Wednesday, January 07, 2009

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

11 comments:

The G Fam said...

Happy birthday Elaina! What a miracle you are! How grateful we are to know you and what an inspiration you are!

Valerie said...

I just have to say that I miss you immensely! I still have you and Ben's Christmas presents, just sitting here, because I haven't seen you since Christmas! I think that's a sad state of affairs! I think you should come visit me sometime, may-be even while my parentals are in Park City without me, and I'm all here by myself? But then, I'd be happy to see you whenever! Love you!!!

The Portas said...

Prayers coming your way for the approaching surgery.. Everything will be great and as you said, one step closer to home!

The news about Ben is a huge relief! Thank God.

Get pics up when you can...I know how busy you are, so don't feel pressured. Just know we will all love seeing them when you have the time!

xoxo

The Hood's said...

So sorry for the delay in surgery, but it sounds like a blessing! What a fighter that little Elaina is! Happy Birthday to her on Sunday! What an exciting milestone!
I am so glad that Ben's tests came back normal. What a blessing!
Once again, you amaze me with your ability to keep up with everything! Keep up the good work. Prayers will continue to be offered for your family!

carolyn q said...

Just checking in to see how things were going and read that surgery was delayed. In the end it sounds like it was the best thing. Now you can enjoy her on her Birthday not recovering.
WOW. . what a difference a year can make. I can't wait to do the Birthday Wish on IHH . .she has come so far :0)
I am also glad to read that Ben's MRI came back normal and I pray he doesn't have any more seizures.
Lov ya!

Jake & Stephanie Ellinger said...

I can't believe that they wanted to do the g-tube without the nissen! Hmmm...

Have you gotten Elaina's eyes checked more than what they do in the NICU? You should get her into the eye docs at Primary's. I thought Nathan was fine with eyes but he's extremely farsighted. He started wearing his glasses on Wednesday and he's only pulled them off once! It has made such a difference to him! Dr. Hoffman said these craniofacial kids almost always have eye issues.

Nathan's having his next cleft surgery on February 9th. Hopefully Elaina will be long gone before we go in for thse 4-5 days.

Nathan wants to wish Elaina a very happy 1st birthday with MANY more to come!

Grégoire said...

Wow, this blog is something. Dunno how I got here but it has been a good read. Here's hoping the best for your sweet baby and all her family.

Vanessa said...

I'm so glad they got the surgery figured out.

What great news about Ben's neurology appointment.

I can't wait to see the pictures. I use onetruemedia.com to make slideshows. Really easy and user friendly.

Nic and Ashley Haws said...

Happy birthday Elaina! I am always thinking about you! Your mommy loves you so much! She is a special woman. Elaina, I hope, with all my heart, that you will be able to gain the strength and health you need to get you home. My prayers are with you, your brother, and your amazing mommy.

Cindy said...

Happy birthday Elaina (and to you tomorrow, Hollie)!

Hilary said...

Hi, I don't know what is wrong but I try to post and it won't show up. Happy Birthday Elaina!! We are so proud of her. What a miracle!! Super dooper Trooper!! Let us know when the surgery is and we will come and visit. Daxton is having a gtube placed on friday. Hope to see you soon. Much love, Hilary