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.  :)

Update #2 December Festivities

This update is all about our seasonal happenings for December. I'm not including any medical updates...that will be for another update. Just the happenings for the month is pretty overwhelming so I will leave it at that for today!
Thanksgiving-1st week of DecemberMy wonderful sister Emily came up from Las Vegas for a little while. We managed to have a sisters only outing where we went to Dinner together and shopping. (so needed, so fun, and so expensive…) We also went to Temple Square with her and her boys, as well as my lovely sister-in-law Jen and her two cuties. It was really neat to have Grace with us. Not so neat was how insanely crowded it was! Thus causing Topher and I to have massive panic attacks about keeping everyone AWAY FROM OUR BABY! The lights, however, were beautiful and the feeling by the temple was awesome, so awesome, that even our thick headed little Gracey might even have been able to feel it!! ;)Anyway, I loved being able to see and spend some time with my sister and her ADORABLE boys. :)
December 15-19
This was Finals Week for Topher, so it was pretty crazy. Topher ran around like a zombie half of the week, and a chicken with its head cut off the other half of the week. Or maybe he was a cross of the two the whole time. I dunno.December 21
This Sunday was the Christmas party with Topher’s extended family. It was very exciting as well as nerve-racking to bring Grace with us. Everyone definitely loved getting to see her, but there was always a bit of nervous tension in the air when we walked in a room. Everyone thinking to themselves if they had sneezed at all during the day probably. We got some neat gifts and also were able to go to Austin’s (Topher’s little bro) Eagle Award Ceremony. (Way to go Cpt. Awesome!!)
December 24 Christmas Eve
We went to Topher’s folks and had Christmas Eve festivities with them. We did our family Gift Exchange, where I was able to give some gifts I had been slaving over the for past few weeks. I had made my sister-in-law Misty a diaper bag, and then filled it with goodies. (my pride and joy!) I had also made pj pants for her spouse Jose, an apron for the master chef, Curtis,(dad) and a skirt for Venice(mom). Lucky for my nerves, everyone seemed to like their gifts, and and that was a big relief. :) We also did a mini performance of the nativity scene and then just enjoyed the evening.
After we came home, I made my last attempt to try and get into the Christmas spirit. For some odd reason, I just could NOT get into the spirit of the season this year. I tried very hard to make a lot of presents from scratch, trying to not spend as much money, but more time instead. I tried to get things done early, I made cookies for neighbors, read Christmas stories with Grace, put decorations up right after Thanksgiving…and yet whatever I did, I just wasn’t feeling it. So, once home, and having put Grace to bed, I set to work determined to feel it before I went to bed. I read the majority of the stories in the December's Ensign, one after the other, each one making me cry more than the previous (I definitely should have done this MUCH earilier) and that had the desired effect. It was able to completely brighten my spirits, warm my soul and give me an immense gratitude and love for our Savior, and for Christmas as a time to remember him. Way to go me. And way to go Ensign writers!
December 25
Christmas morning was spent with just us 3. I woke up early and made a Gourmet Breakfast for my sweet husband. I let him and Grace sleep in as long as possible, and then we had Christmas morning together. To think that last Christmas time had been spent with Topher and me crying on the couch in each other’s arms almost every day, fearing our little girl might not live to see her first Christmas, and then to have what we do now; a healthy, growing, beautiful little girl sitting in front of us, enjoying Christmas with us...well it was almost too wonderful to seem true. Truly, we shouldn’t have needed anything else for Christmas at all. Grace is enough of a gift to last us a lifetime of Christmases. But, I guess that didn’t register well enough for either Topher or myself, because we still had a very spoiled Christmas. Grace wasn't really into the whole opening presents thing this year...in fact, I'm pretty sure I ended up opening almost ALL of her presents. But oh well. She certainly loved playing with them once they were open, and that was the important part anyway, right? Here is our little elf...In the evening, my cute pregnant sister Dacia and her crazy spouse came over, and then slept over for the next 2 nights. In 14 short hours, we managed to watch all of Chuck season 1. (THANK YOU AMY!!!!) We’re thinking of making a tradition of it, it was so fun. My sister told us on Christmas morning that they were expecting a little girl, YAY!!!!
December 27
We had a Christmas at Dacia’s house with my Mum and her sweet spouse, as well as my brother Alan (who we had not seen in nearly 2 months! We missed you!) and his family. I was so excited to give my sisters and Mom their gifts! I had made them aprons, and it was very rewarding to see them all like them as much as they did. Dacia also gave us a very sweet gift, the Proclamation to the Family, framed, with pictures of our little family all around it. I love this so much, Thank you!
December 31
For New Years, we had Christmas at my Dad’s with my brother and sister again.Topher and I were able to go running together, it kicked my butt! But, it was good since to get some exercise in, since I probably haven’t run at all since my Triathlon. We enjoyed some VERY yummy steaks, (thank you daddy!) as well as a good breakfast, gifts, lots of games (RISK 2x in a row until 3 in the morning!! Yikes) and very good time all around.

So, that was our month. It really wasn't as insane as it sounds...only partially. We loved our first Christmas with Grace, loved having Topher home for a 3 1/2 week break, loved seeing love ones, and truly enjoyed the season.

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. :)