8.07.2008

6 weeks and praying!

We had a Doctor's appointment this morning.  We scheduled a very complex open heart surgery for the week of the 22nd of September.  This will be in case she doesn't get a heart before then.

wow.
just had to get that off my chest.  
So that's the run down of the appointment this morning.  The run down, totally broken down, in a nutshell. 
In all sincerity, I actually was filled with so much information today at her appointment, that I came home completely overwhelmed, and in need of a serious nap.
So...if you would like to avoid the same overwhelm-ingness...you can stop reading now...because after all..you did get the nutshell version.
Now...for the long-winded...non-sensical version..
For the time being, Grace is doing great.  Her saturation's are nice and high, she looks great, she's developing wonderfully...but these signs are a little bit strange..because according to her Echo cardiogram and her EKG, all her levels should be much lower.  hmmmm.  Heavenly Father must be working some magic here that science can't explain.
Anyway...the Cardiologists and Surgeons had their weekly conference yesterday and discussed Grace and her condition.  A few different options were brought up.  One, being that she have a surgery now, while she is healthy...however this would decrease her chances of receiving a donor heart.  Two, being that she wait as long as she can for a heart, until she drops in status...which is when she turns 6 months old.  At that point, she drops from a 1A to a 1B, and her chances are then not so good of getting a heart...we would then do the open heart surgery...which would be a combination of the Norwood and Glenn surgeries...as well as reconstructing her Arch...and attempting to fix her Tricuspid valve...all in all a VERY complex procedure...if it went well, they would de-activate her from the Transplant List...only re-activating her if she were to get sick again and come back as a 1A, and keep all her waiting time.  If she were to do poorly after surgery, they would keep her on the list, and she would remain a 1A if her medicines were specific to the status.
So..it was a lot of information...and I've probably already managed to lose over half of the readers here because my gibberish makes no sense...not really to me either. Ha!
Anyway...we are nervous and praying hard that the next 6 weeks will all happen just the way Heavenly Father sees fit.  We hope that everything goes as it should, and that we can try to appreciate and love Grace as much as is humanly possible.  
She is definitely not a walk in the park, but there are times when it feels like she is the closest thing to Heaven I have ever been in contact with.  She can be so angelically sweet and peaceful at times...and these are the times I am so grateful for her and am overwhelmed with the love I feel for her.  
I hope the next 6 weeks are life changing...and life changing in a way that Grace will then be able to spend many many more years with us.
Also....as a side note...I just have to say how amazing Grace's Doctors are at Primary's.  I adore her Cardiologist, Transplant Coordinators and Nurses....they are so so wonderful and helpful.  They would drop anything to help me or Grace and they always love to hold and cuddle her.  They are always mindful of her and her feelings, as well as mine.  They don't even feel so much like Doctors anymore, but more like dear friends.  I'm so grateful to have that relationship with them, and to have such a reliable way of communicating with Grace's care takers....they really do want what is best for her...and that is wonderful to me.
Well...I hope I haven't completely lost or confused anyone.  Thanks for listening...and although I never doubt that we are being prayed for constantly...please keep praying for us.  The next 6 weeks are sure to be difficult as well as rewarding....so please continue to keep Grace in your thoughts and prayers.
Love the Andersens

21 comments:

Simmons Family: said...

You explained the medical stuff like a PRO! Enjoy every second with little Ms. Grace for the next six weeks and Heavenly Father will let his plan be known. Whether she gets a heart, or has to have hers repaired.. it's going to be a HUGE procedure and it's frightening. I hate that our babies have to go through so much and it's just not fair. I will say many prayers for your family as the time quickly approaches. She has proven to be a tough little munchkin so far and will continue to be.

Hugs from AZ

Andrea

Simmons Family: said...

You explained the medical stuff like a PRO! Enjoy every second with little Ms. Grace for the next six weeks and Heavenly Father will let his plan be known. Whether she gets a heart, or has to have hers repaired.. it's going to be a HUGE procedure and it's frightening. I hate that our babies have to go through so much and it's just not fair. I will say many prayers for your family as the time quickly approaches. She has proven to be a tough little munchkin so far and will continue to be.

Hugs from AZ

Andrea

princess jen said...

You did a great job with all the medical mumbo jumbo. You are a great mom and we all love Gracey so much. I want to be there and help you. Just let me know how. I love you!!!

Amber said...

She is absolutely still in our prayers....as are her parents. I already have her link on my blog, but I'll update a little, making her request known.
Heart hugs your way...

ashley & jesse said...

I couldn't help but cry when I read this post. You are an amazing woman and so strong and are very special in God's eyes or else he wouldn't have put this challenge in your life. I think that I would be a complete wreck about this whole thing. Jesse and I will keep you in our prayers for the coming weeks.... Hope all is well...
(ps and you do an awesome explaining all the medical stuff... kudos)

Gourley Family said...

Wow, that must have been soo much to take in. It reminds me of when we found out that Ryker was going to be born with HLHS, not the more simple of the heart defects, and it was just like, "wow!". We will keep her in our prayers, as we already do. Keep on making the beautiful memories.
Heart hugs,
Emily

Mythreesons said...

I felt like I should call you all day yesterday... now I know! Phew! I can't even imagine being faced with all those scary and complex decisions. Jaxon and Gavin pray for Gracy at every prayer... dinner, family, morning, you name it. I supposed Heavenly Father won't disspoint the faith of my little boys, right? You are all constantly in our prayers. We love you!

Super Daysh said...

We will keep praying for little Gracelyn! We love her soooo much! All will work out- you just wait! ;) Hugs and kisses to you all (except Topher- cause that's just weird...;)

Our Family said...

Your explanation was very understandable, especially when there are so many other feelings along with this news. We will hope and pray that everything will turn out positively. You are very strong to be able to share your journey.

aj said...

Ohhh, my heart is so heavy right now. I honestly have no words other than a sincere expression of my love for all of you.

My prayers will triple.

The Butcher Family said...

We will be praying especially hard for you all and precious Grace over these next 6 weeks. She is very lucky to have all your love! I couldn't agree more that they are absolutely the closest thing to Heaven that we will ever experience on this earth! God's very special little angels! ...and we get to hold them and love them!!!
Thank you for posting the pictures of Grace in her BIG bow! Watch out-they are addicting! :) She is so beautiful!
Love & blessings to you all~ Rebecca

Carl & Karen said...

You explain things great, in a way that makes perfect sense--good job. Like Emily, we pray for Grace (and Bugs and Toph) at every opportunity--morning, night, meal time, nap time, taking-out-the-garbage-time, etc. Our prayer is that Grace get a healthy heart--HOW that happens we leave up to Heavenly Father. In the meantime, we love spending time with the Andersen fam and want to do that as much as possible. We love you all. Love, Karen, Dad and Rachel

Carl & Karen said...

P.S. What's up with posting without pictures???

Likes Chocolate said...

We will keep Gracie and your family in our prayers. She is such a cutie. Hang in there!

Thoughtful Runner said...

Treasure Life! We think you do a wonderful job of living in the moment and taking advantage of every opportunity to live each day fully; you will never regret that.
We love you - and we love little Grace - and our prayers are united with yours in her behalf. Finally, in the words from my favorite poem of all time (Desiderata), "And whether or not it is clear to you, No doubt the universe is unfolding as it should."

Liz said...

You're in my prayers for sure! :) Lunch was so fun the other day. You amaze me. Grace is the luckiest little girl in the world to have parents with the most incredible attitudes and faith.

Christi Ann said...

I'm thinking of all you guys and praying with all my heart everyday. I miss you like crazy and I really wish that I was still there so I could do whatever I could to help. I love you leashabug and gracie and toph too. You guys are all amazing and I feel blessed everyday to be someone you guys call a friend. All my wishes and prayers are with you, love!!

Anonymous said...

Hey Aly, this is Levi. I never commented on one of your posts before, but me and Kim have been reading up on you and your family regularly, so I promise I haven't forgotten my friend! I am terribly sorry things have been so complicated and rough for you and your family, but you two seem to be showing so much more strength than 99% of parents out there that it astounds me. Just think of it this way, once Gracie is better and you and Christopher have a second child, nothing is going to phaze you two, lol. Broken bones? HA! Stitches? Give me the needle and thread!
In all seriousness though, you guys are in our thoughts and prayers. Maybe you should log on to your myspace sometime and we can talk. Me and Kim wish you, Christopher and little Gracie nothing but the best!

Michele said...

We will keep you in our prayers! Good luck the next few weeks. It is so hard to have a 'countdown'. It makes you appreciate every day.

kalani said...

Just like Amy my heart is very heavy right now. I honestly don't know how you and Toph do it. You are so amazing. Whenever anyone forgets to pray for Grace, Dalek always pipes in, "Don't forget to pray for Grace." We are always thinking to you and wish we could see you more. Hugs and kisses to all of you.

aj said...

AHHHHHHHHHH ......... we just heard the news!!!

We will be praying on our knees all through the night!!

I have faith that angels - every heart angel up in heaven - will be watching over little Grace!

WE LOVE YOU ALL!