21 Months Old!

Fall is in the air. I cannot believe how fast time is going by! Elaina turned 21 months old on the 11th. She is doing SO well! The last couple months have been crazy busy. Ben and I finally moved closer to Elaina. We're just a few minutes away now, and I LOVE IT!!! It has been SO wonderful to be able to spend more time with both of my kids. Ben started 1st grade this fall, and he's loving it. He turned 7 on the 21st of September, and is now missing his 2 front teeth. Since he's in school all day, and we live so close, I've been able to have some visits with Elaina in the afternoons, pick Ben up from school and take him to South Davis to have a visit as well. There are also days that I go visit with Elaina while Ben is at school and then can have some quality 1 on 1 time with him as well. Ben is adjusting to homework and the move. It was hard on him to leave friends and his comfort zone, but he's resilient and seems to be adjusting well.

Elaina is just getting so big! She's decided that she wants to be mobile. She spends her days rolling around in her crib or a playpen by the nurses station. She can roll all the way over, from front to back and back to front. Once on her tummy, she'll push up on her arms to check out her surroundings. The nurses have told me that they've caught her on her hands and knees rocking back and forth, attempting to get ready to crawl, but as soon as she realizes that she's being watched, she stops doing it. I've never been there to catch her in the act, but I will keep trying! One of these days I'm bound to walk in and see her in action. I've taken to walking in with my camera in hand so that I can capture those kind of moments. And moments like this:


A lot of Elaina's energy is also going to teething! She's now working on 10 teeth! Seems like they all decided to come through at the same time! She's cutting 3 on the top, 3 on the bottom and 4 molars, one in each corner. Poor baby! But she's chewing on everything in sight and still smiles all the time.

I tried to get a picture of the teeth, but got this cutie smile instead. :)

She's thinking about rolling over.....

Ben's first day of school. The timing of our move was not the best. Ben started first grade at his old school in Orem, and then we ended up moving 2 weeks later. I debated keeping him out and having him just start once we moved, but decided that he would miss so much review in those 2 weeks that it would make it harder on him in the long run. He's a trooper, and did really well with the transition. It's always hard to be the "new kid", but he's starting to make friends and seems to enjoy the new school.

We were able to get one last weekend in with the family at the lake. I think Ben could live in the sand and water! He's fearless, and that scares me! Bear Lake stays shallow for quite a way out, and there were a couple of times that he really freaked me out because he went so far away. I had to haul him back to shore and threaten loss of water privileges if he didn't stay close. All in all, I think he had a wonderful time and we loved being able to spend time with family as well!

One of the advantages of living closer to Elaina is being able to participate more in her daily activities. Ben and I were fortunate to be visiting one night when it was bath time! Since I didn't have to worry about an hour drive home, we were able to stay and help with her bath. They put her on a gurney and basically shower her with a hand held shower.

She loves bathtime! She tries to eat the washcloths and splashes in the water!

All clean and pretty after the bath, she's showing us her tricks. If they put her pulse ox probe on her right foot, she pulls it off. For some reason, she'll leave it alone if it's on her left foot, but her right foot is the one she puts in her mouth, so she pulls until the probe comes off. Then she eats it. Of course it alarms, so the nurses come in and tell her she's a stinker for pulling at her probe and making it alarm, but she flashes a smile or two and since she's so cute she gets away with it!

Elaina continues to make so many improvements in her development. She's making up for lost time! She LOVES to be upright. She has fun in her saucer, she loves to sit in it and play with the toys. But she loves, loves, loves to sit in her Bumbo seat in her crib and watch Little Mermaid. The nurses will put her in the seat for a couple of hours at a time. Her back and neck muscles are getting so much stronger. For the longest time, it was difficult for her to hold up her head, even when she was upright. Her head would lean forward, with her chin on her chest. Sitting in the Bumbo has really helped that. She's got much better neck control and is sitting taller every day.

This picture was taken about 5 weeks ago. Notice how she's upright, but leaning forward a little bit?

This was taken a couple of days ago. She's much more upright and is holding her head up better.

Such a happy girl! She's even started laughing out loud! Not every time, but if she's in the right mood and feeling ticklish, she will give a giggle or two! She loves to play pat-a-cake, she loves to read books, she loves to play with her finger puppets. She likes to watch her movies! She's such the couch potato! Nemo is still a favorite, but I think that Little Mermaid is a close 2nd, if not tied for favorite movie. It's funny, if other movies are on she'll still play and interact and fall asleep if she's tired. BUT, if Nemo or Mermaid are on? NO WAY! She gets grumpy if you try to play or sing or take her attention away from "her" movie. It's cute. Kinda. Unless Mommy wants to play.......

And her newest accomplishment? See for yourself:

That's right!!! Sitting up, un-assisted! She lasts anywhere from 1 to 5 minutes. It was hard to get this picture, because she kept trying to grab the camera and it would make her fall over. She's so proud of herself (and she should be!) whenever she does it. Too cute!

Elaina has a cardiology appointment at the beginning of November. They are going to do an Echo this time, so I'm a little nervous. She seems to be doing great. Her sats are high, she ranges from 82-93%. I have noticed that her fingers and toes go blue on occasion, but she pinks back up within a few minutes. Its usually when she first wakes up from napping, so I don't know if that's anything to be concerned about or not. I'll talk to her Cardiologist about it, just for my peace of mind.

Well, thanks for taking the time to check in on us! Most of my boxes are finally unpacked, I have a few to sort through in my closet and some pictures to hang, but then we'll be all moved in. I'm hoping to be in a better routine soon, so hopefully I'll be able to post more often. Not having to drive so far really has it's advantages.

Hugs!
Hollie, Ben and Elaina

The one with all the pictures...aka the long overdue post

What have we been up to, you might wonder? Why haven't I posted for so long? Settle in, this is a long overdue catch-up post!

WELL, for starters, I was having some issues with my lovely computer. The fan went out, and so it decided it didn't like to stay on for long periods of time. Not fun. So, I got a new computer. I wanted to update, but then life got busy! Good busy. Not like last summer. Oh my. Last summer was a living nightmare. We've been having lots of fun and excitement this summer. Elaina is one happy little girl!

We love to play with her and tickle her until she laughs!

I took Ben to ride on Thomas the Tank Engine. I've taken him every year since he was 3. He loves, loves, loves going! There are all kinds of fun activities, trains to play with, stories being read, a petting zoo, and loads of other activities. Not to mention a Gift Shop that will leave your wallet empty.

Riding on Thomas

Ben and Thomas!

Then, of course, we've been spending lots of time with our Elaina-bug. Now that school is out for the summer, I can take Ben with me as often as I like. I don't have to worry about finding a baby-sitter or rushing back to pick him up. It's good for all of us!

Ben and Elaina. She's not so sure about being out of Mommy's arms.

Elaina loves to play in her highchair. They also let her play in one of those saucer things, but I've never been there when they have her in it, so no pics of that yet. Her head control is getting much better. She's able to sit with assistance now for 2 -3 hours at a time.

We went to our Cardiology appointment. It was good. In the words of our Cardiologist, everything looked "Okay". Elaina's saturations have been very good. She's still on a liter of oxygen and will remain on that much for now. She has times that she will "high sat" at 90 or so, but he said that was good for her brain to get a little extra oxygen. She usually sats between 82-87%, which is very good all things considered. He said that he doesn't need to see her for another 6 months! Great news! He made a few changes in some of her meds, took away 2 of her diuretics, and said that once all these changes have taken effect I can make arrangements for her to come home! Yay! He also said that he would like me to think about taking her back to Cath Lab to find out exactly what her heart function is looking like. That won't be until next spring or so, BUT he said that depending on the pressures, etc. that he might consider talking Transplant! WooHoo! I'm not putting all my hopes on this one, but if you remember right, last fall I was told that there were no more surgical options available for her, and now he said that she may be eligible for a transplant! He told me to focus now on her quality of life and not worry about the quantity. He seemed pretty pleased overall with how she was doing. Go Turtle-bug! She sure showed them! :)

All hooked up to the EKG machine.

Back at South Davis after her Cardiology appointment.

So, Ben and I have continued to smother her with love and kisses!


THEN, I got a call from the Recreation therapist at South Davis. She was organizing a trip to the Hogle Zoo for several of the children, and wondered if Ben and I would like to take Elaina with them! Duh. I jumped at the opportunity to do something out of the hospital with both of my kiddos. In all reality, this was Elaina's very first outing. Lifeflights and trips to the doctor/hospital don't really count as outings in my book!

She wasn't so sure of the sun at first....

In fact, she was pretty unhappy with the whole situation.

And she was tired from having to get ready so early. (She's like her Mommy, NOT a morning person!)

Once we started walking, she fell asleep. It felt so, normal, to be pushing a sleeping baby in a stroller.

She only napped for about 30 minutes.

She HAD to hold on to her pacifier.

Ben loved being there with his sister, too!

Happy girl in the shade!

We stopped for lunch. Ben and I brought a 'picnic' from home. Elaina is helping the nurse give her a bolus feeding through her g-tube.

She's been fed, now it's time for a diaper change! lol :)

Saying goodbye at the end of the day. The group from South Davis was only able to spend about 4 hours at the Zoo. Ben and I stayed behind once they left so that we could ride the train and carousel. There were also a few exhibits that we couldn't go in, because they were not accessible for strollers/wheelchairs. It was so sweet, Ben did not want Elaina to leave. He cried and cried once she was put back into the SDCH van. It was so sad to him that she had to go back to the hospital and didn't get to stay and play with us. What a good big brother he is!

Then Ben and I got to go to one of our favorite places on earth, Bear Lake! Just about the whole family was there, except my brother who is working in Alaska this summer. We had so much fun! It was raining and cold most of the time, so we didn't get to swim or go down to the water, but we played lots of games and watched movies.

The sun came out the day we left! Figures!

That's my happy guy!

My cute niece Kate rode with us to the lake and on the way home. On the way back we decided to stop in and visit Elaina-bug. She sure loves her cousin Kate!

Kate, Ben and Elaina

Ben and I have been able to visit 2-3 times a week. Making sure to give Elaina lots of hugs and kisses!

She finally let me get a picture of her two bottom teeth! She's also got 2 on the top, but they're coming in slowly and hard to see in pictures. She's got a great bite! She likes to grab my hand and chomp on my fingers. I love letting babies teethe on my fingers.... :)

She's very good at pulling off all her leads and wires.

She loves to be tickled! She's starting to laugh out loud now. Too cute! Her vocal cords have been damaged from all the intubations, so her voice is extremely soft. So sweet to hear her try to 'talk' and laugh now!

She's learning to pose for the camera....

..... and likes to make faces!

Elaina did so well at the Zoo, that we got permission to take her out any time we like. I get unlimited day 'passes' with her and my insurance will cover 10 overnight stays. I'm going to save the overnights for our transition home! My family (on my Dad's side) has a wonderful 4th of July/summer tradition. Each year we go to a fish hatchery in North Ogden, and catch trout. We then go up the canyon and a have a fish fry, with homemade root beer and then go tubing down the river. It is a super fun tradition that has been going on for over 60 years. Well, I wasn't sure that I wanted to take Elaina up the canyon, since cell phone reception is not so good up there, and if something happened, emergency service wouldn't get there very quickly. But the majority of my family had never been able to meet her since she's been in the hospital most of her life. So I decided to take her fishing. Intermountain Healing Hearts, the support group that I belong to was was having their annual summer picnic at Primary Children's that same afternoon, so I figured I could take Elaina to both activites! I picked her up at 8:30 in the morning, and didn't take her back until 8:30 that evening. We had a wonderful day! It was so nice to be able to go out and do "normal" family activities!

Elaina loved being outside. She sat in the shade and clapped when the wind would blow the leaves in the trees! She saw her first duck fly overhead and her eyes got huge as it swooped in for a landing!

Ben fishing with my mom, my brother-in-law Craig and my niece Kate.

Ben and Kate.

She was such a happy girl!

Back at South Davis, after a long day out with Mom and Ben. She still looks happy! She only slept for about an hour or so all day. She didn't want to miss a thing. The next day, however, was spent catching up. The nurses told me that we must have worn her out, because she slept most of that day!

She continues to just be a happy girl! She's got the sweetest disposition! She's had a rash on her chin, and we've tried a couple different lotions and ointments to clear it up, but that's the extent of her problems right now! Unbelieveable! A year ago, I was making the hardest decisions of my life, and now I have this:

and this:

On July 11th, Ben and I went to South Davis to celebrate another milestone for our sweet Elaina.

She is 18 months old!

We took her for a walk to celebrate.

South Davis has a small playground for the residents, so that's where we headed. Turns out, it's just swings, so it didn't really work out well for Ben, but we had fun getting some fresh air for an hour.

Outside and loving it!

Back inside, we stopped at the aquarium in the lobby. Elaina wasn't very sure about it until she saw a "Nemo" swim by. She still loves watching Nemo and has added Little Mermaid to her list of favorite movies.

Getting ready for bed with one of her favorite CNA's. She had another fun and busy day with Ben and Mom!

We sure love all the wonderful nurses and CNA's at South Davis! They take such good care of my little Elaina-bug!

So, that's a little bit of what we've been up to. Ben and I have both had some illness and loads of doctors appointments, but I'll save that for another post. I'm hoping to find a place in Bountiful in the next few weeks. As soon as we're settled into our new place, Elaina will be able to come home! I hope that we can have a smooth transition. Life just keeps throwing curve balls.....

Anyway, thanks for checking in on us! I know that I'm living a miracle and a blessing in my life. My children are so precious to me. Thank you for all your prayers, support and encouragement. We wouldn't be here without them! Have a great day!

Hugs,
Hollie, Ben and Elaina

Phew!

It's been awhile since I posted. Sorry, I've been crazy busy! I'm finally moved out of my house in Orem and am looking for a place in or near Bountiful. For now, Ben and I are still staying with my friends Colleen and Najee. School ends next friday, so I'll be able to have a little more flexibility with my move after that point. I'm hoping that things will go smoothly and that we can be in our new home soon.

We had a pretty good Mother's Day. Ben woke up that morning not feeling well, and by mid-day had a fever. He slept a good part of the day and had very little appetite. Needless to say, I didn't make it up to Bountiful to see Elaina. Monday morning, he was full of energy, and even though he still had a yucky nose, I decided to send him to school. No problems Monday. I sent him to school Tuesday. He came home and told me he had a headache and started with a really bad cough. By bedtime he had another fever and was throwing up. He had a really rough night, so I decided to take him to the doctor on Wednesday. Well, the doc didn't like that his chest still sounded crackly after he coughed. So Ben got to have his first chest x-ray and the doctor determined that he had a case of Pneumonia! Poor kid! After a 5 day course of anti-biotics, he's getting back to normal. His cough is still lingering, but it's less frequent and he's back up to full energy.

With all the time I spent moving and then taking care of Ben, I wasn't able to see Elaina until this past Sunday. She's so cute. She has finally figured out how to get the nurses attention. She can pull off her leads! Of course, being the sweetheart that she is, she'll either put them back on (the sticky ones) as soon as the nurse comes in the room, or she'll smile and hand them to the nurse to put back together! She knows how to get attention! When the alarms go off, the nurses come in! It cracks me up. She's still trying to roll over, but doesn't like that her g-tube gets in the way. She also likes to try and pull herself up by grabbing the rails on her crib. She doesn't get very far, but she's getting stronger. I really think that her high chair has helped a lot. She loves to play with toys and watch movies in her chair. Sometimes she's out in the hallway so that she can see all the action and sometimes she's in her room watching movies with her roommate. Too cute! Her upper body strength and stability are increasing. She likes being upright! As I was holding her on Sunday I noticed that she would try to pull herself more upright. When I sat her up on my lap I got a great big smile! Little baby steps I know, but I am so proud of her!



I realized that Monday (the 18th) was a 1 year anniversary. It was the date she was admitted to Primary Children's last year. I can't believe it's been a whole year since I've had my baby girl home. What a year it's been, too! Crazy. Hopefully she'll be home soon and this can be all be behind us. She's getting there, my little turtle-bug!

This is just after her admission to Primary Children's last May. Dated May 19th in my photo archive.

This is now. Holy cow, what a year!

Well, that's about all I've got to report for now. We see Cardiology on the 27th, so I should have another update then. For now, we'll just keep on keeping on! Have a wonderful and safe Memorial Day weekend!

Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Bout time!

Okay, this post is long overdue. But in my defense, there has been a lot going on! I'm trying to get moved out of my house in Orem. I've moved in with my friends Colleen and Najee temporarily. Hopefully this will allow me to be able to save up the necessary amount of money to get moved up to Bountiful once school is out. Between working, spending time with Ben and driving up to spend time with Elaina, I've just been too tired to post. Besides, I wanted to share some pictures, and this way I get to post LOTS of them!!! Anyway, we had a wonderful Easter. Ben was sick, so I didn't take him up to see Elaina. I celebrated Easter with her on Saturday and then came home in time to color eggs with Ben and spent Easter day with him. It was very nice.

Elaina has been doing great! She is such a happy girl! She's just full of smiles, and I even get small giggles from her if I tickle her just right! We've started letting her sit up in a high chair for a little bit each day. She likes to lean to the right, so she gets a toy or something soft by her side to help her sit up straight. Friday was the first day, and she only lasted about 1/2 hour before she started to cry and wanted out. The nurses put her back to bed and she fell asleep in minutes. Sitting up is really hard work! Saturday she lasted an hour, but she only made it 45 minutes both Sunday and today. I don't have any pictures of her in the chair yet, they always put her in when I'm not there, but hopefully I'll be able to get a picture some time this week. I took Ben with me on Sunday and it was a great visit. We put Nemo on and they watched it together. Elaina smiled and "talked" (or rather grunted!) through the whole movie. It really is her favorite, she gets so excited at certain parts, she'll kick her legs and then extend them out straight and reach for the tv. It was fun to see both of my kids interacting together. They love each other so much! I had Elaina on my lap and Ben reached over to give her a hug. As he was hugging her, she leaned in and gave him a big wet baby kiss right on the cheek! I think it made his afternoon! Then, as we were getting ready to leave, I put her back in her crib. She rolled to her side, grabbed one of the bars on the crib railing and rolled herself onto her tummy. She just looked at me, like "and what do I do now?", so I rolled her onto her back, and she immediately rolled towards us again. Ben decided that meant that she didn't want us to leave, and I'd have to agree. It's SO hard to leave her! I'm still excited at the prospect of bringing her home soon. She's doing well, and hopefully it will continue!

Well, it's getting late, and my computer takes forever to upload photos, so I will leave you with these! This is what we've been up to!

My pretty little Easter girl!

Sitting with assistance! She looks so pink in this one... :)

Pulling her sock off. They can't put her pulse ox on that foot because she'll pull it off. She actually managed to get her toes in her mouth while I was holding her on Sunday. She seemed very proud of herself when she did it too!

This is my sweet Aunt Janet. She's my Dad's oldest sister. Elaina and I were thrilled that she came to visit!

She's got the "touch". She had Elaina asleep within a few minutes. Elaina just loved being rocked by her!

How sweet, Elaina is just holding onto Janet's hand. It was a wonderful visit!
(Thanks for bringing her Marney! I should have taken some pictures with you too!)

The aides were running behind schedule this day! I got there and she was still in her nightgown with her crazy hair! Too cute!

Such a happy girl! She's reaching for my camera strap. If I'm not careful she grabs it and tries to steal my camera so that she can eat it. :)

Mom and Elaina, having some snuggle time! I love the dress she's wearing with the ladybug. I bought one for her when she first had her g-tube, and I swear this dress runs small, because after it was washed, it didn't fit her. So I rebought it in a size 3T, thinking it would fit for awhile, and it still seems to be a little on the snug side to me. Hmmmm, maybe she's just bigger than I think she is!

Loves with big brother. So sweet!

So Ben loves to hold his sister. He hates that I always take my turn first (what can I say, I miss her too much to hand her over when I first get there! I need to get my kisses in first!) Anyway, I finally gave him his turn and after holding her for about 10 minutes, he said, "Mom, Elaina feels good in my arms! I like how she feels!" He is going to love having her at home!!!

This is my favorite picture of them all! I LOVE her smile! She is so happy to be in Ben's arms! It just melts my heart!

Well, thanks for checking in on us! We're still trucking along and someday soon I'll be able to post more often, because we'll all be under the same roof!
Hugs,
Hollie, Ben and Elaina

A Light at the end of the Tunnel....

I had a Care Conference at South Davis.

It was WONDERFUL!!

Here's the best part:

Her doctor looked at me and said, "So, when do you want to take her home?"

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!
Time for a BIG Happy Dance!!!!!!!!!!!!!!!

Okay, so I can't take her home just yet, but it's out there. We're discussing it. It's going to happen. She still needs to be cleared by Cardiology and we don't see them until May 27th. In the meantime, I get to start learning her cares (g-tube, etc.), they are going to fine tune her meds, and Elaina will be working more with Early Intervention. If things go as planned, I could have her home in early June! I am SO excited! The best part is that she won't be coming home on Hospice, she'll just be coming home.
HOME!
Okay, can you tell I'm little excited about this? As long as she continues to be stable. As long as she continues to sat well. As long as she doesn't have any setbacks, she's coming home. I just can't stop saying it! She's gaining weight so well that they are going to cut back her calories. Everything that was talked about in the care conference was positive.

Thank you all so much for your love and support. I am so grateful for a kind and loving Father in Heaven! I am so grateful that He has allowed Elaina to blossom and grow. I know that it is through His Mercy, His Love and His Divine Plan that she is here. I am so grateful for my Savior. What a beautiful Easter season. My thoughts dwell on the beautiful loving gift that the Savior gave us. He suffered for all of us, He knows the pain that Elaina has gone through, as well as the grief that so many us of have felt in our lives. I know that God lives and that He loves us! I am so Grateful that my heart is overflowing!
Hugs,
Hollie, Ben and Elaina