Jadyn's appt didn't go as well as we hoped. The fluid has built up slightly from her at birth head sono from today's head sono. Dr. Ahn's bringing us back in 4 weeks for another head ultrasound and follow up with him to see the progression. She will most likely still need surgery and get a shunt placed if there is more fluid build up-increased pressure next appt. He believes a slight increase in fluid will continue being seen. However, he is comfortable waiting another 4 weeks to double check the progression since she is doing well and head circum has remained fine. She is in the 75th percentile for head circum which is still fine. I also was pushing for holding off because the scans side by side on the computer screen weren't that impressive of more fluid build up. I'm not saying it wasn't there or it won't be slightly worse in 4 weeks but as long as she is fine and doing well, we would rather wait and see more progression before throwing a shunt in her body.
It's not what we wanted to hear so of course we are hoping for a miracle in the next month with the fluid being stable or decreasing some. Although we knew what we were getting into with her health concerns and we were even prepared for shunt surgery on New Years Day it's still hard to deal with after the good news...we thought maybe we had dodged the bullet, at least longer than this.
The bright side is Jadyn is here and doing well. She is otherwise healthy with no other concerns. She is doing fabulous with her head control and holds her head on her own a lot of the time. She is smiling up a storm. Eating like a champ and gaining weight like she is supposed to be.
In the meantime, I'm following up again at A.I. Dupont for the semi-new procedure that might eliminate the need for a shunt. Shunts are good and they do the trick however they can have a high infection rate and malfunction rate. Some people get a shunt and it can last them a lifetime (rare!!) however some get a shunt and for some odd reason, they are in the hospital every couple months because of an issue. And there is always the in between.... an every 5-10 year issue that really isn't that big of a deal.. in and out procedure. I guess we got our hopes up that she might not need it so this is really a letdown. I also would like to get another scan rather than shunting based off a head ultrasound. I'll bring that up next meeting.
Hope everyone had some lovely snow days and a great Valentine's Day. Jadyn joined us Saturday night for her first trip to Little Italy. I'm happy she doesn't eat table food yet or we would have really been broke, hehe. We ate at Ciao Bella which was pretty tasty, expensive but still good. She was of course a gem, besides some loud gas at the start of the meal.
Jay goes back to work next Wednesday and we still have no great sleeping schedule, lol. She gives us about a good 4 at the most 5 hour stretch at the beginning of the night and then it seems every 2-3 hours she is up the rest of the morning. Let's hope things get better before I have to head back to work...which might be earlier than I thought. If Jadyn does have to get surgery, I want to be able to take off and stay in the hospital with her and home, naturally. So, I may have to get back to work at 10 weeks to save some FMLA time to take off around surgery. Since this has all taken place today, I haven't given it too much more thought or even contact HR about this plan but I will get around to it soon. Hope you enjoy the new pictures.