Much better!

WOW! Ailyn and I were really sick! We had Type A influenza. Mine turned into Bronchitis and Ailyn got a bad cold/cough. After 7 days, I think I can say we are better. Ailyn, the champ she is, handled the cold VERY well!

The feeding tube has been going OK. She has some granulation of skin growing around the site. It's "normal" to grow on the inside but not out. We put steroids on the site 2x a day. They don't seem to bother her much other than being itchy.

GREAT NEWS! Ailyn got into the feeding clinic! She will start late spring/early summer. The feeding clinic team seem great. We are very excited for her to start. They say she seems to have issues with chewing and not so much swallowing. They loved how excited she gets about food and that she loves to eat. The clinic will be pretty intense. It's everyday for 6 weeks! I can stay with her but am free to leave if I choose. It's set up like a daycare, with 10 other kids in the class. Since I never leave Ailyn.....I'm guessing I will be doing this class with her everyday ;)

Thanks for all the well wishes!

Continue Reading ...

SICK

No pics, just need some prayers to help Ailyn feel better! I gave her my flu/cold. We are both feeling pretty crappy. She is doing so much better but is not back to normal. I hate when my babies are sick :(

Continue Reading ...

My 365 Blog

My Dad challenged me take a picture every day in 2011. Actually, he has wanted me to do this project for years now. I can't update daily, but I will try my best! I wanted to share it with all of you, but it's not "done" yet. Finding the time to do anything lately has been a challenge.

You can click on Timeless Portraits on the side of my blog under my Blog List.

Thanks Daddy for the challenge!

Continue Reading ...

All is good

Ailyn has been doing very well! We even see her cheeks getting a little fuller! She still is very sore around the belly. Surprisingly she does not mind the feeding tube when it's in. She crawls around while I follow behind her. Thank goodness she only needs a tube feeding 2 hours during the day. The night feedings are going ok. She is waking every hour which is very hard on me! Ailyn loves sleeping on her belly and can't right now, so she wakes in pain. Her reflux also bothers her some from the continuous feed. I'm sure it will just get better and better but I am waiting for that ALL night rest that the doctors told me I would get ;)

I took the kids away for a week to "get away". We all needed the break. We missed our Daddy, but he was able to come for the weekend. Pictures will come soon of our last minute vacation. Thank you Mom and Dad for making it possible, we had a very relaxing time. OX

Continue Reading ...

PEG Tube is in

Ailyn had her surgery on January 6th. The first 24 hours were very rough. She had a tough time coming out of anesthesia. And, then pain hit her. Seeing your baby hurting so badly is honestly the hardest thing to ever go through. She would cry and look back and forth at Aaron and I and make sure we were there.

2 hours later we took her up to her room. She was able to get morphine which was the miracle drug for her. We gave it to her every 4 hours until we knew she wasn't in severe pain.

AND, believe it or not the picture above was the very next day! Ailyn is the strongest kid I have ever known. She still has to take Tylenol around the clock for being uncomfortable but overall she is doing so well.

The nurses are teaching us how to use the feeding tube. That part is easy....it's the monitor we worry about. It's different from the hospitals so we will go home tomorrow blind and have to try to remember what home care has taught us.

We have to turn that flower piece 360 degrees twice a day. She doesn't even flinch! Even the doctor who turned it this morning was impressed! We also have to clean the site twice a day. Surprisingly she lays still while we do it....pretty sure it's because it is very sore and she knows it will hurt if she moves ;) In 3 months she will be getting a "mic key button" (not sure if I wrote that right) She will not have the long tube hanging out, instead it will be a little "button" that the feedings will go into.....much easier and doesn't look so big. The stomach has to heal for those 3 months. It will be an outpatient procedure.

We keep a onsie on to keep her from pulling the tube......because she does pull it. As you can see in the picture above, she scratches her whole belly up when we are changing her. The white stuff around the flower piece is a Maalox/Desitin mix that helps the stomach acid that can leak out burn her skin.

The feedings were started on day 2 in the late afternoon. She was starving for a bottle and was asking the whole day. It was so sad to say "no"! First they gave her pedialite and after she tolerated that well, they began a very slow feed of the pediasure. Since she did great with that they started a full 10 hour feed from 10pm- 8am. And, 2 hours at nap. This will be our home schedule.

If all goes well tonight, we will be able to go home tomorrow!! I have to admit, I am very nervous about going home! It is like the NICU, you depend on the nurses to help, then go home and have to do everything on your own. Scary!

We begged the nurse to allow us to take Ailyn in the hallway so Camden could spend some time with her. He misses her so much and has been very worried about her. The first thing he did was hold her and open her sleeper to check out her tube. He was very gentle and whispered "it's going to be OK babydoll" He melts my heart!!

I know some of you have had the same questions so I will try to answer them, and please ask away if you have anymore!

How long will she have the tube?- Not sure! The GI doctor is guessing about a year. It took us 7 months to get an evaluation at a feeding clinic, that appointment is not until January 28th. We won't even start the clinic for a few months after that first evaluation!!

How are you going to keep her from pulling it out?- Yeah, good question! The onsie seems to work great! And, we were told kids think of the tube as a third leg after awhile and don't even bother with it. I didn't believe this before surgery, but I do now. I already see that she accepts it being there.

Can she get it wet?- YES! After 2 weeks, she will be able to bathe and swim like a normal child.

Are you worried she will not want to eat real food?- YES! In fact her OT is too. I think with us being aware of that, we will make sure she doesn't get dependent on the tube. I am actually impressed with how much whole milk she is drinking already with getting fed with the tube as much as she is in here. She even ate a small dinner! Since Ailyn loves food, I am guessing that will not be an issue.

THANK YOU TO EVERYONE who has been praying and helping us through this. We are so lucky to have so many wonderful people in our lives! All the Facebook thoughts and prayers have been so great to read! Ailyn is a very lucky little girl to have so many fans. Thank you!! OXOXOXOX

Continue Reading ...

Surgery

Ailyn had her PEG tube surgery January 6th. I planned on writing a whole post tonight but Ailyn had other plans and wanted a lot of Mommy time. I know many of you are asking how she is, we appreciate every ones concerns and thank you very much for all your prayers. Hopefully tomorrow I can update. Overall, she is doing amazing! She amazes us at how strong she is! Check back tomorrow for an update!

A&A

Continue Reading ...

S Family preview

Growing up I had much younger sisters. We always got along great but I always felt like I was much older than them. I remember saying that I wish we could have kids the same age, thinking my children were going to be much older. Boy, was I wrong!! Now that we are older, age doesn't even matter. It's great to have sisters that I can honestly say are my best friends.

Becky is the middle sister, 8 years younger than me. Growing up I was tough on her and treated her rotten. I look back and feel so bad for those years! And, hope that I have made them up ten fold now. I love her to death! I am so proud of the person, wife and mother she has become. Greg is an amazing husband and father. I am very honored to call him my brother. And, EJ.....WOW words can not express how much I love this little nugget! He is adorable, funny, VERY smart and O so charming. Being the same (adjusted) age as Ailyn makes it so fun for me to have a child that close in age with Becky!

Living 8 hours away is very tough, but I cherish every visit I have with them. And, I can not wait to meet their new little princess this spring!!!

I love you guys! Enjoy your preview!

Continue Reading ...

Our Holiday Trip

**To make the collage bigger, click on it *****

This Christmas was hands down one of the best yet! We drove 8 hours "home" where both of our family live. My sister even flew up with her two children. It was great to be together again after being apart for so long. My Mom went above and beyond to make the holiday special for each of us. The kids had a blast playing in the snow, wrestling, cooking with PopPop and much much more! We will forever cherish this Christmas.

To keep Ailyn as healthy as possible, we did not take her out much. Thank you to Aaron's Mom, Auntie B and Carlos for coming over to see us. We didn't get to spend much time with them but the time we had was fun.

SURPRISE! My Mom surprised my sister with a baby shower. Since she lives far away, we were not able to give her one when she was pregnant with Kai. Everyone had a great time and it was fun seeing everyone!

Our 3rd Christmas was with Aaron's Dad side of the family. We always have a blast with them. I have many great sister in laws and we get along great. Even though we didn't get to see half of the siblings, we are grateful we got to see as many as we did! Thank you Kevin and Annie for letting us spend the night!

I have hundreds of pictures to edit from the many photo shoots. So check back for some very cute pics :)

Continue Reading ...