Happy St. Patrick's Day

Not much has been going on since the last update. There are a few pics from St Patrick's Day and then we had a Poster Night for March of Dimes. Hillcrest Hospital asks for nicu graduates to come and make a poster about their nicu journey and then they display them during the March of Dimes walk. Tim and I decided to make a poster this year. It was nice to see some familiar faces from our nicu journey. It was also nice to see how far Avery has come since she was born. It was difficult to look through the pictures but it made us so proud. Avery really is the strongest person we know. She has been through so much and continues to smile.

For those of you that want to learn more about the March of Dimes March for Babies, click here:
https://www.marchforbabies.org/march/personal_page.asp?pp=4767555&ct=4&w=6929576&u=sb4878&mfb2015=1

One of the coolest things Avery does now is give us kisses when we ask her to. Avery kisses are THE BEST!

 I love when Daddy reads me stories

Mommy and Daddyspent  got all these toys for $.18...yep, 18 cents! They were on clearance at Toys R Us for 3 cents each!

It was neat to see how little I used to be. Use that pic Daddy!

March of Dimes poster night at Hillcrest

This is the poster that Mommy and Daddy made of my journey! 

This is what Mommy and Daddy wrote about me. They love me so much!

The finished poster that will be displayed at Hillcrest for awhile (so all the nicu nurses can see it and catch up with the babies they took care of) and then it will be displayed at the March of Dimes walk on April 26.

Wave your hands in the air like you really don't care

This is what I normally do at Grandma and Grandpa S's house. I spill all the crayons and then act cute like I didn't do it!

When I get mad, I throw everything out of my crib, including my socks!

Do I look happy to be all bundled up?

This picture is blurry but my eyes look so blue!

Double fisting already? yep, I am a pro at drinking

I got my March Citrus Lane box. Chewie made sure I didnt drop any of my cookies. If you want to order Citrus Lane, use this referral code. 

https://www.citruslane.com/invitedby/Susan.Svitak.2257762

You get money off of your subscription and Mommy gets a credit to use in the Citrus Lane store :)

I love giving kisses now!

Kisses for Daddy!

This is a picture of me driving my car, while pooping. I bet you cant do that!

My favorite puppy in the whole wide world. Doesn't he look thrilled?

Having fun with Daddy

Tickles! Daddy says "belly!" and i automatically cover my belly because I know tickles are coming.

More fun with Daddy

Fun with Kaitlin..and shrimp. I actually seemed to like shrimp!

Petting Lily. She is a good cat. She puts up with me smacking her and sitting on her.

Tickles with Mommy. Sophie photo bombed this picture.

More shrimp!

Happy St Patrick's Day. My t-shirt says Daddy's Lucky Girl. I am one lucky girl to have daddy as my daddy! He is great.

It was Mommy's birthday this week. I took Daddy's credit card and sent flowers to her work!

More doctors appointments

Avery had a gastro appointment last Friday. The reason we were going was because Avery has not been gaining weight. She has been stuck at 16/17 pounds for months now. She was given the dreaded “Failure to Thrive” diagnosis.

The appointment didn't go very well from the start. Her appointment was at 8am and we weren't taken back in a room until 8:30. Trying to keep a 2 year old occupied in a waiting room is tough. Then we were taken back and they told me since they were running behind (which I believe we were the first appt of the day so I don’t know how they could be running behind) they would get her height and weight after we saw the doctor. We then saw the resident and I explained Avery’s extensive medical history. The resident then said she was going to get the doctor and then be right back. After 20 minutes of waiting with no one coming back to tell me what was going on, I have had enough. I put my coat on, Avery’s coat on and texted Tim, telling him I was waiting 3 more minutes and leaving. After 3 minutes, I got up, put Avery in the stroller, started pushing it out the door as the doctor and resident were headed into the room. They asked where I was going and I explained that I had no idea what was going on, it was already 9am (an hour past our appointment) and we hadn't even seen the doctor yet.  

I was quite bitchy to the doctor, so much so that I even contemplated emailing her afterwards and apologizing. She remained nice to me, despite my behavior. She had a few recommendations.

1.       Avery should see the dietitian. I said I thought that’s why we booked this appointment here at main campus, that I was told they sometimes pull the dietitian into the room when you have a gastro appointment. They said the dietitian wasn't here today. I also said that we tried the feeding clinic and they kept wanting us to force feed Avery through her tube every 3 hours. I explained that Avery couldn't handle that much food, that we were stuffing her and she would just get so fussy and cry for hours that she would burn off all the calories that we just forced in her by crying.

2.       They recommended we follow up with genetics. I explained to them that last time we went to genetics, they tested her for some random Kabuki syndrome and that it came back negative and we were billed $3000 for the test. I had to fight with billing and the genetic doctor to get it re-coded. If she does have something genetically wrong with her, most likely its something that cannot be corrected or prevented if we would have another child so I personally don’t see any point in getting her tested for these uncommon disorders.

3.       They want her to have another swallow study done. She had one done last year and it showed she possibly aspirated once (when liquid goes into your lungs). I explained to the gastro doctor that she already had it done and that there were no diet restrictions because her test came back negative

4.       They are starting her on an appetite stimulant called Periactin. She takes it once a day, in the evening because it supposedly makes her drowsy.

5.       They want her to get a bunch of blood work done to make sure all of her numbers look good.

The doctor said she wants to do all these things to prevent Avery from having to get another g-tube. I told her there is no way we are getting another gtube. Yes, Avery  isn't gaining weight but she has {eventually} been meeting every milestone. Yes she is small but she has my genes and was premature. I never expected her to be big.

We decided we are going to start with the blood work and appetite stimulant and take it from there. I realized after we left the appointment, she was never weighed or measured so I am not sure how they are going to tell if she is growing or not. They are so concerned about her weight yet they didn't even weigh her?!?

We gave her the appetite stimulant on Friday night. It’s a liquid and we put it in a syringe. They wanted her to take 5ml of it. Luckily she doesn’t mind the taste so she did really good. She woke up at 2:30am that night/morning screaming like she was in pain. Tim said she was up for over an hour. We decided to decrease the dose the next day because we believe 5ml is too much. Normally you give 5ml of medicines for babies who are 24 pounds. She is only 17 so I don’t think its going to hurt her to decrease the dose.

On Monday Avery had an audiology appointment. She has been pulling her hearing aids out for a few weeks now. They looked at her hearing aids to make sure they fit well. They also testing her hearing with her hearing aids in and also with her hearing aids out. First they tested them with it in. I think she did pretty good. Then they tested them with them out and I think she did better with them in. Though she was getting very fussy and tired when they were testing her without them in. It was  during her usual nap time so she wasn't very happy or cooperative.

After the audiology appointment, we were near the lab so we decided to get her blood drawn. She had orders in for 12 different labs. Tim went back with her and I waited in the lobby. Ten minutes had gone by and I didn't hear any crying yet. I started pacing because I thought something was wrong. All of a sudden Tim and Avery walked out. She didn't cry at all even after 6 small vials were taken from one arm and one large vial was taken from her other arm. I couldn't believe it. She is a trooper.

I just noticed that Avery's blog has over 70,000 page views! I feel so fortunate that so many people care enough to follow what's happening with her. We appreciate your support.

 I love brushing my teeth. Really, I don't but I do love playing with the water used to rinse my toothbrush off.

 Yep, Still brushing

I love this picture! These are some of my favorite people in the world. Daddy and his best friend, Chuck. And there is little Greyson who I might marry someday. And then my favorite person of all is Auntie L! (Chuck's mom). They threw a surprise birthday party for her and we were there to help celebrate!

Here is another one of my favorite things, butter!

Eating a grilled cheese sandwich before my audiology appointment

I had to get multiple blood tests done for my gastro doctor. I was a champ! I didnt cry at all. Daddy said I even watched as they put the needle in my arms

 Me and my Daddy. I love him!

Me and Mommy. Daddy was trying to make me laugh so i would smile for the picture

I made these cute bunnies for my Grandparents and Auntie L!! They actually turned out cute. Those are my foot prints!

It's That Time of Year Again...

The March of Dimes March for Babies will be here before you know it. This year it will be on April 26 in Wade Oval. The walk raises funds for research for premature babies and birth defects..two items that are near and dear to my heart because Avery was born early and had a cleft palate.

I actually started taking part in this walk when I was in high school as part of the Key (Kiwanis) Club. I hate to say it but it never really meant much to me up until 2 1/2 years ago when Avery was in the nicu fighting for her life. I am going to be on Hillcrest Hospital's team this year. I am excited because they are the reason that Avery is here today.

I like to participate in this walk because we took advantage of services provided by March of Dimes when Avery spent 4 months in the nicu. Every Wednesday night, Tim and I attended the family support meetings. Not only did we not have to worry about dinner that night (since Pizza and salad were provided) but we also got to hear everyone's stories and experiences. Even though everyone's story was different, I still felt a connection with each family. I do still talk to a few of the moms I met during those meetings. I feel like they are the ones that really understand what we are going through. We would also get little surpises here and there. For Christmas, we were given an ornament with our baby's footprint. They also had scrapbooking (all supplies provided) which I was sad I could never take part in because I think it was at 1:00 during the week and I was already back to work.

The only thing I don't like about the walk is the time of year they have it. Its always at the end of April and with the weather in Cleveland, who knows, it could be snowing. They KNOW there are going to be tons of babies and kids who were born prematurely there and who can get sick very easily yet they schedule the walk during this time every year. Last year Avery got sick a few days before the walk so she did not come. It was also FREEZING and I wouldn't have brought her. I am hoping the weather will be nicer this year so she can participate.

Here is my shameless plug. You do not have to give but feel free to go to the website to learn more about the March of Dimes. Click HERE to visit my March of Dimes fundraising page

Are you ready for some football?

Chewie said he is ready for some football

I made this card for Daddy for Valentines Day

Hanging out with Mommy

This is one of my favorite things to do at the mall. I love running down the escalators

Just a girl and her dog

Mommy is so sad this picture is blurry because it would be a good one of me hugging chewie

Chewie, you are the best dog ever. Don't let anyone tell you differently.

This is my best bud

This is my other best bud. Mommy and I have a lot of fun together.

This is me "petting" Lily. I am not that good at petting yet, hence the blurriness of my arm.

Do I put Fabio to shame?

(if you dont know who Fabio is, click HERE)

Daddy let me play with his new toy.. a Microsoft Surface Pro 3

Check out my new ride

 This is my other ride. No, seriously. Mommy and Daddy pull me around in the laundry basket.

This is our most recent attempt at a family picture. We are all there including Sophie and Lily.

Even though Scarlett isn't my biggest fan, she has been pretty good with me lately.

Relaxing on the couch

This is one of the stuffed animals I like. I sometimes point out his eyes, ears and mouth.

Giving the monkey some hugs

I love saving money, just like Mommy

A picture of my best friend and I 

Pushing the wagon around the house. I almost feel like Austin Powers in Gold Member, trying to get around some of these corners.

With Daddy at the Rain forest

Looking at the ant eater. They are so weird!

 Daddy, did you ever contemplate naming me Ariel instead of Avery?