I still don't know that we made the right choice to go forward with the g-tube and when I say choice, even though I know it was ours to make, I still don't feel as if we really were given a choice to make. I don't think we will ever know if we made the right decision even after surgery is all said and done with. Should we have waited, insisted they give her more time to gain weight? I don't know, but as Jeff and I have been hashing it over we know that right now she has some wiggle room, her weight is okay and it's not a dire need and we would rather have the tube placed now than wait and have her weight really falter where the g-tube is really a last resort. As with so many things with CF, there are so many uncertainties, difficult decisions to make, battles to fight . . . days where you feel like you rob Peter to pay Paul.
Jeff and I get it, we know that placing the g-tube now while Olivia's weight is "okay", gives us options and flexibility. We have time to get her to an ideal weight before she goes to kindergarten so that she can thrive at school. We could go to Disney World, on a vacation or camping without having to lug all the tube feed supplies along and just not do night time feeds for awhile. We've been told over and over that CF is to fit into our lives, not the other way around. Some days I chuckle at that statement, as there are days that are so CF consuming that it couldn't be more untrue.
Yesterday, Darci brought over some G-tube pads and a tummy belt. The pads take the place of gauze and tape around the g-tube, they are absorbent, softer on the skin and are said to help with granulation tissue and the belt is for routing and securing the tubing during night time feeds. One of Darci's friend and co-workers bought them as a gift for Olivia. How sweet is that? I cried when Darci told me about them, what an amazing act of kindness, something to make a difficult thing better. The pads have Anna and Elsa on them. As sad as it is for me to know why they are needed and the changes that are coming, Olivia loves them, she clutched all 4 pads in her little hand this morning while doing her vest/nebulizer treatment. So each day she can pick a different pad to place around her g-tube, it'll help decorate her belly, help with the g-tube sight itself and give Olivia a choice and something to maybe look forward to in a situation that isn't so fun and in a cf life where she doesn't always get so many choices. It was with a heavy heart that I ordered up some more this morning, one that has a kitty face that Olivia will enjoy I am sure. Thanks Ryan for the gift and also for bringing these to light for us, I had no idea there was such a thing and these will be great. They'll give Olivia a choice involving the care of her g-tube and Anna and Elsa from Frozen - seriously, doesn't get better than that.
|Fashiontubies on Etsy - Frozen Protective Belt & G-tube Pads|
As I feel sorry for myself, frustrated at the future, mad as all heck at CF right now. . . I still know it could be worse, so very much worse. I know that this doesn't have to be a forever thing, I know that when we take the tube out someday the scar will be so minimal compared to the one that already adorns her belly from her NICU stay and surgery during the first few weeks of her life. Change stinks, it's hard to adjust too at first but we will get there. I'm sure there will be challenges, I'm sure there will be things I hate at first but, all in due time. As if I ever need to be reminded of what this disease is and does, this is yet another reminder, a slap in the face of all the havoc CF wreaks on one's body.
And then I have my sweet little best bud Landen, wondering, questioning, worrying . . . asking why he can't come with to the hospital, telling me repeatedly that he'll miss me while tearing up. He's such a trooper. We are a tight knit family of 4, Landen has been to most everyone of Olivia's CF appointments with us, so he just doesn't quite understand why he can't come to this one . . . it's hard to explain to a 7 year old, even harder for him to grasp the changes that are to occur. Very rarely are we ever away from the kids, especially over night so tears are sure to be shed by all. I thank my sister Darci and niece Braelyn for agreeing to move in to the house while we are away. They will take care of Landen, our home and trusty old Shelby who is miraculously still kicking. It'll be great for Landen to have Braelyn to play with as he is so used to having a sister around to play with everyday. Thanks also to Grandma Pam, Grandma Dianne and Aunt Jennie for offering to help out, Landen is sure to enjoy spending time with everyone of you. Since we can't take our best bud with us, it's great to know that Landen will be in the comforts of home with people near and dear to us. Thanks to everyone for your thoughts, words and prayers, we are blessed to have such wonderful family and friends in our lives.