Thursday, April 24, 2008

One Year Ago Today...

I was 16 weeks pregnant and I was going to have an ultrasound. Even though it was my third pregnancy, it was every bit as exciting as the first. I couldn't wait to see my little baby up on the monitor, and even more I couldn't wait to find out if it was a boy or a girl.

Donald and I went to the ultrasound together, leaving our other two children with their Grandma. The ultrasound went normally at the beginning, we saw cute images of feet, hands, arms and legs on the screen. The lady doing the ultrasound couldn't tell what the gender was at first, but said she would try to get a better look later. Then she excused herself from the room and went to find a doctor to look on with her. That should have been my hint right then that something was not right. But naive little Lisa, I just oohed and aahed to Donald about how cute the baby was and how I really, really hoped that they could tell about the gender.

A few minutes later the lady returned, accompanied by a doctor. She resumed the ultrasound and went straight to trying to find out what the sex was (I see now that she wanted to give me some good news before the bad). "It's a girl", she said. I lit up and looked at Donald. We had really been hoping for a third little girl. They then began pointing to things on the monitor and talking quietly to one another. I heard words like "abnormal" and "lemon shaped". My heart sank. Donald and I looked at one another. Something was terribly wrong. At that point the doctor sighed deeply and said to the technician, "so have you told them anything yet?". I braced myself, afraid to hear whatever bad news they had to tell us. He then said that it looked like the baby had hydrocephalus. It was the first time I had ever heard that word. "The baby has what?", I asked. I had no idea what that was or what that meant for the baby. The ultrasound tech, deeply sorry to be sharing this devastating news with us kindly explained that it meant 'water on the brain'. I still didn't know what that meant for our child.

A few days later I met with a perinatologist who specializes in high risk pregnancies. After looking at the ultrasound images he sat down with Donald and me. "This is not a good news situation", he said. I asked what he thought her outcome would be. He told me that most likely she would die in the womb or shortly after birth. He then asked if we had thought about termination. We immediately said that termination was not a possibility. Still, he brought up the abortion idea multiple times over the next few weeks. He said that many parents aren't prepared to deal with a child like this. My thoughts: if a parent isn't prepared to deal with a child like this, then they aren't prepared to be a parent. He tried another angle to support his termination push. "You have to think of the baby, do you want her to have to live a life of handicaps and surgeries?". Um...let me think.....give her a chance at life or kill her off now? Easy answer. I told him that we would continue on with the pregnancy. I am pretty sure he thought I was crazy. I was choosing to keep a baby that he was confident would die anyways. He told me that if I was going to carry this baby to term I should be prepared with funeral arrangements.

That was the first time in my life that I felt a broken heart. My heart ached and ached. And I cried and cried. I went home and began planning her funeral. I shopped for infant caskets, and I asked my sister to sew her a burial dress. It was the most devastating thing that I have ever done. But I tried to stay positive. No matter what, she would always be my baby. I played hymns for her on the piano every day. I wanted her to feel peace and comfort while in the womb. I enjoyed every little kick, not knowing if it would be her last. Even up until one or two weeks before her delivery, they told me that the chance of fetal demise was high. I didn't want her to die in the womb. That was the one thing that I prayed for. If she could just be born, and live a few minutes so that I could hold her and tell her I love her, I would be the happiest mother in the world.

{flowers my sister sent me that week alongside Elisabeth's ultrasound picture}

Those few weeks after the diagnoses, my head was spinning. I had a million thoughts and questions floating around in my head and I found it hard to concentrate on anything else. Even though I was grieving at the knowledge that my child was probably going to die, I had to carry on. I still had two other children who needed me to be normal. So I decided one night as I lay awake that I was going to snap out of my funk. Everything would be alright, no matter what the outcome. So I did what I always do when I want to perk up; I started organizing. I bought a notebook and dividers. I had a section with all her funeral arrangements. I had one with information on doctors and surgeons. Another divider was for medical bills and insurance forms. The last held all the research that I was doing on hydrocephalus. There still was a chance my baby could live and I needed to be prepared.

We had been in touch with the local hospitals and were told that delivery here was not a possibility. So the next step was to figure out where this baby would be born. There were several choices. We considered going to Orange County, CA. My mother lives there and I knew that the girls and I could go stay with her towards the end of the pregnancy. The only glitch was that Donald would have to stay behind and work and I knew that I was going to need his support throughout all of this. Next hospital on the list, Primary Children's Hospital in Salt Lake City. They are famous for their pediatric neurosurgery center. Our daughter would get the best possible care there. But once again, Donald would have to stay behind and I didn't think that I could handle that. Two more choices: Seattle and Spokane. Both relatively close, both near family, both had pediatric neurosurgeons. In the end we chose Spokane. Only 2 hours away and Donald's sister lived near the hospital.

Several weeks later I found a website called fetalhydrocephalus.com. It changed everything for me. The website is about a little boy named Owen with hydrocephalus. He was eight months old at the time. This website became my resource for everything. Owen's parents, who had gone through many of the same things we were going through had also been discouraged at the lack of information available. So they decided to start a website of their own. They chronicle every detail of the pregnancy, birth, surgeries, and developmental progress. They share all the research they have done. We have since met Owen and his parents. They are kind and inspirational people. Until I came across their website I was convinced that my baby would die, but suddenly I had hope. I could never thank them enough for that gift of hope.

One of the things that really intrigued us on Owen's website was a stem cell infusion that he had received after he was born. His cord blood was collected at birth and the stem cells from that cord blood were infused to him when he was a few days old. Stem cells are the body's “master” cells because they give rise to all tissues, organs, and systems in the body. They have the ability to differentiate, or change, into other types of cells in the body. The hope was that by giving Owen his stem cells after birth it would help to repair damaged brain tissue. We started doing research on having a stem cell infusion done for our baby. After calls to different cord blood banks and the FDA, we soon realized that the only realistic way to get this done for Elisabeth would be to take her to Duke University, where Owen had his done. Our only hesitation at the time was knowing that insurance would not cover this "experimental" procedure. In the end we decided that this would be potentially life changing for Elisabeth and that we couldn't pass on this golden opportunity. We were sent a cord blood collection kit to take to the hospital with us and we were to send the blood to them immediately after she was born where it would be stored until Elisabeth was able to go to Duke.

My pregnancy continued on with frequent ultrasounds in Spokane. Needless to say, I became quite familiar with the drive. Deaconess Medical Center in Spokane has an entire perinatal center. They were wonderful! They helped coordinate all my appointments with doctors and surgeons and made my stressful situation much easier to deal with. The highlight of the pregnancy were the 4D pictures that I would get of Elisabeth every 1 or 2 weeks. She was a chub!


It was decided that they would deliver the baby by c-section at 38 weeks. A vaginal delivery would have meant extra pressure on her head, and we really wanted to avoid that. So on the morning of September 24, 2007 my husband and I arrived at the hospital, ready to meet our baby. We were blessed to have Donald's entire family there as well as my mother and one of my brother's.

When they wheeled me in to the operating room I was a little surprised. It wasn't at all what I was expecting. "Is this where she is going to be born?" I asked. Yes, was the answer. The room was heavenly. That might sound like a funny way to describe an operating room, but it was. It was on the third level of the hospital and had one entire wall that was solid windows. The blinds were pulled all the way open and the room was flooded with the most glorious morning sunshine. They then asked what I wanted to listen to. I thought they were joking at first, but no, they really wanted to know what music I wanted playing. So they put on a CD of Vivaldi's 4 seasons. When Elisabeth was born she was greeted by warm sunlight and beautiful music. The room was peaceful, I was peaceful. It was the greatest moment of my entire life. Here she was, alive, crying, beautiful. We had made it.


Today is Elisabeth's 7 month birthday. She has been through a lot in her short life. A successful shunt placement surgery at 1 day old and the stem cell infusion at 6 weeks. We have learned more about her; epilepsy, brain malformations, cortical blindness, and craniosynostosis. She has therapy sessions once a week and they are thrilled with her progress. Having her in our family has been truly joyous, and I simply cannot imagine life without her.

Life is so interesting. As much as you plan, you can never control where you end up. All you can do is to find joy in the journey and the experiences. I love where I am. I love the things that I have learned. I love the people I have met. Recently one of my good friends told me about a story that does a perfect job of explaining life as I now know it.



Welcome to Holland

by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."


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