Birthday Countdown

 Birthday Photo Shoot with Aunt Amber

I can't believe this cute girl will be a ONE-YEAR-OLD in a week!!! She has had an eventful year with 4 hospitalizations. Her most recent hospital stay was very different for us because we weren't on the 5th floor (the CVICU) where we feel at home. This time we were on the 8th floor, the neurology/seizure unit where Stella had an MRI and a 24 hour eeg. We discovered that she was having infantile spasms, a type of seizure that can be very damaging to an infant's brain. Thankfully we brought Stella into the ER instead of waiting for our neuro appointment to figure out what was happening - our neurologist told us that she has seen families who wait a few weeks and their baby comes in for an appointment with no personality and just a blank stare due to the brain damage they have suffered from the spasms. Well little miss Stella has definitely not lost any of her personality! We left the hospital with two new medications, keppra and prednisolone (a steroid). The neurologist warned us that the steroids could make Stella very hyper, hungry, and ANGRY. The "roid rage" has hit our household but it only stays for a short time each day. Stella is very hyper and since we have come home from the hospital she takes a very short nap each day and doesn't sleep through the night. However, she has also been very playful and talkative (we think she is saying "Da Da," "Ma Ma," and "YaYa") The angry baby shows up usually in the afternoons/evenings for thirty minute screaming sessions where it seems like she is overly tired but completely fighting wanting to sleep. The steroids are a temporary thing, thank goodness!, that should be gone in about 30 days - they are definitely working though. Stella's last seizure episode was on Sunday morning and Stella has gone over 48 hours without throwing up! A vomit-free Stella is a huge deal to us because she has never had a full day go by without throwing up and it had gotten so bad that somedays she would throw up or gag 12 times. I am not sure it the vomiting was directly related to the seizures but it has definitely gotten so much better with the seizures going away.

We have a lot to celebrate this next week and it is so great to see how many milestones Stella has reached over the past year (the big ones like surviving two open heart surgeries and the little ones like making it through an entire day without throwing up!)