Monthly Archives: August 2012

8 days ago..

Ahhh! So sorry for the lack of updates. Broken promises. Broken plans. Yikes. I intended to update this blog for every day in August. I had a little sliver of doubt at the beginning of the month. Once I got going, blogging everyday, I started to see our calendar fill up. Some days with plans oozing out of the huge box with that day and it’s little ‘ol number. The sliver of doubt began when I saw the beginning of school for Natalie, appointments, and the start of school. School- for everyone! Come one! Come all!

Our household currently houses 4 occupants and 4 students. Check us out! eehhh? Right??

But most importantly, our dear Natalie began the big K on Monday. This year, the school did a “soft start” where each child could pick either that Monday or Tuesday to begin class and then having Wednesday as the first day of a full class. If I heard right, I think there are about 21 students in her class. For our county’s standards that’s not too shabby.

But again MOST importantly, how did she do?

Fantastically! That’s how. She had a quick moment this morning where she asked, “Mommy, do I really have to go to school today? I’m so tired.” I think we all understand the exhaustion in that question. Her brother, who is in 1st grade, asked that question quite a few times during his entire kindergarten year. I’m kind of shocked that she waited to ask all the way on a Friday morning. Tuesday was usually her brother’s day to ask me that question.

The school has been pretty awesome about keeping the teachers in the loop about Natalie’s health plan. In fact, that’s another shocker for me, because I’m so new to this whole kid-in-school-all-day-with-heart-condition-thing. Brand new. She had a year of preschool but by the time I got home from dropping her off it was time to pick her up. And that was only 3-4 days a week. This time, it’s real. Like for real, for real. The school has been very good about taking care of Natalie so far. The only small issue we’ve had was some heat exhaustion the other day, but even I failed to see how hot it really was outside. Throw into the mix 3 recesses (2 of which I didn’t know about) and well, you get a little bit of heat exhaustion. She fell ill by the end of Wednesday, but once I pumped her full of even more water and a snack she was feeling normal again. The school didn’t do anything wrong. They kept supplying her with water and she kept downing it. When her teacher would ask, “Natalie are you okay?” several times, Natalie (just like her mom) would brush it off and just say “I’m fine”. She even looked fine, until we started our walk home.

Now we know to cut her recess time down a little bit on hot days. The 3rd recess is being dropped off soon so that won’t matter. It’s the lunch recess that’s triggering, I think, the biggest problem. For days like today, where the heat is just too much, Natalie will get to spend it inside either with the teacher or at the office, reading, coloring, and hamming it up with the faculty.

Wanna see some photos? Oh you know that’s why you’re here:

Natalie with her big brother! I really need to compare these 2 to last years’ photos. My god.

And there they go… off to new adventures.. off to experience the school life. A life of slightly crappy school lunches, optimistic dread, the sound of bells, the smell of pencils, glue sticks, and copied paper. Just like last year, the new students have the “deer caught in headlights” look. Natalie was smiling and then waved after I took this photo. Ham. Pure ham.

Natalie quotes.

“Can I have some pasta with no sauce? I love it plain cause it’s the best.”

“I’m not tired.” (YAWWWN)

“When I grow up I’m going to be a cat.”

“I’m going to shake my booty butt.”

“I love my brudder.”

“James if you give me mommy’s phone I’ll give you a hug.”

“It’s SO HOT outside.” (and places hand on forehead all dramatically)

“I love you, Mommy.” (said at random times all day and really fast)

Hopkins.

The early morning of Monday, October 1st, 2007 was one full of so many raw emotions. We had just left the operating room, where we watched our 5 month old daughter scream and cry with a small mask over her nose and mouth, but then drift off from the anesthesia. Tears freely falling, our hands sweaty with anxiety, our bodies shaking, and the sadness of having to watch our daughter being forced into a deep sleep for the 2nd time in a week. It was so much.. too much..to take in.

We collapsed into 2 seats in the narrow hall of a waiting room while a surgeon and his team prepared to open up our infant’s chest for the 1st time. No amount of preparation prepared us for this day. For this moment. But it was necessary and we never questioned why were going through this.

We had spent the evening prior bathing her and absorbing her smiles and giggles like sponges. We watched her splash and kick those chunky feet. Oh she smelled so good when we laid her down for bedtime. I still love sniffing her head.

In the waiting area, we started to feel claustrophobic. I kept thinking of the smell of her hair. She still smelled good when she was laying on the operating table.  We went and grabbed something to drink and made way for our van. The novelty of our van’s DVD player was still new so we watched “Little Miss Sunshine” with our seats propped all the way back. I had to re-watch the movie a year or so later. I remembered nothing about it because all I could think about was Natalie. We both equate that movie with Natalie’s first open heart surgery.

Around 4pm we were called and told to come back to the building. We were very close since we never left the parking garage. They were finished! We rushed back to the waiting room and within about a minute or so we heard the squeaky wheels of a metal crib being wheeled from the OR. I jumped out my small chair. I almost didn’t recognize her.. she was so pink and milky-white. She looked like Snow White with blonde hair. It’s hard to not see the tubes and wires and rows of medications attached to your child, but I spent several moments just staring at her pink baby toes and ruby red lips. I had never seen her look so healthy since.. never. The crowd of people taking care of her followed her metal crib down the hall and behind them was the surgeon.

The man himself- Dr. Luca Vricella comes to talk to us. He told us how perfect everything went. While he spoke to us he teared up and then hugged my husband! I wish I had gotten a hug but I just stood there crying and attempting to smile. I wanted to smile but I was just so full of emotions. It’s all so bittersweet..that moment. Bitter because you have no clue what the recovery will be like for your infant. You have no clue what to expect. So sweet because this man just saved our daughter’s life and he’s standing right there with us and taking in this joyous moment with us. He oozed compassion. There’s a 4 minute video below which features Dr. Vricella and his heart transplant patient Olivia. It’s a really touching story.. he oozes compassion and hope in this video and he’s exactly like that when standing in front of you..

In the summer of 2008, ABC featured a 7 episode documentary titled “Hopkins”. It’s by the same creator of today’s “NY Med” Terrence Wrong. They featured our hero Dr. Vricella and just as shockingly, our pediatric cardiologist Dr. Ravekes! I remember shouting at the screen “OHMYGOD IT’S OUR DOCTOR YOU GUYS!!”  when his face was there on our tv set. We saw Dr. Ravekes every six months right up until about a week or so before we moved here to Colorado in April of 2009. He also took great care of Natalie before her surgeries, keeping a really close eye on her when we’d take her for weekly weight checks at Johns Hopkins. We had the chance to mention the show to Dr. Ravekes and he was so cool about it.

And now Dr. Vricella is John Hopkins’ Director of Pediatric Cardiac Surgery! Totally not surprised. And it looks like our cardiologist is still there.

Those men…. that hospital… it couldn’t have gotten better. We were lucky to live where we did at the time because Natalie had the greatest minds in the world caring for her. What more could a Queen need…

on ignorance.

One of my biggest pet peeves when it comes to anything in life would be ignorance. And I don’t mean the “girl, you are so ignorant” kind of ignorant. I grew up using it that way and suddenly realized one day that it doesn’t mean “rude”. I mean the total lack of knowledge about something especially when it comes to the whole gigantic world of medical-type people. More specifically, the ones who have been poking, prodding, and eye-balling my heart kiddo for going on 3 years now. The ones who still gawk at her beautifully set chest zipper and drainage scars and then with total shock ask, “why does she have THOSE scars??”

Seriously??

We’ve been going to the exact same pediatrician for 3 very full years now. We have no other choices of doctors in our area right now, so for a little bit longer, we’re stuck. The doctor who is (technically) supposed to be the “special needs” doc isn’t always at her practice. In fact, she hardly ever is. And we were very lucky and happy to have her perform Natalie’s most recent June well checkup. Talk about catching up on so much lost time. It had been about 2 years since we had seen her last. So those last 2 well checkups were spent with nurses, doctors, gosh whoever they are because there are so many. And to be totally honest here, I’m (technically) fine with anyone seeing Natalie as long as it’s a checkup and I feel like they’re thorough enough. Hey a chart is a chart. As long as it’s all charted I’m good. Problem is, the office is still playing digital catch up which has probably beat the world’s longest record for transitioning from paper to ones and zeros.

So we’ve had medical professionals take not a quick second to know who Natalie is before they meet her. They have ignorantly started a checkup with a child who they didn’t bother to read about before slapping those blue gloves on their hands. The front desk people know exactly who Natalie is! The nurse who administers vaccines does, too and they all are like in love with Natalie because they know how far she’s come. They’ve seen her in her highs and lows and everything in between.

But when a doctor who has met Natalie before asks “why does she have THOSE scars??” again, I’m going to just say that I had no idea that she had scars OMG! That’ll get a good rise out of ’em.

fenestration.

Natalie visits the pediatric cardiologist every 6 months still. Which is totally fine for this nervous mama. Not that I wouldn’t enjoy yearly visits at least a little bit, though! But for now every 6 months is where it’s at. It beats the bi-weekly (sometimes weekly) cardiac visits when she was an infant. We are in love with her doctor. The staff is pretty awesome and her doctor is even more awesome if that is possible. They know Natalie and in her eyes, anyone that covers her in free princess stickers is a winner.

Currently Natalie’s heart function is exactly where it should be at. Her normal oxygen saturations are in the high 80s. 88% is a great number in the high elevations. It’s also great for still having a fenestration. As of today, Natalie is at her prime with the fenestration. We do get asked a lot if and when they’ll close it. I like when people ask about Natalie and where she’s at. It keeps my brain fresh. As my old boss used to tell me (when I would do something extra good at my job that day).. “it warms the cockles of my heart” when people ask me questions about my daughter. But yes, at some point Natalie will need that little “pop off point” to be closed as it will no longer serve a purpose. This little hole, almost like a manmade ASD, helps to keep Natalie’s heart pressures at a healthy level. As she continues to grow like a wild weed, we may notice her feeling more tired, have some cyanotic spells, and will show signs of something a little wrong. This is why her cardiac checkups are still every 6 months. It usually isn’t an overnight thing that happens. It’s gradual (thank goodness). But gradual could mean anything in the CHD world.. from days, weeks to a month or so. That’s when we’ll know that instead of the fenestration helping, it’ll actually be taking away oxygenated blood away from her and her big growing body will need it.

mystery solved?

Today was the day. We were going to go and buy really good comfy shoes for Natalie to wear for school. I’ve been extra dorky lately thinking about how I need to be sure and find a pair of really supportive shoes for her super high-arched feet. She also has a HUGE big toe. Think of a pair of pumps..the really pointy kind? Yes. Natalie will have no problem wearing those when she’s older. Hopefully she’ll be older.

See here’s the thing. Natalie awakens from her sleep every so often with some mysterious foot pain. At first, I thought she was making it up. Then after a few more times of her waking me up by staring at me at the foot of the bed (creeeepy), I realized that something was going on. We started making sure she drank extra water (dehydration?). We started to make sure that she had her daily aspirin right before bed (kick the pain away before it starts?). We also started to keep her from running around in her flip-flops. This has all been going on with her new problem, as well: migraines. So we thought we’d nip both both in the bud at the same time.

It’s gotten better but then I read a thread on Facebook where there is some debate about whether foot and leg pain is connected to pre and post-Fontan patients. We don’t know if it’s the repeated heart catheterizations or what, especially since the tubing is guided through the groin area. There’s a humungo question mark with this. But let’s just say, Natalie isn’t he only kid complaining of her (very specifically) left foot hurting at night.

I knew that we would find her some really comfy running shoes for school. After all, she’ll have 2 recesses at school each day. Gotta put that sandbox sand and wood chips in somewhere comfy! The Queen asked for “pink, fluffy, feathery” shoes. Instead she chose pink and black Saucony’s. Thank god.

After making her choice, we had the salesman measure both of her feet. BINGO!

Her left foot? The one that has been having pain? is almost a full size smaller than her right.

Guess which foot I’ve been measuring? Her right.

I think the mystery may have been solved. We’ll see! Proof that Natalie is cute and quirky.

Quote

January 13th, 2010.. surgical log

Day 2.. January 13th, 2010

“I’m writing this while I watch you peacefully sleep on 1-13-2010. I day (almost 24 hours) after your Fontan operation. You slept more at 5 months of age with your Glenn that shocks me now with your age of 2 1/2 and having such a complicated operation. You fight your sleep more now. With your Glenn Shunt you did AMAZING (underlined). I remember MANY of your wires coming out by Wednesday, the 3rd day of recovery. Then on Thursday your 2 drainage tubes came out successfully. I wish I hadn’t seen them do it because you were in so much pain 😦 But like always you handled it like a champ.”

post op medications….

“Zantac, Lasix, Morphine, Heparin, Tylenol, Albumin”

still Day 2..2nd entry of 1-13-2010

“You are AMAZING my dear!! Truly amazing. As of now at your age, you have no idea how strong and feisty you are. At home your feistiness would frustrate me, but that’s now what’s going to get you home faster. Your nurses are awesome. They are so good with you. Many of your responses to their questions is “NO” and “ALL DONE!!” You also told me today that you will punch me. Honestly, anything that makes you feel better then do it. You came off of the ventilator at about 6:45pm yesterday. They tried sooner but you were so upset that you held your breath! We’re almost 24 hours post-op and you are (like I just knew) “wowing” everyone with how quickly you’re recovering. You do say “huggie Mommy huggie!!” often for me to hold you and that makes me so sad. But I know that in a few days, your wish will come true. Right now at 2:30pm 1/13/10 you are sleeping peacefully to the sounds of Cinderella. Thank god you’re sleeping because last night you barely slept at all.”

community and loss.

When the CHD community loses another fighter, the wave of shock and sadness never recedes fast enough to take a good deep breath until the next wave.

When I hear about another loss, it’s just as devastating at the first loss I ever heard about when I entered this community 5 years ago. It never gets easier. In fact, it gets more difficult to bare. The weight of sadness on the heart is too heavy to hold. It really does pull you down. I want so badly to hug these parents who experience these losses and it sucks so much that I can’t.

In our journey we haven’t yet met too many families in Colorado affected by CHDs. A few, but not many. And in our journey I have yet to meet a family who is affected by the loss because of it. I’m sure in some Freudian way I’m doing that on purpose, to avoid the pain or something. Because it will boil down to something that every parent of a CHD survivor hates to confront…

their child’s own mortality. It is awful to feel that fear because first of all, the most recent losses and every past loss has zero to do with how I feel. There’s the guilt of even daring to “go there” with your thoughts. How dare I even think about my own crap when there’s a parent shedding tears and enduring such excruciating pain? I don’t have the right.

But I’m human. We’re all human and we’re all in this shit together. Despite our own fears, worries, guilt, tears, and anxiety, we pull together.

I don’t tell Natalie about the losses.

She sees the beautiful photos of warriors who are still with us and are not on this earth. I don’t decipher the 2 for her. So while so many of us mourn, show our support and shed tears for the fallen,  the only thing I can do about it, once it hits home, is to hug my own warrior a little more and just keep appreciating every second with her. The smell of her hair, the dimples on her cheeks, and that wonderful belly laugh.

 

The Queen and a few summer photo highlights : )

Meet “purple blanket”. Purple Blanket meet EVERYONE. She stopped playing on the floor to grab her most favorite blanket and sniff it. Then I asked her what it smells like. “Marshmallows Mommy!” That blanket has seen is all- all 4 surgeries and so SO much more.

If you’re blanket doesn’t smell like marshmallows then you’re doing it wrong. (Also, I think hers smells like dried saliva and boogers but that’s ok)

This kid seriously cracks me up. I love that her eyes are closed but she’s doing her model pose. My goodness.

STICKY HANDFACE!

annnnnnnd DONE! She kind of likes makeup. Surprised?

She also loves her pink cat ears.  You’ll be seeing so much more of these. These are part of her outside uniform. The Queen and her big brother, King James..

health plan.

When I met with the school nurse.. well..the district-wide nurse a few months ago I was so happy to get the elementary school prepared about Natalie. She’ll be the only child in her school with a severe CHD, let alone half of a heart, so I thought “yup, let’s do this”. Everyone is always really nice to talk to which makes this anxiety-filled mom feel at ease. When I first sat down with the nurse she immediately shows me all of the printouts she acquired about single ventricle hearts and Tricuspid Atresia. She confessed to have never met a child with a CHD like this and I told that definitely didn’t surprise me.

I spent an hour talking with the nurse and we drew up a really great health plan for Natalie. This plan stays within the school system and follows Natalie as she climbs up to each new grade. We can revisit the plan anytime and change things if needed. Plus, the principal, assistant principal, everyone at the school is made aware of the health plan. More easily put- every major official at the school is prepared. The nurse and I listed every single tiny thing we could in the health plan. I knew that a few weeks later we’d be seeing the cardiologist for Natalie’s 6 month heart check-up so I let the doc take a good look at it. She scanned the document for a good minute or so..”Looks great! I wouldn’t change a thing!” I thought I listed too much and she said that’s what she likes about it. The cardiologist gets a little worried when not enough is listed on these health plans for these CHD survivors.

Sorry for the bad copy. The school printer was on the fritz that day. But this gives you can idea of what’s included. We made sure to include things that would help identify what Natalie’s normals are and what’s definitely not normal. The school’s front office secretary confessed that she’s a little nervous. You see, she would be the first one to care for Natalie if she comes to the office. And she’s in charge of making parent phone calls. So I was warned that I may get several in the first month or so. This is why I’ll be taking online courses at home, only a few short blocks away.

Luckily, Natalie will have the same kindergarten teacher that her big brother had. She is very comfortable with Natalie and is well aware of her “special heart”. I think that’s what’s going to make it or break it. I don’t think it will break it.

I found out that same day of planning this with the nurse, a 7th grader in the local middle school and their parents just completed their health plan. Want to know what the disability was?

Tricuspid Atresia.

Yup! So maybe it’s not as uncommon as I thought. Crazy isn’t it?