8 Months Old!

Avery will be 8 months old tomorrow! She gets cuter everyday and always puts a smile on our faces. My sister and I walked in the March of Dimes March for Babies walk on Sunday. I saw Therese from March of Dimes, John Dixon, the head of the respiratory department from Hillcrest, and my friend, Sarah, whose son was in the Nicu for a month. It was great to see everyone out there walking for a good cause.

Avery has been doing ok since the surgery but she started to have white discharge come out of her ears when we are feeding her...so we are thinking it's possibly formula. She now has whitish-green discharge so we think she has an infection. We put a call into the ENT department and are just waiting for a call back. We have been giving her the antibiotic drops in her ears twice a day but she may need an oral antibiotic.

 Here are some pics from when my Mommy and Aunt Janet walked in the March of Dimes Walk

 Mommy went to take a shower one day and I stole her spot in bed!

 Mommy, reading me a story

Mommy's coworker, Doug, gave me this toy!! I am very interested in it. I can't wait till I can stand and play with it. Until then, Mommy pushes all the buttons and I listen to it and watch the flashing lights.

I wore this shirt for my Aunt Janet because she walked for me in the March of Dimes walk

 My buddy, Chewie and I hanging out

Check out my cute ice cream outfit (It's really pj's but I am going to wear it during the day)

My sister, Scarlett, giving me a kiss

Day 108 at Home- April 25, 2013

Avery had her surgery on Tuesday. We had to get there at 5:30am. She didn't end up going into surgery until almost 8:00. Then they did the surgery and repeat hearing test. They told us she was done around 10:45. We then went back in the recovery room with her. She was really sleepy. She woke up for a little bit and the nurse gave us sugar water to feed her. Avery wanted nothing to do with it and she went back to bed for a little more than an hour. She woke up again, was given some Tylenol and drank about 60ml of formula. We were finally able to go home around 1pm.

Dr. Anne came in and talked to us after Avery's surgery. She said the surgery went fine and they removed a lot of thick fluid from her ears. She said the nerves in her ears were perfect but for some reason the sound isn't being conducted like it should. It stops at a certain point. She said it seems like Avery has mild hearing loss in her left ear and mild-moderate in her right ear. She said we are going to wait about a month to let her ears drain more and heal and then we will repeat the hearing test. At that point if she fails again we will most likely look into getting hearing aids for her.

Avery has been through a lot. She amazes us every day with how strong and brave she is. I am not worried if she ends up with a little hearing loss. She will learn to overcome it like everything else that has come her way so far.

This weekend my sister and I are walking in the March of Dimes March for Babies walk. March of Dimes was a big support when Avery was in the NICU. They sponsored the family support meetings that Tim and I would attend every Wednesday at Hillcrest. They also gave out Christmas gifts and unexpected presents throughout Avery's stay. Thank you to everyone who has made a donation. Your donation goes to help out babies born prematurely and their families :-)

I decided that for my last supper before my surgery that I wanted Mommy and Daddy to take me to Carraba's.

Mommy, you better not give me pink eye the day before my surgery!!

No wonder why people hate these hospital gowns. I feel a draft

How cute am I in my little gown?

This was me when I got out of surgery. I was desatting a little bit but I didn't want the cannula in my nose. I kept pulling it out so the nurse decided to put it in a cup and point it in my direction.

This picture was taken a few days before surgery. Daddy decided to take me and my sister and brother for a walk. I think I look a little like the baby, Carlos, from the movie the Hangover in this pic.

I am getting so good at smiling!! Now I need to work on my laughing

Day 104 at Home- April 21, 2013

I went to the doctor after work on Thursday and it turns out I had pink eye in both eyes. My one eye is still pretty red so I am still using the drops that were prescribed and still wearing my glasses. So far (knock on wood), Avery has not caught it. I had to take off work on Friday because my eyes were so sensitive and tearing and I couldn't drive like that.

 I did end up going to Avery's feeding clinic appointment (Tim drove). Tim and I hate going to these appointments. We feel like all they ever do is yell at us. They said Avery lost weight from her appointment last week with Dr Peterson. I said that is not correct, that when they weighed her at that appt last week, she was fully clothed, including wearing her diaper. She was naked when she was weighed at the feeding clinic. Avery now weighs 10 pounds 2 3/4 oz. They said they aren't happy with her progress. They made a few recommendations, none of which we will be doing. These were their recommendations:

1. They suggested we try going back to using a special type of bottle. We are not doing this because she has eaten a whole feeding many times using the Dr Browns bottles. If we switched bottles now, we think it would just confuse her.

2. They recommended we tube feed her every other feeding. Tim and I are not going to be doing this. Avery will never learn to eat from a bottle if she is tube fed half the time. 

Tim and I don't like tube feeding Avery because she knows when she is hungry and full. She will eat until she is full. When we tube feed the rest, she gets very fussy and upset. It's like when you or I over eat and are so full and bloated afterwards. We explained this to the feeding clinic and say that she ends up using up all those extra calories being fussy and crying so there is no point to tube feed the rest.  Then they said that she needs to take in 540ml of formula a day and they didn't care when or how she got it(whether bottle fed or tube fed). I shouldn't say that we aren't following any of their recommendations. We all decided it was a good idea to start writing down her feedings, the time she ate, how much she ate by bottle, if we tube fed any and any other notes. They also recommended using a #2 nipple. We agree and are going to try this. The milk will come out easier so she won't have to use as much energy to suck it out and it will come out faster so it might not take her as long to eat. We will most likely have to pace her a little bit to get her used to the faster flow.

They wanted us to schedule an appointment in one week for a weight check. We put our foot down and said no. I am not dragging Avery out a few days after her surgery just to get weighed. Plus, I am never going to drive all the way to Shaker just for a weight check. I told them we would take her to the Independence FHC for weight checks but I refuse to do it the week of her surgery.

Someone managed to roll over at least 3 times on Friday and I finally caught it on video! (See below).

Cleveland Clinic will be calling us tomorrow to let us know what time we need to arrive for Avery's surgery on Tuesday.

I have been all smiles lately

Mommy bought me a new hat so I can go out in the sun in the summer. I actually didn't seem to mind it

My buddy, Chewie, and I on the couch

Mommy put these rattles on my wrist. I love to chew on it. (I am probably learning habits from Chewie since I hang out with him all the time..hence why he was named Chewie)

I got to watch a new Baby Einstein video the other day. I stayed interested in it for about 15 minutes.

This is me rolling over. It would have been easier if Mommy put me in an outfit that actually fit and my arms and legs didn't get caught

Day 101 at Home- April 18, 2013

We don't really have too much to update. We have been starting to give Avery some rice cereal mixed with formula and bananas or sweet potatoes. She seems to like it and I am excited to slowly start introducing other fruits/vegetables. Hopefully, she won't be a picky eater like her mommy.

When she saw the neonatologist last week, they changed her reflux medication from Zantac to Pepcid. I'm not really sure why they changed it. I am going to request to have it changed back because the Pepcid is $85/month and the Zantac is only $3/month. Also, she seems to have more formula coming out of her nose since being on the Pepcid.

Avery has a feeding clinic appointment tomorrow. Hopefully she has gained some weight.

Also I think I have pink eye. I am going to the doctor's tonight. I CANNOT let Avery get it or her surgery will probably be postponed.

I look really sad in this pic. Look how orange my hair is!

I was am watching TV with my buddies

Mmmm, I like bananas

Open sesame!

I am finally starting to touch and hold things. I still don't really grab for them yet.

Mommy took me to Value World for the first time the other day. She got me so many cute new outfits. 

Mommy asked me if I pooped while I was in my carrier and I started smiling. 

My favorite thing to do this week is to chew on my hands and see how many fingers I can get in my mouth.

I love taking baths

Day 97 at Home- April 14, 2013

Avery had a busy day on Saturday. I went to breakfast with two of my friends I used to work with at CCF Independence and Avery came with us. She slept in her carrier until we were almost done eating and then she woke up. I took her out of her carrier and my friends held her. We stayed at the restaurant for about 1 1/2 hours and Avery was perfect. Strangers came up to me and complimented me on how well Avery was behaved. In the afternoon, we went to my nephew, Eddie's, 3rd birthday party. She was pretty good there as well. Eddie loves his cousin Avery. He loves looking at her, holding her, etc. He tried to share all of his new toys with Avery. It was very cute. Saturday night, I went to my friend Deb's house. It was a gathering of people I used to work with at Independence. She was really well behaved there as well. People don't believe me that she actually cries..but believe me, she does..lol.

Tomorrow Avery has physical therapy with Help Me Grow.  She has a follow up with the feeding clinic on Friday.

Daddy brought me to visit Mommy at work on Friday. I met so many new people. I felt like a celebrity.

I am passed out! Looking cute is tough work.

I like to smile at Mommy when she feeds me

 Look how cute my little feet are

I took a nap at Mommy's friend Deb's house on Saturday night. Then I woke up and went back to partying.

What a great family photo! This is my cousin, Eddie, Grandma and my cousin, Kaitlin.

Day 94 at Home- April 12, 2013

Sorry this is late but things have been pretty busy lately. Avery had her pre-op appointment on Monday. Her pediatrician cleared her for surgery on April 23 to get tubes in her ears. I was a little worried he wouldn't because she was still a little congested from her cold the week before.

We had our preemie NICU follow up with Dr Peterson on Thursday. She said Avery looks really well but was concerned that her weight seems to be plateauing. She suggested we give her a continuous feed at night. Tim and I were not thrilled with this idea because 1. Avery is sleeping really well through the night and we don't want to mess that up 2. She is going to be getting more active and rolling over and we don't want her feeding tubes to get tangled and somehow strangle her in the middle of the night.  She saw we weren't keen on that idea so she suggested adding 1/4 teaspoon of vegetable oil to each bottle to help her gain weight. This will increase the calories from 27 to 30. I am really hoping this works.

I am sooo close to rolling over. I get so mad that my arms get in the way all the time.

I (with the help of Daddy) got Mommy flowers one day. Daffodils, her favorite.

This is a picture of my first walk around the block. I didn't look at anything but my butterfly hanging from my carrier.

Look at me in my cute new jeans. Mommy said these jeans are more in style than hers are

Giving Mommy a cute bashful smile

Day 89 at Home- April 7, 2013

Avery was really busy on Friday. She had two appointments at main campus, went to her cousin's birthday party and then her uncle's birthday party.

Her first appointment was an eye exam with Dr Paul Rychwalski. She had to get her eyes dilated and we thought she would be crabby the rest of the day but she was all smiles. Tim and I really liked this doctor. He was down to earth and explained things in terms we could understand. Avery's eyes looked great. The doctor said she might be just a slight near sighted (can't see far away). He said at worst, she might end up needing glasses in preschool. He said that would be the worst case scenario. She might not end up needing them at all. He said it doesn't matter if she is near sighted; that we don't want her to be far sighted(can't see close up). He said she isn't driving soon or looking at a chalkboard so it doesn't matter. He said what matters now is being able to see a bottle in front of her or her mom and dad's face. We were very happy with that appointment(finally some good news!) She has a follow up scheduled in 6 months.

Her next appointment was with genetic counseling. This appointment wasn't as good. They said her head circumference is measuring small, even compared to other 25/26 weekers. They took into account her head circumference, small stature and hearing loss and now they say she might have something called Kabuki syndrome. Here is a link to Kabuki Syndrome.
http://ghr.nlm.nih.gov/condition/kabuki-syndrome

People with Kabuki syndrome have developmental delay and intellectual disabilities. Personally, I don't believe Avery has this. I think she is just a small girl that is going to be developmentally delayed due to her being born 15 weeks early, not because she has some sort of "syndrome".  We asked the genetic counselor, what does it matter? She is already going to be getting early intervention from being born so prematurely. He said it matters for 3 different reasons.

1. If she does have it, she will need early intervention.
2. If we decide to have more children, we could pass it to our next child.
3. When Avery is older, she can pass it to her children.

It ranges from very moderate symptoms to very severe. He wanted Avery to get blood work drawn to check and see if she was positive for it. We ended up having her blood drawn to check, though it really doesn't matter. He said even if the test comes back negative, we can't rule it out. (why even get the bloodwork then??) Tim and I swear they just want to do research on Avery. If it comes back negative, we are not going to see genetics again. We are done with them.

Avery is still getting over being sick this past week. She is still pretty congested but she is eating much better. She ate two full bottles for me yesterday. She is getting better at balancing/sitting by herself.

She has a pre-op appointment tomorrow so her pediatrician can clear her for surgery on April 23 and she will be getting her last RSV vaccine. She then has an appointment on Thursday with Dr Jen Peterson. She is a neonatologist at Hillcrest that follows up with all babies born prematurely. I believe we follow up with her at 6 months, 1 year and 18 months.

This is Daddy and I at the eye doctor's.

I helped Mommy work on the blog on Wednesday. I was sitting up all by myself!

I like talking to Daddy

I got blood work on Friday. I only cried for a little bit.

Then I was big and strong. Look at these guns

We finally got the computer hooked up to the tv. Now I can watch all the free Baby Einstein videos that I want!

 I am sitting much better in my bumbo seat

I am waiting patiently(for once) for my food to be heated up.