Continuation

Well as a contiuation as the last post:  

I couldn't wait to just get that last post posted so I really flew through it, but hopefully this one will have a few more details in it. 

We are at Primary childrens hospital.  We got sent right to the PICU (Pediatric Intensive Care Unit).  Not that grace needed the extra care at the moment, but they weren't too full and by tomorrow we will need to be here, so we just got put right into our own little room here at the PICU.  

At this point we are just getting registered, and situated.  We still havn't seen our actually doctor yet, but what we have been told is that the surgury itself will probably happen in the "Wee hours" of the night.  Though It is pretty hard to tell the difference between night and day here at the PICU since it is always busy, and bright, and seems like the middle of the day.

As far as me and Alysia, we are doing great, don't need anything right now, just lots of prayers please! thank you everybody!!

Well....this is it...this is us once again in the ICU...a lot more smiles this time than last.

We recieved a call at about 7:00 this evening.  Alysia was on the road to pick up registration stuff for her triathlon this weekend when the cardiologists called and said that they have a heart.   I didn't have my phone with me at home with grace so Alysia actually called one of our neighbors and told them to run me a phone so that I would know to stop all feeds and get everything ready to come into primary childrens.  

We then got the official call that it was a match and it is really going to happen at about 8:00.  I don't think that we have ever gotten here so fast.  

Now we are waiting and setting up.  I will post more as we learn more.

6 weeks and praying!

We had a Doctor's appointment this morning.  We scheduled a very complex open heart surgery for the week of the 22nd of September.  This will be in case she doesn't get a heart before then.

wow.

just had to get that off my chest.  

So that's the run down of the appointment this morning.  The run down, totally broken down, in a nutshell. 

In all sincerity, I actually was filled with so much information today at her appointment, that I came home completely overwhelmed, and in need of a serious nap.

So...if you would like to avoid the same overwhelm-ingness...you can stop reading now...because after all..you did get the nutshell version.

Now...for the long-winded...non-sensical version..

For the time being, Grace is doing great.  Her saturation's are nice and high, she looks great, she's developing wonderfully...but these signs are a little bit strange..because according to her Echo cardiogram and her EKG, all her levels should be much lower.  hmmmm.  Heavenly Father must be working some magic here that science can't explain.

Anyway...the Cardiologists and Surgeons had their weekly conference yesterday and discussed Grace and her condition.  A few different options were brought up.  One, being that she have a surgery now, while she is healthy...however this would decrease her chances of receiving a donor heart.  Two, being that she wait as long as she can for a heart, until she drops in status...which is when she turns 6 months old.  At that point, she drops from a 1A to a 1B, and her chances are then not so good of getting a heart...we would then do the open heart surgery...which would be a combination of the Norwood and Glenn surgeries...as well as reconstructing her Arch...and attempting to fix her Tricuspid valve...all in all a VERY complex procedure...if it went well, they would de-activate her from the Transplant List...only re-activating her if she were to get sick again and come back as a 1A, and keep all her waiting time.  If she were to do poorly after surgery, they would keep her on the list, and she would remain a 1A if her medicines were specific to the status.

So..it was a lot of information...and I've probably already managed to lose over half of the readers here because my gibberish makes no sense...not really to me either. Ha!

Anyway...we are nervous and praying hard that the next 6 weeks will all happen just the way Heavenly Father sees fit.  We hope that everything goes as it should, and that we can try to appreciate and love Grace as much as is humanly possible.  

She is definitely not a walk in the park, but there are times when it feels like she is the closest thing to Heaven I have ever been in contact with.  She can be so angelically sweet and peaceful at times...and these are the times I am so grateful for her and am overwhelmed with the love I feel for her.  

I hope the next 6 weeks are life changing...and life changing in a way that Grace will then be able to spend many many more years with us.

Also....as a side note...I just have to say how amazing Grace's Doctors are at Primary's.  I adore her Cardiologist, Transplant Coordinators and Nurses....they are so so wonderful and helpful.  They would drop anything to help me or Grace and they always love to hold and cuddle her.  They are always mindful of her and her feelings, as well as mine.  They don't even feel so much like Doctors anymore, but more like dear friends.  I'm so grateful to have that relationship with them, and to have such a reliable way of communicating with Grace's care takers....they really do want what is best for her...and that is wonderful to me.

Well...I hope I haven't completely lost or confused anyone.  Thanks for listening...and although I never doubt that we are being prayed for constantly...please keep praying for us.  The next 6 weeks are sure to be difficult as well as rewarding....so please continue to keep Grace in your thoughts and prayers.

Love the Andersens

An update

Sorry for the long delay between posts. I suppose not much has happened. Or, the fun things that did happen, we didn't get pictures of to report on!

I have just some random pictures of Grace thrown in here. The ones with the big pink bow I had to put in to show everyone what Angel Annabelle and her Mommy sent to Grace. For those of you who were familiar with baby Annabelle, she always wore these big pink bows and always looked adorable!! Well, her Mommy has started a really neat project putting together Annabelle baskets, and she sent us this cute bow, some socks and a heart burp cloth. I loved the bow. It only took me a minute to get used to and then I didn't want to take it off!!

Grace still really likes cuddling with her Daddy. She is definitely Daddy's girl to the extremes.

Topher and I haven't been up to much. His summer semester of school is over, so he is enjoying his month of no school. I am still training for my Sprint Triathlon, less than a month to go.

Grace is doing great. Although her Cardiologist did say she most likely only has 4-6 weeks before they will have to do some sort of open heart surgery to stabilize her heart condition, she is doing well. Her saturation levels are staying much higher than her Doctors expected and she looks great. She is working hard to sit up. She hates being layed down. She also has started grabbing things. Toys, blankets, and everything she grabs goes straight in her mouth. Often times it's daddy's thumb which ends up in her mouth, and comes out soaked in drool.

She also has started talking, or cooing, One of these days we'll have to borrow someone's video camera so we get get a clip of it to show you all. It really is so sweet.

On another note, our families are wonderful. Curtis' Birthday was two days ago, we love him SO SO SO much. He is such a wonderful father and father-in-law. We are so grateful for him and all he does for us.

Last weekend Topher was sweet enough to offer I go visit my Mom in Idaho and said that he would stay behind with Grace. He ended up spending the weekend at his parents house. His whole family, primarily his Mom, watched Grace and fawned over her constantly. So, Curtis took care of Topher, Venice took care of Grace, and my Mum took care of me!! It was such a wonderful weekend and I can't wait until its been considered a long enough time that I can go do it again...do you think one week is long enough???

Anyway...just wanted to update and let everyone know that all is well here and we're grateful for our family and friends that make life so much more manageable and enjoyable!

Thank you for all your prayers and support. Pray hard that she'll get a heart in the next month/month and a half!! She needs it soon or else there will be some drastic changes, although change is good too if it's in accordance with His will.

Thanks all! We love you lots!

Breathe Easy

No worries...Grace is doing ok here at home with us. Her Echo came back fine, everything looks the same and normal for her. She did however test positive for AdenoVirus. They said this would completely explain her fussiness, as well as her fever. They didn't prescribe any antibiotics, but did say we could give her Tylenol to help break her fevers and relieve any minor discomfort. So, for now we are at home, stuck with a grumpy, but very cute little Grace, just hoping that the time will go by quickly and she'll be back to her usual adorable self soon.
Thank you again for all your prayers, concern and support. Sorry if we scared anyone into thinking it was a serious problem we were facing!! We were unsure of the outcome too!! Thanks again for all your prayers and support. I'm sure they are helping Grace feel more comfortable and helping her recover from her virus.
Love you all!
oh and btw...please keep the heart babies in your prayers. Baby Teagan had his Glenn surgery yesterday, and is in recovery. And baby Alex has been moved to the Floor for recovery from his heart Transplant. They could use all the prayers they can get!!
Thanks again
the Andersens

So far...okay

Well..Grace was really good last night...but when 7am rolled around...not so happy. Her thoughts were probably something along the lins of "I ate over an hour ago you guys!!! It's time to eat again!!! What's going on?!!". Now that she hasn't eaten in 5 hours...she is reminding us every 5 seconds by wailing, screaming, kicking and rooting at EVERYTHING, that she is starving, and she will not stop pouting at us, and will definitely NOT smile at us, until she is given some food!! She is definitely not a happy camper. On top of being starving, her IV Line came out, so IV team is here, poking her, trying to get another IV in. I'm pretty sure she is never going to smile at me again. Hopefully after she is sedated and her sedation has worn off...she'll forget how mean we are and like us again. ;)
Other than her extremely upset, angry and hungry disposition, she is doing well. She hasn't really had another fever, so thats good news, and I haven't heard about anymore test results. She is on oxygen again because the elevation here is about 600 ft. higher than at home. It's actually really funny, because she's not used to having a nasal cannula in her nose, she is constantly snorting. It is really funny. She has a slight snort in her breathing, and then when she gets angry she really gets going. She she also is in her own little crib which is much cooler than her previous room-in bed. Its no fun to have her attached to a ton of wires and such again, but hey, if they make her more comfortable, than all the better. :)
Her Echo is sceduled for 11:45...so in about 30 minutes. It'll probably be about an hour or more in length because they're going to try and get it extremely detailed. Hopefully we'll find what is making Grace so uncomfortable and unhappy, and we'll be able to go home much more happy and hopefully healthy. :)
Oh...and for those of you with interest...primarily my family I'm sure...this was my special delivery. Topher bought it for me because he loves me...and I'm spoiled. hehe It's beautiful and I LOVE it. :)

I had to post this picture to show you her new adorable outfit from Grandma and Grandpa Andersen. They bought it from an Asian boutique in the Mall of America. Isn't she so cute?? Maybe she looks like a boy...but a darn cute boy for sure. ;) Thank you for all your prayers and support! We are so grateful for our amazing family and friends that are constantly praying for us and always offering help to us. Thank you thank you!!

New Info

Grace has been acting uncharacteristically fussy and irritable, not to mention not sleeping well but always being exhausted, and also not eating that well. We decided that when she went in for her Dr. appointment today that we would ask them if they thought anything might be wrong.
Since I needed to be home at exactly the same time as her appt. to accept a special delivery, Grace's Grandma Andersen was sweet enough to go to the hospital with Topher to help take care of Grace. Dr. Everitt checked her out and after noticing a fever and also her irritablity, decided to admit her over night. They want to get an echo with her sedated tomorrow, and they already took a bunch of blood samples, an x-ray and they also are doing a urine and stool sample. I guess they think she may have some sort of virus, or possibly a urine infection. I secretly hope that something is wrong, so that we can fix it and she can return to her happy usual self. It would be kind of upsetting to learn that she's just getting permanently grumpy.
;)
We'll be staying over night with her and her echo should be some time tomorrow in the early afternoon. i would post some pictures, but my lap top won't let me. i'll post more later when I have more news.
please pray for Grace that all goes well. and that whatever is bothering or hurting her is something than can be fixed. we love you all and are grateful for all the love and support!!
love the Andersens

Priceless....and...a Tag

This morning...Grace looked so so so adorable. She finally fit into the cutest sleeper that my Cousin Christi (Gick) gave her, (thank you SO SO much by the way, i LOVE it) and so I tried for over half an hour to get a 'priceless' picture...I never got the shots I had specifically wanted because Grace would not cooperate...but these few still turned out pretty adorable. Sometimes, you don't find what you were looking for, instead you find something even better. :)












I fall in love every time those big blue eyes look right at me.
This mid-yawn cracked me up so much I had to post it.
This...I know it's kind of a weird shot...but it shows off her killer long eye lashes!! I'm jealous!


And then...although this is out of the blue...I was 'tagged' by my Aunt Kalani...so...here goes

Five things I was doing ten years ago:
1. Probably being beaten up by my big Sister Daysh...she was so mean!! hehe ;)
2. I think I was in...4th grade? 5th maybe? probably playing 'boys chase girls' or something silly like that
3. Playing piano...I love piano. I think I was better when I was 10 then I am now.
4. Reading a TON. My mom used to come in, find me in my closet reading and make me go to bed!
5. Possibly playing over at the Buckley's. They always had a new batch of kittens in the summer time that I would go play with and then bring over to my house, almost always convincing my mom that we needed one. :)

Five things on my To Do list:
1. Clean the car...inside and out. yuck.
2. Write in my journal.
3. My a scrapbook page of Grace.
4. Put boxes of maternity clothes in storage.
5. Take things to the D.I.

Five of my favorite snacks/foods:
1. Apple Juice
2. Lasagna!
3. Neilsen's Frozen Custard Raspberry Brownie Concrete. mmmmm.
4. Salad, with everything on it!
5. Jalapeno Poppers

Five things I would do if I was a billionaire:
1. Buy Grace a new heart. :) And Donate millions to engineering new hearts for thousands of babies.
2. Buy a house in the Southern Avenues, on this street that Topher and I adore. It has trees that canopy the entire street, and old style lamp posts every two houses down. They're old classic beautiful houses. Ooooh, and then I'd install a hot tub, and a sports court.
3. Buy a mini cooper for myself, a VW soft top 23 window van for Topher, and a yellow mustang for my mom :)
4. Go to Cosmetology School, and another University to get a degree in Child Psychology or Elementary Education.
5. Travel with Topher, Grace, my siblings and parents everywhere: Disney World, a Cruise, Europe, Australia...EVERYWHERE
wow...that question really made me with I was filthy rich!! haha

Five bad habits:
1. Biting my nails
2. Surfing the internet for loooong periods of time
3. Procrastinating
4. Snacking incessantly on Nilla Cakesters. mmmm yum.
5. Leaving a trail of mess everywhere I go.

Five places I have lived:
1.Utah
2.California
3.Germany
4.Missourri
5.Virginia...i think.

Five people I tag:
1. Emily
2. Dacia
3. Jen
4. Karen, and Dad too...if he will
5. Alan
But I also want to tag a bunch of our heart friends...I think it's good to do fun things like 'tags' every once and a while. To get your mind out of the hospital grind!!

Random Thoughts...

Not too much has happened in the past few days, but I had a minute so I thought maybe it'd be a good idea to post in case things get crazy in the near future. :)

We took Grace to the Zoo yesterday with her Grandma Karen and "Auntie" Rachel. I think she enjoyed it SO much that she slept through over 3/4 of the afternoon outing. But hey, that's ok. She was adorable and so much fun to cuddle.

Lately when Topher and I have taken Grace places, we have found ourselves having a mixture of emotions. Glad that we have her and that we're helping her experience as many things as we can while she's here, and sad, because she won't remember them, and because these might be the only few memories she has here on this Earth. It's so hard to look at other families with their little kids who are healthy toddlers, running around and causing havoc. That might sound silly, but I hope and pray so much that Gracey will be able to grow up a little and cause some havoc of her own. It makes my heart sick to think that she might not.

The Zoo yesterday held similar emotions. I want to have her in my arms as a little toddler, pointing out the animals to me and oooing and aaahing.

We had another Dr. appointment today. Her saturations are still holding in the high 70's, which is great. Her Echo looked good and she's growing well. Again we had a bittersweet moment, when we learned that one of Grace's heart friends is getting his transplant this evening. They were sort of 'bunk mates', if you will, being born within 2 days of each other, always being a few rooms away from each other, moving from NICU to PICU to the 3rd Floor all within days of eachother, and with identical heart defects. I was so thrilled and happy to hear that he was receiving his new heart that will save his dear little life, but also I was so deeply saddened because it seemed to me it could have so easily been little Grace's. The news made me immediately break into tears, but at the same time I was so happy to hear the good news.

*sigh*

So many emotions that I don't want to deal with or have, but they're right there in front of us.

Please pray for this little heart friend of Grace's, that he will be strong through his procedure and that all will go perfectly. He and his sweet familiy so dearly deserve the very best that can be given. I pray that all will go well and that this really will be a huge turning point in his life.

We love you all and just wanted to give an update. Grace is doing well. She is beautiful, sweet and spunky, (she proves this to the Nurse's every week that try to draw her blood for labs :) )

Thank you for your prayers and support!! And I apologize if this blog was at all depressing, I'm used to posting for my sisters and immediate family, who are used to listening to me whine!! :) I truly am happy, and do indeed feel blessed. We have witnessed a miracle just in the birth and life of Grace thus far. She is wonderful and strengthens my faith every day.

Thanks again!

love, the Andersen's

Highly Requested Pictures...Just for you Emily!!!

Well, it's been a little while since we last posted and not much has been happening around here. Grace has been doing well since her Catheter procedure, Topher is still working at school and I'm still training for my Triathlon, (which is getting closer and closer!!). Other than that, there's nothing really new to report. Which is a good thing in my opinion, because it means that we've been living as normally as we can. Grace is doing great and that's all we could possibly want. :) We finally got a new camera charger and have since gone crazy taking pictures. And it's a good thing we got it when we did, because Grace has blossomed over the last few weeks. She smiles all the time and they aren't just fleeting little blips across her face- they are big, apple cheeked, squinty eye, open mouth smiles- and they're to die for!!
What baby can be happy in her car seat??? Not normally Grace, that's for sure. But on this occasion, she was all smiles. Flashing smile after smile at her Daddy to melt his already big soft heart.

These are probably my favorite pictures recently. We have about 20, if not more, of her sitting in her swing, holding tight onto her bunny and just grinning from ear to ear. She's SO ADORABLE!!!

For the past 2 nights IN A ROW...Grace has been waking up in the morning with NO TUBE IN HER NOSE!!! What a stinker huh? She thinks that when Mommy and Daddy are sleeping is the perfect time to yank her tube out, because we won't figure it out til' morning. *sigh*. But, this did give us another opportunity to get some pictures of her little face, tube free!! We also took her to church with no tube yesterday. It was crazy!! We felt like we had a totally normal baby! No one would ever guess she was sick!!

Isn't this such a cute outfit?!! It's from Karen. Rachel wore it as well, in fact, she probably still fits in it. ;)

Although it is indeed a very cute outfit, Topher and I don't really think it looks like her personality. Too Polyanna or something. ;)

Look at those big beautiful eyes!!! She seems to have the most innocent little face, you'd never guess there was such a sassy demeanor underneath!!

Grace also loves to take showers with us. Normally, getting her out is the worst part because she gets really angry, but again she surprised us and had lots of smiles for us. It was cute because she kept stretching her arms up into the little head pocket, and pulling the towel over her face, then she'd freak out until we pulled it off again.

For the 4th we went to my Dad's house in Eagle Mountain. We had a "barbecue" inside, on the Foreman...lol. We played games, had pie, went running and biking, and took over 300 pictures of Grace. hehe. These are some of the best ones we got because she wouldn't hold still!! All the ones where she had a big grin on her face were blurry because she'd get excited and bobble her head all over the place!!

Don't you love her outfit?!! I actually bought it for the 4th of July back in May. I have been so excited to put it on her and have shown it to anyone that would look...and, drum roll please, I made her bow. I personally thought it matched perfectly.

Also, because I'm a complete dork, I insisted that Topher and I wear red, white and blue, to match Grace. I really wanted a picture of all of us in our Patriotic clothes, and of course I forgot until AFTER I went biking. Seriously, sometimes I don't think I'm so smart. So, for pictures I was hot and sweaty, and my hair was flat and sticky. But oh well. It's the most recent picture of the 3 of us, and hey, at least she's smiling. And my husband looks dang cute too. :)

So, there you have it. Our recent antics. Life has been good. Grace has been adorable. All is well. Again we feel amazingly blessed. No one knows better how to care for us than our loving Father in Heaven, and he makes this evident time and time again. We are so grateful for our families, friends, and ward members that try their best to make each day a little easier. Thank you thank you thank you!!!

Please continue to pray for little Grace that she will be as healthy as possible, and that she might get a transplant soon, or if not, that she'll be able to have as healthy a heart as she can. I know it's hard to pray for a transplant, I rarely do, because I can't stand the implications of what that means. But, I feel there is nothing wrong with praying that she get a healthy heart, by whatever means Heavenly Father deems right, whether it be surgery or Transplant.

Please also if you could pray for the other heart babies, some of them are going through very hard times. A "heart family" friend just lost their little girl, and I'm sure they could use all the prayers they can get, her name is Eden, and she was and still is a dear sweet angel. Please pray for her family.

We love you all and hope everything is well with all of you!!

Love the Andersen's