Ky's latest surgery

Ky went in for surgery on the 21st to have her peg tube replaced with a button which is much nicer and easier to care for. She has stopped having interest in eating and always has a tough time bouncing back from anesthesia so we have some catching up to do but I keep hoping one day it is all going to come together. We are pretty sure this is her last surgery and we can keep going forward with therapy and learning new habits. She has gained 4 ounces this month and is doing great with her motor skills. Our goal this month is to start introducing food and finding some that interest her. We had a beautiful first Christmas with the girls. We received lots of amazing blessings this year and Ky even had interest in ripping paper. We had our family over to celebrate together and it was just a calm, nice time. We are looking forward to an amazing year with the girls. I am anxious to see what kind of adventures are in store for us this year. Steven and I are really enjoying the girls and have a lot of hope for our families future.

Christmas time is here

Ky is 4 months old now and finally growing. She went in for her 4 month check up a few weeks ago and weighed in at 13 pounds 4 ounces. They say she is still a little small for her age but they are happy with her progress and we are sure she will catch up. She is hitting a lot of developmental milestones. She found her feet, rolled from front to back and started to hold things on her own which is extra exciting for us because they were testing her for developmental delays and she passed. Thank god. Unfortunately Ky has to go back in for surgery again on the 21st. She is having her g tube replaced with a button which is great but I am a little nervous because her last one day surgery turned into a ten day stay and two surgeries. I am again just staying hopeful and praying for the best. We have tried solid foods for the first time and she is struggling with it but shows interest in the flavor so far she has only had sweet potatoes but she will learn and we will beat her dependence on her tube. She has started giggling which is such a huge leap from when I couldn't even pick her up. She is an amazing baby and we are going to continue to move forward and keep making improvements. Ky went and saw Santa for the first time with her sister and she didn't even cry. I was so proud of her. We couldn't be more excited about Christmas. It's been hard having Steven working away but we are all going to be together for Christmas and I couldn't be more happy about it.

We are in Elko, Nevada this week to spend time with daddy. This is Ky's first vacation since I was still pregnant when we went to Texas. I was very nervous about bringing her on vacation but she seems to be handling it well. She is trying with all her might to sit up the last couple days which for me is bitter sweet it shows how far she has come but also that she is growing up and I want her a baby for as long as possible. She had therapy before we left and her therapist said she still can't eat orally because she has forgotten how to use her tongue functionally. We are going to continue with her exercises daily and weekly visits to her therapist and will hopefully have her trying to eat again in the next few weeks atleast once a day.
My goal for this month is to break even the smallest amount of dependence on her 24 hour drip. Her disposition continues to improve and she is a very happy baby with lots of silly expressions. Another quirk of her's is holding on to her tubing she thinks it's fun to tug on it. Silly girl!  

Ky has had a great week. She is growing well and adjusting to her feeding tube. She weighed 12 pounds 3.5 ounces and got good feedback from her GI and home care nurse. We are going on our first vacation with her tomorrow and I'm a little nervous but she continues to do well. She turned 3 months old on Halloween and is really starting to come into her own personality.

What an amazing journey the last 3 months have been. We are now on a very positive path with Ky. She had 2 surgeries this month both of which were sudden and unexpected. She has numerous tests, procedures, and different medications to try and help her with her choking and trouble with breathing. Nothing we tried worked but we can honestly say we tried EVERYTHING. She has a condition called Laryngomalacia. She went in on September 29th to get a Frenulectomy (her tongue clipped) because she was tongue tied. They were hoping by her being maxed out on all reflux medications and releasing her tongue that her "episodes" of choking and aspirating into her lungs and struggling with feedings and breathing would correct themselves. We kept being told this is normal she will out grow this. Needless to say she did not and I noticed her condition getting a lot worse the beginning of October with a lot of pushing on my part they saw her again. She was a stage 2 when she was originally scoped in 13 days she had gone to a stage 3/4 which is when they decided to do surgery right away. She went in the following Monday for what was supposed to be a quick surgery and she was supposed to be released the following day well she did not do well and could not handle feeds so she was put on a NG tube to be fed. She handled that for 4 days but did not show signs of improving she got to the point where she quit swallowing all together including her own secretions. She was taken off the NG tube to see if she could feed on her own which she could not. The decision was then made to go ahead with the next surgery to put in a G tube. She is on a continuous 24 hour feed right now until she can relearn to swallow and feed. She spent 10 days in the hospital this time. This was her 3rd hospitalization. We are finally confident she is going to do much better from here and know that this was the right decision. Feeding her through a tube was scary at first but I am getting much more comfortable and as of Monday when she saw he GI she was 12 pounds 1 ounce. A huge step for her since loosing over a pound in a week in the hospital.We are so blessed God has taken care of our little girl and we have switched some of her doctors and she has a great team of specialist taking care of her. She is a much happier baby now and I am thrilled to see her smile and not be in pain all the time anymore.

   So we have made it to 2 months with Kylie and are finally starting to see some progress. She has gained weight nicely and is now 10 pounds 7.5 ounces. She is 22'' long. Yesterday she got a Frenulectomy to release her tongue so she can continue to learn to swallow and hopefully outgrow choking and struggling to breathe. Her progress is very encouraging and we have a positive outlook. Maddison has been really great through the whole experience. She is a very loving big sister and has been reading books to Ky to "help her feel better". These girls are such a blessing and make my world bright every day.

This is my first time blogging. I have been interested in it for a while so here it goes. It has been an exciting, very busy, and blessed year for our family. My husband Steven and I got married March 25, 2011. We got married in San Antonio, TX while he was stationed there with the Air Force. I have an 8 year old amazing little girl Maddison who has been my whole world since the day she was born. She is just like me and a little sassy at times. She welcomed a new baby sister Kylie on July 31st this year. I am now enjoying life as a stay at home mom to my two beautiful girls. Steven and I love spending time doing things as a family. We enjoy being outdoors and are exposing our girls to as many new experiences as possible. Kylie has experienced some health problems since she was born and we have spent quite a lot of time in the hospital with her. I am grateful for the love, help, and support of my husband, Maddison, and our friends and family. I look forward to what's in store for our family.