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!

Setback

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.

Miss Poopy Pants

Yesterday morning I called the Hospital and spoke to the nurse taking care of Grace. I told her that I realized the nurses didn't offer a lot of things to me, and so I knew I needed to be nosy, therefore, I took it upon myself to request permission to bring a little outfit and dress my little baby. The nurse paused for a minute or two and then said that she couldn't immediately think of any reason why not. "Good!!", I said. I immediately got to work washing her cutest outfits and then had the major dilemma of choosing my favorite. Don't ask me why, but for some reason, I thought one outfit would be enough. So I got to the hospital, to find that as usual Grace was being a handful (in case you haven't heard, she is uber feisty and almost always throwing temper tantrums unless she's on morphine). I proceeded to try and calm her down and then I changed her diaper. For the SECOND TIME, she tried to poop on me while I changed her. Stinker. Afterwards, I went to work putting her little outfit on her. She looked adorable!! I even did her hair and put a cute pink bow in that matched her outfit.

I picked her up and settled into the rocking chair, talking and singing to her, only to soon realize that she was filling her pants. She was tooting up a storm in there!!! Then I felt it, the blanket was wet too. I lifted her up, and she had pooped through her brand new outfit!! I changed her diaper AGAIN, only to see that no poop made it into the diaper, it all got on her outfit instead!!

Later that night, Topher and I went back to see her together. Topher held her for a while, and then I held her. Topher handed her to me and about 10 minutes later I felt that the blanket was really damp. I wondered if maybe she was really sweaty or something, and then I smelt that no, it wasn't sweat. She had peed on me. What a little stinker!!

So, she has no tried to poop on me twice, pooped through her cute clothes once, and peed on me once!! I think she's trying to tell me something!!

On top of that, the nurses say that she pees or poops through her sheets at least once a day every day.

It's a good thing that they need her to be going to the bathroom alot and so its taken as good news that she's so active, otherwise I might be a little put

out!

Post #2 Grace Woos her Grandmas...(er, Grandma and Oma)

After I held my little one, I decided that maybe I could share. Since my mom has been so wonderful and had been staying with me for a whole week she was up with me at the hospital when I got to hold Grace again. Once I had held her for probably a good hour, I figured maybe her Oma would like to do the same. I asked Mom if she'd like to hold her grand daughter and of course she was her polite, modest self, "No, no, that's ok, you need to hold her. You hold her". To which I responded "I know you want to hold her just hold her dang it". Lol. So she was convinced.

The next day, Venice came and was NOT as secretive of her desire to hold the baby. Lol. She knew exactly what she was there at the hospital for and wanted to hold her grand daughter darn it. Just kidding, :-). But she definitely knew without a doubt that she wanted to hold her grand daughter, no convincing necessary.

And of course, Grace swept both her Oma and her Grandma off their feet. They're both smitten with her. But then again, who isn't. hehe jk. sort of.

Long Awaited Post #1

So...we are very behind in postings...so there will probably be quite a few today.

#1 of most importance is of course that I, Buggy finally got over my stinkin' fever and was able to go hold my baby! As it turns out, I got a breast infection called Mastitis and that causes fever and flu like symptoms. I had to get on some antibiotics to clear up the infection, but they're still "clogged" so to speak so I am still in a lot a lot of pain and hardly producing ANY MILK at all. But maybe its for the better seeing as how our freezer probably couldn't hold any more milk if it tried.

Back to the matter at hand of holding Grace, after holding her several times now, it has been determined by me, Buggy, that Grace likes her Daddy a lot better than her mommy. She's only happy with me holding her if she's on morphine. Little punk. Good thing she's so cute and I love her Daddy, otherwise I might be jealous.