3.29.2008

Random Update...

We realize our updates have been slightly skimpy and definitely not very detailed, so we thought we would take some time now to really give you the full details of what's been going on and what is happening now.

The Catheter part of the procedure did go well. Topher was a little bit nervous because when they took us back after it was done, it turns out that they actually had to use 2 stents instead of one. The Dr. said this is the 2nd time he's had to place 2 instead of 1, and he assured us it was ok but Topher was just nervous about there being two. The Dr. said the only real risk was that there was a possibility one of the stents could block blood flow to from going back up to the head and brain. However, after they monitored it carefully and after 3 echocardiograms to monitor the blood flow, it's been determined that the blood is getting back up to the head ok and that she is doing well. We now have x-ray pictures that show the stents in her PDA as well as the wires that are holding her sternum together after the surgery! Definitely something we never thought we'd have a picture of.

She had some rather large bandages on her after the procedure, they have since taken off the big bandages and al that's left is the little tape like bandages that hold the skin together. The only problem is that when she gets really angry, (she's kinda feisty) she sort of rips the skin open again and squirts blood and fluids on her pretty blankets!! Little Stinker.

As of yesterday, they started weaning her off the ventilator. They started the day out giving her 24 breaths per minute from the ventilator and by the end of the evening she was down to 12. Today, she is still at 12, but they've started performing 30 minute tests where they turn the ventilator off to see how she does on her own. So far she's done really well. The first test they did, she was breathing a little too frantically like she was just too exhausted to do it by herself, so they turned down her pain medication, and the 2nd test without the ventilator went really well. They're going to do another one tonight and according to the nurse we should be able to expect her to be off the ventilator by tomorrow!!! This is such great news. We feel so blessed that it seems like everything with little Grace has just been a "best case scenario" kind of situation. She's always just done the very best that she can with every bump in her path. We are so proud of her and her determination.

Today she had a little song machine that plays her lullabies and classical music, as well as a toy for her to look at since she's been actively awake lately.

Something sort of comical about her, and just to show her stubborness, is that she needs to be urinating frequently, because they monitor it very closely. And last night and this morning, she didn't want to pee!! They kept waiting and waiting and waiting, and finally, they were about to give her some medication to speed up the process, but as the nurse approached the bed and saw Gracey squirming, she smelt something and with further observation noticed that within a period of 5-10 minutes Grace had completely SOAKED through her diaper and every layer of her bedding!! They had to change all the sheets and clean her all up. Just goes to show she's gonna do things her way and her own pace. Even if it means she wets her own pants. :)

Anyway. she's a cutie and we're absolutely in love with her.




Thank you again for your continued prayers and support. We really do appreciate them. We apologize that there has been an unusually long amount of time between posts. Please be patient with us!! We're doing our best. Our main focus right now is trying to be parents as much as possible. We get overwhelmed and sometimes just forget about everything except out little girl. She really is the highlight of our lives right now. We are trying our best to include everyone in our journey and in little Grace's accomplishments and happenings...forgive us if we get greedy sometimes and forget to share the news!! :-)
Thanks for your love, support and prayers! Obviously they are working wonders because Grace is beating all the odds. Thank you Thank you!
Love Alysia, Topher and Grace

6 comments:

JesnCam said...

That is such GREAT news. We are glad to hear that little Grace is doing so well, and that she is such a fighter. I love that she is stubborn and doing things her own way. What a strong spirit she has.
We are all praying our guts out for you guys. Your strength is amazing. Don't ever apoligize for being parents and focusing totally on your cute, baby girl. That is what you should be doing. The rest of us can wait for any and all news.
Love, Jesse and Cami Bell

princess jen said...

Where, oh where, I wonder, does she get this little stubborn, do-it-my-own-way streak that she has?! ;)
I'm glad that you two are enjoying your sweet little Gracey. She is a doll. Thanks for sharing pictures with us since I can't up to see her as often as I would like. Anya thinks she's beautiful and prays for her all the time.

Carlee Hoopes said...

I know you don't know me, but I am Emily's cousin-in-law. I have been following your story ever since I read about it on her blog.

Anyway, I just want you guys to know that I am very touched by your amazing attitude about everything. I had my first baby, a little girl named Maggie, in October and your story just makes me realize how truly precious these little babies are and it reminds me to give her extra hugs and kisses every chance I get. Thank you for sharing your story and for your unbelievable faith. It's truly inspiring and makes me realize what's important in life.

Please know that we are praying for you guys and for little Grace. I think you'd be surprised at how many people are praying for your family daily...even complete strangers. Grace is truly adorable! Congratulations on having such a beautiful baby girl!

Super Daysh said...

Thanks for the update Bug! We are so glad to hear that all is going well. We love you all and will keep praying for little Grace!

AJ Finnegan said...

Oh, man! Those are the sweetest pics of Gracey! I am so very happy that she's doing as well as she possibly can.

And yes, your priorities should lie entirely with Gracey. We are just happy to be a part of it when we can be.

I'm seriously in love with little Gracey, too, and I can hardly wait until I meet her :)

Amy

Lauren K said...

Ali she is just BEAUTIFUL! I'm so glad she's such a fighter. Love you, I want to come visit sometimes towards the end of April.
Love you tons!