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.



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


The word is that we're going home today...but who knows until they're actually sending us out the door right?
They've been talking about today being the day for the last 5 days now...so I really hope it sticks this time.
She has to have an Echocardiogram and an EKG before they'll give us the ok or not. So hopefully both of those come back positively.
I am so nervous to think of having her home 24/7, but at the same time I am so ready for her full time as well! I know...very contradicting...but that's how I feel.
I just need to go to the hospital and place the NG tube, :( which I am not so excited for, but if I can do it, then on our end, she'll be clear to come home with us!
We'll also be finding out for sure if we can be taking her out places or if we need to be more confined to the house and such. We of course want lots of people to meet her and enjoy her as much as we do...but her health is so fragile, we can't risk getting her sick and ending up in the hospital again.
We feel so blessed that all has gone so well thus far. She has been able to meet every goal they've set for her, and remain relatively happy and content. She hasn't had any major problems or setbacks, at least not in comparison to other little babies, and she has been able to stay remarkably stable. We're so grateful for her determined spirit and feisty temperament. We know that they've helped her and us get through all this up to this point. We also know that so many of these blessing we've received have been thanks to the many prayers everyone is offering in our behalf. Thank you!
Thank you all for your continuing love, support and prayers in our behalf. Grace truly is a miracle to us and we're so grateful for every day she continues to bless us with her life. We hope everyone will get to enjoy and love her as much as we do, but don't be offended if we keep to ourselves for a little while, just to make sure all is well!
All our love
Alysia, Topher, & Grace


As a quick note...so no one thinks that we hate our doctors :-) ...we don't...they are wonderful, for the most part very helpful. We were just a bit upset becuase, as our nurse practitioner said grace had become a bit of an "oversight" this last week. We finally got upset enough (don't worry, we refrained from yelling or cussing ;-) for them to call a care confrence, and figure things out...grace has a goal of coming home this sunday...before that time we simply heard something completely diffrent everytime we talked to a doctor, while Grace never changed. So in short we really do love Primary Childrens, and our doctors. Especially the Nurses, and Technicians that we see every day!