Saturday, January 17, 2009

One year ago today...

....was a day that I will NEVER forget! This is a day that is etched in my mind, probably for the rest of my life. You see, 1 year today, Thursday, January 17, 2007 around 11:00 am, our whole family went to celebrate finding out if our soon to be 4th edition was a boy or a girl. Everyone was SO excited. I'd been counting down the days for at least a month. For some reason, I REALLY wanted to know the sex of our baby. Micah and Steve were sure it was a boy. Megan, Mason and I were sure it was a girl. We'd been bantering back and forth at each other forever, each insisting it was one or the other. Steve had taken the day off and we were going for Chinese later to celebrate. Steve, however, had spent the whole day and night doing his 'snow route' that he has because we'd gotten a ton of snow the day before, so he was exhausted. I still insisted he come and he could sleep the rest of the day in bed after our celebration.
We all showed up at the office and were ushered in to the ultrasound room. I work with the ultrasound techs and one of the nurses was a former co-worker on Labor and Delivery with me, so all were excited to see us. As the tech started the ultrasound, she put the wand on my belly and no sooner the kids hollered out, " what is it, is a boy or a girl?" I told them to be patient, we were just looking at the head. She took a few measurements and went and looked at me, took the wand off my belly and said, " Jill, I'm going to grab the Doctor, he's getting ready to go to a meeting, but I want him to look at these scans. His head is measuring much bigger than it's supposed to." I immediately knew. I don't know how, but when she left the room, I looked at Steve and said, " Our baby has hydrocephalus." Steve had no idea what that meant, but I sure did. The tech came back and said, okay, lets see if baby is a boy or a girl. She quickly found out it was a boy! The kids were so excited, they were distracted, thank goodness. She finished the rest of the ultrasound, and the rest is a blur. I don't remember anything other than the Dr. coming in to talk to me. He stated that our baby had hydrocephalus, that we would need to deliver with a different doctor, in a different hospital, without my midwife and most possibly have a cesarean. I was in shell shock. I'll never forget his words, "Jill, I think I know you well enough, you wouldn't consider termination, would you?" I quickly shook my head no, and later found out those were the only words Steve heard. He immediately perked up then (remember he had been up all day and all night- he'd been up around 30 hours) and listened to rest of what the doctor said. I remember trying to take it all in. I remember he said he thought I was taking it so well. I was in absolute shock!
Needless to say we left feeling numb. No longer hungry, we drove through a Chinese drive-thru because the kids were still excited for Chinese. We took it home and we sat in silence, barely eating. By then, Steve was exhausted. He went straight to bed, and slept till the next morning. I, not knowing what to do, just sat there. I sent the kids to play and stated we would have a day off of schoolwork. I immediately sat at the computer and spent the next 10 hours researching hydrocephalus. I, of course, found all the bad stuff. Things about babies dying, babies never getting to go home, horrid pictures. But then, I found hope. The first person I found that had a child with hydrocephalus was, crazy enough, some one in my own town who had just brought her baby home that VERY day! I couldn't believe it. On the WORLD wide web, I found someone right in my town! I immediately emailed her, and am so glad I met Sherri. She was the first of many wonderful people I call friends that I have met on the internet whose children are affected by hydrocephalus. The web has been the best source of information and support.

I remember going to bed that night and crying myself to sleep. I just sobbed and sobbed. I had only told my mom so far, and I couldn't bring myself to call anyone else. I just sat all by myself. The next day was worse. I cried the whole day. I was a wreck! I felt so bad for the other kids. They had no idea why I couldn't even talk without crying. People started calling, wondering how my ultrasound had gone. I retold the story numerous times that day, crying harder each time.
Shortly after, our family and friends rallied round us. They lifted us up, and supported us through the next few difficult months. In February, I found the website that gave me so much hope. From this website, we found out about stem cell infusion for hydrocephalus and decided we would do this for our baby boy. I found Lisa's website and Kristen's website and a message board on I spent the remainder of my pregnancy educating myself, spending endless hours on the internet. I worried, prayed and tried to prepare for the unknown. I tried very hard to enjoy the rest of the pregnancy; enjoying frequent ultrasound pictures of my little man.

Matthew will be 8 months old soon! Time has really gone fast. Some days are really hard, sometimes I still let myself get in the dumps. But, Matthew is a joy. He is sweet and cuddly. I love him to pieces. Sometimes I'm very sad he's not developing "typically". But, I have to remember he's going at his own pace. And God made him who he is. He is who he is. And, he's forever changed our lives.


Kristen said...

It brings tears to my eyes. Reading your story makes me want to run over to your house, sit with you and talk while we hold our babies for hours. We all have "that" day that is forever etched into our minds. I was thinking I'm not sure if your nursing education and experience made it easier or harder in this situation. Perhaps harder.

Thanks for sharing your story Jill. It's been a joy getting to know you.

Jennifer said...

Thank goodness for the internet. I've been following your blog for a few months now, perhaps longer, but I don't know that I even have commented. I think I found your through Sherri's site.

Your story is so familiar to me, because mine was so much of the same. The website I found was Michelle's(Owen's) and they live only 15 minutes from me. The help she gave me in preparing for Elijah was ENORMOUS including telling us about the stem cell infusion.

There is a whole community of moms online that have been touched by hydrocephalus in some way and I am eternally grateful for the stories that are shared.

Matthew is a sweet and adorable boy. I love seeing his pictures! I look forward to watching him grow and develop. Thank you for sharing him with us. :c)

Lisa said...

It's good to sit back and remember all that you have been through. What a year it has been! I am so glad that we have formed our own 'support group' of sorts through the internet. It is such a blessing to be able to travel this road together, isn't it? I don't know what I would do if I didn't have you and Kristen and Sherri and Michelle and Jennifer to share it all with. Somehow it just makes it slightly easier to deal with, knowing that there are others who have felt the exact same feelings and have had the same worries and same trials.

You have become a dear friend to me, even if it's only through the world wide web. And one day I think that we should all plan a little vacation together and meet up! What fun would that be! Mabye when our babies are a little older :)

Michelle said...

I would second the idea of having a "get together" for all us girls (and our babies) someday. I really don't know what I would do without you guys. Your words of support when we're in the hospital have always made it easier somehow, since you all have been through it yourselves and understand. So I thank you to all my hydro friends, both near (Jennifer) and far (everyone else)!