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

Ramblings of a tired Mom....

What a day! I am so tired that all I really want to do is crawl into bed and sleep for a year, but here I am on the computer instead. Elaina is...well, she's being Elaina. Now that we're on the floor, we have a whole new group of doctors (and residents) working with Elaina. Not only does this have the positive aspects of new eyes seeing things that may have been overlooked, it has the negative aspects of re-doing things that have already been done. The new docs want to revise her diuretics, they think that they are the cause of her fevers. So here we go again. I gave them my input and asked them to check with the other doctors and her Cardiologist, so hopefully that happens. I had a care conference today, and it went fairly well. Elaina still needs to prove some stability/predictability in order to be moved to South Davis. I was a little bit resistant to continuing the South Davis plan initially. After all, the reason I'd looked into going there in the first place was because we weren't able to get to the floor and I wanted Elaina to be in an environment, out of the ICU, that she could prove a little stability before she comes home. (I really don't need to have her Life Flighted back.) Now that she's on the floor does she need to have another downstep? Actually, it might be a good thing. A very good point was made at the meeting today, Respiratory Season starts in a few short weeks. Primary Children's is the place that all the kids with severe respiratory illnesses (RSV, Influenza's, etc) will be admitted. They won't be admitted for treatment at South Davis, so in order to protect Elaina from these nasty bugs, South Davis is still an option if she's not stable enough for home within the next 3 weeks. The other main issue of concern was feedings. Elaina has become VERY proficient at pulling out her NJ tube. In fact, she's pulled it out 3 times this week. (Silly girl, she just doesn't understand that they have to put it right back in!) They don't have the ability to put in NJ's at South Davis, so if she pulls it out, she gets to take a fieldtrip back to PCMC to have it put back in. SO, we're thinking about doing a swallow study next week to see if she has the ability (or is strong enough) to protect her airway and maybe do NG feeds again. The problem would be giving her enough calories during the day, because it would be too dangerous to feed her at night while she's on the c-pap (it dramatically increases her risk of aspirating). We wanted to eventually get her strong enough for the Nissen and either G-tube or GJ-tube surgery, but that is still 4-6 months down the road. Now it's weighing the risk/benefits of NJ versus NG while she's still in the hospital. Even though her aspiration risk would be greater with NG feeds, if she were to be at South Davis and monitored by nurses, it would be safer than being at home with me sleeping at night. This could possibly mean keeping her at South Davis until the surgery, so another 6 months in a hospital setting. I don't know what to do. I want her to come home, but I am just one person and can't stay awake 24 hours a day. I can't afford to hire a nurse to come in at night while I sleep and my insurance won't cover it either. South Davis is an excellent facility, and their focus is really rehabilitive, so they would be able to help Elaina with her delayed developmental skills. They can work with her on the feeding issues (other than the constant hassle of replacing NJ tubes) and provide her with a better quality of life than she has at Primary Children's. So I have more big decisions to make in the upcoming days and weeks. Right now all I can do is wait for the tests to be performed and for the results to come back so that I can make the best decisions possible. I can't worry about something that hasn't happened yet (well, I could but that would be an awful waste of precious energy!) and I'm not willing to make an uninformed decision, so we'll just have to see what the next couple of weeks brings. Well, I'm going to go crawl into bed now. This whole move to the floor and big care conference stressed me out and I haven't slept well for a couple of nights. Hopefully I can get a good nights sleep tonight so that I can enjoy my weekend! Thanks as always for all your love and support.
Hugs!!!!!

Surprise!

Surprises today!!! I decided to go to the hospital late today. I had some housework that needed to be done, things to put away from our weekend, etc. I figured that since I stay the night at the hospital on Wednesdays, I'd get some things done while Ben was at school. I was just getting ready to leave when my Mom called. She told me that the hospital had been trying to get in touch with me, and when they couldn't, they called her. They had been calling my cell phone, which was in my purse and I didn't hear it. Anyway, the reason that they were calling was to let me know that they'd decided to move Elaina to the floor!!!!!! We are officially out of the PICU!!! I must say that I was not prepared for this, and so I've gone through a huge range of emotions today. I've mostly cried and cried. I can't say that I was excited when I found out. I was actually a little bit upset and frustrated! I know I'm going to sound crazy, but just yesterday they told me that she wouldn't be able to be moved anywhere until next week. We also have a meeting set up with the doctor from South Davis on Friday. The whole reason that I was looking at having Elaina go to South Davis was because we couldn't get her to the floor! Now that she's here, is South Davis really necessary? Urgh! I am very confused about the direction that we're going in now, and I'm not really sure what to do. I was also a little bit upset because they moved her to the floor before I could get to the hospital and I'm the kind of person that likes to have some control in what happens. Anyway, now that I'm here and we're all settled in, I'm feeling pretty good about the change. I love my floor nurses (I had the same ones when we started out here in May!) and they all remembered Elaina. Melissa (my favorite tech) came and loved on Elaina for a long time. She was SO happy that we were back upstairs. I know that Heavenly Father answers our prayers and that we don't get to choose the way that they are answered, this is part of His plan, and I need to just accept it as part of the miracle of her life.

We're back!

It was a wonderful weekend.

I got some much needed rest, relaxation and fun outside of the hospital.

Ben had a blast -

and we avoided getting sunburned.

(watch out girls, shark's gonna get ya!)

The weather started out great, lots of sunshine with a cool breeze by the water, but by the end of the weekend it was rainy and storming.

(is this guy happy or what?)

We enjoyed the cabin and played games and made some great family memories.

(My niece Maddie, nephew Cameron, Ben and brother's in law John and Craig playing a game outside on the deck before the weather turned on us!)

(My niece Kate playing a game inside)

My Mom and Dad bought into the cabin (shared with 3 other families) just this summer. They live in Nebraska and will be moving back to Utah when they retire next spring. Since they weren't able to be here for our first official weekend, my sisters and I (and our families) did our best to "break in" our new family retreat. It was great, hopefully we started some fun traditions as well!

Elaina had a good weekend. NO FEVERS until I got back today! What the?????? Anyway, they started her on her antibiotics today, and we have a care conference planned for Friday. Dr Murphy from South Davis will be in attendance and we will be making some decisions as to Elaina's future care at that time. I missed her like crazy over the weekend and it felt SO GOOD to hold, snuggle and catch up on kisses today. I think she missed me too. She was asleep when I first walked into the room, but as soon as she heard my voice she woke up and got fussy until I was able to pick her up (I had to wash my hands first...) and give her some long overdue smooches! Mmmm, she's fun to kiss!

Just snoozin'....
(the stupid thing between her eyes is to protect her skin from the c-pap)

Not too much else to report, I'm exhausted from my day today.... Sometimes vacation (all the packing and unpacking) is a lot of work!!!! Well worth it though! I'm ready to face the next leg of this journey!
Hugs,
Hollie, Ben and Elaina