6.27.2008

All is Well!!

Starting near Midnight yesterday we definitely had a looong day. That is when our alarm went off to stop Grace's feed, and try to get her to take some milk by bottle. Our alarm rang again at 3:45am to try and fill her up on some Pedialyte. And then again at 5:00am to get us up, ready and out the door by 5:30.
Given the circumstances however, Grace was an angel. She didn't wake up every 10 minutes through the night for a binky, in fact she slept through the whole night, except for the 3x we had to actually wake her and try to feed her.
We figured the 'no food rule' after 4:30a.m. would be ok, because she was the first Catheter appt. of the day, bright and early at 6, so she wouldn't be hungry. But, we had forgotten that hospitals are never on time. So, we waited around from one room to another until they finally took her back to Anesthesia and the Cath Lab around 8:00!!
By that point, Grace was definitely hungry and quite fussy. *sigh*
Going to the operating area where parents had to watch their kids walked away by a nurse, or had to pry their little fingers off their legs, then watching the little kids start to cry for their mom's and the parents reassuring them, "I'll see in you just a minute-don't be scared", was probably one of the hardest things for me to see. It made me so grateful that Grace can't yet distinguish quite who is holding her or what is going on. She can't cry to me to please stay with her and I don't have to watch the fear on her face as someone else carries her away. I really hope I never have to do that, that her surgeries will all be done before that recognition has appeared on her face. It was definitely a humbling experience, and one that made me grateful for her falling asleep just before we had to hand her to someone else. She never even knew she was being passed around, she just kept peacefully sleeping. What a blessing!
They told us to expect around 3 hours, gave us a beeper and shut the door to the operating area.
We tried hard to entertain ourselves, we didn't want to wait in the parent waiting area, too many people that are uptight and nervous to hear back of their results, and Topher and I didn't want to feel all those emotions flooding the room.
So, we had breakfast in the cafeteria, it was funny because it felt so normal to be back in the hospital, eating in the cafeteria. It almost felt like we were back in our 2nd home or something. Walking past the PICU just made us remember how long we really were there. It was crazy to think it was only a Month and a half ago, because it felt like we'd had Grace home with us forever.
After eating at the cafeteria, we wandered around aimlessly, eventually found the College of Nursing Gift shop and spent way too much money on books, books and more books for Grace!! We also bought her a mini stuffed animal that is actually a 'White Blood Cell'. LOL!!! We figured it would help protect her against diseases and such, since that is going to be her biggest battle through the rest of her life. ;)
Way too much money later, we got the page saying they were done on Grace. We ran back to the Cath Lab and met Dr. Gray, waiting to tell us how everything went.
He said everything looked great, there weren't any unexpected surprises. They were able to balloon open her Atrial Septum, and it increased her Saturations by about 10%. They also said that because of the placement of her first two stents, that there was a slight gradient, causing less blood to flow through and up to her heart, brain, and arms. He said that if she doesn't get a Transplant soon, the next thing that will have to be done is another Cath Lab to place another stent.
Some good news, was that he looked closely at her heart, watched the blood flow and efficiency of the Tricuspid Valve, and said that even though it is still leaking, its not near as bad as they had feared, and that if she started to get sick, and still hadn't received a Trasnplant, he felt confident in saying he would be optimistic about continuing on with the initial surgeries.
That was nice to hear, because at least we know that we have a back up plan, in case the Transplant is unsuccessful.
We were able to go upstairs and see her about 45 minutes later. She still wasn't quite herself, her cries weren't her usual spunky wails, but instead were high pitched little whimpers. Very heartbreaking to hear!! We fed her some Glucose Water, and then she fell fast asleep against Daddy's chest, mouth open, drooling and everything!
Later she had an Echo to see her heart function and see the improvement the balloon had enabled.
After her lengthy echo, we were headed back upstairs for the Nurses to monitor her for another couple of hours.
They let us feed her some milk, and she tolerated it really well.
Something I forgot to mention, is that I have NEVER heard Grace SO SO gassy!! Not ever!! She was farting up a storm!! Even the Nurses were stunned that she was so gassy! After we fed her, she also had to burp constantly for about 30 minutes!! I don't know how she got so much air in her little tummy!! But she did, and even until late last night she was still really gassy and needing a good 20 minutes to get burps out!! So crazy!! Not to mention stinky, we kept checking her diaper because she stunk so bad, but it was just gas!
Anyway, she's home now, and luckily she was exhausted, because Topher and I sure were and we needed some sleep too. I think I passed out on the bed around 7:30, and didn't wake up again until 11:00pm to get her feed ready. Then Topher and I both crashed around midnight, and it is now 10:00 a.m. and Topher is still asleep...as is Gracey. :)
Thank you for all your prayers. I know they were all heard and answered because yesterday couldn't have gone better. Grace was an angel and so tough and strong. We had energy to get us through everything that was necessary and then we were all able to just sleep.
Thank you again for all your support and prayers in our behalf. We couldn't survive with our sanity in tact without them!!
Love you all,
Buggy, Topher and Grace

17 comments:

Thoughtful Runner said...

Wonderful! We are both relieved and happy to get the update that everything went well yesterday and that Gracie pulled through with flying colors. For whatever reason, I already consider her a "fighter" - which hopefully will continue to serve her well throughout her life and realizing that many challenges likely still remain ahead. It was also good to hear that there may be a viable alternative to the transplant, should a heart not become available.
Anyway, thanks for the update - and by the way, we'll be sure to invite you over this weekend to ensure your limited sleeping time remains the norm! (And maybe with you only have awake, my chances at Oh Heck are better! :) )
Love you!

Carl & Karen said...

So glad things went well, but Gracey is your daughter, after all, and if there's nothing you can't do (which you prove time and time again), there's certainly nothing she can't do! And also--woo hoo--I got a blog mention (in your last entry)! Looking forward to seeing you soon, and also to spending a lot of 4th of July weekend together. Karen

Anonymous said...

Way to go Grace!
It was so fun to play with you three the other night. You are wonderful parents and Grace is such a little doll! I am so happy she is such a fiesty woman! Takes after her mom, grand-ma nd great-grandma, huh?
We do pray for her often.

Love Grandma Atkinson

Simmons Family: said...

SO HAPPY to hear that the cath went so well!! Sorry it was such a long day. :( Hopfully you won't have to do that again anytime soon.

Andrea

ajfinn said...

Yay, my little Grace is a trooper - uh, with a lot of gas. Very funny, poor little thing though, she probably had a very tender tummy. Apparently her heart area wasn't all that got ballooned up :)

I'm so, so happy that things went so well. And what a miracle that her heart is now looking good enough for the initial surgeries if it comes to that!! The Lord is indeed blessing you all :)

Our Family said...

So good to hear that everything went well. As babies get stronger, which makes caths and surgeries a little less scary, they also get more personality, and handing them over can become the most traumatic part for you and them! When Casey had to get ear tubes places (so minor compared to everything else!) we asked for Versed for him, so that he could be mellow when he went in. He doesn't remember anything about that experience, except the postitive things!

Gina
Roseville, CA

rosalie said...

So grateful to hear all went well with little Grace! She is so adorable. We love you and pray for you always! Love Pres. and Sister Ringwood

not about me said...

Must be so comforting for you to know that you now have a back-up plan. You continually amaze me with your strength and determination. Your struggles make me feel extremely blessed and sometimes even guilty to have had a healthy baby. But you are right, GOD has a plan and everything is going to work out for you wonderful little family. Heidi.

Mythreesons said...

HA HA... Gracey is taking after her aunt Dacia... poor thing. I'm so glad everything went smoothly for you yesterday... I was praying for you. And I may forgive you for stealing mom back... thanks for finally sharing her with me (spoiled Bug...) Hope you guys find some time to sleep and thanks again for all the goodies! You guys are the best... (the gummi bears were so good... I didn't share them with ANYONE! All MINE!)

Super Daysh said...

I'm so glad to hear that all went well. Joe and I prayed for her and for you guys while we were on our trip (Thursday in particular!). She is a little fighter and we are so grateful for it! I'm glad she's home again and ready to get her heart. ;) We love you guys - especially you incredibly beautiful little one. :)

princess jen said...

I'm glad that the Cath lab went well for you. I wish you could be out here in the desert with us!

kalani said...

I am so glad to hear that all went well. I think about her all the time and you guys too. I hope more sleep is in your future. I know how much I hate not getting sleep but you guys probably aren't as awnry as I am.

Melissa said...

Our daughter would get super gassy after procedures too. I blame the drugs...I'm glad she did well!

Sara & Company said...

I am so glad she is doing so well. What a fighter she is. Love you all!

Gourley Family said...

We are so happy to hear that things went so well! What a little sweetheart! We still pray that things continue to go well with little Gracie!
Heart hugs,
Emily

Halle Louise said...

It is truly humbling to read your blog about your amazing little Grace. Justin mentioned how special she is, and her cute little smile at church. You are such amazing parents to such a special little girl. Thanks for the comment on our blog, I look forward to seeing you more!

Liz said...

you are SO faithful, it's absolutely incredible. :) i'm so glad everything went well! grace is such a winner with such amazing parents!