Hypoplastic Left Heart Syndrome By Numbers

by Suz on February 4, 2015

To read the initial post regarding Lula’s heart click here.

Once a day for the past five, sixseven, eight months, I’ve thought about writing an update about Lula. I think about what I should write, where I should start. Clearly, the obvious choice would be conception…but interesting of a story as that might be, my parents read this…and I’m fairly certain they still believe The Stork dropped off Lula.

The next most obvious starting place: her birth.

Miss Lula Mae

Miss Lula Mae

And that’s where I choke. I think about the day that was the most heartbreakingly joyful day of my life and I start to cry. So I quit thinking about it….which I’m pretty sure is what most therapists tell you to do- suppress, suppress, suppress.  I clearly don’t have a therapist.

Lula: 3 days old, right after her Norwood Surgery

Lula: 3 days old, right after her Norwood surgery.

I know there are many people who have been praying for our little princess warrior, and many have asked what it has been like…since numbers are easy and only require counting and not a whole lot of inner reflection, here is a list of everything Lula has undergone so far in her short life. Most within the first 4-5 months, but I’m very slow and just doing this now.

5 Hospital admissions
34 Nights spent in Hospital
4 times undergoing Anesthesia
2 Open heart surgeries
2 Heart Catheterization’s
24 (1-3 hour) visits to Cardiac Clinic to see Cardiologist, Dietician, PT/OT
7 Visits to Pediatrician
2 Ear Nose and throat Consults
1 GI visit
1 Visit to ER
12+ Echocardiograms
6+ EKGs
2 Swallow studys
1 CT scan
12+ Chest Xrays
5+ Abdominal Xrays
8 Peripheral IV’s
32+ Pokes for blood/IV
4 Central IV Lines
2 arterial IV lines
9 NG’s placed (feeding tube) for a total of 30 days with feeding tube
6 Enrollments in Research Studies
8 Home Physical Therapy visits
10 home Occupational Therapy visits (for feeding issues)

In our House we’ve gone through:

2.5 Liters of Hand sanitizer
3 Liters of hand soap
$707,923 of Medical charges (and counting)
Weighing her every day for the first 4 months
Waking her up to feed her every 3-4 hours for first 4-5 months because she didn’t eat enough during day.
Checking her oxygen saturations 2x/day for first 4 months (now just 1x/day)
She takes 4 different medicines up to 3x/day. (Enalapril, Sildenafil, Aspirin, prevacid)

In our marriage we have gone through: Millions of arguments of what Lula can and can’t do right now…no specification needed which one of us was on what end of the arguments. But if you were wondering- I don’t do crossfit.

“No, Lula can’t go camping up in the mountains when she’s 4 weeks old.” “No, we are not putting Lula in a bag and climbing Castleton Tower with her…no, even if it’s a ‘special haul big fit specifically for her.'” “No, Lula can not go winter camping in the mountains.” “No, you are most definitely not backcountry skiing with Lula in an Ergo…even if you have an avalanche beacon and a shovel.” “No, Lula is not going to be the first baby with half a heart to climb all the 14’ers before she’s 2.”

“Yes, Lula can go to crossfit with you.”

Compared to many parents with children with HLHS or another heart defect, we have had it so EASY. I almost feel guilty comparing myself to any of them.  We don’t have a “healthy, normal” kid, but we’ve got a really healthy, chubby “sick” kid.

And she is amazing.

Happy Thanksgiving!

Happy Thanksgiving!

Despite everything, I wouldn’t change a thing…sure, if I could magically fix Lula’s heart, I would in a second. But if the choice was having a healthy different baby or her, I would choose her every single time. She is full of smiles and happiness and brings us so much joy.  We finally feel like we have reached a lull in the storm, and have been relaxing as things have gotten easier for us. “Lull” is a relative term and a matter of perspective- I count 11 various appointments for Lula in the next month.

The most very best Christmas present ever...Lula with her big sister Maile.

The most very best Christmas present ever...Lula with her big sister Maile.

I’m making a priority to post because this month is Congenital Heart Disease (CHD) “awareness” month. Despite my personal feeling (no one asked me, and now I’m perpetuating the problem) that there are too many special awareness “weeks” and “months”, I thought I would do my measly part to educate.

At the very least I’d like to point out it is the most common birth defect (1 in 100 children are born with a CHD) and my crystal meth habit wasn’t what caused Lula’s heart problem.  Possibly my spray painting habit, but not the crystal meth. Most causes of CHD are unknown with only 15-20% relating to known genetic conditions.  Some things such as maternal diabetes, obesity, or smoking are known to be risk factors for CHD.  About 25% of children with CHD will need some sort of surgical intervention and CHDs are the main cause of infant deaths.   End spiel.

Thanks to Joni Schrantz for taking some fun pictures of us.

Thanks to Joni Schrantz for taking some fun pictures of us.

If Lula had been born 30 years ago, she’d be dead.  Even now, she still has a 60-65% chance of making it to her fourth birthday.  With every additional day that goes by, I am incredibly aware of the gift we have been given of being able to spend another day with her.  We are very thankful for all our friends and family who have helped us and prayed for our family.

Thank you.

I very belatedly made Lula a facebook page so I could update easier (since I suck at this blog updating thing).  If you are interested in seeing more pictures of the chunky monkey, you can visit and “like” her Princess Warrior page and continue to get (what are bound to be more frequent) updates.

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