My husband and I had tried to conceive for about 2 years. We found out in December of 2004 that we were pregnant with twins. I had an easy and predictable pregnancy up until 26 weeks when I was admitted to the hospital for early labor signs. We managed to keep the babies in until 28 weeks. Caitlin was baby A and weighed 2lbs 15oz and was the healthier of the two babies from the start.
At 2 weeks old, while still in the NICU, Caitlin began developing a fever and high heart rate. Almost immediately a Lumbar Puncture was ordered to check for infection. It felt like forever before we had the results, our beautiful baby girl had E-Coli Meningitis. We knew there were a lot of possible side effects including brain bleeds, hydrocephalus and even death. She was still so small and this was such a big infection for her body to fight off. For weeks we watched her be pumped with antibiotics through an IV. We couldn’t hold her or comfort her like every parent would want to do.
At about 9 weeks old we were told her head ultrasound had the doctors concerned and they ordered an MRI. We were then told the most devastating news that our daughter had hydrocephalus. We were told a neurosurgeon would come to the NICU and discuss what the next step was. I remember listening to the neurosurgeon as she told us she would be inserting a shunt. She made it sound like a routine surgery.
I kept thinking to myself “how could something so awful be routine” and I would spend the next few years realizing how routine it was. She spent a few weeks after the surgery in NICU before being released home to us at the end of August, 12 weeks after she was born. She came home with oxygen, a heart monitor and a pulsox to let us know if her oxygen levels dropped. It was overwhelming but it meant we got to have Caitlin home and comfortable now.
Caitlin seemed to be eating and growing like she should until the end of October when I noticed her fontanel was enlarged. After a CT and visit to the neurosurgeon we were told she needed to have a shunt revision. On November 1st 2005 Caitlin had her first revision; she never woke up from that surgery and was rushed to emergency surgery the following morning where she had another revision. After about 2 weeks in the hospital she was able to come home. She spent most of her first year in and out of the hospital due to revisions.
She had 8 surgeries total that year including moving the locations and adding another shunt. We were then blessed to go 3 years with no shunt related surgeries. In September 2009 Caitlin had her 9th shunt surgery which added another catheter to her system. She now has a total of 2 shunts with 3 catheters. Having so many pieces makes me really nervous about figuring out which part of the system is not working when something goes wrong.
Caitlin is a beautiful 5 year old girl who loves Elmo, Hello Kitty and Snow White. She attends full day kindergarten in an integrated classroom. She still does not walk independently and is developmentally delayed. She is a bundle of love and personality. She does require occupational therapy, physical therapy, speech therapy and even horse riding therapy. She has cerebral palsy on her left side and only uses her right hand. She never seems to let things get in her way and she is almost always in a good mood. Caitlin is my reason for believing in miracles after all that she has been through.