Stella's Heart: Some Spring updates - and some unexpected ink

Since our last post, we moved! It's actually been a while since my last post, but starting back in December, the Stacy party of 5 now lives in Warson Woods, about 5 houses down from the house I grew up in as a child. It is safe to say we are beyond excited to be in a neighborhood filled with kids, parks and a pool. We are getting settled and so grateful for the little world of people that love us and help us that has helped make our new little world happen.

We also celebrated Christmas, Bubby's 61st birthday, Izzy's 60th birthday, Valentines Day and the twin's 3rd birthday! Stella gets dressed wearing heart outfits more mornings than not, because each day we also celebrate her continued growth as she becomes a very serious toddler. She isn't walking quite yet, but is on the move in every other way imaginable and Mommy is anxiously awaiting the departure from "suicide watch" as she goes from attempting to be mobile to actually walking :)

Unfortunately, Stella has fallen ill more than a couple of times. We've had some of ear infections, colds, viruses, and every stomach bug you can name. But lately, little girl has been really sick. She earned herself a few chest x-rays to rule out pneumonia, and another unpleasant test I won't describe to rule out a urinary infection. Despite all of this, she kept a healthy appetite and finally got her G Button out! For the first time in her entire life, she doesn't have a tube sticking out of her. Taking out the G Button was such a simple procedure, but I can't begin to describe how it feels to look at my baby and not see a tube in sight (cue the mom tears.)

After we removed the G Button, Stella got sick (AGAIN). She has fought 2 or 3 more stomach bugs (I'm losing track) but remains our smiley, spunky, fighter. She had an echo last week and her heart remains "stable" - about how it looked at the last appointment. Her doctors continue to struggle to visualize any flow into her LPA, but given it looks the same as the last echo and follow up CT with contrast, they feel confident it is there.

One announcement of sorts - I've been invited to attend the NPC - QIC Spring Conference as a parent representative with St. Louis Children's Hospital in May. The National Pediatric Cardiology - Quality Improvement Collaborative is a group of clinicians, researchers, and parents, from across 60 medical institutions who have been collaborating to ensure that families of children, who receive a diagnosis of Hypoplastic Left Heart Syndrom (HLHS), and other univentricular hearts, have hope. They specifically focus on the "interstage" period - between the Norwood and the Glenn - when the risk of mortality is the highest, working to improve quality of life and life expectancy for single ventricle and CHD babies.

I'm flattered to be the first parent representative attending with SLCH and am anxious to spend an entire weekend with doctors, researchers and parents discussing all things HLHS. The older Stella gets, the harder it gets to remember she is in fact very sick. She LOOKS so good, and even though she hasn't been feeling well since for months, she has recovered from every virus. I struggle every single day trying to treat her like a "normal" baby - and freaking out that we could lose her well before any of us are prepared to. My biggest prayer in attending the conference is to meet other HLHS mom's who have paved the road ahead of me. I know many of them have lost their children (not a club I'm looking to join) but I also know many of them have kids who've been through the 3rd surgery and beyond and I think for my Mama heart, meeting them and forming relationships will help me prepare to take care of Miss Stella's heart in the months and years (and I pray MANY years) to come).

Oh, and finally, a happy story. Maybe I should have started with this one.

A couple weeks ago we attended a reception with my parents at our very favorite restaurant (Olive and Oak) to celebrate the successes of our very favorite foundation that raises money for CHDs (The Ollie Hinkle Heart Foundation). That afternoon Jen Hinkle spoke and my mom noticed that Jen had the cutest heart tattoo on her wrist. If any of you know my mom (perhaps better known as Izzy or Lizard), she is NOT one to be fond of body art :) In fact, I got a tattoo in college and she didn't know about it for a couple of years and when she did find out about it she called me at work and, I quote, told me "I hope you were drinking when you did that!"

Needless to say, Izzy has not been pining away about the tattoo she never got. But the moment she saw Jen's heart tattoo, she knew that is what she wanted to honor and keep Stella close to her heart and in her prayers. Immediately, I told her if she was getting one so was I! Our husbands assumed we had been drinking too much wine on a Sunday afternoon and rolled their eyes ... and then we started googling tattoo parlors :)

About 2 hours later Izzy and I were waiting inside Iron Age for a turn with tattoo man Chris (Bubby had to go home and grab mom's drivers license - she didn't think to throw it into her clutch hours earlier, before the thought of a tattoo EVER entered her mind!) Watching her fill out the paperwork in her Tom's wedges and Lilly poncho - it was just the cutest. We fit RIGHT in.

By 8 pm, about 4 hours after Jen had picked up a microphone and flashed her little inked heart, Mom and I had matching tattoos (that Bubby paid for!) and I had the best Sunday afternoon story I could think of.

With that being said, some snaps of life lately

Our Christmas Angel