Skylar's glasses and fairy wings!

Just an update!!!

Skylar is just had her 9 month birthday...So cute. She is such a little 9 month baby girl. Her current weight is 12 pounds, not very much. Her biggest struggle since she has been home is keeping food down and gaining weight. We recently put her on night feedings, which is similar to an iv pump that runs all night and pumps so much food per hour into her tummy through her mickey button. Some nights it doesnt bother her while others I have to turn it off because she will wake up puking, poor baby. She has a great team of doctors and occupational therapists that have been helping us come up with new ideas and ways to get her to eat and keep it down. Personally, I hope to get her eating some yummy foods like banannas and pears so she may like her birthday cake for her 1 year that is not too far off. On a good note, Sky's lungs are doing so well. She is on an 8th of a liter and soon to be on a 16th, which is nothing! She is so tuff! Some of you may not know that we added an addition to things on Skylar's face, glasses. She is very far sighted like her daddy and needs to wear glasses. After a long struggle to find her glasses small enough for her little face we found some little pink ones and they are adorable. They make her pretty eyes look even bigger! I will be sure to post a picture of her and her new glasses.
As for Ryan and I we are both very busy, we are back in school and Ry at his new job with GEICO. He works all week and has the weekends off, thank goodness! Fortunatly, we are very excited to be taking our first trip as a family very soon! I hope Sky does well! All and all we are doing very well. Skylar continues to be our amazing little miracle and a very happy baby too! We are so lucky to have her!

Random new photos!

Just an update!

Wow, Skylar has been home a month! She is doing so good. She is so precious I just want to squeeze her all the time. The latest news with her health is she is going for another small surgery at the end of this month to get a mickey button to replace the tummy tube. While she is under they are going to scope her to see if there are any internal causes to why she vomits 85 percent of her feedings. Fortunatly, she is still gaining weight. Her little lungs still need sometime to grow, she is still on oxygen and has a little ways to go. Skylar is still full of attitude and spunk. She loves to talk to us, well make noises, laugh and cry when we are not giving her our full attention! We love it...her attitude is what makes her our little fighter. We will talk to you all soon and post pics!

So cute

Skylar has been home 3 weeks as of yesturday. So far things are going pretty well. She and I went on our first car ride to the doctors alone the other day and she was so good. Luckily she slept almost the whole way which was a 45 minute drive there and back. We went to our first Resturant, Macaroni Grill on Friday and she did very well...no tears just curious looks the whole time. Her oxygen is nothing to me it's just another part of her body and where she goes it goes. The tummy tube isn't bad either only at feeding time and that is not possible in public not yet anyway. I'm just not that comfortable with it.....So I plan my time away to only be between 2-3 hours so I can go home and feed her. As for Daddy he has been very busy with his new job and studying. He spends time with her at night when he gets home from work, but other than that he is gone from 7 to about 530 and he misses her soooo much. He catches up with her on the weekends. Skylar as most of you know is a daddy's girl! She loves it when daddy gets home and starts talking to her she always smiles and laughs with him, it's very cute. That is not to say that her and I don't have plenty of fun during the day I just know that she misses her daddy.
As for her health, she is gaining weight, keeping her food down better and breathing fine. Her oxygen did have to go up a little but without the lasix and breathing treatments things are just a little harder on her little lungs. Her development, mentally is good she is with in the norm of her age and she is really learning to use her hands and feet. Her favorite thing lately is eating her fingers and kicking. She holds her head up really well and we are working on rolling over and standing up. Ryan and I are very proud of our little fighter. We will be sure to let you know more in a couple of weeks, hopefully she will be at least a pound more!