Monday, December 30, 2013

16 months old!

Avery is 16 months old today! I can't believe we have a 16 month old. I know, I say "I can't believe we have a __month old" every month but its true.

So we have decided that it's best to pull Avery out of daycare for the time being. Her little body just can't handle flu season there right now. We know she likes it there and we like her going there so we hope to be able to send her when the weather gets warmer out.

I meant to post these pictures a few days ago but we have been really busy.


 Look I found a cat toy!

Opening presents!

Check out my sweet ride

Family picture!



Wednesday, December 25, 2013

Merry Christmas!

Avery is home! Our Christmas wish came true :-) she is doing well so far. I will post more pics tomorrow.


Tuesday, December 24, 2013

Christmas Eve

Just a quick update because we are exhausted. This morning they discontinued her oxygen and her pulse ox was around 97-98 most of the day. She did really well without the cannula. She was also in a really good mood. Their plan this morning was to see how she does for one day without oxygen and then they will most likely discharge her tomorrow. The doctors on the normal pediatric floor don't do rounds at night so we will have to wait and see what they say tomorrow. Fingers crossed!

Hi everyone!

Mommy always buys daddy and I new jammies on Christmas Eve and then we wear them Christmas morning. She got me snowman jammies this year!

Here are some pictures of the play room at children's hospital. I couldn't go in there but mommy was allowed to bring books, puzzles and toys to my room. After we are done playing with them, the items go in a big plastic tote and then they sanitize everything. 


Me playing with a puzzle from the play room

I might be going home tomorrow!!

Look how cute my little butt is

Daddy was so nice and brought Christmas to my room in case I am not able to go home tomorrow. This tree was in my room at Hillcrest nicu when I was there last Christmas.

Opening presents from Uncle Greg and Lauren. Thank you guys!


Monday, December 23, 2013

Main campus day one ... Again

They transported Avery to main Campus yesterday afternoon and she was placed on the regular Pediatric floor. They said the X-ray from Fairview seemed to be bronchial related which is what was happening a few weeks ago. They decided they were just going to give her a few breathing treatments. Avery always responds well to breathing treatments but she did need to get put on oxygen. As of last night she was on 1 liter of oxygen but she didn't have an IV in. They gave her some Tylenol last night because she had a fever of 100.8. Last night was ROUGH. Avery could not get comfortable. She was up every five minutes and I'm not exaggerating. Every time she woke up, I woke up to try to see if I could make her more comfortable. During the night they took her temp again and it was down to 95.8. Somehow she became hypothermic. They raised the temp in the room and brought a bunch of blankets to try to keep her warm and raise her temp. It's hard to keep blankets on a baby that is constantly moving around because she isn't comfortable. This morning they decided to start an IV to give her fluids and an antibiotic. They didn't want to start the antibiotic until they did a urinalysis and urine culture. (The antibiotic would alter the urine and kill the bacteria if there was any in it and then the urine test would come back negative even if she originally had a UTI). Seeing them try twice to get a catheter in Avery was not fun. Third time is a charm I guess and they finally got some urine.

They then gave her a round of Rocephin, an antibiotic that treats bacterial infections. She had been eating 2oz here and there of formula. She also ate some chocolate pudding which she really seemed to like. 

The afternoon/early evening was much better than last night/this morning. She seemed much more comfortable and was playing with a book. Then Santa Claus stopped by. It was nice of the Children's Hospital to have him stop by and bring gifts for every child on the floor. Avery received two stuffed bears and a camera that blows bubbles when you take a picture. 

The doctors' main concern is Avery's temperature. They aren't sure why she went from having a temp to it being hypothermic. They aren't as worried about her breathing this time because she seems to be doing well with the breathing treatments and oxygen. The plan is to wean Avery off the oxygen and keep her in the hospital until they get the results back of the urine test and blood work to make sure she doesn't have any bacterial infections. They said hopefully those results will be back by Christmas morning and we can go home Christmas afternoon. I hope so because I am getting tired of spending holidays in the hospital. 

Tonight is Tim's night to spend with Avery in the hospital. When I left, they weaned her down to .5L of oxygen and she was doing well. 

My work has been so awesome with all of this. They told me to work wherever is most convenient for me. Tomorrow my plan is to work at my normal work location for a few hours and then spend the rest of the day working from Avery's hospital room at main campus. I am very grateful that they are so understanding. It needs to be spring/summer so Avery stops getting sick!!

The nice guy from the critical care transport team put up a sign telling people not to touch the inside of my mouth.

Snuggling with Mommy

My presents from Santa. This was right when I started feeling better though it doesn't look like it from this picture. 

Mmmmm pudding! I ended up getting pudding everywhere, all over my gown, my face, my cannula. Then I sneezed when I was eating it and some even came out my nose. 

Mommy and Daddy brought one of my Christmas presents to the hospital. It's tv espisodes of my favorite movie called Barnyard. There is a DVD player in my room so I can watch it while lying in bed.

The presents and tree are ready (except for the crooked star at the top). Now I just need to come home and spend Christmas with mommy and daddy. 

Sunday, December 22, 2013

Deja Vu

Took Avery to Fairview ER today and we are getting transported to main campus. Breathing issues again. I will post more when I know what is going on. 




Saturday, December 21, 2013

50,000 Pageviews!

Avery's blog has been viewed over 50,000 times...(currently 50,029 to be exact)! That is unreal to me.  It does motivate me to post even on days when I am too tired or exhausted. I know I have said it 100's of times but we really do appreciate everyone's love and support of our little girl.



Avery has done well since getting discharged from the hospital. This past week was her first week back at daycare in 2 1/2 weeks. She is quite the crawler now and loves to pull herself up while holding onto couches, tv stands, my lap, you name it. Her favorite toy right now is still the little green chair that we got passed down to us from my sister

This morning Avery developed a cough and her nose is like a faucet. I cannot keep up with all of the boogers. We even resorted to using the Nose Freida (the weird snot sucker that is like a siphon) again. I think it works the best out of our snot sucker arsenal that we have. I am really hoping she will get better and not worse, in time for Christmas.

Tim's brother, Andy, and Andy's wife, Cari, came home yesterday to surprise Tim's parents for Christmas. They moved out to Arizona a few years ago. They were the first people we told when we found out we were pregnant because we found out when we were in Arizona visiting them.

This is my favorite toy at the moment. I play on here for hours. In this photo I am impersonating the smile on my chair.

Uncle Andy and Aunt Cari got me Minnie as a get well present. They shipped it out to me after my surgery :-)

My hair is getting so long!

We all decided to smile for Mommy....well I smiled and Daddy kinda did. I guess Chewie and Scarlett didn't.

I can sit or fall onto Chewie and he doesn't get mad. I love him!

I was helping Mommy wrap Daddy's Christmas presents.

Selfies with Mommy

Another selfie with Mommy

Look how cute our butts are

The black thing on my pants is my Mommy's pebble(pedometer) that her work makes her wear in order to get a discount on her health insurance. She put it on me because she said I move around a lot more than she does.

My cousin, Kassidy, and I 

My cousin, Michael, and I

Me and Uncle Andy!

Wednesday, December 11, 2013

This Girl Amazes Me

YAY!!! She drank from a bottle on Monday, which is the first time in almost two weeks. I knew she would do it eventually. I was getting a little nervous because she wouldn't have been able to go to daycare next week if she wasn't drinking from a bottle since they don't use the gtube there. After she drank from the bottle, she was so proud of herself. It was so cute.

Avery amazes me more and more everyday. She is the strongest person I know. She has been through so much and everyday she wakes up with a smile on her face. ***Mom, Dad, Mom S, Dad S, now is the time to stop reading*** In the near future I will be getting a tattoo in honor of her. I told my parents and inlaws to stop reading because none of them are crazy about tattoos. I haven't decided what I am getting yet. I know I will get it in a spot that you won't be able to see because of work.


My friends, Owen and Mara, made me a get well card!

This is the first time that I drank a bottle...almost two weeks after surgery

Mommy and I smiling for the camera

I helped Mommy put the elf in Daddy's spot in bed while he was working one day. We even created a sleep mask for him

Me and my best bud...after Daddy of course :-)

Saturday, December 7, 2013

Avery is Home!

She was doing so well that they decided to send her home today. She got discharged at 12:30pm with no prescriptions to fill and no oxygen. I was worried they were going to send her home on oxygen but Avery always seems  to amaze me.

She has been doing well at home. Playing like her normal self. She has a bit of a cough and a runny nose but doesn't seem to be in any pain anymore. 

Sorry for updating this so late but Avery just woke up and I tried feeding her some baby food. She took a few bites earlier from one of those pouches so I decided to try again. She ate the whole pouch! I was so proud of her I almost cried. This is the first time she has eaten anything by mouth since her cleft palate surgery on November 27. I tried a bottle after that but she was not interested. I think she will come around soon. 

I am so excited to have her back home and can't wait to spend the holidays together at home and not in a hospital!

Check out my sweet hair from this morning. 

Mommy was rocking me

I can't wait to get out of here. No wonder everyone complains about these hospital gowns. It's like I am not even wearing one!

I am home at last!

They greeted me with sloppy wet kisses :-)

Friday, December 6, 2013

Night Four at the Hospital

Avery seem really good today. They took her off her cannula and is now not receiving any oxygen support! She is breathing very well on her own. They also removed her IV. This makes things much easier when picking her up. At rounds today they said the other day she was "this close" to getting intubated. We are so grateful she didn't have to. They said they are going to see how she does resuming her feeds and without oxygen and fingers crossed we might be able to come home tomorrow. Hopefully they won't transfer us to the general Peds floor and make us spend another night. Avery got a bath today which was good because she was getting stinky.. Lol. She hasn't had a bath since Sunday or Monday. I'm sure that made her feel a little better as well.

I ended up complaining to the nurse this morning about how nobody was telling us anything. It wasn't necessarily her fault because she was very good and attentive to Avery but I kind of let her have it. They didn't change her diaper once during the night even though she woke up multiple times. I ended up changing it at 8 this morning and it weighed 162 grams (normally they weigh around 40). Then she had her pulse ox in the same spot for two days straight. They should be changing the position at least every 12 hours so it doesn't burn her skin. I remember in the Nicu they would change  the position during every hands on. It just seems very unorganized and makes me appreciate Hillcrest even more (except of course for the nurse manager there).  I also asked if the doctors ever come in and look at Avery. I think I have seen one, one time on the first day in the PICU come into her room. At least Tim or I are here at ALL times and we have never seen the doctors who are supposed to be following her beside that one time. Dr. Doumit (her surgeon) has come to check on her 3 times since we got here on Tuesday. He doesn't need to come see her but he actually cares about his patients. 

Ok I am done complaining. I am so happy Avery is feeling better. We cannot wait to get out of here. I think we are going to keep Avery locked up in the house until spring because I don't ever want this to happen again. I am so, so so happy that Tim said to take her to the ER on Tuesday. I give him all the credit that he noticed she just wasn't right. What a good Daddy :-)

No cannula in her nose!

Watching cartoons in bed

Playing with her gift from St Nick. No IV in her hand.

How could I not take a picture of this awesome hair?

This is so true :-)