Pictures...and stuff

My amazingly talented brother (also an aspiring photographer) came to the hospital last week and took some really really neat pictures of little Grace. You should check them out, because they look wonderful and, hey, who can get enough of Grace ya know? So, his blog is linked on my page, its the Alan J Photo link. You should check them out, they're mighty cute!!
Oh, and the reason topher and I haven't updated in a while is because we've both been too fuming angry to do so. Let's just say I hate hospitals. In particular, the hospital Grace is at, because they are dumb, won't communicate with each other or us, and seem to want to keep Grace forever!!!
As you can tell, I'm still a LITTLE/LOT angry...so I'm gonna wait a couple more days to calm down, and then I'll give some more updates. :)
Please, please, please, continue to pray that she progresses, and, more importantly, that her dumb Doctors SEE her progression and let us take her home.
Alysia, Topher and Grace


Old pictures...

Here are the pictures I promised of her without any tubes on her face. Go figure, the day after i took these, they put a feeding tube back in her nose. But oh well!! At least I got a couple pictures tube free!!

Does she or does she not have THEE cutest nose ever!!? If you don't agree...I dont need you to tell me so. ;)
In this last picture, she has her feeding tube back in, but I just wanted to show her Opa Sam holding her. He definitely has the magic touch. She loved snuggling with Sam!


Murphy's Law

Go figure that this afternoon Topher and I were talking about how lucky we felt that Grace was doing so remarkably well. I even said to him "doesn't it make you worry something bad is coming because she's doing so great?" Well, long story short, Topher and I spent the night here in Grace's new private room and were so excited to get to be here with her and feed her and put her to sleep and the works. But, Grace had something else in mind for us: the worst night ever!! I have never heard her cry so loud, for so long in her entire short little life!! She wouldn't eat, wouldn't sleep and constantly was screaming her little head off. I started to get really worried when 3 feeds had gone by now and she hadn't even finished half of any of them before she would start screaming like she was in pain. Topher and I tried rocking her, singing to her, swaddling her, changing her diaper, 3 different kinds of binkies and still nothing worked at all!! The only time she was calm was between 3:00 and 6:30 a.m. while I was holding her on my chest and rocking, but even then she wouldn't go to sleep and the HAD to have a binky replaced in her mouth every 15 seconds.
Anyways...it has honestly been an awful night. I haven't slept for even 30 minutes...Topher is also exhausted and little Grace is just having a rotten night.
I finally told the nurse that I knew something was not right and that I wanted her to have an x-ray done just to make sure the NEC wasn't coming back.
One of the Dr.s came in and decided to stop her feeds until after the x-ray results had come back positive. So, she had the x-ray, they just informed me it came back fine, so she just has a severe case of gas. :( They are giving her some drops that will hopefully relieve this and make her a little more up to eating.
Please pray that it really is just gas and that the meds they give her will help her feel better and be able to continue progressing with her feeds. She should've been up to 34cc each time by now, but because she hasn't been able to finish 3 feeds in a row she's still at 30. :( Topher gave her a Father's Blessing and I'm sure it helped, but she can still use all the prayers she can get.
Thanks everyone!
Love alysia, topher and grace


Guess Where WE are?!!!

No...not home...but, they did move us to the floor!! Yes, we are now on the 3rd floor in our own big room. It has a couch to fold into a bed, a bathroom with a shower, TV, DVD Player, VCR, big comfy chair to sit in...we can have food in here, we can have our phones on. Its so wonderful!! But, of course, there also isn't a one on one nurse...we are soon going to become her one on one nurses! Crazy, I know.
But this is definitely a very big step for Grace and we are so happy and proud of her! She also is doing wonderfully with her feeds. At first they were only increasing them 1cc a day, then it was 2cc a day, now its 2cc 4x a day. This is great news and she is handling all her feeds really well.
Not to count our chickens before they hatch...but, they did say she should be up to full feeds in about 3 days, after which she would only stay here another day or two and then we would be home bound!
Its so scary to think of actually taking her home!! But also so exciting. I can't wait to be with my little girl for the full 24 hours in each day rather than just a couple hours a day. Topher and I absolutely adore her and are so excited to devote 24-7 to her. :)
Well, I forgot the camera at home, so Topher and I are going to make a stop at home to get clothes, food, camera and such, and then we're going to sleep here the next couple days. I'll also post a blog of her new tube-free face!! She doesn't have a feeding tube in anymore, and she got off her oxygen two days ago as well. So no tubes up the nose anymore!! She does still have her PICC line in to give her all her meds, but no more tubes covering her pretty face.
Please continue to pray for her that she'll continue to progress with her feeds and that no infection will start. We have come such a long way in such a short time and feel so blessed that little Grace is doing so well. Thank you all for your prayers and continued support, they are working miracles every day!
Love Alysia, Topher and Grace.


here's some slightly sideways pictures...but she's still cute. We've had an alright day. Alan came and did some pictures for us, hopefully we'll have those up in a while for everyone to see.

When we came in this morning the doctor told us this would be our last day in the PICU. We were headed up to the floor! But...then...we're not...they came back about an hour later and told us that the cardiologists felt like it wasn't the best thing after all...so...still in the PICU. oh, well the one on one care is always good.
She continues to do well with the feedings. Not much else to report, she is doing well.


like father like daughter...

Only Topher's daughter could possibly eat and sleep at the same time.
I just had to let you all know that her past two feeds...have been in her sleep. But she chugs them down none the less. Chugs them down and keeps sleeping.
She literally has been completely passed out since about 11:30 this morning!! And I even blew raspberries on her stomach to try and get her a little bit awake for her feed. But no...she just layed there...and stretched her arms above her head and kept sleeping. Talk about determination!
I honestly wouldn't have tried so hard to wake her, but they are going to continue the bottle feeds and NOT do the NG tube feeds IF and only if she can finish her bottle in about 30 minutes. So we really needed her to wake up and eat!!
Anyway...she's adorable...even when she is unresponsive and sleepy. :)
Please pray for the other little heart babies! So many of them need extra prayers and support. Please esp. pray for little Gracie and Kaidence! Gracie is going into the O.R. for some work on her incision. And Kaidence has had a hard time with some ridiculous Doctors who may have compromised her heart. :( Pray for all the little babies though. They all need love and prayers. Thanks!
love Alysia, Topher and Grace

Bottle Feeding!!

I got here about two hours ago and at about 11:00 the Nurse said I could feed her a bottle!! Hallejuah!!

Funny thing:
She was sleeping when I sat down to feed her, but as soon as I popped the bottle in her mouth and she got a few drops, her eyes popped WIDE open and she sucked the bottle down in about 10 seconds!! Given it was only about 6cc, but she gulped it down so fast!!
It was really cute. As soon as it was gone she passed out and has been sleeping ever since. The nurses were very impressed that she didn't gag or anything but that she just gulped it down, no fuss no problems.
I am so grateful it went so well!! There are many more feeds to go, so pray that they go as well as the first.
Here's some pics of our girl on her 1 month birthday with her first bottle ever!!

Oh, and by the way, Jennifer and Alan came to visit and Jennifer got to hold the baby! (Alan did, too, but he had already gotten to before).

Food! Glorious Food!

Yes! Finally!! She is getting some food into her little belly again. After she developed NEC (the infection she had) they had to stop feeding her. She was administered an antibiotic and they said we wouldn't be able to start feeds again until 10 days later. Since it is a hospital and no hospital would be complete without it, we were told numerous times that she'd be fed before the 10 days were up, and we of course got our hopes up, and then of course, because its a hospital, they changed their mind and said, "just kidding, we're going to wait the LONGEST amount of time possible...". This is of course frustrating, but the 10 days are over now and she is finally getting some food. They're feeding her painfully slowly, but that's to make sure that she doesn't develop NEC again. Yesterday she got 1 cc an hour for the whole day, (That is 1/5 of a tsp!!!!). And today she'll start getting 2cc an hour. If she does well, they'll start bumping it up 1cc every 8-12 hrs. (Most likely 12...because they can :( ) Either way, I am just so so grateful that she is finally getting food. And the best part is that it is no longer being administered through an NJ tube like it was the first time. It's actually an NG tube this time!! So she can finally have the sensation of food in her tummy!!! That is such a relief, and lucky for her, her stomach is teeny...so maybe 2/5 of a tsp. does something for her. ;) She seems to be very content and happy. She also has been very alert as of late. She makes faces and smiles mostly when she's sleeping. But she truly is such a joy to be around. I try not to be at the hospital longer than about 3 hours each day, otherwise it drains me, but yesterday she was so adorable I was there for almost 7. *sigh* She already has her Daddy and me wrapped around her finger.

These are some pictures that I had meant to post when Topher got home last weekend. But, I never got around to it. She is wearing a little outfit that says "My Favorite Things" and then in little check boxes, it says "Daddy", "Hugs", "Kisses". Her Daddy truly is one of her favorite things ever.
Anyway...Please please please pray that she tolerates these feeds well. If she were to develop any signs of NEC again we would most likely be in the hospital for another month and a half to two months. So please pray that they go well and that she can digest them and keep them down! Thank you so much for your continued love, prayers, and support. We need them more than you know and appreciate them even more!
Love Alysia, Topher and Grace

p.s. Today is Grace's 1 Month Birthday...so I'll post some pics later today. :)


Just a Thought...

Topher and I have started going back and reading the Conference talks from this past Conference, and last night's was esp. neat.

We read the talk the President Monson gave in the Sunday morning session...and the last part of it really stuck out to both Topher and myself:

"Mortality is a time of testing, a time to prove ourselves worthy to
return the presence of our Heavenly Father. In order to be
tested, we must sometimes face challenges and difficulties. At times there
appears to be no light at the tunnel's end--no dawn to break the night's
darkness. We feel surrounded by the pain of broken hearts, the
disappointment of shattered dreams, and the despair of vanished hopes. We
join in uttering the biblical plea "Is there no balm in Gilead?" We are
inclined to view our own personal misfortunes through the distorted prism of
pessimism. We feel abandoned, heartbroken, alone. If you find
yourself in such a situation, I plead with you to turn to our Heavenly Father in
faith. He will lift you and guide you. He will not always take your
afflictions from you, but He will comfort and lead you with love through
whatever storm you face."

I think that was so good for us to read with each other. It renewed our faith, possibly which may have been slightly dwindling. As of late, we, (well, pretty much me, Alysia) have felt slightly frustrated. Frustrated that so many children and families, can be faced with such difficult trials. Frustrated that it seems sometimes as though we are never 'out of the woods'. There is always another problem around the corner, and I have found myself wondering, 'Isn't it enough yet'? 'Havent' we already gone through enough'? And I haven't felt this even so much regarding our situation, but more so looking at other families. It just doesn't seem fair that they are faced with problem after problem, and that as soon as all seems to be heading in the right direction, there is another bump in the road, another trial to overcome. And last night especially, I had my first feelings of resentment, where I was almost angry. Because it just doesn't seem fair for these sweet spirits to go through so much, only to have something else thrown at them each time they overcome their latest difficulty.

But, with a great sigh, I am realizing more fully that these are trials each little child and family has to go through. This is a trial Grace, and we as a little family, have to go through. And although we don't see the light at the end of the tunnel, and we don't know what the outcome will be, we know that Heavenly Father is watching over us, waiting to comfort us if we will but let him. We know that Heavenly Father will guide us through this "storm" and that we will someday, be able to look into his eyes, knowing that this trial was for our good, and that he never once left us alone. We just have to keep the faith. Knowing that all will be well, whether now or later, all will be for our good, and all will repair itself in the eternities.

Thanks for letting me vent for a little bit. And I hope that President Monson's thought was as helpful to you as it was to me. :)


Good Sunday

I realize I haven't posted in almost a week! (Amy, sorry, I'm probably killing you! ;) ) But I was just so excited when Topher finally came home, that I've been a little side tracked. His trip to S. Carolina did go really well by the way. Let's just pray that everything continues to fall in place for that opportunity. It really would solve so many problems and relieve a lot of worries if we could get into the program. So cross your fingers and pray for us that all goes well in that area!
The Sunday after Topher got home, we went up to the hospital and had about an hour and a half with Grace and she was absolutely adorable; awake, alert, making faces, and most of all, not screaming! It was a lot of fun to spend that time with her.
After about an hour and a half, Toph's family came up to see her and we decided to surprise his siblings by letting them hold her. Maybe not a huge deal to some of you, but I think they were pretty excited. And little Grace behaved beautifully the whole time! No temper tantrums!
Anni came in first, because we had heard that she was kind of the most eager to hold her new neice. They seemed to have some pretty good bonding time. :) Then came Austin, and Meg, and last but not least, Grandpa Andersen. Although he's held Grace before, we'd never been there to see it. My oh my, does Grace adore her Grandpa. She woke up and just stared at him almost the whole time he held her. She was mesmerized by him!

During our visit, Topher had held her, and both of them were quite sleepy. I was talking to the nurse, and kind of forgot about the two of them for a minute, and when I looked back at them a minute or two later, this is what I found...
Like Father like daughter I guess!

The rest of these pictures were just our visit with Grace. She looked too cute for us to not post them and let you see how adorable she is! She has gained a pound since she was born...which is quite amazing to me seeing as how she's being starved! But even with that extra pound she still seems teeny to hold.
She absolutely LOVES her binky. And Topher LOVES putting it in her mouth, even when she's not crying for it. *sigh* But it is good practice for her, and man oh man can she go to town on that thing. She's even learned how to hold it in all by her self.

While we were there Topher read her a story, and this was the first time he's read to her while she was wide awake. She was actually looking at the pictures and then looking at Topher. It was really cute. She would make little faces at him and it was very fun to watch.

I of course held her as well. And although I don't like when other people kiss her so much...I'm her mommy...so I decided I can kiss her as much as I want. hypocritical I know...but I can't help it.

We just thought these faces were too cute to pass up...

As for how Grace is doing...not much has changed. Today she is on her last day of Antibiotics, so they will start feeding her tomorrow, (Wednesday). She is definitely hungry, and also seems to have a natural instinct for nursing. Anytime Topher or I hold her, she turns toward us and starts shaking her head all over like she's trying to find something!! Topher informed her she wouldn't get much outta him. lol. He's a funny boy. Other than her being fed tomorrow, not much else exciting is happening.
They did however find a lump on her arm...? They're not sure what it is...whether its an infection, a leak of an i.v. or a bruise...They've had the I.V. team come look at it, they've done an ultrasound of it, and the Infectious Disease team came and looked at it...so far, everyone's been stumped.
So, pray that its NOT an infection! Because if it is, they'll have to cut it open and drain out the infection. And i REALLY don't like the idea of people cutting into her!!
Thank you all for your continued prayers and support. We really appreciate everyone's words of comfort and prayers in our behalf. Grace is definitely deserving of them!! And I know that they're helping her get a little bit stronger every day. Thanks again!
Love the Andersens


The many faces and expressions of Grace...

Yay!! No nasal cannula! She came off oxygen for a total of 8 hours...and then had to go back on. But that's ok. We'll do things at her pace and then hopefully she'll stay healthy and happy. But we definitely got some cute pictures during those 8 hours! She is so so beautiful and sweet. She did throw one temper tantrum while we visited her yesterday, but I got to do what mommies do best! I held and rocked her, and then I sang her to sleep. Topher said I had the magic mommy touch and asked me to start singing every time she started to squirm. I felt needed! It was so wonderful to feel like she actually needed me. Hopefully I'll get to have that feeling a lot more in the future, cuz it feels good!

She says "whatchu lookin at foo?" Of course, she got this attitude from her Uncle Alan and Aunt Dacia...fo sho
This picture series made me and Topher laugh so so hard. This was her when she couldn't decide if she was angry or not....she decided she was angry. very very angry.

So funny because she was looking at Topher for these pictures and her expression is completely like she is scared/worried. Topher must have a face that worries her a little. Or scares her...or both.

She looks like she's blowing bubbles in this one. Which, at the time, she was...along with drooling. But it looks like we maybe caught it sort of on camera!

Here's me holding her...and she's not even on morphine!! I actually sang to her until she calmed down and fell asleep.

We put her in her outfit from Auntie Em. She wore it for a whole day before she peed through it. :) Isn't she precious with her little bow and sweet face!!?

Aunt Dacia finally came to see her after almost 2 weeks of not visiting! Grace very much liked being held by her Aunt, but as soon as Grace fussed even a little "here, you take her, I don't want to make her sad!!" Daysh immediately tried to hand her back to me.

This is our very angry catepillar. It was actually really sad because we had been holding her and Topher got her to sleep. Then we decided we needed to head home, so we put her back on her little stand. As soon as we turned to leave, she started fussing and then started screaming her little head off. So we came back to calm her down. But it was definitely heart breaking to have her cry when we left...whether that was what started the crying or not, it was definitely much harder to leave.
But anyway...that's about all for now. Just wanted to post some pictures of my cutie. I'm actually up at the hospital right now and would be holding her but she is sleeping so so soundly I don't dare pick her up. She looks beautiful and peaceful and I am so crazy about her!
Topher has called me and has safely arrived in Charleston. He says the weather is beautiful, everything is green and there aren't any mountains! Although I'd miss the mountains, I definitely think I could like the rest. I'm getting more and more excited for when Topher and I get to live there in a couple years.
Thanks for reading and thanks for your prayers and support! Please keep them coming!! I want little Grace to do everything at her own little pace, but prayers to help things along are always appreciated!
Love the Andersens

Spoke too soon...

Well, yesterday they tried for the 4th day in a row to take her off oxygen, and it was successful!! or so we thought...She was off the oxygen from about noon until about 8:00p.m. at which point her sats went just a teeny bit lower than they wanted and so they put her back on. She is on the lowest setting there is, I think its .01 mL which is hardly anything! But that teeny dose seems to keep her sats exactly where they need to be. I'm glad Topher and I got to be with her for a good couple of hours with her oxygen cannula out and we got some cute pictures of her sweet face. It's a bummer she's back on oxygen, but, she's got lots of time to build up her strength and come off again. She seems to get a little stronger every day. Also, the antibiotics seem to be working because she has been much less irritable the past couple days. That's not to say she doesn't still cry and throw her mini temper tantrums, but they're much fewer and far between. She is a beauty and we love her so much.
On a different note, Topher left for S. Carolina today. :( He was flown out there V.I.P. style for a program with the Navy. We've been looking at the program for some time now and everything is starting to fall into place. This trip is going to be taking him on a tour of the facilities he would be working and teaching at, so cross your fingers that he enjoys himself and that all goes well. This program would be a life saver in many ways for us!
Also, cross your fingers that I stop crying about missing him so much already!! It's only 2 1/2 days and I'm already depressed!!
Thanks for all your prayers and support. We really appreciate them.
the andersens
p.s. as soon as Photoshop lets me edit my pictures, I will post some!


As a quick note and update.

There has been no big change in Grace's intestinal problem. They are now x-raying her stomach every 12 hours instead of every 6, so they seem a little less concerned about further infection or spreading of the infection. We just wait and watch now and hopefully it will clear up with out further intervention.
Grace also started a new medication yesterday because her heart function seemed to be slipping a little (haven't heard details from the cardiologist yet). The medication makes her heart squeeze a little harder and her vessels dilate slightly so that her blood moves more easily through her little body.
She also had a bit of an abnormal heart rhythm last night, but the nurse said that it was probably just a nutrition problem and would be resolved with a slight change in her IVs.
No other big news... thanks everyone for your prayers!



We just got a phone call from the hospital. Grace had blood in her stool today. This is of course worrisome so they did an X-ray of her stomach and found that her bowel wall is breaking down. Because of the normal bacteria that is in her bowels, they're worried an infection is starting and may spread to her blood stream. So, to begin with they have to stop feeding her, a huge setback considering she had just worked up to 8cc an hour of breast milk. They'll be putting her back on just vitamin/sugar water. Also, they're going to put her on an antibiotic to hopefully clean out the bacteria. Hopefully once the area is cleaned out she can start to get breast milk again. But, if it doesn't clear out as it is supposed to, they'll have to look at a surgery to cut away part of her bowels. This is not good news and is hard to hear after she had been doing so well.
Again we're reminded that things are simply not in our hands but in the Lord's. Please pray that she recovers quickly and that a surgery is not necessary. They're going to be doing an x-ray every 6 hours to keep up with if it is getting better or worse.
Pray that her little body repairs and that she can go back to feeding in 10 days once her antibiotics are done.
Thanks everyone.
the andersens

One more...

So...I figured that I posted all sorts of fun things to look at, but didn't really give an update to how our little one is actually doing.
She has started to be fed breast milk. She is getting fed through an NG tube that goes through her nose and into her small intestine. She started out only getting about 1cc every hour, (probably about a teaspoon) and they have been upping her dose every 8-12 hours. Last night when we saw her she was getting 8cc an hour. So she is definitely doing really well in that area. Although, eating, or the lack thereof, is what makes her so feisty. She is really really hungry, and I think she is more than ready to try and breast feed, but babies with heart problems sometimes have a problem with not getting enough blood flow to their intestines, and then if they're fed regularly, they can get a serious infection in their gut. In Grace's case, if she were to get an infection like this, it would make her temporarily unqualified to receive a transplant because she would be too sick to receive a heart. So they can only feed her through the tube until they're positive that her blood flow is adequate enough to get food by swallowing.
Also, she is still on oxygen. She is however down to 20% oxygen and still on the "hi-flow". The reason for these is that she breathes too quickly. The nose tubes puff more air into her nose, making her take deeper breaths. They're trying to wean her off this completely as well.
The last thing of note, is that in her recent echocardiogram, it showed that the left pulmonary artery band that they put in with the last surgery, is not quite tight enough. Because of this, she is getting a little too much blood to her lungs. Before she can come home, they will most likely have to go back in and tighten this, or instead balloon up the atrial septum. So, most likely, before she comes home, we're looking at another surgery of some sort. :( Definitely not what we were hoping for. But it could always be worse.
All in all, Grace really is doing well. Topher and I are just learning patience. A lot of patience. Each Dr. and nurse tells us something different, 'she's doing wonderful', 'they're worried about her bands', 'they need to balloon up her septum', 'they don't want to balloon up her septum', 'she could go home in a week', 'she might not go home at all'. Its a constant back and forth game of never really knowing what is going on. So Topher and I are trying very hard to content ourselves with the fact that it's on the Lord's timeline and little Grace's timeline. Not ours. Heavenly Father is taking care of everything and if she is meant to come home she will, and it won't be on our time, it will be on His.
Please please keep praying for Grace to progress. She is indeed doing well, but we are nowhere near the end of the road. Please pray for her to continue feeding well and pray that she'll be able to come off her oxygen. Please also pray that a decision will be made among all her Doctors, if they will balloon her septum open or tighten her PA bands or none of the above. Just pray. It strengthens us so much and we know it makes a huge difference for our daughter.
We love you all so much and are very grateful for everyone's love and support of us.
Please also, if you remember, pray for the other little babies in the PICU. There are so many sick babies, and so many babies that need prayers. One in particular is little Gracie Gledhill. She also has HLHS and is going through quite the trial.
Thanks again!
Love the Andersens

Pictures, Pictures and some more Pictures!

We finally uploaded all our pictures onto the computer. There are so many!! We have almost 2,000 pictures of her!!! Of course, many of these are so similar they could be the same picture because we would take 20 pictures within a minute, trying to catch her eyes open. But none the less, we have a lot pictures of her. So, we thought we would share some of the most recent ones.

Grace really likes to be bundled up nice and tight in her blankets, so this is our little caterpillar.

We really liked this picture of Topher and his mom adoring little Grace.

When she gets really feisty, she tries to pull her nasal tubes out, so her nurses accessorized her with some socks to keep those fingers from pulling on things.

We love her adorable little head band that our friend Christi from WA brought her. She looks so so cute in it. And we loved these pictures.

Topher started it. It's really really fun to make her little mouth talk to you. Like I said, Topher started it, but yes, I participated in the mean teasing of our daughter as well. She just looks so cute when she's telling you she loves you, (which is of course what she was saying!!)

She was on morphine for these. Trust me, she's not normally this cooperative. But we loved how wide awake and alert she was and are both absolutely in love with her little face.

We've come to decide that she has Alysia's nose, Topher's lips, possibly Alysia's eyes and face shape, Topher's chin and a LOT of Topher's mouth expressions.

This picture shows her chest really well. All the bandages have come off and she is healing really well. It is kind of weird when you notice the sutres coming out of her chest though. It's like she has fishing line stuck in there!

She loves being held by the way. So here she got to be held by her Uncle Alan. Alan might seem big and tough, but you could see that Grace easily melted his heart. :)

And here is her Daddy holding the love of his life, his little girl.