Blog update #1

Well, for starters, Merry Christmas! & Happy New Years! Sorry I’m late. But, it’s been a fun, crazy, busy and stressful Christmas break, and my computer has given me such a headache that it has prevented me from posting my well wishes in a timelier manner! Apologies! I hope everyone had a wonderful holiday and that the new year has been good thus far.
Some big news….rather old news…but, like I said, I’m a little late…so it’s big news to those of you not up to date on our happenings…yes, yes, my fault, I know
Grace is NG Tube free!! Yay!! She actually has been tube free for about 2 months now….(shows you how long its been since I last posted….ooops). She pulled her tube out one day at clinic, and she was eating and gaining weight so well that Dr. Everitt said we could give her a shot at eating purely on her own. Go figure, the day after we took the tube out her appetite seemed to have dropped off a cliff or something, but oh well! She has done amazingly well so far. Maybe not for a normal baby, but considering her circumstances and where her eating habits used to be, she has done phenomenally well. She actually enjoys eating, and eats at the perfect frequency for a baby her age….However, she is not eating the perfect volume for her age...more on that later.
I don’t want to overwhelm anyone with 5 updates at once, so, I’m just going to end this post for now, letting you all know that we are alive and well, Grace is doing great, she loves having no feeding tube and eating all on her own, and I will have a new update tomorrow!
Thank you all for your continuous prayers and well wishes, even with my lack up updates!
Love you all!
The Andersens

Eating Mash Potatoes

We re-loaded the video so now anyone can view it!!
Enjoy
--Topher

Pictures

These are kind of out of order and are a little old now.but oh well! they are fromThanksgiving day. Bath time, eating mash potatoes, playing piano with her Uncle Joe, showing off her new teeth (two, on the botom!!), etc...

i dont know if that is enough explanation or not, but, its late, im so frustrated with this new computer stuff and such, that i'm just gonna post them and be done... :)
i still haven't figured out the videos. when i do, they'll be up. :)

Happy Thanksgiving!

Last week was quite the whirlwind of activities.

My big sister Emily came into town from Las Vegas with her 3 ADORABLE little boys and Topher was sweet enough to make it possible for me to spend as much time with her and my other sister as I possibly could.

My 2 sisters, sweet sister in law and I all went out to dinner one evening at La Vigna, (an over priced but tasty Italian restaurant with the sweetest waiter) and then went shopping to Old Navy, (until closing), and then to Target, (until closing), both places in which at 20 minutes to closing time we were still either trying clothes on or still in the middle of our store loop.

It was so much fun to be with my sisters! None of us had any kids and so we were free of screeching, hair pulling, chasing kids down aisles, medicines, feeds, crying, and whining. We could just be silly girls, staying out late and enjoying each other's company.

Thank you Dad and Karen for watching most of the kids so that this was possible, and thank you Topher for watching Gracelyn!!

I also met up with them at Dacia's house one night, and then again at my Dad's house another night...but that night, I spent more of my time cuddled up on the couch with all my neices and nephews watching Wall-E than I did with my sisters. THAT also was so wonderful. I don't remember the last time I was able to be an Auntie and big sister without worrying about Topher or Grace or medicines..it was nice to just hear complaints about who got to be under which arm and who got to be on my lap.

For Thanksgiving, it was really neat to have such sweet sacrifices made for us so that we could be part of the festivities.

The day of Thanksgiving, Topher and I spent the majority of the day at home, and my sister, Dacia, and her Husband Joe came over later that evening to have dinner with us.

The day after Thanksgiving, we had originally planned to go to Topher's parent's house, however with Grace's biopsy having happened, we weren't sure this would be the best idea..WE consulted with Dr. Everitt and after some consideration it was determined we could go if everyone was in good health and we felt comfortable....this almost didn't work out because Topher's sweet family is very very protective of Grace and so people were very over paranoid, but that's ok!! It's very thoughtful of all of you!! However, we went anyway, and felt really good about everything, and had a really nice time seeing some family that we had not seen in over 6 months.

On my family's side, it was our year to be in Las Vegas... but... they changed their plans so that Topher and I could attend, (Thank you Emily and family!) We all got together at my Dad's on Saturday and Venice was kind enough to watch Grace. We didn't even consider taking Grace to my family's get together because it is unheard of for my sister's children ever to all be healthy...hm...I guess that's what you get when you lick the floor, your shoes or stick everything you find on the floor in your mouth...oh well!

I also got a chance to go to Body Worlds with my sisters, this was SO interesting. Heart moms, or anyone part of a heart family...if you get the chance, you should do this, it is fascinating and so educational.

Anyway...I don't know how many of you have even gotten this far...don't worry...I"m not offended if you skipped half or even the majority of the post...it was definitely longer than I'm sure people enjoy reading.

I supposed I just could have said that I was able to spend a lot of time with my family and that that was very meaningful to me and I'm very grateful.

There, pretend that's all I said. Short and sweet right?

I truly am so grateful for my family. They are so wonderful and I love each and every one of them so much. They all go out of their way to make things easier for each other and for me and I appreciate it. They truly are my best friends, my examples, my rocks of support. I'm so grateful to have been blessed with the family that I have. No other family could have done for me what mine has. Also, Topher's family is so sweet and thoughtful also. They are constantly giving up their time, and energy to help us in any way. They are so crazy about Grace and would do just about anything for her.

At the dinner at my sister's house, we had a gratitude jar, where people wrote things down that they were grateful for.

I'd like to share some more thoughts I've had along those lines...

I am grateful for ...

music

family

friends

books

imagination

scriptures

tithing

the priesthood

temple marriage

eternal families

missionaries

kindness

love

the spirit

nature

prayer

waterfalls

my sweet beautiful daughter

my amazing husband

a loving family

doctors who have saved my daughter's life more than once

a selfless family who has given my daughter a 2nd chance at life

a daughter who can pull the ornaments off my christmas tree, spill hot cocoa on my carpet, try to rip open just wrapped presents, and unravel all my ribbon..because I never thought she'd still be here this Christmas time to do any of those things...and now she can. :)

I am so thankful for all the my Heavenly Father has given me. He is wonderful. It may seem strange, but I can honestly say that I am grateful for all the trials Topher and I have been through together since we became pregnant with Grace. They were not easy, and they still aren't, but I am grateful for them. I am grateful for all the blessings they have brought into my life and for the gratitude they have instilled in my heart.

Love you all so much!!!

Sorry that there aren't any pictures.  i have some really really good ones, but they're on my computer...which is not working right now. :(

as soon as i can get it working, i'll post the pictures and video that we have of her eating mash potatoes and such. 

congratulations for making it through another longwinded blog.

sorry its so behind!!!

Biopsy Results

Sorry for not having updated during the day...Topher was at school from 8 until 2:30, with his laptop...leaving me unable to blog.

And then, when he finally did arrive, the internet connection was HORRIBLE!  It was taking literally 5 minutes for 1 page to load, and then it would freeze up.

The connection seems to have regained some speed now...so I will proceed with the update!

After many late meds, wrong meds, late feeds, no feeds, foot pokes, IVs, mis-communications, frustrations and rude comments, (mostly on my part), we did finally get into the Cath Lab at 9:00 this morning...(Originally this was supposed to be at 7:30, then at 10:00, then at 7:30)...

I won't go into detail about all the above things...because it would take way too long, and it would fire me up and I'd say rude things and look like a bad person all over again. :)

So, as I was saying, she went in at 9:00.  My Mama-in-law was sweet enough to come be with me from 9 until 10:30, and that helped relieve a lot of my stress (Thank you for keeping me company Venice! You're wonderful!).

Grace got out from the lab at 11, happy, and hungry and trying desperately to sit up.  Because of where they went in in her groin, she was on "bed rest" and wasn't supposed to sit up or stand, and was supposed to keep her leg straight.  Hahaha!! I'd like to see anyone keep an 8month old's leg straight and still.

After I met up with her she proceeded to eat 95 cc of Pedialyte in 15 minutes, zonk out for an hour, wake up and eat 120cc of Formula, zonk out for 2 hours, wake up and eat 80cc, play for 30 minutes, zonk out and start all over again.

The steroids are definitely making her super hungry. And hey, if that's the only good thing that comes from this visit..I'll take it, no complaints!

Anyway..I'm drifting off topic...and I know I'm not making much sense and I'm kinda all over the place.  Sorry.

So, the pictures from her biopsy all looked good.  None indicated rejection.  Pulmonary arteries looked surprisingly beautiful, aortic arch looked really funny, but functioning great, SVC also looked good, blood pressures were good.  All her blood work came back looking good.  

Her biopsy snippets came back with an overall rejection level of 2.5 which is just mild rejection.  This is supposedly to be expected, and just fine.  

Because of the slight rejection we'll be increasing her steroids again.  But, instead of taking 2 1/2 months to wean her down, it will only take 2 weeks, so that is definitely good news.....and bad news.

Good news because she is healthy and well overall, and will be even better in only 2 weeks...bad news because we are starting all over again not only with severe immunosuppression, but with the severe house arrest....right before Thanksgiving. :(

But that's ok.  We are just grateful this is all there was to deal with.  We know it could have been so much worse, and we're grateful that it isn't.  We're grateful she is eating so well, sleeping well, and that she is as healthy and happy as she is.

So, it's been a long day, with not much new information, but I'm sure its good to know where we stand. :)

 Thank you so much to everyone for all your prayers.  We have definitely felt them throughout the day.   We are so grateful for wonderful and supportive family and friends. We have recieved so many calls of support and love and are so grateful for each and every one.  It is such a blessing to have such a wonderful support system.  Thank you thank you thank you!

We love you all so much!

Hope you all have a great weekend!

Love the Andersens

NOT part of the Plan!!!

Well...I know we haven't posted in...way too long...and so people aren't too up to date on Grace and her happenings.

I apologize profusely. 

So, to quickly summarize...

Within the past 2 weeks we have had some big changes.  

Week of November 2-8

Grace eats between 50-60cc on her own, 2-3x a day

Week of November 9-15

Grace eats between 60-70cc on her own 3-4x a day

November 13, Thursday

Grace has her usual Cardiology appt. Her Echo doesn't look so good.  There is more than normal leakage from her Mitral valve.  Could be a sign of rejection, could be nothing, could be something.  Reschedule for Monday to check into it more

November 17, Monday

Grace has her check up on the Mitral valve problem...all seems well.  Mitral valve leak seems back to normal, if not better.  All is well!

November 16 & 17 

Grace eats between 70-75cc on her own 4-5x a day

November 18

Grace pulls out her NG tube, and her mom is too lazy to put it back in.

So, NG tube stays out for all of Tuesday, Tuesday night and Wednesday

During this time, Grace eats 70-80cc on her own, 5x a day, and wakes up twice during the night to eat some more!!!!

Talk about amazing!

The process seemed to happen so slowly that Topher and I didn't even really realize how well she was doing until...all the sudden...she's eating 3/4 of her feeds...on her own, and doing it 5x a day instead of 3.

November 20, Thursday

Grace has her usual Thursday appt. again...

Echo looks bad...again...

Her mitral valve had leakage again, and it was worse than it has been thus far

So...in case you haven't guessed yet.  

We are in the hospital.

We admitted her shortly after her appt. and so we are just hangin' out on the 3rd floor.

They have bumped her scheduled biopsy from January...to tomorrow morning.

So, bright and early tomorrow morning they'll be doing a biopsy to check for possible rejection or any other problems.

Please pray that all is well and normal.

If there is any sign of rejection, we would have to start all over at ground zero again...not only with her medicines and immunosuppressants, but also with her super strict House Arrest...

We had just BARELY gotten permission to visit some family and to possibly take her out for the Holidays...and we also were at the bottom of our taper for her steroids..

This would be a big step backwards...and we were really hoping to go the OTHER way.

*big sigh*

I keep telling myself that there are worse things...that we should consider ourselves lucky that the Doctors found whatever this is early on, and in time that anything that needs to be done can be done in the right time frame.  I also have tried to tell myself to just be grateful.  There may be rejection, but it isn't effecting anything other than this valve.  She is happy, playful, sweet, eating well, sleeping well and just an angel.  

I really am so grateful for how miraculously well she has done thus far.  I guess it would just be too easy if we didn't have a bump somewhere in the road.

Topher, his Dad and my Dad were able to give her blessing this evening, (thank you so much!!!) and I feel confident everything will be fine.  This little girl is too feisty NOT to make it through ANYTHING...

But, a mommy can't help but worry when her sweet baby's health is possibly compromised.

Please pray for our sweet little girl, and for me to find more things to be grateful for, instead of things to be pessimistic about. :) 

We love you all so much and are so grateful for everyone's prayers, and support.

We'll try to update over the weekend to let everyone know how it all goes.

We'll most likely be here tomorrow night and possibly the night after as well.

Thanks again!

Love the Andersens

p.s.  oh, and sorry for the lack of pictures...

to paint you a picture...Grace is cuter than ever...trying her darndest to stand up...she loves to jabber and is constantly chanting "a ba ba ba ba ba", and occasionally a 'ma ma ma'...but I think its accidental. :)

She's adorable, sweet, feisty and fun, as well as a big pain in the butt at times. :)

I'll try to include a picture next post!

The Cookie Monster

Fear not everyone. Our daughter will NOT starve to death. No, not at all, becaue how can anyone starve, when their new favorite food is packed with calories.

But where are my manners...let me start at the beginning.

I wanted to eat something fattening, because I was watching Gilmore Girls, and Gilmore Girls does that to me. So, I got out some oreos...and some nutella. Then I plopped myself down next to Grace and began to cram my face full.

Well, only one oreo into it, Grace got EXTREMELY mad at me, and I couldn't figure out why. I tried a binky, a rattle, a bottle...but no, she wanted nothing.

Nothing, except...MY OREO!! She GRABBED it out of my hand, and SHOVED it in her mouth, and began sucking and slobbering ALL OVER IT.

This girl MUTILATED my oreo. She would not relinquish it. It is her new favorite food, and hey! For only ONE cookie she got a little over 50 calories!!! SWEET!

You might ask, "Is 50 calories really worth that mess?". And let me just tell you, it is. It was hilarious and so cute in an amazingly disgusting way.
My only sadness is in the fact that none of these pictures show the pure glee that was all over little Grace's face while she was sliming this poor helpless Oreo. She absolutely loved the thing.

We had to pretty much dump her in the bath tub afterwards because, as I'm sure you saw...the cookie was not just on her face, but on her hands, clothes, arms, legs, butt, back, Topher's face, my arms, my hands, Topher's clothes...

It was quite the ordeal. But so funny, and so blog worthy as a quick update for all of you.

We're doing well...I'll be sure to let you know how she weighs in on Thursday. :)

Last Monday!!!

We had our last Monday appointment this morning!! Twas wonderful.

Grace is still doing really well. Her cardiologist is really pleased with how well Grace is doing developmentally. She can roll over, (not on 'purpose' per say...and not happily, but she can!), she can sit up on her own, and she is starting to stand frequently if you hold her hands. Can I say they are happy with her eating? No. But, oh well, what's a girl to do right??

Grace still will not eat, even after trying a new method, where she received NO FOOD FOR 12 HOURS, (throughout the night), and yet she woke up, happy as pie, and not wanting any food in any form. *sigh*

I just don't know what we're going to do with her. She can eat, she just doesn't want to.

But anyway, we are pretty darn excited about no more mondays. We also got some good news about her 'house arrest'. Although we still can't take her to actual places, like grocery stores, movies, restaurants or any where with crowds, we did get permission to possibly take her to family's houses. Of course no one can be sick, there can't be a large group of people, and it would be better if there was not an abundance of little kids, AND of course, everyone must have a flu shot.

It is something that will hopefully work out, and we'll be able to hopefully visit familiy a little bit more frequently now. I would think we'll still keep it to a minimum, but, its nice to know the option is there now! It may not seem like such a big deal, but this is huge for us!! Grace really is just doing so well. I feel so blessed to have things going as smoothly as they are and to have such a tough little daughter. She may be feisty in ways I don't like so much, but at least she's feisty in all the good ways too.

Here are some fun pics of the little Gracelyn!

She's always pulling on my earrings and necklaces, and trying to stick them in her mouth, so I decided to let her wear them the other day, and I got some cute pictures. :)My sweet visiting teacher made this ADORABLE hat for Grace and I absolutely LOVE it. She is amazingly talented, and you should check out her blog. :) hatsbyash.blogspot.com Thanks Ashly! You're the best!Thank you again everyone for your prayers in our behalf. I know they make such a difference in not only Grace's overall development, but also in my patience with her, my ability to take care of her, her moods and so many other things! Please keep them coming, and pray extra hard that the silly girl will want to eat her food! We love you all and are so grateful for your support, love and prayers! Have a wonderful week!

Love the Andersens

How Time Flies...

It is so crazy to me that just 7 months ago we had this... 2 Months ago this...

And now, THIS!
7 Months has flown by so quickly, and the last 2 even more so.

On the 18th Gracey turned 7 months old!! And then, just a few days later on the 21st, we were thrilled to say that Gracey has had her new heart for 2 months.
We still are and forever will be, so grateful for this immense gift that has blessed our lives. Grace truly is a new little person and is so full of life, spunk and fun. She is a sweet spirit and we would be without her if it were not for the selfless act of a sweet family far away.

She is growing so fast, and progressing so much.
She still is not eating on our own, but that is about as bad as our battles have gotten. And I suppose if that's the only battle we are left to fight, then I can deal with that.

Starting next week, we will only have to go to the Hospital once a week instead of twice! yay!!!

This is a big step for us and we are so excited Grace is progressing as well as she is.

We are grateful to everyone for your prayers and support. Please keep the prayers coming, not only for our little Gracey, but for us as her parents as well. It actually takes a lot more energy that we ever could have imagined to take care of her, and it definitely takes it's toll, especially on Topher with his full time school, engineering department and Huntsman lab committments. He sure is drained after a full day of everything. And yet he always comes home with a smile on his face, ready to play with and take care of Grace. He is a wonderful Daddy and Husband, and I"m so grateful for him..but please keep him in your prayers that he'll have the energy to make it through school!!!
We love you all so much and are again, so grateful for all you do.

Thanks again!

Love the Andersen's

p.s.

oh...and btw...for those of you that have made your blogs 'private'...but that follow our blog...I'd REALLY like to be able to continue following yours...a.k.a. Baby Joshua and family....and Halle-lou-ya...so, please add my email to your "o.k." list. :)andersen.alysia@gmail.com

Update on Gracey

Grace has been doing all right lately. She has had a little bit of a sore throat and cold the past few days, which has been making her more irritable, more sleepy, more cuddly and even less willing to eat. So, it has its pros and cons. Other than that, not much interesting has been happening as of late.I did go out of town last weekend. My sister and I traveled up to Idaho Falls to visit with my Mom. It was wonderful to get a break from Mothering, and to just have fun. However, I was not without numerous worries about Topher and Grace. He forgot to do her meds a couple of times, and I returned home with Grace on a very new sleeping schedule...its called one nap...an hour before bedtime, and then bedtime whenever she happens to pass out on your lap, (normally around 10:30). Thank you so much Topher!

No, I know I may sound negative, but truly, Topher did a wonderful job with her. We did discover that he definitely can't replace me as the Mom, but he is always a wonderful and amazing Daddy, and I so appreciated his willingness to watch Grace all day, by himself, for multiple days. You are wonderful honey, thank you!!

Our Dr. appointment also didn't have anything new or interesting to say, just affirmed that yes, Grace has a sore throat and cold, but sorry, there's nothing to be done about it, the Drug Companies pulled all Infant Meds off the shelves, so, we've been just sitting it out, and its been ok so far.

I have had numerous requests for pictures...I tried to explain to my sister, that Grace just has not been photogenic lately, but she didn't seem to think that was a reason not to post some anyway...so tossed in numerous random photos from the past 3 or so weeks. This last collage is my favorite...the top 2 pictures just crack me up. I know she looks like she's going to eat you in the left one, however it was actually a HUGE grin. She was thrilled! How funny that she looks like she's about to eat you. And the one to the side of that just reminds me of some quirky bird. She's a cutie.Thank you everyone for your prayers and support. We are doing well, but if any of you are still willing to keep us in your prayers, please pray that Gracey will find the desire to eat once again. I know I joke about it, but it truly is such a battle with her. She will not eat, and what food I do get into her tummy is thrown up almost instantly nowadays. We have actually gotten to the point where it's not that she can't tolerate the food, and its not that she won't put anything in her mouth...She can tolerate it, and she'll put her binky, fingers and any toy in her mouth, but she will go ALL DAY never wanting a bit of food. If not for her feeding tube, this girl truly would starve to death.

We would appreciate any prayers in her behalf to help her re-learn eating and to remember how much fun it used to be for her. Thanks again everyone!