Ashley, 8

Ashley Today!

Today was the day… it was the day we were going to meet our perfect little girl! Little did I know today would be the day that would change our lives.
When my husband and I found out we were pregnant with our first baby we were over joyed! All of our appointments went as planned. She looked perfect on the ultra sound and was very cooperative with letting us find out we were going to be adding a little princess to our family! Honestly there was nothing during our pregnancy that indicated we would have any problems.

I remember that moment the doctor laid her on my chest. Pure joy!! She looked perfect. Except she wasn’t crying. I started asking questions right away. I remember a nurse leaning over me and calmly but urgently asking for the NICU team to come down. Then everything happened in a blur. Baby girl was taken away quickly and I truly had no idea what was going on. Once they had taken her up to the NICU. I remember a doctor calmly explaining she had ruptured her lungs and that it should be a few day recovery but that she should heal quickly and be fine. That was Tuesday morning.

I didn’t sleep much those first few days. Life was a constant blur that revolved around every 3 hours of feeding her. Even though we couldn’t hold her, we would go in and talk to her as they put her milk through the feeding tube. They finally let us hold her on Saturday. WOW! She was so perfect. Sunday morning (Easter morning) the doctor doing rounds told me they were still concerned that she was still running a fever and that they would like to do a spinal tap to figure out the cause. I gave my consent, but never truly realized that test would give us answers that would only leave us with more questions.

Monday morning brought the answer. The doctor explained to us that Ashley’s brain was bleeding and not draining properly. She used the word hydrocephalus, which I’m pretty sure was the first time I had ever heard these words. My husband wisely told me I was not allowed to search anything on the internet! So I went home that Friday knowing very little but knowing I had a baby that would need some extra attention.

We were in our pediatrician office every 2 weeks. And ultrasounds on her head every few weeks.

At 2 1/2 months old. I was feeding her one night and was stroking her hair and I felt a bulge. I waited to call the doctor till the next morning. We were instantly rushed into an ultrasound and sent over to our neurosurgeon’s office. He came in and confirmed we could not wait any longer. “How about tomorrow at 8:00?” So in the middle of a Friday afternoon we called a lot of relatives and planned for an early Saturday morning!

The surgery was a success! We stayed in the hospital til Monday morning and were sent home with very few instructions except to come back and get the stitches out 10 days later. My mommy heart did a sigh of relief.

For the next six months, Ashley did great! Then 3 days before Christmas Ashley threw up. I knew this was different than just spit up, and even though our house was filled with college age kids for a Sunday School class Christmas party, my husband and I looked at each other and seemed to know what our next few days were going to be like.

Sure enough, the next day we had a cat scan and confirmed we would have surgery once again the next day! Ashley did so good on that surgery we went home that night.

As June rolled around six months later, I found my self over inspecting my little girl. Summer went into fall, and fall into winter… what, wait, we made it a whole year?!

I am now writing this 7 1/2 years later. We have had no surgeries. Ashley is a very smart, active, social little girl! She is thriving in school! She has an occupational therapist come to school for her fine motor skills, but if you just met Ashley you would have no idea the crazy beginning she had! Have we had scary days… YES! Does my heart do a little flutter every time she tells me she has a headache…YES! But this little princess is perfect just the way she is!

Ashley a few hours before surgery

Ashley a couple of hours after surgery

Tell us about your journey with hydrocephalus!

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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