count and I have been told to “prepare myself” more times than seems possible. She has had dozens of surgeries (including 6 excruciating femur surgeries and multiple rod placements). She has endured so much pain and so many disappointments (like getting all the way to Disneyland only to get sick that night and be told by the doctors that she was too fragile to go into the park which she could see from the hotel window).
Through it all she has maintained the ability to be kind, to laugh, to find joy in the smallest of things and to see the very best in those around her. She literally makes it impossible to NOT be a better person around her because she sees you so clearly, but with such love and acceptance.
Zoe is now 14 years old and proves every day what her Dr. said in the very beginning,"1% means something....it means there is hope.”
To all of you who donated in the past and who will do so in the future- THANK YOU.
Zoe needs your help for very specific things. The first is a portable oxygen concentrator. This will help Zoe to be able to fly. Which in itself is an excellent adventure. She also needs compression garments that are made for Zoe. Zoe is a growing girl and compression garments need to be replaced every three months. Once Zoe has the Portable Oxygen Concentrator and the Compression Garments Zoe can go a truly Excellent Adventure - A Trip to Disney Land.
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