Jason and I spent a lot of time thinking about and planning for surgery but we never thought about AFTER the surgery. Never once did we discuss life post surgery. Considering no one knew what to expect we just went into this blindly...
Now, that we are on the other side of surgery we are in a funny position! We are beyond thankful that the surgery went so smoothly and that it was successful, Charlie Claire hasn't had a seizure in 10 days...that is the longest she has been seizure free since she was 3 days old!! However, we feel more nervous bringing Charlie Claire home now then when she was a newborn!
It didn't take us long to get into the groove of having a baby seizures...we definitely got a crash course in neurology! We would watch CC like a hawk and document any little thing that could potentially be a seizure. We were diligent about giving C her meds, we had many blood draws keeping up with charlie's medications. EEG's became a normal occurrence and we became quite friendly with the lovely techs at CHKD!! We have notebooks full of Charlie Claire's seizures...what time the occurred, how long they lasted, etc. Certainly this was not the type of baby book we imagined when I was pregnant.
Now here we are in life post surgery and we are back to being in a whole new world with a whole new set of anxieties. Jason and I know that the potential is there for Charlie Claire to have a seizure...especially in the first 6 months after surgery...so it's safe to say we will continue to watch her every move. Before surgery Charlie Claire was holding her own developmentally but there were certainly things that C was behind on. Now it's go time as far as trying to bring her up to speed. It's already amazing at little things Charlie Claire is doing that she wasn't doing before surgery. However, Jason and I do not know the full extent of how this surgery will effect CC's future. What we do know is that Charlie had to have this surgery in order for her to have a shot at a "normal" life and we are both committed to giving (or getting) Charlie Claire everything she needs to be the best Charlie Claire Bear she can be! Another we know is that C is a FIGHTER!! We truly believe that this little girl is going to do BIG things!
The past 6 months have taught us A LOT. We went from 72 hours of pure twin baby bliss to having our world completely turned upside down and inside out. We've learned a lot about people through out this experience. It has been breathtaking how many people, who have never even met Charlie Claire, that have been in C's corner. When C was first diagnosed we didn't want anyone to know...not because we were ashamed but we didn't want people to treat Charlie different and at the time we were still wrapping our hands around everything. Of course it eventually got to the point where we had to start telling our family and friends, after that word just started getting out and the support came POURING in. Jason and I know we would not have been able to get through this without every thought, every prayer, every email, every phone call, every text message, etc. that came from people close to us and people not so close to us but we all had the same goal...to help Charlie Claire. It's very overwhelming to us when we sit back and think about how loved Charlie Claire is and how awesome it is to know that she has had so much support. Thank you, thank you, thank you.
I don't think we will ever be able to put into words how grateful we are that Charlie Claire was cared for by Dr. Morton and Dr. Tye. From the day we met both of them we knew that they were on Team Charlie Claire! We could not have asked for a better experience and are truly blessed. We are confident in Dr. Morton and his team and know they will follow C closely for quite some time. The nurses in the PICU at MCV are the ones who took care of Charlie Claire around the clock and we couldn't have asked for better. They took amazing care of our baby girl and were just super good to her. It's funny how quickly you can get attached to people and we can't wait to go visit (just VISIT!) them in the future!
We should also mention how great the Hilton Garden Inn has been...the staff here has asked about C everyday and have been super accommodating!
As we prepare to leave Richmond tomorrow it comes with mixed feelings. There is a sense of security in being so close to Charlie Claire's medical team but we know we can't move into MCV so it's time for us to head home.
It will be nice to start getting used to our new normal...
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