Well..it's about 5:30 a.m. now...we just got to the same day surgery waiting room and will probably be here until about 11 or 11:30.  Dr. Kouretas spoke with us before taking Grace back into the O.R. and went over with us in a little bit more detail what will happen.  They will remove her heart...pur her on the heart lung bypass machine which will pump blood through her body, and they will then have to reconstruct her aortic arch and pulmonary arteries.  Normally Dr. Kouretas is very confident and tells us that yes there is risk, but that the procedure should be relatively simple.  Today however, he was still confident, but told us repeatedly how huge this procedure is.  It's not just a transplant, it is practically like doing the first original Norwood surgery, and then doing a transplant on top of an already complicated procedure.  He said there were many risks involved, including a risk of her not even making it through the procedure.  

We are nervous and anxious, but also feel as though we are being blessed with a feeling of peace and comfort, having a knowledge that all will go well.   

I can't stop thinking that Grace must have had some idea what was going on.  As anyone knows who has met her, she is a feisty little girl, and sometimes for no reason at all.  Yet, there she was, getting blood drawn, getting urine caths, getting IVs in, not having eaten for 5 1/2 hrs. at a time, not getting more than an hour of sleep at a time, and getting a cold antiseptic bath, and yet she would fuss, and then immediately calm down to give you a serious, skeptical and slightly suspicious look, but always calm and attentive.  She stared every person down that came in her room...analyzing what they were up to.  She has been so so so strong and wonderful.  I only pray that she will be able to recover from this enormous surgery and come out stronger and healthier.  :)

She is definitely our little miracle.  Our sassy, feisty, adorable little miracle.  Thank you so much for your prayers!!

Please keep us in your thoughts over the next few hours!

Love the Andersens

 Well, here we all are, heading out to surgery....grace is so calm...don't know how she does it, I'm pretty nervous myself...

Doctor K, Our surgion just came in the room and told us that we are going to get started.  So, here we go, we've been told 4-6 hours for the whole surgery to happen, but you really never know.  

They will remove her heart, put her on a heart lung machine, reconstuct some of her arch, and Pulmunary artieries, and then attach the new heart and start it up.  We love you all, and thank you for all of your comments!!

Confined Sleeping Quarters...

Well...Topher and I have had some interesting sleeping arrangements...we both were in our own rocking chair...with our bodies contorted quite uncomfortably...resting heads on each other's legs...leg's on each other's tummies...putting bums on chairs and feet on another chair and heads on a lap...however...i feel like I slept quite comfortably for about 3 hours.  :)  and I have woken up to my baby getting a alcohol/antiseptic kind of bath and screaming her head off for the whole PICU to hear!!! lol.  I think her nurses were under the perspective that she was going to be a sickly little thing...not so!!! She has the strongest lungs you could possibly imagine. :)

We have met with the anesthesiologist...around 1 a.m....we have also spoken with Dr.  Kouretas who will be her surgeon, we love him, so thats great, however...at this hospital...you can't really go wrong!  

They have estimated 5:30 as when she will get taken back to the O.R.  But...we shall see!! I sure hope it's not much later than that...because she hasn't eaten since midnight!!!

Thanks again for all your prayers, love and support.  Please keep the prayers coming!! 

We went over more information last night and it is definitely going to be a long, stressful and rough next year.   It was overwhelming to the point I was shaking and near tears....but it is the only way that Grace has another shot at a full life!! And a full life is what Topher and I feel she will be blessed with. Topher and my Dad gave her a blessing around 12:30 a.m. this morning/last night....and those were the exact words Topher uttered.  I can't wait to enjoy a full and long life with her...and if that means a challenging first year to get 15 after that, than so be it!!

Thanks again!  We'll update again when we know more!

love Buggy, Topher and Gracey

Another update!

The IV team just came in to draw blood for some labs that she has to have.  They also finally let Grace have a little pedialyte.  The doctors haven't let her have anything to eat for the last five hours, and grace was very, very, very upset!!!

Right now they are just trying to get an IV in and Grace is once again super mad.

The news right now is that the surgery will probably not happen before 4a.m.!! So...we've got quite a wait ahead of us.  So...please...everyone...try to get some sleep!!! We won't be posting anything urgent until at least 4!! ;)

At this time, we ask that you pray for her lots, that she will be strong and as comfortable as is possible.  She is bound to be hungry, grumpy and tired for the next 7 or so hours...so pray that she will be as happy and comfortable as she can be.  

Please also pray for the family that is making this enormous sacrifice for our little Gracey.  That has always been the most difficult thing for me through this whole process...knowing that some little family lost their angel so that Gracey can live a more full life.  It breaks my heart to think of any one losing their little one, but my heart couldn't possibly be more full of appreciation and gratitude for the family that felt prompted to do this for us.  I pray that they feel all the comfort in the world and that they might be comforted in some way to know the miracle their baby has given to us.

Thank you for your prayers and support! We love you all!!

Now go get some sleep!! (hint hint amy...;) )

love Alysia, Topher and Grace/Gracey/Gracey-Lou/Gracelynn/Princess Scowls-alot

Still Waiting

We're still just waiting.  Gracey is cuddling contentedly but hungrily on her daddy's lap, wrapped in a blanket with her stuffed bunny.  She couldn't be cuter if she tried.  The latest news we have that is the surgery won't happen until after midnight and will likely take at least 6 hours.  We'll post the latest as soon as we know.  Just keep praying!

Love, Topher, Bugs, and Gracey

Continuation

Well as a contiuation as the last post:  

I couldn't wait to just get that last post posted so I really flew through it, but hopefully this one will have a few more details in it. 

We are at Primary childrens hospital.  We got sent right to the PICU (Pediatric Intensive Care Unit).  Not that grace needed the extra care at the moment, but they weren't too full and by tomorrow we will need to be here, so we just got put right into our own little room here at the PICU.  

At this point we are just getting registered, and situated.  We still havn't seen our actually doctor yet, but what we have been told is that the surgury itself will probably happen in the "Wee hours" of the night.  Though It is pretty hard to tell the difference between night and day here at the PICU since it is always busy, and bright, and seems like the middle of the day.

As far as me and Alysia, we are doing great, don't need anything right now, just lots of prayers please! thank you everybody!!

Well....this is it...this is us once again in the ICU...a lot more smiles this time than last.

We recieved a call at about 7:00 this evening.  Alysia was on the road to pick up registration stuff for her triathlon this weekend when the cardiologists called and said that they have a heart.   I didn't have my phone with me at home with grace so Alysia actually called one of our neighbors and told them to run me a phone so that I would know to stop all feeds and get everything ready to come into primary childrens.  

We then got the official call that it was a match and it is really going to happen at about 8:00.  I don't think that we have ever gotten here so fast.  

Now we are waiting and setting up.  I will post more as we learn more.

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

An update

Sorry for the long delay between posts. I suppose not much has happened. Or, the fun things that did happen, we didn't get pictures of to report on!

I have just some random pictures of Grace thrown in here. The ones with the big pink bow I had to put in to show everyone what Angel Annabelle and her Mommy sent to Grace. For those of you who were familiar with baby Annabelle, she always wore these big pink bows and always looked adorable!! Well, her Mommy has started a really neat project putting together Annabelle baskets, and she sent us this cute bow, some socks and a heart burp cloth. I loved the bow. It only took me a minute to get used to and then I didn't want to take it off!!

Grace still really likes cuddling with her Daddy. She is definitely Daddy's girl to the extremes.

Topher and I haven't been up to much. His summer semester of school is over, so he is enjoying his month of no school. I am still training for my Sprint Triathlon, less than a month to go.

Grace is doing great. Although her Cardiologist did say she most likely only has 4-6 weeks before they will have to do some sort of open heart surgery to stabilize her heart condition, she is doing well. Her saturation levels are staying much higher than her Doctors expected and she looks great. She is working hard to sit up. She hates being layed down. She also has started grabbing things. Toys, blankets, and everything she grabs goes straight in her mouth. Often times it's daddy's thumb which ends up in her mouth, and comes out soaked in drool.

She also has started talking, or cooing, One of these days we'll have to borrow someone's video camera so we get get a clip of it to show you all. It really is so sweet.

On another note, our families are wonderful. Curtis' Birthday was two days ago, we love him SO SO SO much. He is such a wonderful father and father-in-law. We are so grateful for him and all he does for us.

Last weekend Topher was sweet enough to offer I go visit my Mom in Idaho and said that he would stay behind with Grace. He ended up spending the weekend at his parents house. His whole family, primarily his Mom, watched Grace and fawned over her constantly. So, Curtis took care of Topher, Venice took care of Grace, and my Mum took care of me!! It was such a wonderful weekend and I can't wait until its been considered a long enough time that I can go do it again...do you think one week is long enough???

Anyway...just wanted to update and let everyone know that all is well here and we're grateful for our family and friends that make life so much more manageable and enjoyable!

Thank you for all your prayers and support. Pray hard that she'll get a heart in the next month/month and a half!! She needs it soon or else there will be some drastic changes, although change is good too if it's in accordance with His will.

Thanks all! We love you lots!