3.23.2008

Surprises, Information, and Pictures!

Little Gracey had a surprise for her mommy and daddy yesterday...we went to see her and she was under her "tanning bed" (she is a tiny bit jaundiced). When we came they took her goggles off...Topher and I started talking to her and she immediately started to open her eyes to see who it was!
We got our faces nice and close to her and she just blinked at us for another 10 minutes. Just opening and closing her eyes and staring at her mommy and daddy. It was so sweet! It made my day for sure. She has BEAUTIFUL dark blue eyes...and yes, I understand most babies eyes are blue to begin with, but I think hers will stay blue. They are a dark grey/blue and beautiful!!!






Another surprise she had for us was a smile!! Maybe it wasn't really a smile, but it sure looked like one to me. This also brightened our day. Most of the time she is either totally passed out, or she is scrunching her face up and making a sad face from being irritable. But she gave us some smiles, and we of course had to share them.






Mommy changed her diaper again and of course had too much fun as usual.






And here are some pictures of her sun tanning...one is her "pondering" her situation...hehe, and the other one is her sucking her thumb that mommy helped her discover.





The information we got yesterday came from one of the Surgeons that perform the Hybid surgeries as well as the 3 stage surgeries. He came and met with us to bring us a little more up to date.
As it turns out they will be having another meeting with the cardiologists, surgeons and transplant team to discuss more what procedure is in her best interest.
Originally we had been under the impression that she was no longe a candidate at all for the 3 stage surgeries...but what he cleared up for us is that she is a candidate, but, they have no statistics or information on what her condition would be like. They have never actually seen this kind of a heart condition, and so they don't know how her heart would respond to the 1st surgery. He said that theoretically she might be just fine with the first surgery, but also, it might not work at all and be too risky to attempt.
So, on Monday they'll be discussing more if they should offer us the staged surgery still as an option or if they wouldn't be willing to do it.
The Transplant option is still in there for now, but he said that that could change also. The Hybrid procedure is so new that the surgeons have actually only done 6 total. One of them was done for a transplant, and that baby did make it to a transplant. The other 5 were done for different reasons, and he didn't tell us the sucess rate. He did mention however that they are a fairly low risk surgery and was very confident in performing them.
Something else they are trying to determine, (and they are talking a lot with surgeons from Denver) is how soon to perform the Hybrid procedure. They had originally told us they would be able to do the procedure within a week or two, but I guess the protocol at the Denver hospital is that they wait for 1-3 months sometimes before doing the surgery.
The Dr. we talked to yesterday was very supportive of the idea that the best place for the baby to be is at home, and that he was in favor of doing the surgery sooner rather than later so that she could be home, recovering and waiting for transplant, with her family.
Topher and I agree!
So, that is all the information we got yesterday. Again, its a lot. But its also very inconclusive. So, not too helpful. But good to know I suppose.
Hopefully they will come to a more concrete decision of which options to offer us on Monday and then topher and I will be able to make a decision sometime next week.

ALSO...this morning Grace was moved down to level 2 into the PICU instead of the NICU. Supposedly the Dr.'s who take care of the HLHS babies prefer to do that in the PICU...so, we haven't gone to visit her in her new spot yet, but that will be a change for her. Hopefully her view is as good there!

Thank you for all your prayers and for fasting for us. We appreciate the support and don't know what we would do without it.
Love Buggy, Topher and Gracey

12 comments:

crowfamily said...

Yea for baby smiles! I really like her pink headband.

Anonymous said...

Happy Easter, Topher, Buggy and Grace.

What an absolutely beautiful girl you have there! She's a knockout.

Rachel Sweet

AJ Finnegan said...

I am crying my eyes out with joy, looking at sweet little Grace with her beautiful blue eyes and a DEFINATE smile!! That's just how babies smile at first!!

Oh, I feel so encouraged for her right now! I feel so much more faith than I've even had :)

Thank you so VERY much for sharing these pictures, especially on Easter! I feel like they are little eggs in a darling basket with pink bows :)

I truly can't wait to see her in person. We are fasting tomorrow, and will pray for a conclusive & confident path from the surgeons, and the very same blessings for both of you!

Yay!! Gracey opened her eyes!!!!!!

:) Amy

Mythreesons said...

She had her eyes open for you!!! She's even cuter when she's looking at you and I love the "tanning bed"... that was funny and made me smile. Not sure what to make of all your new information... it all sounds so overwhelming and just seems to raise more questions, but at least they're looking at every possible option and trying to exhaust everything.... that makes me feel like those doctors are really trying hard to do what's best for her. I can't wait to see her and you guys tomorrow... have a nice visit with her tonight. She's so beautiful. Happy Easter!

Atkinsonam said...

Topher and Buggy,
Your faith and trust is contagious. The entire family is uplifted because of your attitudes. The pictures are precious. We took some more today at the hospital. Her eyes were open and she was sucking on her tube like crazy. We sang "Happy Easter to you". She has good hearing. She found it very repulsive! I love that you are reading books to her. I can really tell she likes to be touched and talked to.
Everyone is united in prayer. I believe we are witnessing a small portion of how "Families can be together forever."
We love you,

Grandpa and Grandma Atkinson

Super Daysh said...

Bug! She's so cute!! I love the little sun tanning goggles. ;) She looks so bright and adorable with her eyes open. Such a pretty little girl. We're still praying for you and love you guys lots!!

Carl & Karen said...

Thank you so much for these great updates, and especially for including all the pictures. Gracey is a beautiful baby, and our favorite pix are when she's with Mommy and Daddy. Don't change too many diapers, Bug--isn't that Topher's job??? We love you and our prayers are always with you. See you soon!

princess jen said...

Yay for open eyes. I got to hold Kaia Avi today (Julissa's little girl) and the whole time I was cuddling her, I was thinking about baby Grace. Jules said you can call her anytime. Kaia was in NICU for a while as well. Anyway, I love the new headband. Happy Easter! I hope you like the treats!!

Sara & Company said...

What a beautiful Easter surprise! She truly is gorgeous and her sweet spirit just radiates.

Kalani said...

I am loving all the pictures. She is so pretty. I have a bunch of headbands Kalea can't wear anymore if you want them. She looks so pretty in them. It was good to see you for a few minutes yesterday. You are looking gorgeous as ever Buggy.

We all love you and are praying constantly,
Kalani and family

Alan J said...

What a cutey!

Christi Ann said...

Amazing....I keep wanting to write the right words on here...then i see pictures of you guys, and i get blown away to tears.
You all are simpily amazing!!
I love you guys and i will see you friday.
:)