Jul 31, 2009

Check IT

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Mia is doing GREAT!!!

We went to her appointment and the word I kept hearing to describe Mia was FABULOUS. Her echo was FABULOUS, she looked FABULOUS, and her numbers for the most part were FABULOUS.

The most exciting part of the visit besides dropping off some m&m's with Mia's face on it to all of her nurses, was the fact that she gained weight! HALLELUJAH! That pretty much gives me the green light to keep doing what I'm doing with her feeds. The nutritionist gave me a list of high calorie foods to feed her. It's safe to say that I really like all the food on that list. Yesterday I put whipping cream in her bottle...mmmm...whipping cream! She LOVES avocados, and creamy soups.

Her potassium level was high and her white blood cells where still low, so we were able to drop another drug!!!

Now she is only on her rejection drugs and Dapsone! LIFE IS SO GREAT! I realize that I am over using exclamation points...apologies. We almost got rid of the Dapsone until the doc realized she needs it until twelve months post transplant and not 12 years old. So hopefully in November she will only have her anti-rejection medication.

When we left the hospital we met up with Katie and Maddie and Katie's momma who is GREAT! She made Mia a quilt when we were in the ICU- it is her cupcake quilt and we love it! Someday we are going to have a girls weekend and "nannie" is gonna watch all the heart girls while we go relax!! That will be a good day! For now we will keep meeting up on clinic day- it was great to see you guys...hopefully you survived the heat!

Mia's little owie is all healed up- and she is doing something different everyday it seems (besides falling on her face). Her newest hobby (one that I am not so crazy about) is hair pulling. She will be crawling in no time with the arm strength she has acquired from pulling on my hair. She pulls on Ellie's too, but it doesn't faze her in the slightest. Elvis doesn't feel pain and never has- it's bizarre.

She is now a three word baby, "mama", "dat" (dad), and "ba-ba" She's quite chatty and still the biggest flirt- especially with hospital personnel. The other day John said, "Mia is always looking for an excuse to smile!" It is so true. She really is ready to smile at just about anything. It's darling and I want to freeze her in time before we have to tickle her and work to get those smiles. She has received a lot of mail box love from many of her fans. Mia is so spoiled! I suppose she deserves it for now anyway :-) Thank you so much for the amazing gifts that have been sent to her for her birthday- We are so touched and so thankful!

Just curious if anyone has used this product before? The Germinator is one of the products in the BabyGanics line that I hear calling my name. It is Alcohol Free!!! They use Benzalkonium Chloride as the germ killing agent. Now that Mia wants her hands on EVERYTHING- I'm doing a little research. If you've tried this out or any of the household products let me know what you think.

Oh, and just to set the record straight--- I FLUSH THE TOILET! John likes to mess with me, and I guess that is what I get for giving him access to this blog. I did however veto his last "baby moma" post... he didn't know what that means. Bless his heart. It had to go- hopefully none of you read it before I found out he had posted it. Despite his anniversary post blunder he did do something super sweet for our anniversary. Pictures coming soon.

Jul 26, 2009

Backfire


I like to horse around with the kids, like all dads do. Mimi thinks I tow the line a little bit...it's possible the I haven't completely grown up myself I suppose. For quite some time Mimi has been telling me that some of my techniques will backfire on me. When I hollered to Jensen to fetch me a towel yesterday and he showed up with a small handtowel, I had to smile. I dried off with it and tried to be a good sport since he had done the same when I presented him with his handtowel the previous day. His little smirk on his face was priceless, payback. I actually get a kick out of it when he gets me back. On other occasions I am the recipiant of a very stealthy "wet-willy," oh and Jensen will lick his lips and give mimi a "wet kiss." The wet kiss is usually aimed at Mimi, which is nice becuase who wants to be supprised by a slobbery, cold and wet kiss.
The other night I was praying with the kids and Ellie had snuck behind me and snapped me with one of those kid flossers right on the back fat. You know the ones I am talking about, the plastic aligator flossers?? Well, they have perfected the snap technique. I have also been impressed with the kids teamwork skills. The other day Jensen came and distracted me (a decoy) so Ellie could launch an all out assault whilst I was anawares. It was impressive. Never have I been so bested by four and five year olds. There have been some habits that are undesireable though. When Mimi was gone staying with Mia at the Hospital, I let the kids sleep with me. Well, to be honest, I would scoop them up from their beds and put them in with me cuz it was kinda lonely. Now they think that they can come and go during the night as they please. I sleep very soundly, and enjoy a good snuggle so this is fine with me, but poor meems wakes up when a flee farts. I can sleep like a baby with Ellie crashed out directly on top of me, while Mimi can't sleep if you are touching her with your little toe. I think maybe the worst of all though is the bum smelling. You heard it right. It all started so innocently you see. I would pretend to be smelling a stinky diaper and yell, "Stinky!" and the kids would laugh and howl. Before you know it, the kids are sticking their nose right in everyones bum and filling their lungs while shouting how stinky it is. We have righted this problem, but every now and again there is a relapse and a bum is smelled. You can imagine how Mimi is a little miffed about this. But, I suppose I can attribute a few things to her. I think she can claim clogged toilets. There are a multitude of techniques that are employed to prevent successful flushage. Two techniques come to my mind as the most effective though. First, is to just unload insane amounts of toilet paper into the orrafice. The favored technique is to use the toilet multiple times without a single flush till dad gets home. This has proven to be a foolproof technique. It really is a good system, since dad can just make his plunging rounds each day after work. It's just part of life, like doing the dishes or taking the trash out.

Jul 25, 2009

Road Rash Baby

One bumbo chair + one air mattress + one sweet baby + the great outdoors = ROAD RASH

Mia's first unintentional Owie! Poor baby!

Jul 22, 2009

Special Delivery

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She's back at it again...

What did she deliver to six or so neighbors you ask?

Why, baggies full of gold fish of course.

What did she deliver to our neighbors that moved out a month ago?

See for yourself.

mmmm- tasty!!


I encourage her generosity, but a gallon of milk might be taking it too far. I knew I had one more gallon! I guess next time I'll ask the kids when something goes missing- chances are it is on the door step of our neighbors house. I wonder what she would have said had they been home.

Would it be too revealing if I told you that the gallon of milk is still there? I see it every time I walk home from the park and tell myself I am going to dispose of it when I put the baby down. he he (nervous laugh) - I will, tomorrow, er soon. The thought of what it will smell like is enough to keep me procrastinating.

I suppose since no one is living there it isn't harming anyone- just warding off potential buyers. We are on the official "you don't want this house" campaign. Because, hopefully soon our new neighbors will be the Eugenios! House warming gift perhaps? Lucky you! They have been waiting for their paperwork to go through for what seems like FOREVER!

Mark, Emily, Tanner- we really REALLY miss you guys! SYTYCD just isn't the same without you! The only silver lining of you moving clear across the country is having family members move in. Rest assured that Elvis is still ringing your doorbell and leaving you all sorts of loveliness on your front porch! You're probably glad you moved huh?

Anyone know any good ideas of what to do with ultra nasty milk? Hair treatment maybe? Plant fertilizer? There has to be something. or not. disposal it is!

Jul 15, 2009

Get Ready to SCROLL

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She's 1!!! She maybe toothless, and a tad on the not going anywhere anytime soon plan... BUT SHE'S 1! I am enamored by this baby... she is the happiest little thing!

The Birthday girl had a wonderful day. She slept in until 9, ate as much whipped topping as she wanted, decided not to nap, and celebrated her birthday with so many who love her.

It was the perfect party! I had been looking forward to this day for over a year. There is too much to say (so I'll spare you) about the emotion of the day...it was overwhelming.

A huge thank you to my parents, and to uncle Rye and Megan for taking pictures, to Beebs, Annalisa, and Laurie for all their help, and the decorating crew (those pesky polka dots), and to everyone who brought food- it was nummy num!

I couldn't be more pleased with her party- I loved it!!! I am sad that Mia's heart sister who was on her way had to turn back due to illness- we missed you Maddie and Katie, but 2 will be here before we know it.

There are a lot of pictures I didn't make happen, (like Mia with her heart buddy Luke) but here are some pictures that pretty much sum up the party.


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Birthday girl with her daddy and Grandma

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Birthday girl with her momma, "Nana", and "Papa"

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The party girls Ellie and Karissa-

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Birthday girl with her momma opening her gifts. She loved the tissue paper, and just wanted it in her mouth! She received many lovely gifts including a lot of books, (she loooves books) this one is from her heart buddy and cousin Gav.

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Three of the six sister in laws that were there, and the above mentioned Gav

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Getting ready for my birthday wish

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Not a big fan of a large group of people singing to me

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Ok, the singing stopped- now, I can dig in

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The older sister

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A little bottle action..still not taking enough while I'm awake.

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The last piece of the yummy cake

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The party Favors

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The passer-outer

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Wagon Rides


Thank you to everyone who came, and for the wonderful gifts! Also, thanks to our online friends who left her some birthday wishes.

Jul 10, 2009

It's never a good sign when the Dr. walks in


with a heart diagram.

Have you ever played the game "luckily/unluckily?" John's family introduced me to this game during one of the annual family camp outs.

Here goes:

I haven't been to see my heart doctor for a year and a half...

luckily we have insurance until the end of the month
unluckily I would need to be seen asap because those appointments get expensive
luckily I called the office and made an appointment
unluckily he was actually in town at his satellite office TODAY and now I would have to drive over to his main office.
luckily she had a cancellation, and asked if I could be there in five minutes
unluckily I was in my pj's
luckily I live really close and figured looking presentable could take a back seat
unluckily I left without eating anything and was starving
luckily when I got there I got to catch up with the nurse and forgot about my hunger
unluckily she told me I need to make an appointment for Elle too
luckily the doctor only needs to listen to her heart so I can take her next time I go
unluckily during my echo my stomach kept growling
luckily the tech was really friendly and told me all about his recent proposal to lovely fiance
unluckily he didn't speak loud enough to disguise my noisy belly
luckily I don't think he noticed
unluckily after my echo my cardiologist walked in with a HEART DIAGRAM
luckily he told me not to panic
unluckily he told me there was some bad news
luckily he started with the good news that the valves are doing great
unluckily the tissue around the native valve is dilating- it's called aortic root dilation
luckily I have a knack of laughing off bad news when it comes to my heart
unluckily it's not funny at all
luckily if I felt like crying it would have been fine because he is no stranger to me crying while looking at his infamous heart diagram.
unluckily he is the doctor that has to keep telling me things I don't want to hear
luckily he doesn't enjoy having bad news every time we meet
unluckily I had to have the following dialogue to understand what was going on...

Me: So.... what is the number that it could rupture?
Dr. 5.5-6.0
Me: So.... if it ruptures, then there is no recovering from that?
Dr. It's not like a heart attack
Me: So....if it ruptures I die?
Dr. Yeah

luckily it is not dilated enough to need surgery yet
unluckily it is only .4 away from needing surgery
luckily there have been huge advancements in this area with medication
unluckily it might not have a huge impact
luckily we are going to give it a try
unluckily I now have to take medication for the REST OF MY LIFE... sound familiar?
luckily it only costs $8!
unluckily I am not a medicine taker
luckily I've accepted (sell sort of) my heart problems and will do what it takes
unluckily I took my first pill at 2:00 and felt really dizzy
luckily I got to take a nap
unluckily I still felt ill after I woke up
luckily my body should get used to it...eventually
unluckily my heart is sick
luckily this family is made of stone
unluckily this family has been put through the ringer this year


That was my day today! A big fat Thumbs Down!!!

After I talked to my dad today he told me he has the same thing as a result of his Ross procedure. My dad, Mia, and I are all in the "zipper club." His nick name for me has always been "Joe." Today I am feeling a little more like Job, than Joe.

*pictures of big birthday coming soon...when I stop feeling dizzy :-)

Jul 6, 2009

The Count Down is ON!


I can't believe that in a few days my little Miss Mia will be 1!! WE MADE IT! I am busy busy planning her polka dot party, but I wanted to post an invitation to all of you to leave a comment if you have followed her story.

Some day I will print all of your comments and include them in her baby book- or at least a blurb. I want her to know all of the wonderful people that cared and prayed for her. Her introduction into this world was, well, a rough one. It would have been way more difficult without all of you. I promise this post won't be another "thank you" post, but knowing so many people cared about her really encouraged us! I have met people that knew of Mia without knowing who I am. "Mia's mom" has been my identity this past year- and I'll take it! I am so proud to be her mommy and couldn't love her more if I tried.

Don't be shy! Even if you have never left a comment before- feel free to now. One day when she is looking through all of her baby pictures from her first year, (the sad ones) she will also be reading about how so many loved and supported her. She truly is our little miracle and it has been our pleasure to share her story.

Check back in a few days for birthday photos and to see her "surprise."

Jul 4, 2009

A little Dip

Mia lost a few percentages this week. Other than her demotion to the 3rd percentile for weight... her apt was FABULOUS. We ran into Mia's Heart sister Karlee and mommy Devon. We love seeing all of the babies that have come so far from when we were all living in the hospital.

Oh and YES- Mia is still eating in her sleep. She is averaging about 23 oz per day. We need to go back to the nutritionist because so much has changed, I mean, I keep changing everything! I am curious however, (because I have never had to be so preoccupied with numbers) how much does a typical 1 year old drink? Mia does take baby food too, usually about 1/2 to 3/4 jars of baby food twice a day. Baby food is a lot of empty calories, but we need to get her moving in the solid direction. So... if you have a 1 year old or thereabouts (I like that word)- how many ounces do they drink?

I know Mia has different needs, but I feel like we are pretty close to where they want her, and I don't want to put her tube back in when she is soooo close. We are on Day 8!! Can you believe it? I think I will fortify her formula to see if we can't boost her up to where everyone is happy with her weight.

We're still battling some blood count levels, and if they don't resolve we may be facing a transfusion...but I keep words like "transfusion" at bay.

Happy 4th of July!!

*picture taken by the adorable Morgan who came along with me to the hospital to deliver a batch of blankets she made for the ICU patients. Thanks "Lorgan"