Major setbacks

Gracie's transplant is NOT going well.

There have been some serious set backs.

Please please please PRAY HARD. 

There have been numerous problems, the heart didn't get there fast enough, Gracie was on bypass a little longer than planned, the heart's left ventricle is not functioning well enough, her body is rejecting the heart.

It is heartbreaking to go through so many emotions is one day.  Overwhelming joy, is turning into despair. and i can't even believe what this sweet family is feeling and going through.

PLEASE PLEASE PLEASE PRAY FOR GRACIE GLEDHILL AND FAMILY.

her blog is linked on the right side as Gracie HLHS.  keep updated, share some thoughts or encouragement, but most of all, please pray and keep the faith of another miracle strong.

the andersens

Miracle of Miracles!!!!

with tears of joy running down my face, i am writing this quick blog.

its a MIRACLE. GRACIE GLEDHILL IS GETTING HER HEART!!

I have not been so ecstatic since our own sweet Grace received her heart.

She has only been listed for an incredible three days!!!

if this is not considered a miracle, than i'm sure the term would not even exist.

I am so happy for this amazingly sweet family.

My heart also goes out to the selfless family who has donated this amazing gift, to not only Grace, but also to all those whose lives Gracie has, and, will now continue, to touch.

Please pray for both of these amazing families.  

For the surgery to go well, and for Gracie to take her new heart beautifully.

And for the sweet family that is no doubt feeling and immense loss right now, that they will find comfort.

Pray pray, and pray some more!!!

Thank you so much!

Love you all!!

The andersens

p.s. and thank you amy for the text!!

Update

So, I apologize for not letting everyone know about the rest of the test results...
but we did get the results back for Parvovirus (Fifth's Disease) and that also came back negative.
So, we know she had to have had some sort of virus...but it went away, and she is even healthier now than before.
She has been eating really well the past three days in a row!! Its been wonderful!! She has been eating record amounts (for her), and I couldn't be more thrilled.
So, just to let everyone know, she is healthy, happy and doing well.
:)
Thanks for keeping us in your prayers. :)
Love the Andersens

Updating

We heard back on the results now of most of the tests.  Grace does not have influenza or RSV, and there was no rejection to worry about with her heart.  So so far everything has been really great news!  Her heart is functioning well, and has no rejection issues.  We haven't heard back about the fifths disease yet, but that is the only one that we are waiting for now.

Home

This is going to be a really quick post.  

Because I am tired.

And so is Topher, and Gracelyn.

So...her fever spiked at 40 degrees celsius.  REALLY REALLY HIGH.

and Tylenol did not make it come down at ALL.

So, the Doctors broke the cardinal "no ibuprofen" rule and after that her fever came down to about 38.1 over an hour and a half period.

They did do some tests to check for a.) Fifths Disease b.)R.S.V. c.)Influenza, and any other related diseases/viruses, but we won't get the results back until tonight at the earliest or possibly tomorrow morning.

We also will not get the Biopsy results back until tonight.

So, for now, we are home, with a sleepy, cuddly and somewhat irritable Grace, but so grateful to be home, and grateful for our spunky girl.  

Thank you so much for all your prayers.

Love the Andersens

Update

Gracey has couple of issues to deal with at the moment. This is Emily, Buggy's sister posting. Bugs just called me and said that about 15 minutes after she was snuggling with Toph, they came to take her temperature and it was really high. Plus she's been throwing up, she's very irritable and her white cell count is down, which usually indicates a virus. They gave her some Ibuprofen to bring her fever down, but it's still going up. There's some worry that she may have been exposed to Fifth's Disease over the weekend and her symptoms seem to be in line with that, but again, that's just speculation at this point. We're confident that she'll be fine, but right now she's super grumpy and irritable and her fever really needs to come down so she just needs some prayers to help her calm down and maybe sleep and some prayers for her mommy and daddy that are worried like always. I'm sure Bugs will update again as soon as the fever starts coming down or we know what kind of a virus we're dealing with. Thanks everybody for the prayers and support!

quick update

Grace is out of her procedure.  Everything went well and she is snuggling in her Daddy's arms.  

All of her pressures looked good, blood flow and everything looked good also.

We won't hear back on the actual biopsy results until later this afternoon.

But if the news is good, the schedule is to leave the hospital around 1:30 or 2:00. 

Quite possibly our shortest hospital stay EVER!

:)

Thank you for your prayers!

Love the Andersens

At the hospital again

It is Grace's biopsy this morning.  We are now in the waiting room, just having left Grace about 30 minutes ago.  She was pretty tired (like us) having had to wake up at 5:30 in the morning. She was also very calm and cuddly,  but not so much that she couldn't coo at her Daddy for a good 30 minutes, and wave at the little baby behind us.  She seemed a little unsure, but still OK when we gave her to the nurse to go into the cath lab....but they're are all so great, we know we have nothing to worry about, except someone stealing Grace's fancy over us ;).  

We feel confident everything will go according to plan and Grace will come out heart healthy, and happy. 

It will probably be about another 2 hours.  Possibly less, as with last time; it was supposed to be 2 1/2 hours, it ended up being about 1 1/2.  So we shall see.

Thank you for your thoughts and prayers, we appreciate them so much.

Topher and I, as well as our families, all feel so tremendously blessed to have things going so well with Grace.  She is a miracle in the most literal sense.  Things have gone so smoothly and ideally for her in almost every way, and we are eternally grateful to our Father in Heaven and to our many friends and family who are always praying in our behalf.

Thank you thank you!

We'll post later after we have some news.

Please continue your prayers for the other families I mentioned yesterday, the Gourley's and the Gledhill's.

Thank you.

The Andersens

PRAYERS PLEASE!!!

Sometimes I am grumpy and stressed because I feel that my life is so far from ideal. I feel pessimistic and worn out with our situation, and especially disappointed for my daughter's life. I want her to be healthy, and normal like all the other babies in my family. I cry, and complain, and feel miserable far too often. Then, I read a few blogs belonging to other 'heart' babies, and immediately feel ashamed.
This seems to be a frequent thing with me, and I feel very embarassed to admit it. However, it is the truth, so what can you do?
Compared to so so so many other 'heart' babies, we have it easy. So, overwhelmingly easy.
Grace's life has not been like a normal, healthy baby's, HOWEVER, for a 'heart' baby, she has had a miraculously smooth ride. She never really looked sick, or 'blue'. She always ate relatively well, slept relatively well, never had to have sporadic runs to the hospital. Her need for Hospital care was definitely the bare minimum. Looking at so many other people's blogs though, I now realize just how blessed we were, and still are.
Heavenly Father must have known where my limits were, and he never pushed me past them.
Grace's Biopsy is tomorrow, and so yes, I would love if you could keep her in your prayers.
But, there are some people that need your prayers so much more than us.
Gracie Gledhill, another HLHS baby, has had a tough tough road. Any of you that have read her blog (it is listed to the right btw), know how hard their journey has been thus far, and yet, it is only getting harder. They have just been told that Gracie is no longer a candidate for the 3 stage surgeries, (she was to have her Glenn this weekend). She is now being considered for a Heart Transplant. How overwhelming this must be for their family. They are still in the midst of getting it cleared with their Insurance company and getting all of her tests done.
But please, please pray for them. Although a Transplant is the definition of 'bittersweet', it is the most amazing blessing and would be so wonderful for them. If anyone can deserve a heart transplant, it is this little girl.
Also, little Gracie Gourley is having a hard time as well, recovering from her procedure, and eating. Please pray for her.
Bela Benson is having the same issues as Grace with eating and also could use some extra prayers.
But, the more I think about people who need prayers and support, the more I am overwhelmed with just how many heart families that are out there, all in need of prayers and support.
*SIGH*
Please for for these families that are all in their trying situations.
Thank you for the prayers that I know will be offered in our little Grace's behalf this weekend.
We feel confident that everything will go well. Grace has been such a fighter this far, we know she's not giving up any time soon. She will most likely do very well, and we won't even have to spend the night, the same can not be said for so many others.
We'll post to let everyone know how it went.
Thank you again
much love
the Andersens

Gracey Movie!!

Failed New Years Resolution #1

Writing a blog on a weekly basis......FAILED

But don't say I didn't try....its my blasted computer that has cut me off at each attempt..(so what if there were only 2 attempts).

All in all, over the past month and a half a lot has happened, and yet at the same time, nothing has changed.

Grace continues in her up and down ways of eating, not eating, gorging, starving, gain 1/2 

pound, lose 1/2 a pound.  She is just a one woman roller coaster with her eating habits.

She was getting a G Tube, then she wasn't, she was eating like crazy, gaining weight...then she ate nearly nothing for 3 days.

Grace just loves to keep everyone guessing.  "Will she have any milk today?  Will she spit all her food out at me and clench her

 face til' it turns purple again?  Will I lose it and

 throw diced peaches at her?  Will she eat anything at all?"

And every day, the answer is a little bit different than the day before.  Some days better, some days worse, but never the same.

She needs to be eating FORMULA 5-6 times a day, 5 oz. each time. She eats 2 oz. 5-6 times a day.  She needs to be eating 3-4 oz. BABY FOOD 3-4 times a day.  She eats 2 oz. MAYBE twice a day.

She doesn't have a scheduled G-Tube Appt. as of yet, but it is very likely to take place in the next couple of weeks.  Topher and I have fought it for the past few months, because we have seen Grace eat like this and then very gradually, she's eating the full amount she needs, and gaining weight.  But this time there is no progress whatsoever.  She is just at a stand still and sometimes she's only going backwards.

Also, Grace has her annual biopsy coming up next weekend.  Hopefully there won't be any rejection like last time, and we can stay off of Lock-Down/House-Arrest.

There you have yourself a medical and dietary update.

Off the stressful, and somewhat boring topic of Grace's eating habits...In every other area she is doing amazingly well.  She continues to excel in every way developmentally.  She has been crawling for almost 2 weeks now.  Pulling herself up on everything to stand for about 2 months.  And just as of a couple days ago, she can actually stand without holding on to anyone/thing.  Note that she doesn't necessarily do this willingly.  In fact, it scares the squeals outta her.  But, she can do it!  We find her sitting and standing up in her crib constantly.  Also, she still says Mama, Dada and numerous other gibberish words.  But she most definitely knows what those first two mean.

She can also say "please" in sign language.  And wave hello and bye.  It is so much fun to see her learn new things, make new faces, or sounds.  

I feel like I'm starting to enjoy motherhood.  Its a wonderful feeling.

Grace is no less high maintenance however.

  She cries if you are more that 1 ft. away from her,a and even then sometimes cries until she is on your lap, with your full attention, and toys.  She screams and hyperventilates if you leave the room.  Refuses to crawl after you, even though she can, because

 she knows she can be picked up if she says "please" (darn those beautiful blue eyes).  Covers her mouth when you offer her food.  Shoves bottles away, and grabs for YOUR cup, then proceeds to "drink"  3/4 of it down her shirt. HUGHPH.  

She is a handful.

  And I whine and complain constantly.  All of our family and friends undoubtedly have some serious doubts about my mothering skills...and esp. about my maternal instincts.  So do I sometimes.  Sometimes I think that if Heavenly Father didn't know me better than anyone else does, he'd probably think I couldn't stand my daughter.  But luckily, he knows my mind, and my heart...and knows there's nothing in the world that I love like my Gracelyn.  

She is spunky, fun, entertaining, playful, energetic, curious, smart, and sometimes when I am very very very lucky, she gives me split-second cuddles.  

Really, I've got it so so good.  I just need to remember that more often and be thankful for who she is. Even if it's not what I had expected, that is ok, because I never could have dreamed up someone so wonderful anyway.  She is her own person, and I need to love her for it more, and complain about it less.  She is our little angel with a BIG attitude and we love her to pieces.  No really, I do.  I love my daughter more than I could possibly, ever explain.  I really do.  But that doesn't mean she can't drive me nuts every once and a while. ;)

So anyway...life is good.  

Grace is growing way too fast.  Not eating anywhere near enough, but we are A.O.K.

Topher is still going to school, working hard.  

I started taking a couple of night classes also...and I'm hardly working.  hehe. ok I'm enjoying myself also.

We've had some fun birthdays this last month or so.  

Happy Birthday to My AMAZING husband just a couple days ago, and also to the lovely Misty, my sister-in-law whose Birthday is the same day.

We also welcomed Misty's new baby, and our new niece, Almaya.  

She is beautiful and oh so sweet.  But something about these Andersen grand babies...they don't like to eat.  Please pray for little Maya's appetite! 

And Happy late Birthday to Daddy, Rachel, and Anya!

We love you all!  

p.s. I had some videos where Grace is just being cute and making faces...but they were too big for blogger to upload.  So i will edit them and upload them tomorrow... for now....goodnight.  :)