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

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

Gracey video...Pre-Transplant

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  

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.

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