8.28.2008

This is Megan. Please pray for her!! Thanks everyone!

3rd Floor!!

We got a pretty big surprise today...We had planned on her getting her central "RA" lines out today so that we could hold her, and as soon as they told us about taking those out, they immediately moved on to saying that they'd be moving her to the floor!  

"The floor?! -Wha? Really?  You're sure?"
That was my reaction.  
They said that there really wasn't any reason to keep her in the PICU so they were sending her upstairs!  Wahoo!
So we're upstairs and Topher and I have both gotten to hold her...she is still pretty hoarse and can't make much noise, definitely still feisty as ever, but we're loving that her personality is coming back again, bit by bit.
Also, Grace met her Great Grandpa Charles today.  He was visiting from Washington and so
 Topher was able to take him as well as Curtis in to see her.  It was neat to have the three generations of male Andersens all in there with her.  Thanks for visiting her Grandpa Charles! 
When we came up here today, I met a new family whose daughter is here on the floor, waiting for a heart.  She is 15 years old.  Not only is she waiting for a heart after being diagnosed with Cardiomyopathy, but she also has already had cancer and Chemotherapy treatments.  I'm going to go meet her personally tonight and talk with her.  But my heart has already broken to imagine a 15 year old having to go through so much, and still have such a long road ahead of her.  Please please PLEASE keep her in your prayers.  Her name is Meagan, and I'm sure that every prayer in her behalf would be appreciated.  
Thank you for keeping Grace in your prayers and for all the constant support.  Alli and Amy came to our house and deep cleaned Grace's room, the laundry room, the bathroom, and the vents.  It was SOOOOOO wonderful of them and we are so extremely appreciative.  Thank you! Thank you!! They sanitized everything, steam cleaned walls, ceilings, doors, did laundry.  It was wonderful.  Also, my visiting teachers brought a wonderful meal for us, and a sweet lady in my ward arranged to have meals brought to us next week as well.  Talk about an amazing family and wonderful neighbors and ward members.  We truly feel so blessed to have SO much support.  Thank you to ALL of you. 
We are tentatively being told that the end of next week would be when we come home...but we'll see.  We have already learned not to trust everything the nurses say.  So, one nurse said Tuesday, and we were just barely told, 'no no, at the earliest Friday or Saturday next week'.  haha! So we'll see what actually ends up happening.  We really don't care too much how long it takes her to get better...she can take her time.  If she needs a week, that's great, if she needs 2, that's awesome as well.  We're just so happy and grateful that she'll be going home a healthy, recovering baby girl, instead of a sick baby girl, where we are dreading what is in her near future.  We feel so blessed and are extremely grateful for how wonderful and smoothly everything has gone. :)
Please continue to pray for us.  She has a swallow study tomorrow, and how she does on that will determine if she can start to be bottle fed, or if she will need to possibly go home with a feeding tube again.  Please also pray for her other heart friends, and especially Megan as she copes and waits for her 2nd chance at a full life. 
Thanks again!  We love you all!
Love the Andersens

8.26.2008

No Ventilator!!

She is tubeless....or at least she has no large plastic tube going down her throat...she does still swim in a small tangle of IV lines however.  But those don't seem quite so bad; except when she tries to use either of her hands which are securely wrapped to small padded boards to support her IVs.  She tries so hard to get some use out of those stiff little wrists, usually ending in a good bump in the face.  They just don't seem to work quite like they used to.  

She is more awake now than she has been, this is good, and bad, she reminds us of just how feisty she is.  She is also attempting the use of her tube worn vocal chords, sometimes only a hoarse whine, others, a bit more successful, just hinting at what vocal power is soon to return. ;-)
She did seem to get a bit uncomfortable this evening, so she got to try a little of her favorite morphine drip...always seems to do the trick.  However, it seems that they won't let us take any home....hmmmm....if only. :-)
We really are happy to see her awake and making noise again.  It was never the same to have a baby that just lies there completely silent all day.  She is soooooooooooo CUTE!    (small possible bias here...)   and we love her.  Thank you everyone for continuing to read our rables and support us soo much.  We love you all.  
as a quick p.s. we intended to post pictures at this juncture in the program, but were unable to find the card reader, so those will be coming at a later time, stay tuned! :-) haha

Extubation day???

Grace has continued to recover and progress amazingly well. She is constantly gagging on her tube however, as well as always throwing her arms around and making it very clear that she wants that tube OUT! She licks it, bites it, pushes it, and yanks it, all in an effort to get it out, but to no avail...until today! She is supposed to be extubated later today if all goes well. And her extubation will actually be following the removal of her other 2 chest tubes. She is just losing tubes and wires everywhere! Its great. :)

It will still be a couple of days or so before we can hold her, because she needs to be weaned off of a few more meds so that her Double-lumin line can come out. This line is too central to her heart and we can't hold her while its in.
She is awake more and more frequently and is more and more feisty each time I see her. I miss her so so much and Topher and I can't wait to hold her in our arms again. They should be able to try a swallow study with her either the end of this week or beginning of next, and if that goes well then we'd be able to start trying to bottle feed her as early as next week. That's about all the news we have. She's doing well. And getting cuter and cuter every day. Thanks for your prayers. They are so appreciated. We love you all lots!
Love the Andersens

8.24.2008

Gracey video...Pre-Transplant

video

This is actually a video we took of Gracey a couple days before we got called in for her Transplant.  It is really sweet and thought it would help everyone remember how adorable, and not so puffy she was!!  
Topher actually took the video on his new Mac...so when its recording, the picture actually appears on the screen like a mirror...
It is so cute, because you can tell when Grace 'discovers' herself on the computer screen and gets quite excited at how gorgeous she is.  ;)
Its short...I know, lame.  But...know that we have kind of figured out how to make the videos and edit them, there will be many more to come...once Gracey is more up to being a model again.
By the way... there is a new post right below this one...so be sure to check it out.  We had a prayer request, as well as pictures...so no blog skipping.  You have to check that one too!

I've run out of ideas for clever Post Titles...


Grace has been opening her eyes a lot more today.  Looking at her Mama and Daddy and trying hard to focus on us.  She'll turn her little head at the sound of our voices and squeeze our fingers.  Its sweet, but also heart breaking to see her so vulnerable and helpless.  I'm definitely very anxious for when I will be able to hold her in my arms again...although, I don't think she will really be content until she is in Daddy's arms again...there's nothing quite as enjoyable for her as a Daddy cuddle, (but I totally understand....there is definitely something special about Topher cuddles...)
Daxton and his parents gave Grace this beautiful little Willow Tree figurine.  It couldn't be more perfect if we had had it commissioned esp. for her.  It is of a little girl holding a beautiful golden heart...as if Grace is holding her beautiful new gift...her gold medal.  Thank you SO much.
Topher and I love black and white pictures...and when you take a shot of her cute little toes in B&W, it just doesn't get much cuter than that.
Hopefully all this tape and the ventilator will be gone in a couple of days.  They actually tried a spontaneous trial off the ventilator this morning and she did amazingly well.  They plan on doing another trial this afternoon and again this evening.  If both of them go as well as this morning's, she could be off the ventilator as early as tomorrow!! (knock on wood...)

If she takes a little longer than that though, that is just fine.  We want her to have a nice, slow recovery, and don't want to push her too far too quickly.  Whatever pace she needs to take is just fine. We just feel so lucky to have her, and so lucky and blessed that she was able to receive this immense gift.
So aside from all the cute pictures, Grace is doing relatively well today.  We went to the Sacrament Mtg. held here at the hospital, (which was wonderful as usual) and then went in to see her right afterwards.  They were trying for a couple hours or so to get a new Arterial Line in.  This line is similar to an I.V. but goes into an artery instead of a vein and it measures a continual blood pressure.  They can also draw her blood labs and gases from it as well...however, her Art lines haven't been staying in well the past couple days, and they have been in her groin, which supposedly is a spot that can easily get infected.  So, they were trying to put one in her wrist or ankle, but neither worked.  They re-threaded the one in her groin, but its working very sporadically.  They've been trying to draw blood labs through her right atrial line instead, and this morning discovered a clot in the blood that was sent to the Lab....
At the moment, they're trying to determine if it clotted from sitting in the lab too long, or if they pulled the clot out of her right atrium...or what exactly happened.  Hopefully the clot was not in her atrium, because that would be very unexpected and not such good news considering this is a brand new beautiful healthy heart.
Please pray hard for her today that there isn't a possible large speed bump in her road to recovery.  All her levels have been stable, so it would be very unexpected...but who knows.  
Other than that, Gracey truly does continue to amaze her nurses, Doctors and especially her parents.  She constantly is a reminder of her amazingly strong spirit.  And never once has she shown any signs of slowing down or giving up.  Granted she has amazingly strong family on both sides, and amazing examples of strong women.  She was named after her wonderfully stubborn, faithful and strong Oma, and she has definitely lived up to her name and much more. She has many more examples of faith and strength throughout both lines of her family, and I am so happy that she will be able to live a life learning from all of them and teaching a little of her own as well.
Thank you for your prayers! Keep em' coming!!
Love you all! Have a wonderful Sabbath!
the Andersens  

8.23.2008

Big Day...

So Gracey and I both had big days today.  Topher and I slept here at the hospital and awoke bright and early...(although still not as early as I'm pretty sure Curtis gets up, ha!) went to see and check on Grace, got some grub and headed to Park City for my Triathlon.  I decided I had put too much work and energy into it to just give it up...and I knew that nothing would keep me going more than the thought and motivation of doing it for Grace.  If she can go through so much and be so strong, I had better live up to being her mommy and be able to push myself as well. :)

They did close her chest this morning around 8, we weren't allowed in for that anyway, so we didn't feel as guilty not being present, and we called throughout the day to check on her.  We have since been back up to the hospital to see her and talked with her nurse who says she has had a great day.  The procedure to close her chest went really well, and she has had a good and restful day.  They also said that they have already started to wean her ventilator settings down, so that is great news as well.
When we came in to see her this evening I was so excited to see her, and I think my high energy bothered her!! I put my finger in her palm and started talking to her and she immediately squeezed my finger and started wiggling everything! Shaking her arms and legs, and even trying to open her eyes and look at me.  Maybe I was actually making her angry, but I will let myself think that she was just excited to hear my voice and be hand cuddled by her mama. 
She truly is my hero in so many ways and I love her so much.  I missed her terribly today and seeing her again, and knowing that all my energy and will power today was for her, was so wonderful. :)
The triathlon went well; I have amazing siblings, an amazing mom and dad, an awesome and loud Karen and the MOST amazing Husband/best friend/coach ever - that all positioned themselves all over the race to cheer me on.  It was a long time to be away from Gracey, and so just that more rewarding to see her this evening.
We just thought we'd update to let everyone know how the day had gone and say a big THANK YOU for all the prayers and support.
We are more blessed every day and feel so grateful for our little Gracey and the miracle she is.  Also, we are so grateful for each other, as well as our families. 
Please continue to pray for Gracey as well as her other heart friends and their families.

8.22.2008

And so we say goodnight...

We are back in the PICU for the night...luckily we got a room again.  Grace is still holding steady and strong and we couldn't ask for more.
The plan is to close her chest tomorrow morning around 8a.m.  Once they've closed her chest, they can start trying to wean her off the ventilator, and once she is extubated, we can try slowly feeding her again.  
It will most likely take a few days, or a week, or more, who knows!? but it will all be on Grace's timeline.  She'll let us know when and what she's ready for and that's exactly what we want.
Every once and a while she comes of out of sleepiness and opens her eyes, trying really hard to focus on something.  She's wiggling her toes and moving her arms.  When the nurses move her around, she fidgets and scrunches her face up....so, even under heavy pain meds and slight sedation, she is still feisty. :) We knew Gracey was in there somewhere!! 
Other than that, it has been a nice slow, restful day for her, and we hope she has many more restful days to recover her strength and just work on getting better.  
We thought we'd post a few pictures that aren't too graphic...just so people can say hi to our little strawberry marshmallow!
This is her with all her equipment.  Over 15 different pumps.  A Ventilator.  3 chest tubes and drains.  And then all the wires and lines connecting into her as well...
This one is cute, cuz yes she is super puffy...but she's pink!! and Beautiful! And she still has her adorable mini fohawk.  She likes to suck on her ventilator too...kinda cute....okay REALLY cute.
Here she is with the man of her dreams.  Her Daddy.  The best man on Earth...and don't tell her you think otherwise...she'll snarl at ya.  
So that's the update.  We love her and she is our beautiful, adorable, wonderful, feisty, spunky little miracle.
Please continue to pray for her and a speedy recovery, as well as a prayer for the other heart babies.  
We love you all.  Have a good night!


To whom it may concern...

Hey all!!! Let me start out by prefacing the following post with the fact that we love all of you so so so much. We appreciate so much all your love and support and even more especially your constant prayers. I know a lot of you feel helpless, and that is understandable, but there really isn't anything we need other than lots of prayers. We're just eating at the hospital most of the time, sleeping when/where we can, and that's about all we can ask for. We feel helpless looking at Grace as well, but honestly there's nothing that can be done that isn't already being taken care of by Grace's amazing hospital caretakers.
But we truly do appreciate everyone wanting to help out. We know everyone would be here in a heart beat if we asked...which leads me to this post's general purpose...
Topher and I felt like we should probably post a blog to let everyone know more about visiting Grace and also about what the next year will probably look like.....
As much as we love you all and we would love for everyone to get to see and love Grace...its just not possible right now.
The visiting protocol is so much more strict now that it ever has been, and she is so so so much more fragile.
For the next 6 months to a year her immune system is going to be highly suppressed. She is going to be on up to 10 different immunosuppressants, and so she will be extremely vulnerable to any and all infections, sicknesses and diseases. If she were to catch so much as a cold, it could very easily over power her and possibly kill her.
The Transplant team has told us that for the next 4-6 months, and possibly a year, Grace will be under 'house arrest'. We literally will not be able to take her anywhere but the outdoors. We can take her outside on walks, with the stroller covered up...and that's about it. We can't take her to our family's houses, we can't take her to church, not to any stores, not anywhere. Along with that, we won't be able to have more than about 2 people at a time come to visit her at our house. And if people do come to visit, they can't be sick, nor can they have been exposed to anyone that is sick.
This has been something really hard for me to swallow, because I want her to have a close relationship with all of our families, but, Gracey's life depends on her not being exposed, and to her remaining healthy healthy healthy!!!
While she is still in the hospital, the Doctors and nurses have told us that we have to limit her visitors to parents and Grandparents, and possibly immediate siblings, if and only if, they are in perfect health and haven't been exposed to anything. Also, they have age restrictions, so not even all of our siblings will be able to see her. The visitors that do come in have to gown up, wear a mask and gloves and sanitize like crazy.
So...as you can probably gather, it is overwhelmingly strict for the next little while, and although we love you all and want you all to be able to love on her, you may have to save your kisses and cuddles for a couple months. :)
Please please please don't be offended or hurt if you can't see her for a while, the last thing we want to do is hurt anyone's feelings. But please also don't make us be the bad guys by having to turn anyone down. If our siblings and close family can visit, we will let you know. But if we can follow the strict rules for the next year, which will hopefully go quickly, she'll be healthy and we can start to let her have a normal life doing all the things other little babies do.
We love you all lots and appreciate so much your understanding and support as well as your eagerness to be helpful in any way. :)
Love the Andersens

Long Night...

In an effort to get rest, and stay updated and close to Grace, Topher and I split up last night...he went home to sleep there, and I stayed here in a Sleep Room.  Although it was plenty quiet, and comfortable, I feel like I didn't ever really fall asleep.  I'm sure that in actuality I was out, but I woke up so many times that it feels like all I did was lay on a bed with my eyes shut for...11 hours- Yikes!  I can't believe I slept that long and feel just as exhausted as yesterday!  I had asked the Nurse to please please get me if anything was happening or was wrong, and so every time I heard a door open, which was more often than you'd think, I popped up in bed, just waiting for them to knock on my door and get me. 

So that was my night.  Hopefully Topher's was more restful.  And Gracey's I'm sure was more restful....I think I could use some morphine right now too... ;)
So, something we didn't mention yesterday is that when Dr. Kouretas gave us his report on the surgery he told us that there was a period of time when they had to stop her blood circulation to her brain, and the problem with that was that they weren't able to stop the circulation at the desired time, and it also occurred for longer than they would have liked.  Dr. K told us that he would seriously doubt there would be any long term brain damage from the loss of oxygen, but that short term damage was possible, and if it occurred it would probably happen in the form of seizures or something similar.
To monitor it, they have been checking her cerebral oxygen saturations as well as still monitoring on her hands and feet, and last night the levels were about 40 points lower than they would have liked...however, that was the only symptom of possible brain damage.  She was still physically reacting, so I tried not to worry too much. 
As an extra precaution, they ended up putting her on a cooling blanket, to lower her body temperature to 35 instead of 37, this would lower her metabolism so she doesn't use as many brain cells, and it would also cause her to shiver a lot if there was no damage.  Well, she definitely was shivering, it was really sad to see her little body trembling not be able to just scoop her up and hold her.  
They also attached a bunch of little leeds to her head to monitor her brain waves throughout the night.  
This morning when I went in to see her, she wasn't on a cooling blanket anymore, but she was still shivering, so they had her on a paralysis medication to stop her from shaking.  They had monitored her brain waves all evening, and nothing seemed amiss.  Also her cerebral saturation were about 30 points higher.  So, I think she's doing much better.  Her nurse thought she had just slowly been progressing all evening.
Nothing much is going to happen today.  Her Doctors and Nurses feel like her body just needs to rest as much as possible, esp. because of how long her surgery was, and so they aren't going to close her chest today, because it can be physically challenging for her.  However, they are planning on closing her chest tomorrow.  Once her chest is closed, they can begin slowly trying to extubate her and then I can hold her.  And that will be wonderful.  My arms are aching for my little baby.  But again, this is what I'm sure every heart mom feels when they can't hold their little ones.  Seeing them vulnerable and possibly hurting and motionless triggers something; the strongest need to hold your baby safe in your arms, even though realistically it wouldn't fix anything.  That's just what you feel like a mom is supposed to do.  My heart goes out to all the moms out there whose arms ache for their little ones.
Well, hopefully today will be a nice, slow day, with nothing worth posting about. :)
I know some of you have requested pictures, but I just don't think that its a good idea to post them.  Grace doesn't look like herself, and although I still think she is my beautiful baby, its not easy to see her in the condition she is in.   She is still beautiful and still our Gracey, just much more puffy...like a strawberry marshmallow. :)
Being in the hospital again has made me feel so grateful for Grace.  She has always been such a tough little girl, strong and always quick to recover.  We are so grateful for how blessed we've been with her.  She could have so easily been much harder to take care of and had so many other problems, but she never did.  She always made things as simple as they could be.  Maybe that's why she was so feisty....just making up the difference. :)
So many other babies are in the hospital at any given time, please keep them in your prayers.  Pray hard for the babies and their families.
Please also continue to pray for Grace that she will have a quick recovery with few to no speed bumps along the way. 
Your prayers have buoyed us up so much, thank you thank you thank you.
Love you all
the Andersens 

8.21.2008

Grace is in the PICU now.  She's looking very swollen, and buried under a bit of a tangle of tubes and wires, but she is pink, and for the first time ever her oxygen saturation is 100 percent!!  It is amazing!!

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

This is Emily, Buggy's sister commandeering her blog for a much needed update.  Unfortunately, Bugs and Toph are wandering the hospital halls like zombies for no apparent reason.  I think they're tired or something.  Can't fathom why, though...

We got our last update almost an hour ago from the sweet nurse practitioner.  She said that they were still just waiting and monitoring Gracey's vitals.  Apparently, there's still some bleeding, which is fine and not unusual, but they don't want her to leave the OR until all bleeding has stopped.  The surgery is over, but until the bleeding has stopped, she won't be sent back to the PICU, nor will Bugs and Toph get to see her.  So we're just waiting.  
The nurse practitioner did say that everything went well and was smooth... everything happened the way it was supposed to, and even though the whole process has taken longer than we expected, nothing is out of the ordinary.  They have decided not to close her up and it may be a couple days before they close her chest, but again, that's alright and not unusual.
Now, seeing as my mother and I are fasting until the surgery is completed, we're really hoping that we're in the home stretch.  Because the food magazines and recipe cards lying around the waiting room, and the guy next to us with the ice cream cone isn't helping.
Oh wait.... the nurse practitioner just walked in!!!  Just a sec....

Everything's been finalized and she's being moved to the PICU!!!  Hurrah!!!!  Dr. Kouretas will be in shortly to debrief them and they should be able to go back to the PICU in about 45 minutes.  We'll update after they've talked with Dr. K or they've had a chance to see their baby girl, who they're both pining for.  Of course, I can't really blame them.  She is kind of cute.

  Well, I think that means I can eat.  So I'm off to eat and Bugs or Toph should be back soon with another update.  Thank you for all your prayers!  As I watch these two sitting here, tired beyond belief, glazed over eyes, anxiously rubbing eachother's shoulders, hugging, and holding hands, I know they are being buoyed by your prayers, thoughts and comments.  They are so strong and loving and so grateful for all your love and prayers.  They matter and they help more than you'll ever know.

9 1/2 hours down, 1 more to go!!!.....I hope

Well, they just came back to check on us again and give us another update.  Everything is re-connected and stitched together.  She is also off bypass.  They are going to monitor her for the next hour or so to make sure all is functioning normally and also they're going to try and close her chest.  It will depend on how much swelling there is and how much fluid needs to drain, but hopefully they'll be able to close her up and then we'd be looking at seeing her in about 2 hours.  

What a long 24 hours!!! But worth every minute. 
We'll try to keep everyone updated,but chances are our next blog won't be for another couple of hours.  Just be comforted in knowing that the worst is over, and the best is yet to come. :)
I can't wait to get a smile from my new Graceylou! 
Love you all! Please continue to pray hard
Love the Andersens

Nearly Done!

Gracey's new heart is in and beating!!!!!!!!!!!!!!

They still have to connect it to her pulmonary arteries and stitch up a few more areas....but what a miracle!!! It is in and beating and her huge hurdle is being won!
I guess I shouldn't completely be 100% relieved quite yet..but I certainly feel as though a humongous burden has been lifted! Like Grace is being given a new chance at life, and her new life is beginning right now.  Wow.
Pray that the next hour continues to go as smoothly as the last few have. 
Thanks again!
Love the Andersens

They have repaired the arch and the arteries successfully.  They are now in the process of connecting her new heart.  The nurse that came in and checked in with us said that it is 'beautiful' and that everything is going well so far.  They just need to connect the blood vessels and arch, along with part of the atrium to the new heart.  It will probably be about another hour if not more...but we are definitely one hour closer to seeing our Gracey! 

Keep the prayers coming!
love the Andersens

One Step Further...

We just got another hourly update and they said the heart had just arrived from Sacramento.  They had finished reconstructing the aortic arch and pulmonary arteries and were going to be attaching and putting in Gracey's new heart.  

What a scary thought to think of her having her little heart taken out, and for a moment, only  having a machine doing all the work of keeping her alive for her.  Wow.  What a miracle that technology has come so far.  
Who knows how much longer it will be!? An hour, maybe an hour and a half...but I know that all will be well and that Grace has had angels watching over her these past long hours.  
Thank you for your prayers.  
Hopefully the next update will be to say that all is well, finished and that we are on our way to see our angel again!!
Love you all!
the Andersens

Bypass

They've told us that Grace is now on bypass, and they are removing the stent that has been in her ductus.  It took about an hour and a half just to get all the lines in, and put her under anesthesia, and then another hour and a half before she was on the heart/lung bypass machine.  They just came again and mentioned the stent removal.  It will still be quite a few hours...they still need to reconstruct her arch and pulmonary arteries before they can put in the new heart.

We are hangin' in there.  We ate some breakfast, tried to catch a few zzzs and I made a special order for Karen's blueberry muffins...so we're good. :)
We will try to keep you all updated as we hear more news.  Sorry to keep you on your toes, but the news is definitely coming slow...so...I guess we'll all be on our toes for another couple hours. 
Thanks again for all your prayers and support.  They have helped more than you can know to get us to the place we are today and to have the peace of mind we have had since yesterday.  
Thank you thank you!
Love the Andersens

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

8.20.2008

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.

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

8.06.2008

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!