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!

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!

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

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! :)

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!

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!!!!!

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.

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

Getting Closer

Well, we're getting closer. After meeting with the doctors from South Davis on Monday, a decision has been made to transfer Elaina on Monday Oct 6th. She still needs to finish up some IV antibiotics, and a tiny bit more fine tuning of diuretics and then we can go! They stopped her antibiotics on Sunday, and by early Monday morning her fever was back, so they decided to have her finish the anti-biotics (as well as the work up) at Primary's before she goes. Her NJ tube got clogged again (some of the nurses are just not flushing it well...) and when they replaced it, her throwing up stopped. I think it's odd, her throwing up started last week when the tube was put in. I almost think that there was something wrong with the tube or placement that caused the throwing up. She had several x-rays to check the placement and they looked okay, but it just seems odd to me.
Anyway, I decided to stay home today to get caught up on errands, laundry, dishes, etc. I'm going to take Ben up to Bear Lake this weekend for our last weekend of the season. I'm not sure if any of my sisters will be able to join us, but I think that the fresh air will be good for us regardless. So, I have a lot to do to get ready for the weekend. I'll be spending the night with Elaina on Wednesday and then Ben and I will be off! Hopefully I'll be able to post again before we leave.
Thanks again for all the love and support!
Hugs,
Hollie, Ben and Elaina

Angel Brooklyn Bailey

This weekend has been so full of emotion for me. Darling little Brooklyn Bailey earned her angel wings on Saturday. She was 2 1/2 months old and fought such a valiant fight with her CHD. In the time that she was in the PICU, I formed a very close relationship with her parents, and have been so amazed at their courage and the strength that they have exhibited during this time. They have been an inspiration to me. I pray that they are comforted at this time and that they may be able to find some peace....

Elaina has had an okay weekend. She's been having some problems with throwing up for the past couple of days. It's just secretions and stomach acid, but it's happening several times a day. I also think that she's looking a little bit swollen, but so far the doctors haven't decided if they want to give her any extra diruetics. I think that they are still a little bit worried about getting her too dry again. She's also looking more blue to me, but her sats are in the high 70's to low 80's. We are going to have a care conference with Dr Murphy (from South Davis) on Monday, and I plan to discuss some of these issues with them. I should know when she's going to South Davis on Monday as well. We're hoping it will be some time early this week!

Ben came to the hospital with me this weekend and he really enjoyed spending some time with his sister. He was always so concerned when she would start to cry, and he was SO upset when the nurse had to give her the Lovinox shot. He's been so amazing during all of this, he has had some tough times, but he is doing his best to understand the situation. He's sure a handful though, he's got too much energy to be burn when he's contained in a small hospital room!!!

Little Miss Houdini

Elaina is a very intelligent young lady. It has not taken her very long to figure out that, not only does she NOT like the no-no's, she can get out of them. It only takes her a couple of minutes to wiggle her arm free from the restraint. Once free from the no-no, she love to pull at (or pull out!) anything that she has decided doesn't belong. She pulled out her IV on Tuesday morning and got blood everywhere! Anyway, I just had to get it on video. I'd left the room for just a minute to get some ice water, and when I got back, this is what I found:



She really cracks me up.
We're still talking with Dr Murphy at South Davis, and if the infection on her leg continues to improve, we're looking at transferring to South Davis some time the beginning of next week.
Well, I've got to get Ben off to school and head up to the hospital to give some "huggles and buggles" (Ben's term!) to Miss Elaina!
Hugs!
Hollie, Ben and Elaina

Not going as planned...again!

I was told last week that we would be moving to South Davis at the beginning of this week. As of right now, we're still in the hospital and it doesn't look like we're going anywhere fast. On Friday, we decided it was best to catch Elaina up on her immunizations. She can't have any that are live virus, this is a DiGeorge thing, but she can have all of the other ones. Well, on Sunday morning the doctors noticed that the site on her leg where the shots were given was very red, swollen and was hard. They drew a nice little line around the area to make sure that they'd notice if it got bigger and decided to just watch it. The redness is starting to gradually subside, but it's still swollen and hard. In fact, I think its poking out more than it was the other day. To make things worse, Elaina spiked a fever last night and this morning. The doctors took her down for an ultrasound of her leg, and she's got cellulitis! For those that don't know, cellulitis is an infection of the skin and the soft tissues underneath the skin. So now she's on a minimum of 7 days of Vancomycin and won't be able to go to South Davis until this is cleared up. Oh well, things were going so well that I guess I kind of anticipated a few more bumps in the road. Another thing that happened on Friday night was that Elaina spent another night in the sleep lab. She's been struggling on her c-pap at night, having de-satting episodes, so they wanted to find out what her optimal settings should be. They've decided to move her peep (the force of the air) from a setting of 10 up to 14, and decrease the amount of oxygen from 8-10 liters down to 4-5 liters. So far she's still having a hard time on the c-pap, but I'm hopeful that she'll adjust. I think the main problem is that the mask doesn't fit her well, and when she fidgets it slides off her nose and the air blows into her eyes. Poor baby. We'll get it all situated, eventually. In the mean time, we'll just hang out at Primary Children's! We've got good friends here and at least we're out of the ICU!

Just hanging out and behaving herself with the no-no's off!

Thanks for all the sweet birthday wishes for Ben. He had a great birthday and loved it when I'd read him the comments from "his" blog! I'm still trying to recover from the busy weekend, but it was worth every minute!

To My Birthday Boy

Happy Birthday my darling Ben!!

We had a fun Birthday Celebration tonight at Chuck-E-Cheese. I loved taking you up to the hospital this morning to spend some time with your sister. We got to go shopping for your presents and spent the whole day with each other.
I'm so glad that your 6th Birthday was a fun one!

The last 6 years have just flown by....

1st Christmas 2002

4 months old

Halloween 2003 - 13 months old

Age 3

Filling Elaina's bears with your loves

We have been through so much together, the two of us. You've made me smile each and every day!

I love you SO very much!

Mommy

The Sickies

It started on Tuesday. Ben wasn't feeling well. I couldn't get him to eat any breakfast or lunch. He wouldn't get out of bed. Anyone that knows Ben knows that he never stays still, so when he's laying down in bed and not up and jumping all over the place, I know that something's wrong! Then he started throwing up. Poor kid couldn't keep anything down. I tried Gatorade, Sprite, water, and it all came back up. He was crying that he was thirsty, but nothing would stay in his tummy. I was up with him all that night. Finally at about 6am the puking stopped and he was able to get some rest. When he finally woke up on Wednesday he seemed to be just fine. His fever was gone, and he was back to his energetic self. I kept him home from school just to play it safe, but he's ready and raring to go today. That also meant that I didn't make it in to the hospital. I'm hoping that I can go today, I miss my little Bug. Because I haven't been up there for a couple of days I'm feeling a little bit lost. I'm not really sure what the plan is at the moment, but I know that she's doing well. Elaina is continuing her physical therapy and has only had 1 fever this week. The doctors are still working on getting her fluid balanced and on some minor electrolyte replacement. Otherwise it looks like we're getting closer and closer to being able to move to South Davis. I'd imagine that we'll be having a care conference in the next week or so....
Thanks for checking in on us! We love you all!
Hollie, Ben and Elaina

Physical Therapy Fun

Elaina has had a pretty uneventful weekend. The doctors are still fine tuning her diuretics and balancing her electrolytes, so she's had to have blood draws and a couple of chest x-rays, but that was the main excitement this weekend. I was able to spend the night with her on Saturday and she had a great night. We spent most of Sunday catching up on snuggles. The nurses joked with me that I need to stay every night because the only time she does well on her c-pap is when I'm in the room! Ha!! I wish I was able to stay all the time, but Ben needs to have me home to get him off to school. Oh well, it's good to feel needed anyway!

Right after I got to the hospital today our new physical therapist came in to work with Elaina. I was holding Elaina, but she was awake, so we decided to "play". Elaina seemed to enjoy it and she is doing really well!!

The physical therapist brought in a mat for her to use on the floor.

She's able to hold her back straight without too much help. (If she let go, Elaina would fall, but she's getting pretty good at balancing.)

Elaina had fun playing with the toys. She looked up at me when I called her name!
Here's a short video of her following one of the toys. This was near the end, so she's a little bit worn out, but it's still cute.

The physical therapist told me that she was very impressed with how well Elaina is doing. She said that she's developmentally delayed, but mostly due to the amount of time that she's spent in the hospital. She seems to be catching on quickly, but is still very weak. She will try to reach and grab for toys, but doesn't have much strength to hold on to things. The PT also put her on her side to encourage her to roll over. Elaina was able to balance herself on her side, and would roll onto her back when she was following the movement of a toy. Rolling to her stomach is still far into the future, but she was able to bring her arm from behind her back to her front. She should improve over time, she is just starting on this part of her recovery. I know it probably sounds silly to be excited over such little things, but I just can't help myself.

Elaina also got a new swing today! It was donated to the hospital, and since it's made out of fabric, they don't allow it to be used by multiple patients (to help prevent spreading germs) so Elaina gets to keep it! She absolutely loved it and fell asleep shortly after getting in. Of course I'm sure it helped that she had just used up all her energy in physical therapy!

It's a little blurry because the swing was moving, but she was loving the music and watching the little toys moving above her head!

On a personal note, I broke a tooth today! I'm not really even sure how it broke. I felt something in my cheek, and it was a piece of one of my back molars! Holy cow! Anyway, I've got a dentist appointment tomorrow, so I won't be making it to the hospital. There just aren't enough hours in the day for everything. The nurses assured me that they would hold and rock my sweet girl since I won't be able to be there. I hate going to the dentist.... :)

Fun Times...

Quick update, I'll try to post more later! It's been crazy! I went to the doctor this morning and he confirmed that I'm having an allergy attack. Great! I'm relieved that it's not a cold, now I don't feel guilty for going to the hospital yesterday. Speaking of yesterday, it was a GREAT day!!! My sweet Ben pulled out his first tooth!!! He was so excited for the Tooth Fairy to come that I couldn't get him to fall asleep. He kept hollering at me that the Tooth Fairy hadn't come yet and he wanted me to catch her for him! What a sweetie. In the end he fell asleep, and this morning let out a huge yelp when he realized that he had a shiny gold dollar under his pillow!



Elaina also had a good day. It was her 8 month birthday! The nurses dressed her up in her prettiest dress, and there was a cute poster on her wall. I took in a cake (my favorite scratch cake, pineapple! Yummers!) and some fun decorations for her crib. On a side note, she passed her swallow study! What a good girl! I'm not sure what we're going to do with this information, but at least it's a step in the right direction. Here's a cute picture of her in her birthday dress, and a little video. She's so content, I just wish I could get her to smile.....





I'll update more later!! I'm off to the hospital!!!

Hugs,
Hollie

Daxton Cook

I got the best news ever this morning! My friends the Cooks got a call at 2:25 this morning that their son Daxton got a heart!!!

He has been on the transplant list waiting since the end of June when his small body had 2 heart attacks! He was just one month old at the time. He and his family have been through so much during the past several months, and I just cannot express the overwhelming feelings that I have for them at this time. They are preparing to go into surgery within the next few hours. Please keep them in your prayers that all will go smoothly and that Daxton's body will accept this amazing gift. Please also keep the family that lost their child in your prayers. Pray that they will be comforted in their loss and that they will be blessed for giving the gift of life to other families.

Hugs,
Hollie

p.s. I "hab a code in my node...." Well, I hope it's not a cold, just allergies... Anyway, I'm staying away from the hospital for a few days just to be on the safe side. I would hate to get anyone - especially the babies - sick. I hope to be there on Thursday for Elaina's 8 month birthday, but we'll have to see how today goes. I started feeling better yesterday as soon as it rained, which really makes me think it's allergies...... I'll update on Elaina later!

No No's?

So, Elaina is good at pulling out her NJ tube. So good in fact, that the team has decided to go to drastic measures to prevent it from continuing to happen. Elaina is now the "proud" owner of her very first set of No No's.

She doesn't fight them too hard, but the instant that they are off her, she grabs and tries to pull all the tubes out of her face! The nurses struggled this morning to even get her weight, because she was so grabby! She's such a cute little stinker!!!
Anyway, she continues to have a fever and as usual nothing cultures. The Infectious Disease doctors are going to do one last blood draw, and then we're going to assume that the fevers are due to medications and/or how wet or dry she is from her diuretics. They will only culture her in the future if there are other indicators, besides fever, that she has an infection.
Speaking of diuretics, she's super dry again. I tried to tell them on Friday and Saturday that she was getting too dry, but it seems that no one listened to me. Today they started giving her more "free" water (an extra 20 cc's per hour) to see if they can get her to balance back out. Her sodium was increased and some of her other electrolytes were also out of balance, an indicator that she's dehydrated.
Tiffany, our favorite music therapist, came today and sang lots of beautiful songs. So soothing in fact, that Elaina and I both fell asleep in the rocker. Tiffany asked my permission today to write a special lullaby for Elaina. I, of course, agreed. I can't wait to hear it. Hopefully she'll give me a copy of the lyrics so that I can post it.
Anyway, that's about it. We had a super nice weekend. Saturday morning we attended a Gold Medal Mile Fun Run/Walk for CHD awareness that was put on by Intermountain Healing Hearts. It was amazingly fun and well attended. Ben got a heart snake painted on his face. Isn't it cute??? He had such a fun time with all the other heart families!

I was able to spend Saturday night at the hospital and then went to my cousin Valerie's birthday party on Sunday. It was lots of fun and was the perfect end to a great weekend. Monday started the week all over again with work, getting Ben to school and the daily commute to the hospital. Now I'm home for the night, have a little bit of homework to help Ben with, then it's off to bed and start all over again tomorrow!

I am so grateful for all the blessings in my life! I love my children!! I love my family and all the friends (local, online, etc.) that have been so supportive of me during this long journey. It's not over yet, and just knowing that I have people that care and are praying helps to give me the courage to continue on this difficult path!

HUGS!!!!!!
Hollie