Doing Well

This past week just seems to have flown by. I seriously don't know where the time goes! I was able to attend a Care Conference at South Davis a few days ago. It was nice to be able to meet with members of Elaina's "team" to get the full picture. Doctor, nurses, respiratory therapy, nutrition, child life, early intervention, etc. were all in attendance. The general consensus was good. Elaina is in a very stable place right now. They reiterated that she is still very fragile and the scales could tip very easily. I don't think that she'll ever get out of the fragile category. But stable is good. Her saturations are continuing to improve. She was between 88 and 90 when I was there for a few hours today. In fact, I thought she looked practically pink!! :) She's attempting to become mobile. She likes to scoot herself around in her bed. She'll start at the top of the bed and arch her back until she's at the foot of the crib. She turns herself sideways and sometimes trys to roll herself over. She gets about half way over and then runs out of steam. She's got the sweetest little personality. She's so playful and happy all the time! She really likes to watch Disney/Pixar movies. I think that she likes the colors and fun characters. Her favorites are Finding Nemo, Cars and Monsters Inc. She also loves to listen to fun upbeat music. We had a really good time today playing pat-a-cake, itsty-bitsy spider, and piggies on her toes. She is extremely tickilish but doesn't laugh out loud. So cute! That pretty much catches us up. Surgery is still planned for the beginning of February, her snotty nose and cough have cleared up, so hopefully she won't have any problems that could delay our big day. Well, I thought I'd finish up the post with a few pictures from my last couple of visits. She's just getting so big!! By the way, she weighs 20 lbs!!! But she's still at only 30% on the charts. Not bad for a little one that started life out at barely 5 lbs!

Sucking her thumb, I can't wait until the no-no's can be gone for good!

I think she might finally be teething. I don't feel a tooth quite yet, but she's drooling more and her gums feel harder to me. She rarely takes her fingers out of her mouth once her hands are free.

I think she was trying to talk to me. She's just so expressive!

Such a Big Girl! We'd just finished playing with some of her toys.

Chewing on some of her toy rings. I love how she is starting to explore things more with her mouth.

:) So cute! I love the ponytail on top of her head. :)

Her smile melts my heart every time!

Playing with her wires. At least it's not the NJ tube!

Trying to figure it all out.

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

Picture Links

Okay, so I am SUCH the slacker lately. I have no time to accomplish all that I need to accomplish. So, I've put all the Christmas and Birthday pictures in my Facebook albums and thought that might be an easier way for anyone who wants to to look. I've linked it above, so just click on "Christmas" or "Birthday" above, and you should be directed to the right place. It took me less time to create the Facebook albums with all the pictures than it took to upload the few I posted yesterday on the blog! Go figure!
Anyway, I've got to run again, but I appreciate all the love and support! I had a great birthday yesterday, thanks for all the well wishes!

Hugs!
Hollie, Ben and Elaina

Birthday Girl

Happy 1st Birthday Elaina!

We had a wonderful Birthday Celebration for my little Miracle. Here are some pictures of her big day!

My computer has NOT wanted to cooperate with me today, so I will be adding and updating this post tomorrow. Today is my birthday (Elaina was my present last year!) and I need to leave for a birthday dinner at my friends house. For now, I hope you enjoy the few pictures I was able to get on here!

Hugs,
Hollie

False Alarm

No surgery today. Apparently there was some kind of mix up with scheduling and Elaina's surgery has now been scheduled for February 2nd. In a way this is a good thing. I hadn't been able to talk with the doctor about the surgery before today. The doctors at South Davis had only scheduled a g-tube placement, they didn't schedule the Nissen proceedure. When the surgeon talked to me today, he told me that after reviewing all of Elaina's charts, he wondered why he wasn't also doing the Nissen. I told him that to the best of my understanding, she needed to have the Nissen for her reflux and throwing up problems. The main reason for her being fed by NJ was the risk associated with throwing up. So now we're on the same page and both the Nissen and G-tube will be done. Good news, he didn't forsee any complications during recovery for her. He thinks that she is strong enough to undergo this surgery and will only need a couple of days in the PICU post-op and will only need to be at Primary Children's for a week before being able to go back to South Davis. This truly is one step closer to getting her home. I'm very hopeful that by spring, when there is much less risk of flu/strep/rsv, etc being brought home, I'll be able to have her home. She was in a very good mood today and was quite playful and fun to be with. I was so glad to be able to spend time with her. Her nurses had her dressed up in a cute outfit and had managed to pull her hair into a tiny pony-tail on top of her head. It wasn't a big ponytail, but it was completely adorable. She's so cuddly that I just want to eat her up! :)

Ben's appointment went well yesterday too. His MRI results were normal. Such a huge relief! The neurologist thinks that he will outgrow the seizures once he's in his teens or early 20's, and he seems to think that the medication is working well. We have to go back every 3 months for follow up, and if Ben has another seizure at this point, I need to call and let the doctor know. Otherwise, Ben is doing just fine. I hope that I'll be able to sleep a little better now. I was hopeful that the results would be good, but there is always that little voice of worry at the back of my mind that I just can't quite shut out.

Well, things are still crazy busy and it seems I rarely have time to do everything on my list that I need to. But there is always tomorrow, and somehow I just keep on going on! I promise that I will post lots of pictures soon. I keep taking them, so I have lots to share. I want to see if I can figure out how to make them into a slideshow or something fun when I have some time this week.

As Elaina's first birthday approaches on Sunday, I just have to say how amazed I am by what the past year has brought me. I am so grateful for my family, for loving friends and most importantly, I am grateful for my Savior. I know that I have witnessed a miracle and that Elaina's life is a gift from a merciful Father in Heaven. Looking back, I don't know how I survived some of the trials. I just know that I wasn't alone and that He continues to bless and strengthen me. I am excited for the coming year, and I look forward to the challenges that are ahead of me. Elaina's continued improvement and good health are a positive sign. I know that things can change quickly, but I feel that I am so blessed for every day, every hour and every minute that I have her in my life. Ben and Elaina truly are the greatest gifts I have ever received and I am so proud of both of them.

Well, thanks for checking in on us. Thank you as well for all your continued prayers and support. We couldn't do it without you all!

Hugs,
Hollie, Ben and Elaina

Happy New Year!

I hope that everyone was able to have a wonderful and safe Holiday! Ben and I were able to spend a week with my sister Tricia and her family for Christmas. It was very nice to be with family and for Ben to spend time with his cousins. Ben was so cute on Christmas, he was thrilled with all the presents that he got and was on his best behavior. We were able to attend a couple of family Christmas parties and I really enjoyed getting to catch up with cousins and aunts and uncles. We were also able to spend some time with my parents over Christmas and went out to the movies.
Elaina continues to astound me! Her oxygen saturations are staying in the mid 80's (82-87%), and her color is continuing to improve. She's trying to roll over and is full of smiles! She is so strong and beautiful! It was so fun to open presents with her and see the excitement on her face with some of the toys that she got. I left my camera at my friends house (oops!!!), but I will post pictures as soon as I get the opportunity.
Next week is going to be a busy one. I've got 2 appointments on Tuesday up at Primary Children's, one for Ben and one for Elaina. Then we have our big day on Tuesday. I will try to post more as I know what is happening.

Well, sorry for the short post, I just wanted to give a quick update and let everyone know that I hope you have a fantastic New Year! I plan on it being a good one!
Hugs!
Hollie, Ben and Elaina