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Friday, December 21, 2012

LOTS of Random Pictures!

At the end of November, we took a short walk down to Temple square to see the lights. It was just so fun and Ellie was so good! I think she was a little amazed that she was somewhere other than the house. 




She didn't seem to mind that her hat kept falling over her eyes..



 Ismael and Ellie dancing la cumbia


Ellie and Grandma Polly

Oh no...

We gave my mom an iPad for Christmas and her birthday from all of the kids! She LOVES it! 

Everyone on Skype watching her open it..

Grandpa and Ellie on her blessing day

Playing with the Christmas lights while we put up our tree..


Speaking of our tree..

 I love it and the way it turned out. It makes our apartment feel so homey!


Homemade paper flowers made by Ismael

Tree Skirt made by my mom..

Ellie's first Christmas ornament from my Dad, Leslie and Kimber, so cute!


Looking in the mirror


Staring at her picture of Jesus

Little Pigtails!

She loves to cuddle with her blankets and this is how I find her most of the time after her naps. I love it!

Thursday, December 6, 2012

Hospital..Again


Sadly, this week Ellie is back in the hospital. Just wanted to give a detailed update to those who are wondering what has been going on. 

Sunday night after Ellie's feeds, she vomited and then started coughing really hard for a long time. I was really scared she aspirated. After that, her oxygen levels were lower than normal and were not coming back up. We had to hook her up to oxygen, which she hasn't had to have since her surgery. I was a little scared. We put her to bed to see if her levels would come up over night. 

About 2:30 am I woke up to hear Ellie struggling and her monitor going off. I rushed over to help her. We turned up her oxygen levels and changed her trach but nothing seemed to help her too much. At one point she turned a little blue. We got her a little more stable and then rushed her up to Primary Children's ER. When we got there she just started to get a lot worse and was working really hard to breath. They started an IV and then admitted her to the PICU. 

Monday was a really hard day for Ellie. She was retracting really hard and running a fever. We couldn't get her calm or stable. They finally had to sedate her and put her on the vent (breathing machine). She finally was more comfortable, but really out. 

Her blood tests came back positive for rhinovirus, which is a cold. She hadn't seemed sick at all Saturday. If Ellie even gets a cold or a little bit sick, it is more than likely she has to be in the hospital for more support. They decided to keep her sedated and on the vent to get over the worst of the virus. 

On Tuesday morning her chest x-ray came back showing she had more than likely aspirated and got pneumonia. He blood cultures also showed she had bacteria in her blood. They immediately started antibiotics. She remained sedated and on the vent all day and all night. 

Finally on Wednesday, they took her off the vent and weaned her off her sedation drugs. I was so happy to see her awake again! She seemed to feel much better. 

We are hoping to take her home soon but we are still working out a few problems. Her heart rate is still way higher than normal and she is still requiring some oxygen. It has been a scary week and a little  traumatic for Ellie (one night they tried for an IV 5 times on her, and still never got it), but we are so grateful she is ok. Hopefully we can keep her out of the hospital the rest of the winter!

Saturday, December 1, 2012

Ellie at 5 months

Where has the time gone? I can't believe it is December already! We had a good Thanksgiving and did some fun other things that I will be posting about later. 

I tried to take some pictures for Ellie's five month birthday. I'm just really not a photographer but I tried! And I think she looks cute no matter what!



Some pictures in her blessing dress







Ellie has come really far this month health-wise and developmentally. We have started to hear her laugh through her trach sometimes which we just love!  She is more active and strong. 

-She loves to watch baby Einstein in the mornings while I get her ready. It helps her get through the trach and g-tube dressing changes. 

-Loves to hang out with her dad when he gets home from work

-Still loves attention all of the time and loves songs. Likes to always be a part of what is going on.

-Is growing like a weed! At least it seems like it to me. We put her on our bathroom scale the other night (not really accurate at all) and she came out around 11 pounds. And she seems so long!

- She loves everything in her mouth, which is so good! We are happy that she has gotten over a lot of her oral aversion. 

- She is just such a joy to be around. I feel so lucky that I get to take care of her every day and watch her change and overcome things and improve! She has been put through a lot!

We are going to be starting speech therapy with her soon to help her start to eat. She will need a swallow study before she is approved to eat by mouth. It can be a long process because she has never eaten by mouth and has to learn those skills.

Monday, October 29, 2012

4 Months

I can't believe Ellie is four months old! Time is seriously flying!

At four months Ellie:

Loves to play with her octupus


Could look in her mirror for hours.. 

loves to stand up and dance

tired after a lot of dancing..


 Sleeps the whole night!


has the cutest "grandma smile"


smiles all the time in general 





loves to cuddle




has crazy long hair!


loves her binky (notice our contraption to keep it in)



 And just keeps getting more beautiful!



We love our little Ellie!

Monday, October 22, 2012

October so far..


We were able to go to the Saturday morning session of conference. My aunt Bonnie Jo got us tickets. It was so great to just walk over there from our apartment and not worry about parking or anything. 
(whoops... poor couple in the background)


My mom was also up conference weekend. Its always so fun to have her!

Walking down the halls of the hospital.. 
Ellie and her excellent therapist at the NICU, Barb




This was the day Ellie came home! It was such a wonderful day and also a little tiring! We stayed at the hospital the night before to do a trial night with her. We had also been so busy all week getting things ready for her, not to mention we had 3 things go wrong with our car that needed to get fixed! Luckily my brother is so talented and was so kind to help us hurry and get it fixed. We also had a ton of home health equipment get delivered that day and a lot of new machines to get used to for Ellie. It was overwhelming, but we are so happy to have her home. 
Getting loaded in the carseat, waiting for the discharge papers




Some pictures of Ellie while she has been home: 

 Playing on her playmat


Yesterday, we took Ellie out and went on a walk. It is quite the task to get a normal baby out the door, and then add a ton of equipment with that and it is a little more difficult. It was so nice to get out and get fresh air. We walked around temple square and City Creek. I love the fall weather here in Utah.


So grateful for my husband. 
 

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