Go Team Ailyn!

We felt the love today!!! To say I was overwhelmed by the love and support you all gave us would be an understatement. All day long I was receiving texts and tagged posts on Facebook. It was an awesome feeling to know my Ailyn is so loved by so many. THANK YOU ALL SO MUCH for wearing purple for Prematurity Awareness Day!

My purple nugget!

Becky, Evan and Philomena

Keyla and baby nugget Zuri

Brooke

Nicole

Kira

Cadence and Philomena

Jaimie and Kinsley

Athena

Brylee

GiGi

Miss S!

Kenzie

Heather

Meaghan

Malia

Shari, Sophia and Rebecca

Carter and Lukas

My girls

Jaidyn

and Miss Brylee put on purple again for bedtime!

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Prematurity Awareness Day

Today, November 17th is Prematurity Awareness Day. In honor of today, I am going to introduce you to some of some good friends we have met along our journey and share my story. 

I was on bedrest my entire pregnancy with Ailyn. 28 strait weeks. It started with overstimulation from IVF, then preterm labor started at 14 weeks. I went into labor on a Saturday. Aaron had just left with Camden to go to his office. I knew something was off and warned him. I got up to take a shower and in the shower felt a terrible pain. I knew to call 911 but had to get to the phone. I thought for sure I was pushing Ailyn out. The pain was unreal. The paramedics came and got me into the ambulance. My water broke in my driveway. The ride to the hospital was a blur. Aaron met me at the hospital and my good friend came to pick Camden up. The doctor could not find Ailyn's heartbeat and my abdomen was filled with blood. They rushed me to the OR right away. Aaron was told to wait to hear Ailyn's cries. She didn't cry. I had a severe placenta abruption.

Ailyn had to be brought back to life. The amazing doctors and nurses preformed a true miracle on April 18, 2009. Ailyn did not move for the first 12 hours of life. The doctor came in and told me that "babies this sick normally never make it and to prepare for her death". But, Ailyn fought hard. She had a grade 1 brain bleed. Her kidneys and gut took a very hard hit. For the next few weeks, Ailyn peed strait blood. At 1 month old she had to have PDA surgery. For 75 very long days, she fought very hard to come home to us. I thank EVERY NICU nurse and doctor for taking such great care of our Strawberry. I will never forget them and plan to tell Ailyn about her first friends.

And, here we are 2 1/2 years later. Ailyn is an amazing little girl. Always happy and still shows us how very stubborn she is. Ailyn has developmental delays, has high blood pressure due to kidney disease, Esotropia ,is far sighted and has a astigmatism, Ailyn also has a Gtube and will wear leg braces. None of this stops Ailyn.... she proves to us each day that she will go very far in life!

We are reminded every single day of Ailyn's prematurity. I wish I could forget and move on. But, when Ailyn has daily struggles due to her extreme prematurity, that is not possible. I hope by sharing Ailyn's story, I can educate people on the severity of prematurity.

MEET OUR MICROPREEMIE FRIENDS!

Callie 24 weeks 1 pound 5.3 ounces 11 3/4 inches

Callie is one of Ailyn's NICU roommates. I am so glad we stayed in touch with Callie's family. I love watching Callie grow up. She amazes me with all she does. Such a smart little girl with an adorable personality.

I "met" Michael's Mom on a micropreemie Facebook group. Kristen and I have never met but I can honestly call her a "good friend". The bond micropreemie Mom's have in indescribable. Kristen has been so much support for me. Always there to cheer Ailyn on and give awesome advice. And, Michael... what a miracle!!! He is such a fighter. Every time he meets a milestone, I cry along with Kristen. He took his first steps months ago, I felt so proud of him! Michael has come so far and like Ailyn still struggles daily with prematurity issues.

Kensley born at 23 weeks, 1 pound 8 ounces and 12 1/4 inches long

Kim called me the day I joined the micropreemie group. We talked for 3 hours. It was the first time I had talked to another micropreemie Mom. I even got to talk to her miracle Kensley.  If I post a status about Ailyn having a rough day, Kim will message me and give me advice. She always lets me know that Kensley once went through the same issues and got through it. It is awesome to have found a friend like Kim.

Shane 24 weeks, 1 pound 12 ounces 11 inches long

Shane's Mommy messaged me about a question I had the micropreemie support group. Our babies struggle with feeding problems and a lot of the same developmental issues. I love following Shane's story. He also took his first steps a few months ago and I cheered out loud.

Prematurity sucks! Prematurity is the #1 killer of newborns in the U.S. In the U.S., 1 out of every 8 babies is born prematurely. Over 13,000,000 babies per year are born early with 500,000 of those in the U.S. alone!

So today, Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive.

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Lights!!

Ailyn has a vision teacher through the School of the Blind. Anne Marie has worked very hard with me to get Ailyn to wear her glasses. But, Anne Marie has done much more than that. It was her idea to get a second opinion with another eye doctor. She even comes along with us to her appointments. I am very thankful to have her part of our team!

Anne Marie has access to a really neat light sensory room at the school for the blind. So today Ailyn and I got up early to play. It was a really neat room. All sorts of lights and vibrations. Ailyn really enjoyed it.

We decided to go with the new eye doctor. The other doctor was not being proactive enough and I always felt like we were at a standstill with very little answers. The new doctor gave Ailyn glasses to wear for a couple months to see if it helps with her Esotropia (eye crossing). We put drops in her eyes to dilate BOTH eyes for one week. And, now we are putting the drops in her good eye TWICE a week. This SHOULD make Ailyn want to wear her glasses. Her glasses will counter act the effects of the drops. The drops enlarge the pupil and blurs her vision. The glasses reduce the blurriness.

It's been a very big challenge to keep the glasses on Ailyn. We started with only wearing them while we read books. She learned very quick that she HAS to have them on to read books. Now I follow her around throughout the day picking the glasses up off the floor and putting them back on.... every 5 minutes. It's not getting easier. I think she likes them because she does ASK for them to put back on. This is where Anne Marie has been very helpful and supportive. She has been my cheerleader. Texting me throughout the week to see how it's going and giving me ideas. She comes over to the house once a week also.

With persistence and patience on my part I hope Ailyn will start wearing her glasses full time very soon. If not I will have to start drinking.

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Fitted for leg braces

Today Ailyn was finally fitted for her leg braces (AFO'S)

Have I ever told you how hard is it to keep Ailyn still for 1 minute??? So just imagine 1 hour in a chair! She threw every toy handed to her. Forget trying to keep her glasses on. Toys became dangerous objects.  The only thing that helped was her favorite Iphone app.

I never thought I would be this excited about leg braces. Even though I have to admit I freaked when I saw they go all the way up the leg. I must have misunderstood when she explained them to me. But, the thought of the braces helping Ailyn walk made me relax. It's temporary..... just like the feeding tube.... right??

There were so many choices to design the braces. I was overwhelmed and wish Ailyn could choose her own style! I think I did well.

Having her stay still to form the cast was the hardest part but overall I think she did very well. She had no clue what we were doing to her. All she cared about was getting out of the chair.

I showed Ailyn my pick and asked if she like it. She shook her head "NO" but I took it as a yes and went with it regardless. She says "NO" to most things.

I didn't wait for the phone to focus before I snapped this pic of Ailyn and her PT. But, I love it and decided to share it to have it forever. It's the memory not the clarity, right?

The braces will take 2 weeks to come in. I know they will help our Strawberry. I'm excited to see her try to walk with them. And, hopefully...just hopefully I can have a blog entry with Ailyn's first steps. I am teary thinking about it.

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Together again

Today we got together with some of our oldest friends.

The kids really enjoy each other and we love to sit and watch them interact. Even if two of them get in trouble together.

Even though there has been some space in time that we have spent together, you would never know. I love that.

I love that we have history together way before kids and now having kids close in age to grow up together.

I love how much we love each others children like they are, are own.

We can sit back and relax, drink some wine and reminisce over old memories. And, we have some great memories together.

It's great to have great friends that deep down even if you go through tough times, they will always be there for you. Today was a great day with our oldest friends.

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Where we have been

Where did October go?? We started out the month taking a quick trip "home". We took the kids to the circus. SO FUN! Camden and Logan went right home and made their own circus.

Camden read to PopPop and Nana for the first time. Camden is doing very well with reading.

We all got our Philomena snuggles. Such a happy easy going baby.

We got home and went to Ailyn's field trip at the Zoo. I enjoy these girls each week. I am going to miss them so much when the class is over!!!!

Ailyn enjoyed the Zoo. She wanted to hold all the animals.

The Zoo wore Ailyn OUT!

We got back in touch with some good friends.

Camden had a Halloween themed sleepover with his buddy Connor.

We live for the weekends. It's our only time we can spend as a family these days. We took a long Sunday drive to a pumpkin patch.

Ailyn feared the hay ride and was praying that it would be over soon.

She ended up having a great time.

Big brother was such a helper. Since Ailyn can't walk yet, he wanted to pull her in the wagon.

Ailyn has finally been wanting to use her push toys!!! It's so awesome seeing her UP and trying to walk. She has PT twice a week now and it's really helping her out so much.

Ailyn is getting bigger! Her GI was thrilled with her weight this month! She was almost 23 pounds and is 32 1/2 inches.

Another family day. I am going to miss being able to get outside!!!

Camden has been doing great in school. He seems to really enjoy it.

Notice one shoe off?? She always takes off just one....

Ailyn is a great multi tasker....she gets that from her Mommy ;)

Ugh...the glasses.... that is a whole other post to come. Above is Sandy, her teacher from Infant and Toddlers. She came to see Ailyn at Two and You.

Ailyn still doesn't play with other kids, but enjoys parallel play.

This year Camden was a white Ninja. He took this role very serious.

Ailyn was a bumblebee. A very cute bumblebee I must say!

I have missed blogging! I always have ideas for posts and never have time to sit down and write. I have not picked up my camera much. I miss taking pictures! I have kept up with my 365 blog, so check it out!

THANK YOU to all who have asked where we have been since I haven't blogged! We are fine, healthy....just super busy!!!

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