Bedtime

One of my favorite times of the day is when the girls are bathed, in their pajamas and ready for bed. And, not just because that means mommy and daddy get to relax for an hour or two.

Recently, Emmy has graduated to her "big girl bed" and we snuggle in together and read books. At nearly age 3, Emmy's manipulation skills are at an all-time high. Many nights she'll snuggle up to me, give me a hug and during our embrace, sweetly say, "one more book, please, mom... I love you."

A few nights ago, the girls weren't feeling so sweet. They were fighting over books, poking each other in the eyes and being, well...sisters. It was so "normal." I grabbed the camera and started snapping photos.

Here they are, my sweet girls, being sisterly. I honestly didn't know if I'd ever see this day. And so, I'm ecstatic to be able to share them with you.

(My two stinkers, acting sweet!)

Empathy

I've always felt like a sympathetic individual, which I admire about myself. But, since Zoe's diagnosis, birth and repeated recoveries, I've become an empathetic individual.

Empathy is the ability to understand another person’s circumstances, point of view, thoughts, and feelings. When experiencing empathy, you are able to understand someone else’s internal experiences.

This past weekend, my heart community suffered a significant loss - the loss of fellow HLHS warrior, Travis DiCarlo. I've come to know the DiCarlos well over the past year. Travis' mom, Nicole, is one of my Sisters by Heart.

When I heard the horrendous news of Travis' struggles post-op, him coding and two-hour resucitation efforts, I became overwhelmed with a cyclical emotional rollercoaster - shock, anger, sadness, fear, denial. In that moment, I happened to be surrounded (thank god) by two fellow heart moms that I met in Philadelphia. For us to be together in that moment was a gift. We cried. We sat silent. We argued. We expressed the range of emotions we all felt in that moment. We snorkeled in the vast and calm ocean and remembered Travis.

My heart aches for Nicole and Roger. My heart aches for Addison, Travis' 2 month old sister. This is a photo Nicole and Roger shared, a photo taken just before Trav's open heart surgery. What an amazing family. What an amazing boy.


I empathize with Nicole. I feel her pain, as if it were my own. Being a member of this heart family is, like everything else, a rollercoaster. My heart family represents my worst fears, and at the same time, my greatest treasure. Without them, I would have no one who truly understands how I feel on a day-to-day basis.

I was asked the other day by a friend if there was "light at the end of the tunnel?" I was not sure how to answer this question. I suppose it depends on your definition of "light." Zoe's heart will never be whole. I will always worry about her heart growing tired. But, yes, I do believe there is light. Will I ever be able to grasp it? I hope so.

I think the better question is: Is there an end to this tunnel? Unfortunately, this tunnel is long. This tunnel is exhausting.

We heart families live in a world of unknowns. Medicine is evolving. Our children would not have survived two decades ago. We walk in this tunnel together, hoping for the best - but the honest to god's truth is, most of us expect the worst.

I think the best way to survive in this tunnel is to break down some of the bricks and allow light to come in, as often as possible. Somedays, it is harder than others.

Travis was the epitome of love and light. He brought so much joy to many heart families through his pictures, videos and pureness. Trav would want the light to shine through, lots of it! So, for Trav and the DiCarlos, let down your walls and shine!

We love you, Travis. Always.

The Sick House

Sorry it's been so long since I've posted any updates. Our household has been struck by a nasty bug. Emmy started two weeks ago and we've just been passing it around to each other. Thankfully, Zoe was sick only a few days (with fever.) She's been congested but seems to be fighting the virus off better than the rest of us. (Thanks to a few things I'm sure: mommy's breastmilk and the ridiculously expensive Synagis shots to help combat RSV.)

With Caleb and I running fevers, we shipped Zoe off to my parent's house. I'm sad to not have her here with me, but need to keep her safe (and get some rest.) Zoe had a cardiology appointment today and it was hard for me not to attend. I didn't want to be one of "those parents" who walk into a pediatric office sick, so my parent's offered to take her. Of course, I had them call me when Dr. Stock came in for his consultation.

So, how is Miss Zoe? She is GREAT! Her EKG, normal. Blood pressure, good. Sats, great. He listened to her heart and said it sounded wonderful. I sprayed my list of questions at him and couldn't be more pleased with her check up. She doesn't return until April 22nd. At that time, she'll have an ECHO to check both her function and the growth of her vasculature. If her function looks good, Zoe can come off her Enalapril! She is doing so well; I couldn't be more proud of my little CHD warrior. She is just over 15 pounds, putting her at 5% on the weight/growth chart. As long as she continues on that same curve, Dr. Stock is happy. Given Emmy's growth (at 5% weight on a good day,) it is not abnormal. As long as she's gaining, we're happy.

Dr. Stock suggested perhaps I visit the doctor (again) and get swabbed for RSV. So, this afternoon, I went to Urgent Care for a not-so-gentle swabbing. They didn't mess around after I spread some CHD awareness and ran the gambit of tests - flu, strep, viral panel and CBC. The flu and strep swabs were negative and CBC normal. The viral panel will take 3 days and I'm praying that RSV is NOT detected.

As soon as we're all healthy, Zoe will be evaluated by an early intervention program. I'm thinking she could definitely use some physical therapy, if nothing else. Many of her HLHS comrades have already started PT, OT and speech therapy, so it's definitely time to have her evaluated. The descrepancy, developmentally, can be two-fold - due to cognitive impairments from bypass during her surgeries, or more simply, due to laying in a hospital bed post-surgeries and being "babied" afterwards. Who wouldn't "baby" their warrior post-op?!

Alright, time for momma to get some more rest. I just had to share the good news about Zoe's cardio appointment today. What a great visit during CHD Week!!!

Letter to the White House

For those of you who have not heard, President Obama proclaimed February 2011 as American Heart Month. While this proclamation is well-intentioned, President Obama omitted over a million Americans who are more than deserving of some respect and recognition. And so, I, along with several other heart moms and dads, sent letters, emails and made phone calls to the President and White House staffers over the last 48 hours.

My words to the White House:

As a staunch supporter of President Obama, I was disappointed to see that his Proclamation of American Heart Month 2011 gave absolutely no recognition to children and adults living with Congenital Heart Defects. Part of President Obama's health care reform includes the Congenital Heart Future's Act, which is desperately needed to advance awareness and research of CHDs - the #1 birth defect in our great nation.

My daughter, Zoe Madison, was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. Her left ventricle is underdeveloped and nonfunctioning. She's had two open heart surgeries and will require a third before her 3rd birthday.

CHDs affect one in 100 births and are the leading cause of death in infants. Please, do not let CHDs go on as a silent killer for our children. Give my daughter, and the millions of Americans (both living and those that lost their battle) with CHDs their due respect - include and acknowledge them in the Heart Month Proclamation. They are heart warriors and deserve the respect of our nation's leader.

Sincerely,

Stacey Lihn


If you'd like to support the congenital heart defect community, please let your voice be heard by sending an email to the White House or call its comment line at (202) 456-1111.

And remember, Congenital Heart Defect Awareness Week is February 7th through the 14th. What are you doing to raise awareness for the Millions who are so-easily (and sadly) forgotten?