Friday, July 17, 2009

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!

Hollie, Ben and Elaina