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