Hey everyone, Thank you for the continual prayers! we need them so much. yesterday we met with the pediatric neurosurgeon. My doctor warned me before we went to see her that she did not have the best bed side manners, well I thought she did… I actually liked her the best. She was very matter of fact and informative about what was going on( she also said she liked us because we did research and knew what we were talking about)The doctor said most people go in there not knowing practically anything about the situation! I was pretty shocked! I mean I feel so useless the only thing I can do is get my self informed on everything possible so that I’m ready for the outcome.
My specialist OB said that she THINKS it’s most likely aqueductal stenosis ( not 100% though)… Which is actually the best form of hydrocephalus because it rarely damages the brain!! also with aqueductal stenosis later on in life they can do an ETV which would ultimately mean he can live a shunt free life.( ETV is endoscopic third ventriculostomy… try saying that 5 times fast!) an ETV is where they basically drill a hole where the obstruction is causing the fluid to flow on its own where it should.( you have to be a perfect candidate for that though )
anyhoo the rest of the appointment went well she commended me for refusing to do the mri! she said basically its a waste of time and money because she will not be able to tell anything until the baby is born. Even when people opt to do the Amnio or mri she said its usually because they want to see whats causing it so they can decide if they want to terminate the pregnancy… ( excuse me while I vomit) She said that even then its ridiculously hard to tell what is happening, and that nothing will really change the way she handles things when the baby is born. so everything is a waiting game…. we also wont know if he has developmental issues until he starts reaching milestones… I’m almost happy about that because each time he does reach a milestone like lifting his head or rolling over it will be so special to us!
It’s weird but Praise God for this little boy and his hydrocephalus. If this didn’t happen I wouldn’t know that I could love someone or appreciate them this much. God has a plan and I know he has one for Jonah. People tell me to not lose my faith( mostly men! they don’t know how it feels to have a baby grow in you) , and I WONT! I will be mad at God if I lose my boy but isn’t that understandable? that doesn’t mean i will stay mad because I know in my heart God has a purpose for everything and he will be there with us the whole way!
anyhoo that’s it for today!—–Kelsey