Luna, 18 months
Luna was born 7 weeks early at LRMC, in Lakeland, FL. Labor and delivery went pretty well, and after 17 hours our baby girl was finally here! My husband and I were so happy to hear that she was 5Ibs11oz, 21in long. Due to her prematurity, she was immediately ripped from my arms and sent to the NICU where she was measured, weighed, and vitals taken. She was constantly monitored.
As the week went on, the hospital staff was so impressed with her “calmness” and stable vitals. She was doing (and eating) so well! We were scheduled to take Luna home within the next few days and had completed all the checks and paperwork to take her home. My husband and I were there for one of her feedings when a nurse noticed something strange about Luna’s head size and told us not to worry, and that she was going to have an ultrasound done of her head. After waiting patiently, we were told that Luna had suffered a brain hemorrhage and needed to be transferred to Nemour’s Children’s Hospital in Orlando, right away. Within an hour, an entire team had shown up and loaded Luna into an ambulance.
We got to the hospital where they quickly got more tests and images taken, confirming the hydrocephalus. Her first brain surgery was just implanting a little “tap” to drain her head immediately and then as often necessary after that. It only got drained once, and after a week we were sent hope to keep and eye on things. Within being home for 5 days, we noticed her head size was growing again. We ended up making trips to and from Orlando every other day for a week when they decided it was time to insert her 1st shunt.
Brain surgery #2 was an amazing success. We were so excited to see that this was going to be constant relief for her. We were sent home the next day to keep an eye out for infection and shunt failure. At this point, our AMAZING neurosurgeon was confident in our ability to notice when something was wrong.
We were home only 2 weeks when Luna woke up from a nap screaming. We had no idea what was happening. I immediately stripped off her onesie to check her shunt line, and there I saw a strip of red. We panicked and went to the ER closest to us, and transferred back to Orlando, where they confirmed the infection.
Luna’s neurosurgeon was so surprised, and with 20 years of experience, he had only seen 2 infections. None, recently. They immediately removed the shunt during surgery #3, and left her with an old-fashioned drain running from her head. It was just a tube from her head to a device next to her bedside that measures the pressure and drainage. After 2 long, horrible weeks of Luna fighting the infection, we went home with no shunt at all. She didn’t need it, the fluid was not building back up. Surgery #4 was quick and was the removal of the tube.
We were home another week when it was back to the operating room for Luna for surgery #5. . She now has her current shunt, and it doing very well!
She is 18 months old, but suffers a mild case of cerebral palsy on her right side, due to the hemorrhage on the left side, but is fighting very hard to overcome it. Physical therapy and occupational therapy are doing amazing things for her. We will continue to work with her to help give her the life she deserves. She is our little fighter, and I thank God and her amazing Doctors and Nurses for everything they have done for her.
Tell us about your journey with hydrocephalus!
Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are posted on our website and through social media. Submit your story today!
Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!
For questions, email: firstname.lastname@example.org with the subject line “Share Your Story”.
Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.