Valentine's Day is CHD Awareness Day

We try to make Valentines Day special just because its also Congenital Heart Defect Awareness day.  We want all the kids to know that Ivy is a survivor, and that we are blessed to have her here.  But this year we didn't have to make any special plans for it because Ivy raises awareness everyday.

"Did you even know I have a special heart?"

That is something that Ivy asks people.  Seriously. She has asked both Scott and I that question before as well as anyone she has regular contact with.  We're like, "Uh, yeah, we definitely know."

I guess it's good that she likes to tell people.  She's not ashamed, she's proud.  She knows she's special.  Since moving to Utah, it's not something we announced to our ward.  We just started going to church and never said anything, but next thing I knew, they knew and started asking me questions.  Ivy told them.

We planned on doing something special, but honestly, we forgot.  That's right.  It's been 5 years since Ivy came into this world and rocked it.  It's been 1 1/2 years since her last surgery.  It's been a few months since her last Echo-cardiogram.  Ivy's special heart isn't something we think about everyday anymore.  We just try to live life and be normal.  It's not that we forget how blessed we are, or that we forget that her heart is special.  We just don't have to think about it every day because she is so normal.    We are trying not to take this normal part of her life for granted, because we remember how hard it was for the first year, but its hard because we just have normal stuff going on.  We aren't overwhelmed by doctors appointments, physical therapy, feeding tubes, oxygen, or oral aversions.  We are overwhelmed by having so many kids, making them eat vegetables, getting to school on time, keeping fighting to a minimum, and keeping the house clean.  The same things everybody else gets overwhelmed by.

I consider this a victory.  It feels fantastic to be normal. 

 So instead of celebrating Ivy's victory over her special heart, we did what everyone else does on February 14th, celebrated Valentines day (we remembered CHD awareness day a few days before, but by the time it came around, it slipped our minds).  We made homemade Valentine's for the kids classmates, and for the first time made Valentine Boxes (their school in Boise didn't do Valentine boxes).  It ended up being a whole lot of work, but everything turned out so cute and fun, and the kids loved it all.

The boys' "Have a SUPER Valentine's Day!" Valentines.

And Ivy's "I'm buggy over you!" valentines.

Ivy's Hello Kitty Box

Corbin's Finn box, and Dexter's B-MO box.

I also put hearts on all of the kids bedroom doors that said nice things about them, and gave them each a little bit of chocolate.  And Scott and I were able to go out for the first time in years while Grandma Marde babysat the kids.  It was a nice day!  It really is nice to be normal.

Happy Fontan-iversary!

It has now been a year since Ivy had her last open-heart surgery, The Fontan.  I can't believe an entire year has gone by.  Ivy is amazing.  She has gone through so much in her short little life that is unimaginable to me.  She is resilient and strong and incredible.  I am so proud of this 4 1/2 year old.  

This is what Ivy looked like a year ago immediately following her surgery:

And here is our little ray of sunshine now. 

 She barely even remembers going through it all.  She says, "Remember when I got poked-ed?" and that's the most she says about it.  She is one amazing little girl.  We celebrated her Fontan-iversary by eating ice cream and telling her we love her and how she (and we) have all benefited by her going through the things she has.  I feel so blessed and grateful to have Ivy in our lives.  She seriously makes even the darkest days bright.  She is everything to us and we are so happy that we get to have her around to bring us joy every. single. day.

We love you, Ivy.  Happy Fontan-iversary!

A rough couple of weeks

I can't wait for April to be over.

Ivy spent about 5 hours in the emergency room last night.  She's had a raging fever since Saturday.  She has Asplenia so high fevers with unknown reasons can be a little scary for her.  I spoke with her doctor twice during the day, took her to the hospital to have some more blood tests done (we did this in early april as well, and got no definitive results), picked up a new prescription for augmenton (an antibiotic) for the second time this month, and made an appointment for her to see an infectious disease doctor at our pediatricians recommendation.  We spent the remainder of the afternoon at home while she whined and winced on the couch.  By dinnertime she complained that her stomach hurt and it was hard to breath.  That was enough for me.  I quickly packed an overnight bag (just in case), but by the time I was done she said her left arm hurt too.  Scott and I both kind of panicked, threw her in the car and she and I headed to the nearest hospital, driving way too fast.

They took us back immediately and hooked Ivy up to all the usual equipment.  The source of her left arm pain was revealed when her shirt came off and it was discovered that she still had the little cotton-ball and band-aid on her arm from the blood work earlier in the day.  I felt pretty dumb, but hey, better safe than sorry, right.  Anyway, they took her temperature twice (the unfun way) and she had a fever of 104.6 degrees.  They quickly got to work on her.  After 2 attempted IV's without success, more blood work, a urine sample, and 5 long hours of crying and heartache it was determined that Ivy had a severe bladder infection.  They gave her a big shot of antibiotics in her butt (which was heartbreaking because it was very unpleasant for her), and sent us home with instructions to continue taking the augmenton, see the infectious disease doctor in the morning, and follow up with the pediatrician.  We got home at 11:30 pm.

I suppose I need to be grateful that in four years this is only the 2nd time she has had to go to the emergency room, and I am, I just feel bad that she had to go through all of it.  I feel stupid for taking her in when it was just a bladder infection, but I am also so happy that it wasn't something worse (like the endocarditis they originally suspected) and that we didn't ever have to be admitted to the hospital.

Now that she's on the augmenton and since she had that extra shot in her butt, she is already seeming a lot better (although she still cried like crazy at the infectious disease doctors office today, but who could blame her!).  I just hope that as soon as she finishes this antibiotic she doesn't instantly get sick again, because its really hard when a princess is sick.

Bless Ivy's Valentine's Day Heart

Did you know that Valentines Day is also National CHD Awareness Day.  I don't know where I'm going with this.  I just wanted everyone to know that congenital heart disease is actually a lot more common than you think.  It is THE MOST common birth defect among babies (Not specifically Ivy's heart defect, but heart defects in general), affecting more than 35,000 infants every year.

So in honor of my sweet little CHD survivor I just want to shout out to the doctors who made it possible for us to have our amazing little girl brightening up our lives every single day. None of them even know this blog exists, but I want to honor them anyway.

Dr. Peter Kouretas:  He preformed Ivy's Norwood Procedure when she was 6 days old, as well as the Norwood repair 11 days later when she had a complication.  Then when she was 11 months old he preformed her Glenn Procedure as well.  Without his steady hands and expertise, we may not have our little ray of sunshine.

Dr. Michael Womack:  He has been Ivy's Pediatric Cardiologist since before she was born.  I have sung his praises many times.  We seriously adore Dr. Womack.  He is the doctor who gave us her diagnosis before birth and has always been so optimistic about how everything is going.  He is a great guy and we are lucky to have him!

Dr. Joseph Kiehl:  He is Ivy's Pediatrician.  We seriously adore Dr. Kiehl also.  He is great with Ivy and all the other kids too.  He always remembers all the kids by name, and does such a great job.  I remember right before Malcolm was born Ivy hurt her leg on the trampoline and refused to walk.  The next day I took her in to his office, but he was out of town so I saw the nurse practitioner instead.  She sent us to the hospital to take x-rays and it was discovered that she had no broken bones so we were told rest the leg and that she should be walking again soon.  2 days later when Dr. Keihl returned to work he heard about Ivy and was concerned so he called me to check on her and make sure she started walking again.  I was so impressed that he cared enough to call.  I don't think our old pediatrician in SLC would have given her a single thought!

Dr. Phillip Burch:  This is the doctor that preformed Ivy's most recent surgery, the Fontan, last July.  We don't know him as well as the other doctors, but he did his job well and Ivy is here today because of that, so we are eternally grateful.

Also, all the cardiologists (even Dr. Jerkface who will remain unnamed), nurses and other random people at PCMC who helped care for Ivy over the years.  We don't know all their names, and they probably don't even remember Ivy because they deal with so many people, but we are very thankful that they are competent at what they do and were able to help us keep our sweet girl.

We are also so grateful for our support system.  This includes everyone who knows our situation and actively supports us by giving us a place to stay during surgeries, babysitting, praying, bringing us food, giving shoulders to cry on, calling to talk things out, and just being there when we need.  We are so grateful for all of you out there.  You keep us going.

And thank you to Ivy for being so darn great!  We are honored to have her in our lives.  She makes life worth living and brings so much joy to our family.  I can't even imagine what life would be like without her, and can't even think about that.  We love her so much and are so proud of her everyday.

If you are still reading this, bless you for your patience.  Happy Valentines Day, and CHD Awareness Day!

Six Months Post-Fontan

Yesterday it was 6 months since Ivy had her Fontan operation.  These six months have been great!  She is doing so well.  She has more energy (she can walk all the way to school and back without getting too tired), her color is pink (as opposed to blueish-purple), her oxygen sats are at an incredible 92-96% on average (they were about 84% before surgery), her scar looks fantastic, and seriously, you would never know that there was ever a problem.  She is a superstar.  She had her six month follow-up with her cardiologist, Dr Womack this week and he is very impressed with her progress.  He gave the green light to wean her off of her Lasix medication (as long as she is doing well), and said we don't have to go back until summer, and then we will probably switch to annual visits!  Whoo hoo!

We love Dr. Womack! Ivy used to scream whenever he walked in the room, but she has since learned that he is a super nice guy.  When he asks her to lift her shirt to listen to her heart, she does it right away.  She holds still and stays quiet when he does an echo, and she is very friendly with him now.  She loves his red shoes and the fact that there is always a nice piece of candy at the end of each visit.  If we ever do manage to move back to SLC we will be sad to leave him!

Ivy with Dr. Womack back in 2009

I can't believe its been 4 years!

I CANNOT believe its been four years since Ivy was born!  Oh how time flies!  Here are a few things about Ivy, that you may, or may not know.

~Everyone (and I literally mean EVERYONE) loves Ivy.  Complete strangers will go out of their way to talk to her and tell her how cute she is.  I'm not exaggerating either.  It happens everywhere we go.

~Ivy has the GREATEST laugh.  She laughs loud and hard and it makes everyone else bust up too.  It is one of the best things about her.

~Ivy is such a sweet little mother.  She loves mugging on Malcolm, giving him kisses, rubbing his head, putting his paci back in his mouth.  She talks to him in her cute little high voice and tries to get him to smile, she tries to keep him happy while I am busy with something else, and is a super helper.

~Ivy seems to finally be getting taller.  For a while there I didn't think she was ever going to add any inches, but lately she is growing up and thinning out.  (Which makes me a little sad, I wish she'd stay little with those adorable chubby cheeks forever).

~Ivy is such a girlie-girl.  Its weird for me, since I was totally the opposite when I was a kid.  She loves pink, princesses, clothes, shoes, and dolls.  She always wants to pick out her own outfits, and enjoys wearing necklaces.  She's so fashionable!

~Ivy brightens up our household.  She gets along with everybody (but if she fights with someone, its usually Dex), and basically has the entire family wrapped around her finger.  For example, if she wants to play the iPad and its all the way upstairs, she'll ask Corbin or Dexter to get it for her, and 90% of the time they will, no questions asked, no complaining.  How do I get that kind of service!

~She's a little spoiled.  I am first to admit that we spoil this girl.  Its really hard not to.  Not only is she our own personal miracle, but she is also the sweetest little girl on the planet.  She has a great personality and is very easy going most of the time.  She is so awesome and well-behaved and tooth-ache inducing sweet that we just have a really difficult time saying no to her!  She hardly ever gets in trouble (it does happen, but she rarely behaves badly, I swear), and when she does she's so tender-hearted that she gets so sad, and that makes me feel bad.  Ugh, I need to work on that I guess.

Anyway, here is our awesome 4 year old with her birthday stash!

For a few of the kids' birthdays they have asked me to crochet them a specific toy.  Ivy asked me to make Jewel from Lalaloopsy.  If you haven't heard of them, here is their website.  They are semi-creepy dolls that have button eyes.  Jewel is her favorite because she has a crown.  Anywho, I worked crazy hard on this doll because I really wanted her to love it, and then we also bought her a Trinket (Jewel's little sister) doll to go with it.  So here is the homemade Jewel on the left, and store bought Trinket on the right.  I think they look great together!

Okay, I took a lot of pics of the doll for my World of Yarn website, so here are a few more.

A Collage of Craziness

First off, yesterday, Ivy had her post-op appointment with her cardiologist.  He took her off oxygen!!  Yay!  That oxygen was seriously a pain in the butt.  Her sats were the same with and without the oxygen in, so he decided she didn't need it.  He also took away one med, but she has to keep one until the first week of September, when he'll see her again and do an echo.  She is doing so great, and is back to her normal self (except that she was afraid of Dr Womack again. The hospital made her afraid of the medical field all over again).  We've spent most of our time hanging out in our air conditioned home, watching movies.  Ivy's obsessed with the montage videos that daddy makes for the kids.  I've put them all up here on the blog at some point, but I wanted to share one again.  This is from Ivy's first birthday and shows all the progress she made in that first year.  Its my favorite one and it still makes me cry EVERY TIME!  She was always so happy, even after all the stuff she had gone through.  This girl is totally my hero.

In other news, I'm 33 1/2 weeks pregnant.  6 1/2 weeks to go.  (yes, mom, I went to the doctor, everything is still fine). I still haven't started getting things ready for this baby.  I don't want to go in the attic to dig out the boy clothes, just in case.  Its too much work.  So instead I got some gender neutral onesies from Target to take the hospital.  I can do the other stuff after the baby is born, if its a boy.  I have a huge "to-do list" that I'm trying to get done before the boys get home from Utah.  Lots of those things are to prepare for this baby.  Hopefully I get them all done before he/she arrives.

 Since coming home, we are having bug problems. We came home to fly season in our neighborhood.  We live right by a farm, so every year the flies get REALLY overwhelming at some point in the summer.  We hoped that since the boys weren't home to leave the back door open all the time, they wouldn't all get in the house.  Unfortunately those darn flies found ways around that.  A few days after we got home we opened up our big trash can in the garage and out flew about 8 billion flies.  I've never seen so many flies.  It was horrifying.  Every time we came in the house from the garage, a million of those flies came in.  I went on several fly-killing sprees, but there were still so many.  We put up a bunch of fly traps (3 in the garage, 2 in the house), they all looked like this after a day (or worse).  They are mostly gone now, but it was miserable getting to this point.  Stupid flies.

The second bug problem: BEES!  We haven't done much playing outside since coming home (with Ivy attached to oxygen and it being 5000 degrees outside, it was too hard), but after Ivy's appointment and no more oxygen, the girls went outside to play while Scott and I bbq'd some burgers. Scott realized there were a bunch of bees by us, this is what he found.  A big fat beehive on the underside of our grill.

Several minutes later, Ivy started screaming.  I don't mean little screams, I mean blood-curdling, horrifying screams.  We looked over and she was climbing the ladder on our playground, surrounded by bees.  We both ran over, Scott grabbed her and ran her inside and I grabbed Echo, who was on the slide, and followed them.  There was another GIANT beehive on the underside of the playground.

 Poor innocent Ivy got stung FIVE TIMES!  One on her hand, one on her arm, one just under her lower lip, one on her forehead, and one on her ear.  Luckily, Echo didn't get any, but she was VERY ANGRY when we wouldn't let her go back outside.  Ivy is fine, she cried for a while (as would I), and now talks about it very matter-of-factly, saying, "I got attacked by bees.  They stinged me."  I felt sick to my stomach when it happened and I still can't believe it.  It was really scary.  I even called Dr. Womack to make sure she could take benedryl, and that she'd be fine.  I'm afraid she'll never go outside again.  Ps..Scott went on a bee-murdering spree right after it happened.  I think they are all dead now!  Here are a couple of terrible pictures of the stings.

 And here she is smiling after she stopped crying.  What a trooper.

 And last, and definitely least, I got some new dolls up on my Etsy page if you want to check them out.  I'm sure you totally care!