Hi, my name is Amber. I decided to start a blog for myself and for other families who are dealing with Hydrocephalus.
I guess I will start from the beginning. When I was 20 weeks pregnant (5 Months), I went in for a routine ultrasound and to find out what we were having. I already knew in my heart that she was a girl, so it was no surprise when the ultra sound tech told me I was having a baby girl. The tech didn't really say much, but I thought this was normal, this was my first baby. I asked The tech if everything looked OK and she said there was some water on her brain. I can still remember to this day the huge drop in my stomach. I was so scared and just started crying. I asked if she was OK and the tech told me she didn't know what this meant and that I would have to talk with the Doctor. After they were done with the ultrasound I was sent back to the waiting room. My mom was sitting there smiling and asked what the sex was. I told her it was a girl and that there was something wrong. My mom tried to keep me staying positive, she told me we had no reason to worry yet, it could be nothing. We were called back to see the doctor and he told me he didn't know what this was. He told me to stay positive and not freak out quite yet. I was given a referral to the Multi-care maternal fetal medicine. He told me that they would be expecting me to call the next day and be seen next week for an in depth ultrasound.
I decided to take the rest of the day off of work, even though I was told to stay calm and positive, I was just told there was something wrong with my baby.
4 days later I went to the specialist at Multi-care. The ultra sound only lasted 45 minutes and then the Doctor came into the ultra sound room to let me know what she saw. She told me that my daughter had hydranancephaly. A rare anomaly where no brain is formed, only the spinal cord. She told me that this only happens 1-10,000 pregnancy's. She pointed out the black spots on the ultra sound screen and said that where I saw black, was suppose to be gray brain tissue. I cant even describe to you how i felt at that moment. I wanted to curl up into a ball and just die. So much grief filled me and I felt lost, confused, sorrow, anger, the list goes on and on. I was crying so much I couldn't breath. I tried to gain composure, but I just couldn't I looked at the doctor and asked her, " what about hydrocephalus? you could be wrong!". She looked and me and said, " No, i'm sorry that's not a possibility." I talked with a grief counselor before leaving. She brought up abortion and I refused. I told her that i wouldn't kill my baby, i didn't want her to be in any pain. They told me that if I decided to continue my pregnancy, there was a large risk of still birth. They told me that she would only survive for a short amount of time if i went full term, that she wouldn't be able to function. They brought up the idea of being induced, so that i would be able to hold her for a few minutes before she died. I told them that if she had no chance of survival, i would be induced and give birth to her. I have always believed in God, so I questioned why God would do this. I left the office feeling broken. I had called my Doctor and told him I would be induced in 5 days. They wanted me to do it that day, to "Get it over with", but I needed time to say goodbye. They told me some women, when they find out something like this, want the baby out then and there. I was shocked and couldn't believe a women would just want to throw her baby away. Even thought the doctors gave me no hope, I still loved my baby girl. My Mom and I went away for the weekend to Cannon Beach Oregon. I needed to mourn and say goodbye to my baby girl before I brought her into this world, ultimately to die.
It was an emotional time, I cried off and on, I couldn't help it. I saw families with kids and babies and I would just start crying. I was carrying this baby in my stomach that I had bonded with, that wasn't going to grow up with me, that wasn't ever going to smile at me or tell me she Loves me. I saw other pregnant women and became angry. Everyone else was happy and joyful, having "Normal" babies, while I sat there knowing my child was different. I remember driving back home that weekend and a small voice said to me"shes not ready to come out yet." I was confused and didn't know if I just wanted that to be true, or if God was talking to me. I Did so much research and one of the things I came across said that Hydranancephaly can be misdiagnosed a lot. I decided to get a second opinion at the University of Washington. I was 22 weeks pregnant when I went for my second opinion I prayed a lot before the appointment and was nervous. At the end of it all, she didnt have what they originally diagnosed her with! She had hydrocephalus! I was in awe and so overwhelmed with joy. The doctors at the UW gave me pretty similar outcomes for my daughter. They also suggested an abortion and told me I only had 2 weeks to decide. In the end I decided to keep my daughter. I turned to my higher power and gave him all my worry's concerns and fears. For the last 4 months of my pregnancy I was at peace. I Prayed a lot and had a prayer chain going for her at multiple churches . I went into labor 2 days before my planned C-Section at 37 Weeks, 4 days. I was in so much pain, I really didn't have time to worry. I remember being strapped down and I kept feeling tugging and pulling at my stomach. My doctor said, " I'm looking at your uterus now, shes almost out." I then felt a huge pull and so much weight was taken off my stomach and back. My doctor told me she was out and I could hear her screaming and crying. It was the most amazing sound ive ever heard A minute later one of the Doctors brought her over to me so i could kiss her head. She was the most beautiful thing I have ever seen, it was so crazy to think that I made that beautiful little girl. I couldn't stop staring at her while I still lied there strapped down. They took her away to the NICU about 5 minutes after she was born. Once I was back in my room my doctor told me that she was doing great. They didn't need to help here with her breathing at all and she was also eating. once my pain was under control, one of the ladies from the NICU brought her up to me and I got to hold her for the first time. I tried to breast feed her, but my milk hadn't come in yet and she was fussy.
When she was 5 days old she went in for her shunt surgery. Everything went great and at 14 days old we went home. She was delayed in her eating when she was still in the hospital so they sent us home with a feeding tube. The doctors said that she might have been to tired to eat because of her surgery. When she was 18 days old the feeding tube went out for good! She started picking up on her feedings right away and was gaining weight like crazy. She was eating about 80ML of breast milk every 3 hours and the doctors would have been happy with 70ML, When she was 20 days old she started breast feeding. I thought she would never get the hang of it, but she did!
We sent her to an occupational therapist to have her evaluated and see if she was delayed at all. She almost didn't qualify for there program because she wasn't delayed in ANY areas except for her head. Her head is rather large, so we need to work with her on being able to lift it. We make sure to do tummy time every day and I am not supporting her head as much now, so she learns to use her neck muscles.
There are so many details that I missed, but that's the short story. Im so glad God gave me the strength to get through those hard times during my pregnancy. I never gave up on her and I never will. I believe in her like no one else, I know she will do amazing things and do what the doctors said she never would. She continues to prove them wrong every day. When people ask me "whats wrong with her" because she has a big head and her shunt is visible, I just smile and say " Nothing". Now what I really want to say is, "whats wrong with you?" or "Maybe her problem is people like you asking what her problem is." But I have patience now like I never did before. It is hard when people look at her differently or are afraid of what they don't know.
