Tuesday, March 29, 2011
Happy 2 months to our sweet baby girl! I have recognised how much more significant all the milestones seem to be when comparing my healthy boy to Caroline. I consider also how very blessed we are and I don't take one single smile for granted. She weighed in this morning at a staggering 4.50 kilos (which is 9 pounds, 15 ounces) so we are excited about almost breaking into the double digits. Eight weeks ago, we began a journey we had been preparing for...but nothing really prepares you for the fight these little one's are born with. She has already endured so much and shown us just how precious life is. I continue to stay cautiously optimistic about her progress, she still has so much to overcome. We thank everyone for keeping us in your thoughts and prayers.
Sunday, March 27, 2011
We have been enjoying what little Spring weather we have had here. I'm sure the tourists would be really disappointed if the frost killed all the cherry blossom blooms. Now that the time has changed, on nice days either Matthew or I are able to take Parker outside to play for a while. I feel guilty keeping him tucked inside all the time and I know he isn't getting enough exercise. With the change of season and Easter around the corner, I have been thinking about having pictures taken. My husband HATES the whole picture taking process, but 2 times a year so far I have managed to get him in front of a camera. Because Caroline is shunt dependent and this interstage is considered very delicate, I can't just drag everyone down to the local Olan Mills. Parker was having his pictures taken when he was a few days old and I don't want the Princess getting cheated with having a nice collection of photos taken on a cell phone. We do have a digital camera, but I'm the last person alive that should be trusted taking nice pictures. This is an ongoing problem...so I'll be sure to post as soon as we figure out the solution.
Saturday, March 12, 2011
I have always been a fan of the expression, "when it rains, it pours". Referring to my weeks of Doctors visits, it stands true and seems to all happen at once. I am getting used to the drive to Bethesda (the National Naval Medical Center, or NNMC). With these gas prices, we're going to have to start making consolidated trips. I just hate sitting around in a medical treatment facility, where any one person could infect either one of my children. Our most recent trip (Wednesday) to the Cardiologist was uneventful, and we began talking about when Caroline would be ready for the next stage. While we were at NNMC, I finalized some paperwork for the Exceptional Family Member Program. This program enables us to stay within a certain area of a hospital capable of taking care of the Princess. So, the Navy can't send us anywhere exotic, and we will probably end up not going overseas. The Cardiologist had to fill out parts of the EFMP paperwork (to determine the level we would be assigned) and when I read over the "prognosis" part, it hit me like a ton of bricks...again. I wasn't surprised, but the 80% five year survival part is really hard for me to swallow. They told us these statistics in the beginning, but the reminder still stings.
Tuesday, March 8, 2011
This video shows what the surgeons have to do during the second stage of palliation. We won't know when that is until she starts to outgrow her shunt. Caroline is getting stronger every day. If she keeps gaining weight like she is, this surgery will be sooner than later (which is bitter-sweet for me). I know she needs this surgery and it will enable her to live and thrive, but it is another surgery. It is another time that I'll have to put her on a table knowing there is a chance I won't get her back. So, it really sucks either way.