Clinic appointments and reality checks......

Who says CF clinic appointments cant be fun?? Natalie has a HUGE personality that takes over any room that she is in....she's dominating, she commands attention, and after all, who could resist?? she's just sooo darn cute! CF clinic is much like visiting family,albeit strange and remote family, but family just the same, after three years the nurses are like cousins that you didn't hang out with when you were young and the doctors are kinda like that Uncle that you don't mind talking to, but always talks about something you don't want to hear about :) They know when Natalie is coming because she literally runs into the nurses station at the clinic looking for our nurse, and looking for stickers. They are always happy to humor her. We draw on the bed paper in the rooms, play with the toys on the wall, and wait, patiently wait for what could make our day better, or could make the ride home a mind blowing rush of "what ifs".

Ive known since Natalie was 5 days old that she had Cystic Fibrosis. Even so, perhaps Ive just not fully accepted it. I understood the pancreatic insufficiency, the need for enzymes, I just assumed/hoped/prayed/imagined that her lungs would always be healthy...soooo apparently that's just not the case. In a dramatic turn of events, the problem at today's clinic appointment was not her weight, in fact her weight today ranked her in the 70th percentile for her age (WOOT!!!). The issue at hand is Natalie's lungs, there are marked changes from the last chest xray to the current chest xray. What does that mean? What do we do now? Well, quite frankly, it means that we hang on for dear life....fly by the seat of our pants into the wide wonderful world of "The Vest"....sounds scary, sounds intimidating, sounds like a big fat failure on my part.....however, in all actuality, its just the nature of the beast....a corner we must turn, a fight we readily accept, and might I add, expect to win.

The good days, the bad days, and the ones that make you want to cry......

I am a nurse by profession, a mother by the grace of God, one of my daughters just happens to have CF. I am a fiance, a daughter, an Aunt......I wear many many labels and all of them is a caretaker in one form or another, this is my lot in life, i enjoy it, i thrive in it, but when I percieve failure, I can make life very hard for me :) Especially when I am thriving on the professional end but feel like I am struggling at home, when my patients are all doing well, and I cant even get Natalie to take a bite of food, that day, that moment is a hard pill to swallow.......




Today was a good day........one of those, the ones that make you sit back and say to yourself, "Im okay, she's okay, we can do this" . Natalie has eaten well all day, 4 pieces of bacon and a piece of sausage with grits for breakfast, some apples and peanut butter with a pediasure for a snack, chicken and fries for lunch, and the list goes on and on, shes been a human vaccum cleaner today and that, my friends, makes for one happy mommy...........The problem, it seems, that there arent that many days that are just okay....maybe its just being in the midst of it makes your memory short, im not sure either way. I know that finding high calorie foods that are have real nutritional value has been the new mission in my life (aside from raising my two little girls). It seems like everyone is so calorie conscious, i have to do two rounds of grocery shopping, one round so Natalie has her high calorie, high fat, high protien diet, and another round so the rest of us dont blow up like balloons......the attempt at balancing is never ending, but what a ride, huh?




However, everyday is not so blissful. There are days when she would rather do ANYTHING other than eat.......days that im lucky to get 500-600 calories in her, days that i want to sit and cry, days that it seems that a feeding tube is coming and would be a blessing, days that i just dont think that God chose the right mother for this little girl because Im OBVIOUSLY not doing something right........then she crawls in my lap and says "mommy, i so glad youre here" in that sweet three year old voice, and i know im here for a reason and there's nowhere else Id rather be.