Tuesday, October 28, 2008

Little Miss Houdini Strikes Again!

Elaina was absolutely beautiful today! She was all dressed up in one of her hot pink dresses with a big flower in her headband. She was extra sweet and cuddly and made some really funny faces at me. She's found her tongue again and was actually smiling a big smile while sticking her tongue out as far as it would go. She wouldn't do it once I pulled out the camera, but I'll keep trying. She's starting to get a little bit ticklish, but hasn't quite figured out how to laugh yet. We played with some toys, sang some songs and I got in quite a few kisses (one is never enough!) during my visit.

When I got to South Davis today, Elaina was napping. She'd managed to wiggle out of one of her no-no's and was holding onto her oxygen cannula. I looked at the monitor, and her saturations were 81%! Not bad for having the oxygen out of her nose! While I was holding her, the alarm kept going off because she was as high as 89%! HOLY COW! She's doing this with a stuffy nose and a cough, I can't help but wonder what she'd be doing if she wasn't congested. Right now Cardiology doesn't want us to turn her oxygen any lower than 1 liter. At least those were the instructions that I was given before leaving Primary Children's. Although at that point, we felt that she was having a good day if she was 75% and didn't think that she'd ever truly sat over 80% on a regular basis. I'd been told that when she was 80% or higher, it was probably a false read on the pulse oximeter, and to be fair, that was most likely true at that time. But Elaina has been showing these high saturations for several days now, and I'm wondering if I should call her cardiologist and ask if it is still necessary for her to be on at least the 1 liter or if it can be turned down to 3/4 or 1/2 liter settings. We have a cardiology appointment on November 19, so I may just wait until then to ask, but it is so suprising to have her sats so high (for her!).

Anyway, my visit ended far to soon. They always do. :( I gave her some extra kisses, and put her back in her crib. The nurse was in the room, and I mentioned some concern about the tape (or lack of it, to be exact) on her NJ tube. I told her that I was worried about it getting pulled and she told me that she had re-taped it this morning and that it was quite secure. She was in the process of putting Elaina's no-no's back on as I left the room. I made my hour drive home, and no sooner had I given Ben his kiss and hug hello, and my phone rang. It was South Davis. The charge nurse was calling to let me know that my Sweet Little Miss Houdini had struck again. Somehow, she'd wiggled out of her no-no's and had pulled her NJ tube out of her nose. So, she had to take her 1st trip back to Primary Children's tonight to get her tube replaced. One of the nurses told me that she was so cute on the stretcher in her pink dress and big bow. She told me that Elaina was looking around and seemed excited to take her ride!! She's not back at South Davis yet, but they have been calling me with updates. The last I heard they were just waiting for the transport to come and take her back. Silly girl! She just doesn't understand that if she pulls it out, they've got to put it back in. In any case, I'm sure she enjoyed having no tube in her nose for the short amount of time that it was out.

Thursday, October 23, 2008

My Princess Elaina

When I got to the hospital this afternoon, Elaina was all dressed up! She was in her prettiest pink frilly dress with a huge bow.


The nurse told me that she was out of clean clothes, and this was the only thing that was left in her drawer. In my defense, I'd brought her clean laundry with me and there were a couple of onesies and 3 pairs of pants in her drawer. If you ask me, I think the nurses were just having way too much fun playing dress up! Elaina was asleep when I got there, she'd spent the morning doing physical therapy and in her swing. I put her clean clothes and blankets away and then pulled her out of the crib for some Mama snuggle time. While she was glad to see me (I got a huge smile when I kissed her cheek), she wasn't happy about being awake. So, we snuggled and rocked for a couple of hours while she finished her nap. When she woke up she was ready for some more fun. Luckily I had my camera in hand and was able to capture her cuteness!

She's still congested, but not quite as much as Monday. However, I think that her cough sounded a little worse. She doesn't seem to mind that much though, and the medical team continues to watch her carefully.

Anyway, I hope you enjoy the cute little video! She was being so sweet!

video

Tuesday, October 21, 2008

Picture Time!

Elaina had a pretty good day today. Once again she's having a little bit of throwing up, it's mostly secretions and bile. They are watching her closely so that it doesn't happen when she's on her c-pap. I talked with the doctor about her cough and stuffy nose, but we didn't really get anywhere with it. She hasn't had any fevers (can you belive it?), so they aren't too concerned. The nurses and respiratory are keeping her nose suctioned to help her be comfortable. They are going to keep a good eye on her and see if it gets better or worse and then treat it accordingly. At least she's turned into a really good mouth breather! She was making all kinds of noises in her sleep as I held her yesterday! The congestion could be one of the several things I talked about in my last post; reaction to flu shot, teething, or a real cold. She seemed better to me today than she did yesterday. Hopefully that's a good sign. Today though she just wanted to be a snuggle bunny. She stayed awake my whole visit, but she didn't really want to play, she just wanted to be snuggled close while I sang to her. As soon as I'd sit her up and try to tickle, or play with toys or peek-a-boo, she'd start to fuss. So I obliged her and just rocked and sang her lullaby's with her snuggled up close. What a sweetie! She did give me some smiles and that always makes my day!!

Okay, it's picture time! These are some of my favorites from the last week or so.
Ben came to visit! He loves to hold her even though she's getting so big! He's so cute, we taught him how to hold his arms to support her head when she first came home from the NICU, and he still puts himself into the same pose now when I put Elaina in his arms. The poor kid's arms are too small for this growing little girl!


Looking at her mobile.
I LOVE the big flower on her headband. I found them at a local grocery store and the flower is just basically glued to a hair clip and detaches from the band! I bought 2 bands (they came with 2 flowers) and an additional 3 big bows. Since they're all interchangeable, we'll be having lots of fun!



My sweet friend Ann sent me this cute pillowcase. I use the pillow to help prop Elaina up when she's playing in her crib, or to help support my elbow when I'm holding her in the rocker. I had a pillow with a white pillow case on it, and housekeeping took it away thinking that it belonged to them!!! Thank you SO much Ann!!!


For the life of me, I couldn't capture a smile with camera that day!
She did give me several though!


"Hmmmm, wonder if I can pull this NJ out when nobody is watching?"


"Oh, just saw my mobile! That makes me happy!"


Silent laughter? Could be, she absolutely LOVES her mobile.
She won't smile at me, but as soon as the music is on and the mobile is turning, she's all grins!


Even in a blue dress with a blue blanket, she's absolutely adorable!


Well, that's it for now! I'm up WAY too late and have TONS to try to accomplish in the morning!

Monday, October 20, 2008

I feel like such a slacker!

I have been so incredibly busy that I just haven't had time to post. Elaina is doing very well at South Davis. I think that she might be getting a cold, so I'm a little bit nervous about that. I'm hoping that it is because she got a flu shot (not the live virus mist) and that is what's causing it. Ben and I need to go get our flu shots this week. Anyway, Elaina's very happy and content in spite of having a stuffy nose and a little cough. Maybe she's finally teething? Who knows. I will be talking to Dr. Murphy on Monday morning and see what she thinks about it. Otherwise she is absolutely adorable. She's smiling so much more and is starting to anticipate when I tickle her or play peek-a-boo. I've taken some very cute pictures and some super cute videos over the past couple of days, but I am too tired (and lazy - at the moment!) to download them all and post them tonight (it's after 12:30 am and I need to get to bed!). I will continue to take more cute pics and hopefully post them all within the next couple of days. I took the opportunity to spend some time with one of my very best friends this weekend as well. For all intents and purposes we're sisters. Colleen and I have been friends for 23+ years. Wow! She and her husband live about half way between my house and South Davis. Colleen and her husband Najee are two of the kindest and most generous people I've ever been privledged to know. Ben loves Najee, he's such a good role model, he builds Lego's with Ben and encourages Ben to make good choices. They invited Ben and I for dinner and a movie on Friday night. We stayed up late talking and laughing and playing games. Sometimes that close friendship makes it hard to leave. They have a nice guest room in their basement, so Ben and I ended up staying with them all weekend long. It was nice to spend some good quality time with my friends and Ben. I was also able to take Ben with me up to South Davis to visit with Elaina. All in all it was a perfect weekend. I didn't get any of my Saturday "to do" list accomplished, but I guess I have the rest of this week to work on it!
I'll try to post pictures on Monday night! Thanks for checking in!
Love,
Hollie, Ben and Elaina

Tuesday, October 14, 2008

More decisions

Not much exciting going on around here! ;)
We're trying to get into the new routine with South Davis. I've decided that I can't go up every day to see Elaina, as much as it breaks my heart. There are several reasons for this, one being that I've been spending approximately $400 a month in gas, and I just can't afford it any more. South Davis is in Bountiful which is actually further north than Primary Children's, and adds an additional 10 minutes each direction to my commute. Another reason is that I really feel like I need to take some extra time with Ben. It's been so hard on him to not have me home after school every day, and to have me get home so late every night. Most nights I get home between 7:30 and 8:00, which is so super close to bedtime. I spend all morning with him, but no time after school. All my morning time is also shared with working, so I'm not able to give him my full attention. Once he leaves for kindergarten, I've been heading up to see Elaina and spend the afternoons with her. I get there around 2:00 and stay until 6:30 and then head home. This schedule is getting more and more difficult for me to handle. It seems like everything else that I need to get done is being pushed aside so that I can spend (split!) time with my kids. I'm not able to keep up on laundry, grocery shopping, and other household chores as well as I'd like. I feel like such a slacker sometimes. So, now that I've listed all my reasons, I've decided to stay home 2 days a week to see if I can get back on top of everything. In a perfect world, I'd have a maid that would come and clean for me and I'd send my laundry out (or have unlimited $$ to just buy new clothes all the time!) and have all my groceries delivered to my door. Oh well, this is just for a short time, it won't be forever. That's because I've made another decision as well! I currently rent my home, and my contract ends at the end of December. So, I've decided to re-locate up to Bountiful. It will be hard on Ben to change schools, but in the long run it will be for the best. If I'm 5-10 minutes away from Elaina, I can visit her while Ben is in school and then go back later in the evening with him for another visit. I should be able to manage my time a little better if I don't have have a 2 hour commute added to my daily routine. Not to mention the gas expense. I'm glad the prices are coming down, but it's still a lot of money every week. I'll be able to look around town on my visits, especially when I take Ben with me on Saturday's and don't have to worry about hurrying home. Moving isn't something that I like to do, and I've done it too many times recently - 6 times in the last 6 years!! Hopefully I'll be able to find someplace that we can stay for a long, long time!

Elaina is doing really well. She's adjusting well to South Davis and seems to like it there. The nurses are falling in love with her, and have lots of fun dressing her up and playing with her when I'm not there. She's still been having problems with throwing up stomach acid, but I don't know if we'll ever not have that be a problem. They adjusted her reflux meds again today, so hopefully that will help to control it a little bit. Her nurse told me today that she rolled from her back onto her side! WOW! She must be feeling better! She's still getting out of her no-no's, but they have her NJ taped better so she's mostly just pulling out her oxygen. They moved her into a different room this weekend. She's so quiet that they couldn't hear her cry, so they moved her into a room that is much closer to the main nurses station. She still has a window, but it looks onto a covered patio so she doesn't get direct sun anymore. She also has a room mate, so there isn't as much privacy as we're used to. That's okay though, we had shared rooms in the PICU so it's nothing new. I'm planning on taking some pictures when I visit tomorrow. I went to Wal-Mart (first time in months!) tonight and got her some cute new clothes. She's growing so fast, she's outgrown most of the clothes that I have for her now. I just HAD to go shopping and buy some new stuff. Thank goodness for Wal-Mart! :)

Friday, October 10, 2008

Double Tag

So, I've been tagged a couple of times in the last week, and I'm finally getting around to doing my tag post!

TAG #1
My friend Megan tagged me for a photo tag. You have to pick the photo from the fourth file and then the fourth photo.


This picture is of Elaina when she was in the hospital last spring. This was before her heart cath and all her surgeries.

TAG #2
I was tagged by both Megan and Emily for this one!

Random Facts about me:
#1 I lived in Paris France for 1 year when I was 13 years old, while my Dad was on a research sabbatical.
#2 I lived in Omaha Nebraska until I was 15 years old.
#3 I was a nanny in Philadelphia for 2 years after I graduated from High School. (1988-1990)
#4 I was 32 years old when Ben was born.
#5 I was widowed when I was 33 years old. Ben was 11 months old.
#6 I can honestly say that I was 37 when Elaina was born, she was born 1 hour before my birthday!
#7 I love to cook and bake! Soups are my favorite, and I love to make up my own recipes. I really enjoy baking and decorating cakes, I even made a wedding cake for one of my friends once!

Okay, I double tag: Brytten, Melynda, Kathy, Stephanie, Tina, Camille, and Aimee!
So hard to just choose 7! :) Have fun!

Wednesday, October 08, 2008

Getting Settled in

Well, it seems that we are finally starting to get settled in to South Davis. Transitions are always difficult for me, but so far this one has gone very smoothly. I must say that the atmosphere at South Davis is much different than I expected. It is a long term acute care facility. The majority of the residents are on ventilators with a traech, or are confined to wheelchairs. Most of them have significant developmental delays as well. In a way, it feels like Elaina doesn't quite "fit in". That said, I think we're going to like it here. Rooms are shared, but the other bed in Elaina's room is empty, so she has the bed by the window. So far it's been fairly quiet and it's nice. The nurses are on teams, and the teams rotate every 8 weeks, so there is quite a bit of consistency of care. Someone comes into the room every 30 minutes to check on her, so she seems to get quite a bit of attention. I have a "get to know you" care conference on Thursday, so that will be good to make sure everyone is truly on the same page. She is such a content little thing! She rarely cries, and if she does, there is a good reason for it. I think she likes that she's not getting poked as often! I had a good day holding and loving her, I keep the no-no's off the entire time I'm there. I was getting ready to leave, so I put her back in her bed and put the no-no's back on. I turned on her mobile as I was walking away (it breaks my heart to leave...) and she flashed me a beautiful smile! I think her mobile inspired her, but I still had to stay and take a few pictures while she was willing to give those precious smiles away, so enjoy!

"You almost caught me Mom!"


There's the smile!


getting some sun from her window


Happy girl :)


I LOVE THIS SMILE!!!!!

Monday, October 06, 2008

A Surreal Day

What a day!!!!! I think that pictures can tell it best:


Getting in some good snuggles.
Yes, she's smiling!!!
She decided yesterday that she was ready to share some smiles.
She's still stingy with them, but these are the first smiles she's given out since May! There is nothing more beautiful than her smile! I thought my heart was going to explode when she smiled at me today!



All packed up!
Can you read the sign?
It says:
"I'm leaving Primary Children's after 143 days!"
Unbelievable!! I didn't think this day would ever come!



We weren't the only ones that were excited that this actually happened today!
I couldn't stop crying, I'm such a baby!



Getting loaded into the ambulance for the transfer.



Ready to go to South Davis!!



Getting settled into her new bed. They'll soon learn to put pink blankets on her bed. The blue (and some purples) don't compliment her skin tone.
She was behaving herself without the no-no's for a minute.



She loves her mobile!!
She's getting so big, she weighs 16.5 lbs!



Such a pretty girl! I love her eyes, she's getting so expressive.



This is another one of her new tricks, she loves to blow raspberries. She was doing it all day long today. She's so funny!



Can you believe this? She's holding her rattle all by herself and moving it around. She never ceases to amaze me!

Words just cannot fully express how I'm feeling today. I am so blessed. I know that I've witnessed a miracle. I am so proud of Elaina, she amazes me each and every day. My heart is full of love for this sweet soul that has graced my life. I know that my Heavenly Father hears and answers prayers. I see His hand in my life on a daily basis and I am so grateful for it. Today starts a new chapter in our lives, I hope and pray that we continue on this road to recovery and that home can be in our future.

Thursday, October 02, 2008

Running Away...

Ben and I are off to Bear Lake! We're hoping to enjoy each other and get rejuvenated this weekend! It might be stormy on Saturday, but we'll try to get a little bit of lake time in on Friday then we'll be home on Sunday.

Elaina is just so precious. I spent last night with her and she was very interactive and playful. She got a new toy from her friend Mercydez (thanks Ashley!) and she loved it. We played with it for about 45 minutes before she lost interest. The physical therapist played with it this morning too, and she was just as excited about it. She was able to grasp it and she brought it to her mouth. The most exciting part was that she cooed! I was holding her and playing and singing to her, and she cooed at me!!!!! It was so beautiful! Up until now, the only noise she made was crying when she was unhappy. This was definitely a happy noise. It just made my day! Of course it also made it harder to leave her, but I am so pleased with how she's doing. I have lots more to share, but I'm outta time, so I'll post more when I get back from the lake!
See Ya!!!
Hollie