NICU reunion

When I got the reunion invitation in the mail I was like a little kid. I was so excited to see all the doctors, nurses and NICU friends again.

Seeing the doctors that helped save Ailyn's life is a feeling I can't explain. You want to hug them over and over and thank them. But, I didn't do that.....I wanted to.

Pam was one of the many nurses I was hoping to see. You could always count on Pam's cheery funny mood to help you get through your NICU stay. The NICU is a very quiet place, very sad for some. It was nice to have Pam remind me that there are good times ahead. Thank you again, Pam!

All the doctors remembered our sweet strawberry. They were very interested in hearing her medical history today. Yes, it was a very long conversation but they listened like they cared.

It's hard to forget the nurses who took time out of their VERY busy work schedule to talk with you. Even almost 3! years later I can recall many conversations I had with the nurses and how they helped us get through some very emotional days.

Ailyn was confused why I was handing her over to so many people! But, by the end she was holding her hands out to be held. I think she felt the love.

Nurse Jane has a special spot in my heart. I hated to leave Ailyn every night. I hated that I was not going to see her for 6 hours. It hurt so much to leave. I would make sure Ailyn was sound asleep then sneak out. One night Ailyn was not going to sleep and crying. She wanted to be held. It was 1am and I was exhausted. Jane took Ailyn in her arms and rocked her. Right then I knew she cared for Ailyn as much as I did. I was able to go home. I am crying writing this, it meant that much to me. Thank you, Jane!

For all the nurses we did not get to see. THANK YOU! I hope to bring Ailyn back to visit soon. There are many of you I would love to hug and say "Thank You" in person.

And, getting to see moments like this (above). Seeing Callie show off for Dr.Mike gave me chills. Knowing where Callie came from and where she is today is an amazing story. It was awesome to see Dr. Mike so proud.

Of course it was great to see Callie again! And, getting to see our NICU neighbor (below). We even saw an old neighbor who has a 32 weeker now.

We are very proud of St. Joes and will forever be grateful for the care they put into our babies!

Ailyn will always know the people who saved her life. We will never forget. We wouldn't have our sweet, sour, funny, smart, mischievous, snugly, petite, spoiled MIRACLE here with us today.

THANK YOU AGAIN!

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March Of Dimes time!

It's that time of the year again! We will be walking for the March Of Dimes again this year. I will be putting a link on the side bar so you can donate anytime until the walk. And, if you want to walk with us PLEASE DO!! We will be walking in Harford County. BUT, you DON'T have to do the actual walk to help raise money. You can sign up as a walker and raise $$$ wherever you are.

Here is our link!

http://www.marchforbabies.org/personal_page.asp?pp=3582980&ct=4&w=5248660&u=StrawberryAilyn

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The Gtube

In honor of Feeding tube awareness week, I thought I would answer the #1 question I always get asked. How does the mic-key stay in her belly?  The mic-key has a "balloon" port. I use a syringe to fill the balloon with 6cc's of water. The water needs to be changed every two weeks. And, the mic-key every 3 months.

The balloon part is in her belly. It would be pretty hard to pull out, even though I have heard many children do!

Home care sends 6 cases of 24 cans once a month. Our insurance covers the cost. Which is very nice since before the tube was placed we were paying $150 a month buying it ourselves!! We chose vanilla since it has the least sugar. And, she has to have the one with fiber in it since she has a lot of constipation issues.

We feed her from 10pm to 8am. Ailyn has to be SOUND asleep or she will take out the tube and feed the bed. She gets 2 cans, 16 ounces. She has an "extension" tube that we insert into the mic-key (not the balloon port). Then we hook the bag to the extension. At first it was confusing how to work the monitor. We felt so nervous that we would do it wrong. But, now I can work it in the dark.

If Ailyn wiggles and rolls she gets wrapped up in the long tube. I always wake to find her tangled or the alarm will go off telling me so. There has been many many times that the tube comes out and the formula spills out slowly on the bed. Try waking up in a puddle of pediasure.... or if the extension is open...... her stomach contents. Not so fun! They don't tell you that part when you sign up for this ;)

Overall the feeding tube is easy to use. The care is low maintenance. Traveling with the tube is very easy. We choose to use the travel pack instead of the IV pole. We were feeding the bed too many times. The tube was easier to pull out with the IV pole being so high. So one day Daddy came up with the idea of using the travel bag. So far it's fixed the issue! GO Daddy!!

Check back tomorrow when I answer some more questions!

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Feeding Tube Awareness Week

This week is "feeding tube awareness week"!  I never thought I would have to raise awareness for such a thing. As many of you can remember I had so much anxiety to go through with a feeding tube for Ailyn. I was afraid of it. I did not know anyone with a feeding tube. I had never known much about one. The GI was great and explained it all, but as soon as I left the office I felt I forgot everything she had told me.

Daddy and I talked very long and hard about it. We decided to hold off as long as we could. We tried to teach Ailyn how to eat and tried to get as much Pediasure in her as possible. But, we had no luck. She had problem swallowing solids and she drank her bottles too slow. When she fell off the growth charts I called the GI and said "We are ready".

The surgery required a 3 day stay. They placed a PEG tube for the first 3 months.

Recovery was HORRIBLE for the first 24 hours. I felt SO bad for her. Morphine worked very well to knock her out but when it wore off she was so sore. BUT,

1 day later I got my old nugget back!! She amazed me. She was still very sore for a few weeks but after that it was just like another "leg" on her body.

For the first few months the site would grow "granulation tissue" which looked disgusting.

Granulation tissue is the perfused, fibrous connective tissue that replaces a fibrin clot in healing wounds. Granulation tissue typically grows from the base of a wound and is able to fill wounds of almost any size it heals.

  At 3 months she got a mic key button (a Gtube). SO much easier!!! Except...... I have to change it myself!!!!  The first time took me a week to finally do it. I am part of a Facebook feeding tube support group. One Mom posted a video of her changing her sons Gtube. If it wasn't for that video, I would have had to take her to the doctor to change it for me. Now a year later I am a pro at it! The Gtube needs to be changed every 3 months and the water balloon needs to be changed every 2 weeks (stop back later in the week for that post) As far as infections, Ailyn has had 2 minor infections. The doctor gave us a few tubes of medication just in case it happens.

I get the same questions all the time.

How long will she have the feeding tube?
    Not sure! It all depends on Ailyn. We are trying hard to get our insurance to cover the feeding clinic. It's an intense program that is every day 8am-4pm for 6 weeks. For now we are waiting on an feeding OT evaluation at the local pediatric hospital where Ailyn has PT and speech. In the past two months she has been doing awesome with swallowing food. She begs to eat lunch and dinner. My goal for 2012 is to get this feeding tube OUT!

Does she try to pull it out?
     YES! But, she can't. Well..... I am sure she could if she really tried but it starts to hurt and she stops. I will blog more this week on the Gtube. I will explain what it looks like. But, it has a balloon filled with water. She touches it all day long. It must itch because she is always scratching around the site. She has to have the port open. When we close it, she opens it right back up. Nothing can get in it so it's safe.

How much weight has she gained since she got the tube put in?
     17 pounds!!!!!!!

Check back soon for another feeding tube post!  I want to help others understand what I didn't going into it. Hopefully none of you will ever have to deal with a feeding tube. But, maybe you can pass on my info to others who may need it.

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The Diagnosis

I have been trying to write this post for a few weeks now. Every time I go to write, I can't do it. I just have to get it over with and write.

Ailyn was diagnosed with Cerebral Palsy. I knew this was possible and I am the one who was pushing for a diagnoses. But, even with knowing when I heard the doctors words telling me she has cerebral palsy, it hurt. It hurt because I hate that Ailyn has to fight for everything. I hate that now she will have to fight all her life. I hate that our life is full of therapies and doctor appointments.

After a few weeks of worry and stress about the future, I can finally say I am ready to talk it out. Ailyn is such a happy kid, always smiling. Just seeing her loving life despite her handicap makes me realize she will be OK.

We don't know what type of CP she has. She falls under a few of them actually. The most affected is her balance. Although, it's getting better with more therapy she still can't balance on her own for more than 15 seconds. She has some low tone in her trunk and some high tone in her ankles. The" good" thing about CP is it will never get worse. Her issues today are what she will always have. With therapy she can learn how to control herself.

As far as walking, she is not yet. BUT, SHE TOOK TWO STEPS yesterday!!! I was so happy to see this. It means she CAN do it and WILL. With all Ailyn's milestones she has to learn to coordinate herself.  Her movements look so unorganized until she learns the milestone. Once she gets the movement down, her brain remembers it and she has no problems. Not sure if I explained that so you could understand..... you have to see Ailyn to "get it".

With the CP diagnose we were able to get more speech. So she gets speech twice a week. She is still very much speech delayed. And, uses signs to communicate over words. She has about 10 words and over 20 signs.

Feeding is still a huge issue. In the past week she has been doing very well and even had a good weight check. I had her reevaluated with the feeding program. I'm hoping the CP diagnose will help insurance cover more of the feeding clinic. We are also waiting to have an evaluation with an OT feeding therapist.

I'm trying to be positive about all of this. I know she is getting all the help she can right now. Our schedule is jammed pack every day. I see improvement with all her therapies so this helps to keeps me positive.

THANK YOU for all your support. It means so much to me!

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pretzel making!

Ailyn loves going to Miss Sally's class.

Today we made pretzels

Ailyn really liked making them! She couldn't wait for her turn to mix.

"A" for Ailyn!

I was excited for her to try a bite

She sat in her chair during this whole project!

She loved the prezel and cried when I took it away!

STAY TUNED FOR AILYN'S MEDICAL UPDATE

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Happy 7th Camden!!!

Camden turned 7 today! He woke up expecting the house to be decorated. Because last year I had the dining room decked out for a birthday dinner. He looked very bummed out. Until I told him he had a gift. We bought him a Kindle Fire. He LOVES it.

I told Camden we can do anything he wanted on his birthday. He chose to go to the aquarium. I had a sitter lined up to watch Ailyn for the day. But, Camden said "It's my wish to have Ailyn with us" So we took the high maintenance little nugget with us. Who by the way LOVED every minute of the aquarium.

It was late in the day so the place was not crowded. We could take our time at each exhibit. The only thing we missed was the dolphin show going so late.

The weather was amazing today! Driving into the city the temp was 67 degrees!!!

We ate at Phillips Seafood. Besides Ailyn crawling on the table and almost knocking my wine over 6 times, we enjoyed our meal.

Happy Birthday Camden!!! I can't wait for your party next weekend!!!

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Our December

I can't believe it's been a month since I have updated! We have been busy with the holidays and doctor appointments. NO "me" time to sit and write. As I write this, Ailyn is trying to feed me a Hershey kiss. I have a lot of medical updates for Ailyn but will make another blog post on that. For now, I will fill you in our crazy busy month!

Meet "Ollie" our newest addition to our family. We adopted Ollie from Target. He spent the entire month doing fun things for the kids to see each morning. Ollie reported back to Santa each night on Camden and Ailyn's behavior. Camden fell in love with Ollie from day one and was very sad to see him go.

Ailyn had her Christmas party at school. Art projects are always "fun" with Ailyn. Most ends up on the floor or in her mouth. I am not even sure if she enjoys doing it but we try every time. 

This year we started a tradition with our friends. A night of making reindeer food and watching Christmas movies. This year we had Elf playing. The kids enjoyed this project so much! I know I will look forword to this every year!

The kids were in the pageant again this year. Camden goes to Sunday school every Sunday and was looking foreword to this all month! It was very cute. My "angels" looked very sweet.

On Christmas Eve we said goodbye to Ollie. Camden was hesitant to touch him at first since the rule is you are NOT allowed to touch. The elf will lose his magic if touched!! Camden took this very serious. One time Ailyn knocked him over. So Camden wrote a letter apologizing. Ollie came back the next day with a broken leg and was on a heart monitor (LOVED having Ailyn's NICU stuff) but he didn't lose his magic.

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Ailyn has no clue about Ollie, did not grasp the concept at all. Maybe next year ;)

The boys always follow Santa on NORAD.

 Before bed we had to feed the reindeer!

And, put our cookies and milk for Santa!

Ollie must have told Santa how good they have been!! They both sat looking at their gifts for a few minutes before asking to tear them open.

Ailyn opened every one this year all by herself. She even threw away each piece of wrapping paper before signing "more" for the next gift. My girl for sure ;)

Camden loved all his gifts! We love watching him get so excited to open each one.

My Mom made Ailyn's favorite babies knitted clothes!!! They are adorable!! A favorite gift for sure! Ailyn's babies always had to be naked.... no more! She loves having me dress them up.

Camden has organized his toys every year since 2 years old!!! Ailyn tried knocking them all down and thought that was a very fun game. Big brother did not think that was a fun game.

To end our night we had good friends over to exchange gifts. The kids had a blast with each other and we enjoyed some wine and Chinese food.

MERRY CHRISTMAS AND HAPPY HANUKKAH TO ALL!!!!!

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