Khloe's First Thanksgiving

This week was hectic as usual. We went to Children's Hospital on Tuesday November 23, 2010 to meet with the surgeon who will do Khloe's surgery. He told us she definitely will benefit from a GI tube. Her mouth will be more comfortable, and she may take more millileters by bottle once her OG tube is removed from her throat. They also will remove her extra digit on each hand. I am nervous for her surgery, but I know it needs to be done. Surgery is set for December 15th. She will spend one or two nights in the hospital. So we will be road tripping to Milwaukee again soon. Khloe has gained some weight she is now 8lbs 9oz....yay!!! She is eating around 85 ml at each feeding every 2.5-3 hrs.
We had Thanksgiving at my parents house, and this was the 2nd time Khloe had been to their house. She did really well...she slept most of the day, and curled up with her Aunt Lori. Our Thanksgiving was nice, and we all had so much to be thankful for this year!! Glad Kurtis was with us this year. I know Kadence was really happy to have her daddy here this year. I thank god everyday for my wonderful family :) I hope everyone had a wonderful Thanksgiving also!!

Hugs,
Sandy

6 weeks

On Friday November 12, 2010 - Khloe was 6 weeks old and she weighs 7lbs 15oz. On this day Khloe smiled at me and her daddy. She also reached for the kitty and pulled some of his hair...lol. I don't know if our cat (Woody) will be coming by her anytime soon :) Next week Tuesday is a really big week for us...we will find out when Khloe's surgery will be for her G tube. Khloe's head is now healed and there are no open spots on her little head. I am finally able to take her with me if I have to run and errand. I am still being very careful where I bring her because of cold and flu season. So most of the time we are hanging out at home. Thanksgiving is next week...I hope everyone has a wonderful Thanksgiving. I am so Thankful for so much this Thanksgiving!!! I am thankful for my family who has been so helpful throughout this journey, and my friends for supporting me and my family. MOST of all I am thankful for Khloe! My little angel.

Tuesday November 9, 2010

Hello...

Yesterday I scheduled an appointment for her GI tube. We will be going down to Children's Hospital in Milwaukee two days before Thanksgiving to find out if Khloe is ready for this surgery. This surgery seems scary, but I think in the long run Khloe will be more comfortable with her feedings and not want to pull out her feeding tube everyday. I put the little mittens over her hands everyday, and last night I thought I could keep the mittens off. I woke up to Kurtis telling me that she pulled out her feeding tube. :( Khloe's nurse is such a sweetheart...she is so good with children, and Khloe seems to know when she is here at the house. Today Khloe's weight was 7lbs 4oz. She has lost an ounce since last week, so now the doctor is trying to figure out how she can put on some weight. I might need to add more formula to my breast milk that I pump and give her in a bottle, or I might need to give her a different kind of formula that has more calories. Typically trisomy babies have a hard time gaining weight, but I am not sure of why? Not sure if it's her metabolism or if her body just absorbs the calories? I do know that she is up to 65 ml every 2.5 hrs, and I may be able to bump her up to 70 ml once I hear from the doctor. She has been going up 5 ml every week, and the doctor and nurses have been watching how she tolerates her feedings. So far she has not spit up too much, and her little tummy is handling everything just fine. This is just a little part of the day in the life of Khloe :) My little ray of sunshine!!

Monday November 1, 2010 - One Month

Happy One Month Birthday to my little peanut Khloe. She is doing so well. I never thought in my wildest dreams that I would get to take her home much less get to spend so much time with our little miracle. She has been a true blessing for our entire family. We are savoring every second with her...Kadence has shown us some jealous sibling rivalry already. One day Kadence got off the bus, and wouldn't come in the house. She sat outside in the front yard and yelled I am not coming in the house because Khloe is in the house. Thank goodness my mother in law and my father were at the house. They convinced her to come in the house especially because it was on one of the really windy days last week.

I haven't had much sleep lately, but still enjoying every second with Khloe. An update on her head...it is almost healed completely on the top. Maybe another week and there should not be any open wound spots. No bone has grown in, so we will have to deal with that when the time comes, but all the skin growing in is pink and hair is already growing on the top of her head. She is now 7lbs 5 oz, and growing at her own rate. She amazes me everyday. Soon we are looking at a "G" feeding tube that goes directly to the belly. This should be more comfortable for her, but will require a surgery and we will meet with doctors soon to figure out when she will be ready for the surgery. This tube will be better as she keeps pulling out her oral feeding tube, and the nurses have to keep putting it back. The "OG" feeding tube is not very comfortable for her as it is so dry in her little throat. :(

All of us are doing well and hanging in there. Kurtis is back to work, Kadence is doing well in first grade and I am enjoying my time at home with Khloe. I know this journey is hard to walk as we all know Khloe's condition in terminal, but having all the love and support around us really does matter. Thank you so much for your prayers and kind thoughts for our family. :)

Hugs,

Sandy