All is Well!!

Starting near Midnight yesterday we definitely had a looong day. That is when our alarm went off to stop Grace's feed, and try to get her to take some milk by bottle. Our alarm rang again at 3:45am to try and fill her up on some Pedialyte. And then again at 5:00am to get us up, ready and out the door by 5:30.
Given the circumstances however, Grace was an angel. She didn't wake up every 10 minutes through the night for a binky, in fact she slept through the whole night, except for the 3x we had to actually wake her and try to feed her.
We figured the 'no food rule' after 4:30a.m. would be ok, because she was the first Catheter appt. of the day, bright and early at 6, so she wouldn't be hungry. But, we had forgotten that hospitals are never on time. So, we waited around from one room to another until they finally took her back to Anesthesia and the Cath Lab around 8:00!!
By that point, Grace was definitely hungry and quite fussy. *sigh*
Going to the operating area where parents had to watch their kids walked away by a nurse, or had to pry their little fingers off their legs, then watching the little kids start to cry for their mom's and the parents reassuring them, "I'll see in you just a minute-don't be scared", was probably one of the hardest things for me to see. It made me so grateful that Grace can't yet distinguish quite who is holding her or what is going on. She can't cry to me to please stay with her and I don't have to watch the fear on her face as someone else carries her away. I really hope I never have to do that, that her surgeries will all be done before that recognition has appeared on her face. It was definitely a humbling experience, and one that made me grateful for her falling asleep just before we had to hand her to someone else. She never even knew she was being passed around, she just kept peacefully sleeping. What a blessing!
They told us to expect around 3 hours, gave us a beeper and shut the door to the operating area.
We tried hard to entertain ourselves, we didn't want to wait in the parent waiting area, too many people that are uptight and nervous to hear back of their results, and Topher and I didn't want to feel all those emotions flooding the room.
So, we had breakfast in the cafeteria, it was funny because it felt so normal to be back in the hospital, eating in the cafeteria. It almost felt like we were back in our 2nd home or something. Walking past the PICU just made us remember how long we really were there. It was crazy to think it was only a Month and a half ago, because it felt like we'd had Grace home with us forever.
After eating at the cafeteria, we wandered around aimlessly, eventually found the College of Nursing Gift shop and spent way too much money on books, books and more books for Grace!! We also bought her a mini stuffed animal that is actually a 'White Blood Cell'. LOL!!! We figured it would help protect her against diseases and such, since that is going to be her biggest battle through the rest of her life. ;)
Way too much money later, we got the page saying they were done on Grace. We ran back to the Cath Lab and met Dr. Gray, waiting to tell us how everything went.
He said everything looked great, there weren't any unexpected surprises. They were able to balloon open her Atrial Septum, and it increased her Saturations by about 10%. They also said that because of the placement of her first two stents, that there was a slight gradient, causing less blood to flow through and up to her heart, brain, and arms. He said that if she doesn't get a Transplant soon, the next thing that will have to be done is another Cath Lab to place another stent.
Some good news, was that he looked closely at her heart, watched the blood flow and efficiency of the Tricuspid Valve, and said that even though it is still leaking, its not near as bad as they had feared, and that if she started to get sick, and still hadn't received a Trasnplant, he felt confident in saying he would be optimistic about continuing on with the initial surgeries.
That was nice to hear, because at least we know that we have a back up plan, in case the Transplant is unsuccessful.
We were able to go upstairs and see her about 45 minutes later. She still wasn't quite herself, her cries weren't her usual spunky wails, but instead were high pitched little whimpers. Very heartbreaking to hear!! We fed her some Glucose Water, and then she fell fast asleep against Daddy's chest, mouth open, drooling and everything!
Later she had an Echo to see her heart function and see the improvement the balloon had enabled.
After her lengthy echo, we were headed back upstairs for the Nurses to monitor her for another couple of hours.
They let us feed her some milk, and she tolerated it really well.
Something I forgot to mention, is that I have NEVER heard Grace SO SO gassy!! Not ever!! She was farting up a storm!! Even the Nurses were stunned that she was so gassy! After we fed her, she also had to burp constantly for about 30 minutes!! I don't know how she got so much air in her little tummy!! But she did, and even until late last night she was still really gassy and needing a good 20 minutes to get burps out!! So crazy!! Not to mention stinky, we kept checking her diaper because she stunk so bad, but it was just gas!
Anyway, she's home now, and luckily she was exhausted, because Topher and I sure were and we needed some sleep too. I think I passed out on the bed around 7:30, and didn't wake up again until 11:00pm to get her feed ready. Then Topher and I both crashed around midnight, and it is now 10:00 a.m. and Topher is still asleep...as is Gracey. :)
Thank you for all your prayers. I know they were all heard and answered because yesterday couldn't have gone better. Grace was an angel and so tough and strong. We had energy to get us through everything that was necessary and then we were all able to just sleep.
Thank you again for all your support and prayers in our behalf. We couldn't survive with our sanity in tact without them!!
Love you all,
Buggy, Topher and Grace

Cath Day

So tomorrow we go in for Gracey's Cath Lab appointment.  Starting at midnight tonight, she can't have anymore milk, and after 4a.m. she can't even have water anymore.  Luckily we're the first appointment of the day, bright and early and 6 a.m.  And if all goes well, no complications, she'll only have to be in recovery for 4-6 hours and we can come back home!!

Pray that all goes well!! Please!!!

We don't want her to have to spend a night in the hospital!! Its too wonderful having her home and we are too selfish and have been too blessed to revert back to hospital stays just yet!! :)

Anyway...today Gracey had a GREAT day.  She woke up at 11, smiling and happy.  Then we drove to Liberty Park to meet up with Karen and Rachel, (my Dad's wife and my little half sister).  We had a fun picnic and Grace was more than content being held on Karen's lap for a good hour.  Then she took a nap in my Snugli while we walked around the fun little "7 Canyons Fountain".  The weather wasn't too hot, there was a nice breeze, I took my shoes off and walked all over the fountains while she just snuggled on me and napped.  Topher met up with us as well and we just had a fun afternoon safe in the sun. :)

She's eaten well, slept well.  I couldn't ask for more. 

Also, her Great Aunt Amy got to meet her today and hold her.  We were so glad because Amy has kind of been Gracey's biggest fan ever!! The first to comment on our blogs, even if they were posted at 2 in the morning!! She has been so generous and concerned, not to mention prayerful and supportive in our behalf at all times!! Thanks Amy! Gracey loved you holding her!

Thanks everyone so much for your prayers on our behalf.  We feel so blessed and lucky that Grace is doing so well.  She is so blessed and as healthy as can be (given the circumstances).  We love her and are so so grateful for every day we are blessed with her and her sweet spirit. 

If you remember, please please pray for some of the other little heart babies.  Some of them are trying so hard to get through some big hurdles, and need all the prayers they can get!!

Love you all!! Thanks for your prayers!

Dr. Appt.

Again I feel very blessed and like heavenly Father is always looking out for me. Last night I came down with a fever, and then I had it even worse this morning. I had to take Grace in for her weekly Echo and it took everything I had at the time, (and Topher) to get me out of bed, into the car and at the appt. I then had to go home, without Topher, and was going to be home with Grace for another 5 hours by myself. I cried on the way home from the Hospital because I didn't know how I was going to manage to take care of Grace when I couldn't even lift her without getting light headed. Lo and behold, Heavenly Father was watching my every move, and as soon as we got home at 11:30, Grace went to sleep and did not wake up again until 3:00. At which time she proceeded to give me smile after smile after smile. I didn't have to hold her and risk getting her sick, the entire time we were home, and by the time I had to pick Topher up from school with her, my fever had broken.
This may seem silly, but I felt very blessed to have everything work out for the best under the given circumstances!!
On a different note, at her appt. today it was determined that her Saturation Levels are steadily declining and a Cath Lab to balloon open her Atrial Septum was going to be needed.
So, they've scheduled us for Thursday, and hopefully if all goes well she won't even have to stay the night in the hospital.
Even though the Cath Lab is not an actual surgery, and it is much lower risk than her previous surgery, it is still something that comes with its own risks. Please pray that she'll do well through the procedure and that it will result in her being healthier and more comfortable.
Love you all and hope you're all doing well!
love the Andersens

okay okay...

I realize it's been a while since we last posted, but I have to say that I don't like posting without pictures...and when you lose your camera charger, that makes pictures not very possible.

Sorry. Anywho...on the note of how our little Gracey is doing...she's doing great!! I guess no news is good news!

She has been steadily gaining weight each week. Last Thursday at her appt. she was 9lbs. 14 oz. So almost 10 lbs. She is still in the low 10th percentile, but hey, look at her parents, what were you expecting??

Also at her last appointment they noticed that her sats had declined to mid/low 70s instead of mid/high 80s. So, they told us to keep an extra close watch on her sats because they may need to do another cath lab in the near future to balloon open part of heart. This is being caused by the fact that Grace is growing out of the Pulmonary Artery bands that were placed in her first surgery, thus restricting how much blood gets to her lungs and back into her heart.

Hopefully this procedure won't be necessary, but if it is, we can get through it, and we'll be especially comforted in knowing that its not another heart surgery, its just the Cath Lab, which is not fun, but much less frightening than heart surgery.

So that's all the medical updates I have.

However, some fun personal updates on Grace is that her personality is really starting to come out. She smiles a lot more now and is finally starting to trust us enough that she doesn't scream every time we move her anymore. She still loves to be held and cuddled and once she wakes up at 7am she expects to be put in bed with us before she'll go back to sleep. She sleeps really well, eats really well and we feel EXTREMELY blessed for it.

She is such an angel and we're only more in love with her every single day.

A note on Alysia and Topher, we're doing great. Topher is going to school, just one class for Summer Semester. He's still in the Navy, however that doesn't require much...in fact, in requires nothing but going to school for another 2 -1/2 years. So, he is doing great just being able to focus on school and family.

I am trying to get back in shape after baby, and so I'm currently training to do a Triathlon!! (Note: a SPRINT Triathlon-a little over half the olympic distances) Siblings, you can now laugh, like I know you already are. But! I am excited and am mainly doing it to try and get in shape, and hopefully somewhere in there have fun. Yesterday was my first time trying out my new Training Schedule, running kicks my butt, but something I never thought I'd have a hard time with was the bike!! Topher bought me a new bike, a very nice Triathlon road bike. Holy cow!! Those things are IMPOSSIBLE to ride. I crashed. Bad. And it hurt. I have cuts and bruises all along my left side. :( But I'll get better at it!! I hope. ;)

Anyway...that's us. We're doing well and feeling EXTREMELY blessed that Grace is doing so well. That's not to say it's easy having her, I think we're definitely being stretched to our personal abilities, but let's just say I'm grateful Heavenly Father doesn't find me competent to handle more stress and trials than we already are.

We love you all and are grateful for your continued prayers and support of us.

Please if you could, keep the other little heart babies in your prayers, they all have their own difficulties and trials and could use all the prayers they can get.

Love the Andersens

(p.s. sorry for the bad picture quality...they're off my phone!!)

(oh, oh, and Mommy!!! I MADE that head band!!! aren't you proud?!!)

New Achievements!

Today was a special day, because today was Grace's first time in church! Now, we realize that some of you may think it was dumb of us to go to church...but, take comfort in knowing that Topher and I are not completely dense. ;) We prayed about it and both felt really good about the decision.
That being said, we only took her to Sacrament Meeting, we kept her in her stroller, didn't let anyone touch her, and left very shortly after the meeting was over.
She was SO wonderful for the entire thing!! She never uttered so much as a whimper. In fact, she slept through most of it and for the parts she was awake, she contentedly sucked on her binky.
A few people like my relief society president and visiting teachers came over afterwards and admired her from a distance, everyone was ofcourse smitten with her!! ;) But it truly was a such a wonderful experience to have us in church TOGETHER. Topher and I haven't been very good at making it by ourselves since she's come home and we had felt like we'd been spiritually starving. Hearing the testimonies of our fellow ward members was just what we needed to get us through another week.
Also, a new development, Grace has started smiling! The Pediatrician was actually worried about her at our last appointment because she wasn't ever smiling at us!! But then, about two days later, she started smiling a LOT more frequently. Now, I'm not saying she's the happiest baby now, cuz she definitely still scowls more than smiles, but those few extra smiles every day are so wonderful and make every difficult moment with her so very worth it!
I also want to bear my testimony, even if only for me, that I am so grateful for this gospel. The lyrics to a special Primary song have stuck in my mind the past few days and express how I have felt:

"Whenever I hear the song of a bird, or look at the blue, blue sky...
Whenever I feel the rain on my face or the wind as it rushes by...
Whenever I touch a velvet rose, or walk by a lilac tree, I'm glad that I live in this beautiful world...Heavenly Father created for me.
He gave me my eyes, that I might see the color of butterfly wings. He gave me my ears that I might hear the magical sound of things. He gave me my life, my mind my heart, I thank him reverently. For all his creations of which I'm a part. Yes, I know Heavenly Father loves me."

I am so grateful for everything he has given me and everything he has blessed me with. I'm so grateful for the knowledge that his hand is in all things and that he is constantly keeping a fervent watch over me, my loved ones and especially my little Grace. I feel so blessed to have her in my life. I never realized such love was possible, and it is only more overwhelming to imagine the love my Father in Heaven has for her. I'm so grateful for the time I have been blessed to have with her and pray that I will continue to be grateful for every extra day.
I'm thankful for each cry she utters, becaue she is able to feel happiness and pain and express each one. I'm grateful for each feed, each diaper, because I get to be the one serving her instead of relying on a nurse. I'm grateful for the recognition she has begun to show in her eyes when she looks at me and her Daddy. I'm grateful for each smile and anxious for many more. I'm grateful for her in every way. She is my sweet miracle.
And I am also so very grateful for each of you. For the part that you have played in comforting us and offering help in any way. I know Heavenly Father has worked his miracles through each of you and your prayers and fasting for us.
Thank you so very much for your faith and prayers in our behalf. We pray his blessings upon all of you for your love and support.
I hope you all have a wonderful Sunday and a wonderful new week.

Navy Family!!

Well, although this comes a little late...Topher did have his interview this past Tuesday in Washington D.C. with the Admiral of the Navy and he got the job!!
We are now a Navy family! That's right all of you!-be afraid because my husband is a big bad sailor!! (or at least...he can pretend he is now)
He is now considered a Full Time Nuclear Power Instructor at the Nuclear Power School in Charleston, South Carolina. We'll be finishing his two years of schooling to get his Bachelor's here in Salt Lake, but then once he graduates, we'll be moving to S.C.!! We are very nervous and excited but most of all we feel so so blessed. This couldn't be a more opportune time for this miracle to play into our lives. Heavenly Father is truly watching over us and blessing us with sure footing every step we take!
We are so excited for the adventure that this promises to be for the next 6 years!!
Congrats to Topher, he is amazing!! And a large Thank you to all of you that were praying and fasting for him the past few days!

It Was the Best of Times...It Was the Worst of Times...

The opening line from a Tale of Two Cities definitely depicts how life has been since Grace came home two weeks ago!!

On one hand it has been so wonderful to have her with us day in and day out, but on the other hand, nothing has ever been so challenging for either Topher or myself!

She is a lot of work, and sometimes is definitely quite the little pill, but along side her challenges she is a beautiful joy to have around. I love holding her, even though all she does is scowl at me! I love just looking at her beautiful face, and Topher and her seem to have an unbreakable committment in which they snuggle and nap together EVERY morning for at least 2 1/2 hours

Our days have been very random since she's come home. There are days where she'll sleep 7 hours through the night and then take 3 naps during the day. And then there are other days where she is awake every 45 minutes because her binky fell out and then she takes two 10 minute naps and screams the rest of the day.

Needless to say it has been an adventure, but definitely one worth every minute.

Since she has come home we've gone to Temple Square with my mom, (beautiful!!), Thanksgiving Point (also really pretty...), Anni's track meet, (congrats Anni on 4th and 5th places!), Toph's parents house, my Dad's house, and my sister's house. We get a little bit better at preparing for these outings each time they come around and hopefully we'll eventually be equipped with everything we need for her, each time we go out. (Last night...we discovered we need to carry around an extra feeding tube, because she now knows how to gag them up!)

Since she is two months old today, I thought I'd go over some funny moments, or milestones.

Yes, I realize this is becoming a lengthy post...but, that's what you get from a tired mom who only has this chance to blog on rare occasions, and the occasions being few and far between.

Grace is starting to hold her head up a lot and trying to look around.

She has started giving us 1-3 smiles each morning, (note that these immediately turn into sobs or scowls within a few seconds!!)

She thoroughly enjoys being held against your chest in the Moby wrap (thanks Karen!!)

She can now eat up to 57cc by mouth! (if you take a whole hour, burp her often and change her diaper)

She has gained a pound and a half since her birth, putting her at 8 lbs. 2 oz.

She has turned her Daddy into THE BEST Mr. Mom
She loves her swing

She loves to be bounced

She loves to be held

She HATES being moved or passed around or messed with in any way!!

She likes watching Animal Planet with Daddy

She likes to go for walks with Mommy

She likes being swaddled up nice and tight

She ADORES her binky (even when its taped to her face, thanks to Dad!!!)

She loves just plain breast milk. She will now eat over 45cc of straight breast milk by mouth.

She has accomplished to go through 5 outfits in one day, compliments of throwing up on each one within a 6 hour period

She has managed to steal the heart of everyone who meets her.

If you don't believe me, that's because you haven't met her. We've been told she's much cuter in person than in pictures. :)

On a more serious note, she has Cardiology appointments every Thursday. So far they have each lasted longer than 3 1/2 hours!! But, she has been doing remarkably well. No decline in her heart function or anything of that sort.

Also, we did her baby blessing last Monday. We apologize for not inviting all of our friends and family, but with Grace's condition we were too nervous to expose her to too much activity or to too many people.
It was a very quiet blessing, (Topher wouldn't speak up!!), but after collecting the different snippets that everyone heard, I have gathered that Topher blessed little Grace that she would have a healthy heart, whether it be transplant or on her own, and that she would live a long time. He blessed her that she would attend and excel in school and that she would bless the lives of those she met. He blessed her for a love of her familiy and a charitable spirit.

It was a beautiful day and she was an angel for the entire evening. Her Great Great Grandpa Max even got to hold her!!

Over the past few weeks and months, we have come to appreciate our families, friends, ward members and neighbors so so much. Thank you all SO much for your support of us over the last few months, weeks and days. Your frequent calls, visits, and offerings of support have been overwhelming. Venice has helped me at least once or twice a week since Grace has been home, worked for Topher several times and just tried to help in every way possible. My mom stayed with me probably close to 4 LONG weekends in a row, taking night shifts with Grace, cleaning my house and keeping me sane. My visiting teachers have brought us meals and goodies. My siblings stocked our freezer and cupboards to over-flowing amounts. Our immediate and extended family have brought us every baby item imaginable that they had in storage for us to use (esp. Emily, Karen and Kalani!! Thank you!). Some of you have brought us food, written us notes, or just called to express your love for us.
Thank you so much to all of you that have helped us physically, emotionally and spiritually, whether by bringing us dinner or saying constant prayers for us in your hearts. We know it has a made a world of difference and we don't know how we'll ever show our gratitude to all of you.

We love you all so much and are so grateful to you for your love and support.

Hopefully it won't be too long before we post again to let you all know how little Grace is growing up.

A bit of Relief

The X-Ray was clear! We went in to the pediatrician's office yestruday and they checked over grace, said that there was blood in her stool. They ran an x-ray however and said that her intestines looked good, so the dreaded NEC has not returned! yea! The blood though, seems to be from an intolerance to dairy? So no more ice cream for Alysia. The Doctors orders where to just wait and watch and hope that if we eliminate all dairy products the blood will go away.

Worries...

Well, we've been home for almost a full 48 hours and there are already some worries!! Although its been wonderful to have her home and she has been an ANGEL, we're probably going to have to take her to the hospital for a visit today. Yesterday she had a little bit of pink mucous in her diapers, and although it didn't look like blood...its been in 3 more of her diapers now and we're not sure what to do. She did have NEC, which was a really serious infection of her gut, and if she were to get it again we would definitely need to admit her back into the hospital, but the pink mucous in her diaper is the only sign we're seeing. She is still eating normally (normal for her anyway), and she doesn't have a fever or swollen belly or any of the other symptoms. So, we're of course concerned just because we don't know what it is, but hopefully there will be a perfectly normal reason behind it and she'll be able to stay at home with us.
She's doing so well and is so happy and content. It would be heartbreaking for all of us if she had to go back into the hospital and on antibiotics/off feeds.
Topher and his Dad gave her a blessing yesterday and it was really really neat. Topher blessed her with health and strength and that she would make it to a transplant. Hearing it from the mouth of my husband whose Priesthood I have absolute faith in, was definitely very comforting.
I have faith everything will fall into place as it should, and that she will get this transplant if it is God's will.
But it sure would be nice if she didn't keep us on our toes so much!!
Anyway, our appointment with the Pediatrician to check her out is today at 3:30. We'll post again after that with hopefully some reassuring news!
Love you all!
Thank you for your prayers and faith for little Grace.
Love Topher, Alysia and Grace

Its True!

We are indeed home. So far it's been overwhelming and wonderful!! Yes, there's a lot of information, yes there are quite a few meds and procedures to learn, but yes she is wonderful and we love her even more!!
We got home around 3, after leaving the hospital and taking half the room with us!, (Topher pretty much got the Nurse to give us one of everything, i.e. Avagard sanitizer, a pack of diapers, binkies, stethoscopes, thermometers, EVERYTHING!! LOL) She was completely passed out when we left the hospital, so when she woke up an hour later, her world was completely changed!!
After we got home it was a whirlwind of phone calls from the Pharmacy, Home Health Care and Praxair, all trying to arrange to come by our house with formula, medications, pumps, saturation monitors and the works.
So, the low down is 5 medications that we have to give her 2x a day, an Oximeter to measure her saturations, and we do that 5x a day. A pump to do her continuous feeds through her NG tube each night, which has to be changed 4x throughout the night, and lots of syringes and formula to supplement and help us with the rest of her feedings throughout the day.
It seems like a lot to us now, but I'm hoping it will become more routine for us.
Anyway...I'm exhausted, and want to go get a couple hours of sleep before we half to do another feed.
Just wanted to let you guys know how grateful we are for all of our many blessings! Especially the blessing of finally having our angel at home with us. She definitely seems more content and happy than I've ever seen her. I'm so glad she's home!! Oh, and Topher is too...he can't ever stop staring at her!!
We love her so much and are so grateful for everyone's prayers in our behalf!! Please keep em' comin!!
Love Alysia, Topher and Grace
p.s. I'll post some pics tomorrow when its not midnight