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4/11/2016 Latest post:
We welcomed our 2nd child, a baby boy on Monday March 28th 2016.. 6 days early born on Easter Monday weighting 7lbs 13oz and 21 in long. He was perfect!
During our week long hospital stay he had some jaundice and had to go under the lights to help, when the neonatal dr came to speak with us prior to discharge he mentioned that his head was on the larger side and to let the pediatrician know. Not thinking much at first because his head circumference was 35 at birth and that was in the 57% we weren't concerned.
We saw the pediatrician the following Monday and mentioned the concern and his head seemed to be the same as birth so she said she'll monitor it each visit.
During the next 3-4 days we noticed at home that Ryan's head seemed to be getting bigger so Friday April 8 we took it upon ourselves to measure his head ourselves. The measurement we got was 42cm, 7cm more then Monday just 5 days prior.. during this time I also noticed his eyes drifting downward often referred to as sundowning eyes. Not feeling it to be an emergency since Ryan was acting fine I decided to go to the ER the next day. Saturday I woke up and took Ryan to Harbor hospital that afternoon. Upon arriving the physician said he was showing signs of water on the brain, hydrocephalus, and he phoned the pediatrician on call who told him to transfer us to Johns Hopkins children center.
Once at Johns Hopkins we were taken to the ER and immediately care started. A quick MRI was done to check for water on the brain. What happen next is a parents worst fear, 2 doctors came in and told Jeff and I that Ryan had a very large mass in the center of his brain.
We were immediately admitted to the pediatric intensive care unit where 1 hour neurological checks started.
The next day, Sunday the Neurosurgeons scheduled Ryan for a more extensive MRI which lasted about an hour and a half, he was sedated for it. The MRI confirmed the mass and gave the Dr's better pictures.
On Wednesday April 13, 2016 Ryan underwent his first brain surgery.. he had a shunt placed to drain the fluid built up in his brain and he also had a biopsy done of the tumor to determine which type of tumor he had.
We were told the results could take 1-2 weeks. On Friday April 15 Ryan had another quick MRI done to check the placement of his shunt.. unfortunately the doctor called just as we had stepped out for dinner.. Ryan's tumor had grown 2cm in just a few days and due to the growth they were unsure if the shunt was fully draining and almost certain that the right side was not draining at all.
Since that Friday we have still been in the picu and getting neuro checks every hour.. the wait has been super hard. Once we know the results and treatment plan I'll update accordingly. Please keep praying for Ryan and complete healing.