A Long, Overdue Thank You

In December of 2009, when our world came crashing down after hearing Zoe's diagnosis, the first support we received came from my parents - 100% support. On that afternoon, we still had not decided what direction her diagnosis would take us - termination of the pregnancy or a fight for life. We were still in shock, as the HLHS diagnosis for our unnamed baby had not even fully registered in our minds.

My parents, without hesitation, voiced their support in whatever decision we made for the future of our family. They did not try and persuade us one way or another, they simply offered love and support.

For the next several weeks, I found myself at home, trying to hold back tears as I looked at Emerson. Saddened at what our new journey meant for her and frightened that she too had an undiagnosed heart defect. My parents watched Emmy during the day so we could attend countless doctor's consultations and fly to Philadelphia to meet with the experts.

When we left for Philadelphia, we took Emerson with us. I couldn't stand to be separated from her for 4 weeks. Shortly before Zoe's scheduled arrival, my parents flew out to Philadelphia, putting their lives on hold for a month. While Caleb and I spent most of our days and nights at the hospital with Zoe, my parents held down our temporary fort and kept Emerson happy as a clam. They brought her to the hospital to visit her sister and spent quality time with Zoe, as she recovered from her first open heart surgery.


When Caleb, Zoe and myself returned to Philadelphia for Zoe's second open heart surgery this past September, they again, provided a loving environment for Emerson for our two week jaunt.

And now, as I've returned to work full-time, my dad (or as Emmy calls him "Papa") watches my girls, his grandchildren, throughout the week. Without he and my mom, I don't know what we would do. Zoe cannot be in daycare due to exposure to bacteria and viruses.

As much as I state my thankful and gratefulness for my heart family, I am ever-so grateful and thankful for my family-family. Because without them, all of this would be nearly impossible to manage.

So, thank you Mom and Dad, for loving us and loving our girls unconditionally. It means more to us than you'll ever fully realize.


Love,
Stacey, Caleb, Emerson and Zoe

Field Trips

Zoe has been out and about the last few weekends. She's been to ZooLights at the Phoenix Zoo . . .


To the cabin for a weekend in the snow . . .


And, most importnatly, to meet her Great-Grandpa and Great-Grandma Muenich for the first time. Yes, we've been extremely careful (perhaps overboard) with Zoe's exposure to the outside world. Being flu and RSV season, we've been limiting her outings for the most part.

Of course, we took several pictures during the "meeting." We did our best to get both girls smiling at the SAME TIME, but you know Emmy! Zoe is easy, Emmy, not so much.


The Greats are so proud of Zoe. They've been praying for her everyday since she was diagnosed back in December of 2009. You can see it in their eyes and smiles just how proud they are.




And for those of you who wonder who Zoe looks like, I think she's got a lot of her Great-Grandma Muenich in her.


And, this picture I couldn't resist posting. She's just so darned cute, pear/mango face and all.

Family Getaway

After spending nearly 8 months locked up, the Lihn family got out for a weekend away. The arrival of snow drew us north to my parent's cabin in Strawberry, Arizona. Altitude is about 4500 feet higher, so we took Zoe's pulse ox monitor and portable oxygen tank just in case. Of course, she is a trooper and didn't need it. Her sats stayed in the 90s all weekend.

Shortly after we arrived, we dressed and headed out to play in the snow.


Grandma and Grandpa Muenich provided the sled and Emmy had a blast!


Grandpa kept Zoe company while we were busy snapping photos of Emmy's first sledding experience.




Then Zoe joined in the sledding fun.



We took more family photos (since we don't get snow too often in Arizona.)




After snow day, Zoe relaxed by the fire.


The next morning Emmy and Caleb headed out again to build a snowman. I'm not so sure I would call it a snow"man," more like a snow"jabba."



Emmy insisted on sledding some more.


The girls enjoyed their bonding time and once we arrived home, took to wrestling. I'm fairly certain Zoe will be beating up her big sister in a few years.


We had a great time at the cabin and plan to spend many more weekends there this summer to escape the 115 degree heat.

An Arranged Friendship

Most of you have heard of an arranged marriage, but Zoe was in for an arranged friendship. Fair? Perhaps not. But don't "moms know best?"

Shortly after learning of Zoe's diagnosis, in utero, I went straight to the internet. I researched HLHS and found other heart moms online. Through the wonders of Facebook, I met a handful of heart moms close in gestation and delivering at the Children's Hospital of Philadelphia. Before we actually met in person, Mia's mom, Jenn and I felt like we already "knew" each other. As our friendship grew, so did Mia and Zoe's...they just didn't know it yet.

Mia was born on April 29, 2010. Zoe was born on May 11, 2010. Both born with one functioning heart ventricle. Mia, the older of the two friends, led the way. She underwent her Norwood first and set the bar high, very high. Mia was a "rockstar" at CHOP. She recovered in record time (no joke) and discharged in 3 weeks time.

After Zoe's surgery and discharge, Jenn and I communicated often (via email, texts, phone, you-name-it.) Heart mommy support knows no boundaries!

Growing up as a child with only half a heart was not going to be easy. Jenn and I realized that, and hence, Zoe and Mia's arranged friendship was born. Mia and Zoe were already being booked for Florida beach vacations and annual trips. We knew they'd need each other as they grew and faced similar experiences. They were destined to be BFFs.

On July 25, 2010, Zoe lost her friend. I met Mia on more than one occasion, but Zoe never had the opportunity. Sure, they laid in the same hospital just a few hundred feet from each other; but they were busy battling HLHS.

The day I heard the news of Mia's passing is forever etched in my mind.

Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday. Despite this, Zoe will know Mia and will grow to know her twin brother, Madden.

Many of you know of Mia, or have seen this picture of Zoe, honoring and remembering Mia on her 3 month birthday, just 3 days after her passing.


Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for Zoe and all other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs. Zoe already has hers which she loves (and apparently they taste good too.)




Zoe (and I) will wear Mia's Charm with pride - to honor and remember Mia and all of the CHD angels and warriors.

If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order form here or by emailing a request to HLHS.HeartHugsForMia@yahoo.com if you do not have a Facebook account.

And a few more from Zoe's photoshoot...




And, of course, all of this, in remembrance of Mia Grace Marrone. We miss you little one.

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for single ventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by Heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Zoe’s story and the stories of so many of her heart friends and are eager to find a way to help. Here is your chance.

Sisters by Heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.)

We hold Sisters dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email sbhmoms@gmail.com with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,