Longest 12 Hours of My Life

It is finally over.  12 hours later, Gracey is stable and soon to be transported back to the PICU.  We haven't seen her yet, and probably won't see her for about another 30 minutes, but she is supposedly stable and on her way to the PICU.  

Dr. Kouretas came and talked with us, told us that the procedure was 'very difficult' and that there were a few 'surprises' with what they were dealing with.  Her pulmonary arteries had narrowed quite a ways up and Dr. K didn't feel like now was the time to fix that.  He did fix the main/central part of her pulmonary arteries, but decided that further up would need to wait til' a later time to be fixed.  He said it would probably be dealt with during a Cath Lab in the future.  
She is still intubated, (on a ventilator), so we will not be able to hold her for a few days, her chest is still open and she can't begin the process of extubation until her chest closes...that will also probably take a few days.  
The surgery from the time of taking her to the O.R. to when Dr. K came to give us his report was a total of 12 hours....twice as long as the longest estimate they gave us...but we felt blessed and comforted for every single one.  We are emotionally, physically and mentally exhausted, but know that we have been carried over the last 12 hours to feel calm and at peace, with a knowledge that all would be well.  
We are so grateful for our family, for all the support they have given us.  
It is going to be a couple of weeks before she comes home.  Miracle/best/amazing case scenario is a week, (this is highly unlikely, but possible), average scenario is 2-3 weeks.  But anything is possible I suppose.  
Once she is home, things will definitely be challening, and rewarding, and the next 4-6 months will most likely be the hardest thing we have to go through with our little Grace.
She will be under 'house arrest' for the entire 4-6 months, not permitted to go anywhere except outdoors, in a stroller, covered up.  She will have 2 Dr. Appointments every week, both of which she will have an Echo and blood drawn.  Lots of medications.  Cath Labs.  and very few visitors.  
I keep telling myself to just stay in the moment, and to take one baby step at a time.  As soon as I try to look at next week, let alone the next year, I am overwhelmed to the point of tears.  But I know we can handle this one baby step at a time, letting Grace tell us what she's ready for and letting her follow her own timeline.  
We feel so immensely blessed.  It almost feels like it hasn't actually happened because of how surreal it has all been.  We're grateful, grateful and more grateful.  To our friends and family for their prayers, for our wonderful Medical Team that has helped us every step of the way, for her gifted Surgeons, dedicated Transplant team, and more especially, for the amazing family that felt prompted to make this sacrifice for our little Grace.  The miracle they have made possible for our little family is beyond words.  I don't know if I will ever be able to thank them.  I pray that someday, we will be able to express to them our feelings of love and gratitude, as well as sorrow for their loss.  
Thank you to all of you that have been praying, fasting, commenting and everything else.  
We couldn't have asked for more.  Please pray for a speedy recovery and we love you all!
Love the Andersens


aj said...

We're all so happy that Grace has proven her strength once again!!

And Topher and Buggy, you have proven your strength as well.

Our prayers will continue to soar up to heaven, for a speedy, uncomplicated recovery for little Gracey.

I keep thinking I can't possibly love her anymore than I do, and yet every day I find I adore her even more. Especially today!!

Lots of love and hugs!! Have a very special night with your baby :)

Amber said...

I've been hanging on your updates...so glad she is out and looking good!!!! I am completely holding your Grace and family in my prayers...
Heart hugs....

Carl & Karen said...

We will all be here every step of the way to help and support the Andersen Fam that we love so much. "Yesterday is history, tomorrow a mystery, today is a gift, that's why it's called the present." Take things one day at a time and anything is possible and manageable. All our love and prayers, always!

Susan said...

I know exactly what you are experiencing - every detail. My daughter, Kimberly, also had a skin rash all over her little body that she would scratch and it would bleed. Her skin was not getting enough natural moisture because of her heart condition. I am so happy she came thru the surgery and I am praying for a lifetime of happy, healthy memories with Grace.


Anonymous said...

your baby is proof that prayer is powerful! congratulations on making it through the hardest day of your life. thoughts and prayers to all 3 of you!
b :)

Anonymous said...

It sounds as though a lot of people's prayers have been answered. Mine have.
Now everyone has to keep it up. My experiece is limited, but both of the transplant friends of mine have been very sucessful over quite a long time. And one was a child heart transplant who is still doing well ... wow! it's been over 20 years now! The other has been close to that.

I will continue to pray.

Bill King
Sweet Candy Comapany