Weekend Fun

This weekend we decided to forego our fantasy suite (i.e. housecleaning) and just enjoy our time together - a decision momma bear will likely regret on Monday morning.

Friday night's sunset set the mood for a weekend of fun and relaxation.

As you will see, Zoe has become increasingly more serious these past few days. I think she knows, or senses the looming trip to Philly. While I attempted to give her meds on Friday night, she grabbed the syringe out of my hand and refused to let go. I grabbed the camera and tried to snap a few, but with only one hand in play, didn't get the best photos. But you get the idea...



Emmy and I enjoyed another day at Harper's Landing. We're going to attempt another visit before we leave for Philadelphia, but you know how that goes...

(Emmy learning to blow bubbles in the pool.)

Now that football season is ramping up, Emmy and I pulled out our jerseys for the Cardinal's game on Saturday.

Mexican food and football, who could ask for anything more?


On Sunday, the girls were looking awfully cute, so we took a few sister pics. Zoe wasn't too thrilled, but she cooperated none-the-less. As soon as we sat Zoe in Emmy's lap, Emmy looked at Zoe and said, "Oh Zoe, cute outfit!"




It wasn't until I took these pictures of the girls that I really notice how "blue" Zoe is. Sitting her next to an unbelieveably pale Emmy doesn't help, but wow. She looks like Violet Beauregarde after she turns into a blueberry in Charlie and the Chocolate Factory.

Soon, very soon, her color should improve. Not 100% improvement, but as her cardiologist says, "small steps still go forward."

The Napping House

The only thing worth stealing is a kiss from a sleeping child.

~ Joe Houldsworth

Philly Love

Bring it, Philly.

Two weeks from today, Caleb, Zoe and myself will be on a plane headed to Philadelphia. I love Philadelphia. Philly will always have a piece of my heart. Philadelphia saved my baby girl.

With that said, I have mixed emotions about this trip. On one hand, I can't wait to get there. On the other, I don't want to go anywhere near that hospital. As one fellow heart dad put it, "Hospital, you and I are developing a love/hate relationship."

I wish to fast-forward to one month post-op. Back home and happy. I don't want the cath lab. Zoe and the cath lab don't get along very well. I don't want to see her in pain. I especially don't want to sit with my hands tied while she suffers through Glenn headaches - a very common post-op symptom due to increased blood flow to the brain.

Our next two weeks will be hectic - preparing, mentally and physically. My lists are already mounting, much to Caleb's chagrin. Plane tickets, check. Portable oxygen container, check. Hotel reservations, check. At least the big ticket items are "checked." Its the odds and endsy stuff that seems to trip me up. Those last few to do items that never seem to get crossed off the list. Doesn't that drive you mad?! Or is it just me?

So, look out Philly, here we come. As much as we enjoyed you for two months in the Spring, we'll have to take in our favorites in one-eighth of the time. Hello Bassett's Ice Cream. Hello Jim's Steaks. Hello Boylan's soda. Hello DiBrunos. Hello Distrito Pineapple Margarita.


Ahhh, just look at that margarita. So good, someone took a picture of it!

Hmmmmm, I'm discovering a theme here. It's no surprise Philly was named the Fat Capitol of the United States a few years back. Hey, if anyone is entitled to indulge in a little emotional eating, I think I take the cake!

Our Story

A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears. For more details, click here.


And so, without further ado, our story goes a little something like this...

My husband, Caleb, and I live in Phoenix, Arizona. After 10 years of marriage, we had our first child, a daughter named Emerson Kennedy. We fell in love with her immediately and had no idea just how much a child would change our lives (in a good way!) We wanted to continue to grow our family. Five months after Emerson turned one, we learned that baby # 2 was on its way. We were so excited and the only thing on our minds was, "a boy or girl?" On December 9, 2009, at our level 2 ultrasound at 19 weeks gestation, we heard the devastating news - "something is wrong with the baby's heart." From that moment forward, we entered the CHD community as expecting parents to an HLHS child - an extremely challenging and frightening endeavor. How was our baby going to survive with only half a heart? What will her quality of life be like? Just a few of a million questions swirling around in our minds.

Our research took us to Philadelphia where we met Dr. Thomas Spray and the wonderful people at the Children's Hospital of Philadelphia (CHOP.) We knew they would be the ones to save our unborn child. Afterall, CHOP's motto is "HOPE LIVES HERE." We put our faith and trust in them. We packed up our lives for two months and relocated to Philadelphia.

On May 11, 2010, I gave birth to Zoe Madison in CHOP's Special Delivery Unit. I am one of the lucky ones who got to hold Zoe immediately after giving birth. We anticipted her first open heart surgery (the Norwood) would take place a few days later. As you know all too well, things don't always go as planned with our CHD kiddos. On May 12th, at 6:30 a.m., while in the recovery room, Caleb and I received a phone call from the on-call cardiologist. Due to pulmonary overcirculation, Zoe's surgery would take place that morning. Less than 15 hours after entering this world, Zoe underwent her first open heart surgery.

We met with Dr. Spray and held our baby girl for what may have been the last time. We waited, impatiently, for updates from the operating room. During the surgery, Zoe's innominate artery kinked, requiring a patching of her shunt/artery connection. She recovered quickly post-operatively. She attempted to yank out her vent (after one unsuccessful extubation) and managed to remove the NG tube on her own - never needing it again.

Zoe's anticipated discharge, just 2.5 weeks post Norwood, was complicated by the narrowing of her shunt at the patch site. Dr. Spray anticipated the possibility of a complication and ordered a cath prior to discharge. Thank God he did. Zoe's shunt/artery connection was severely narrowed - with little to no clinical signs. Two stents were placed during her catheterization. Unfortunately, Zoe developed two blood clots in her left leg post-cath. She underwent TPA therapy to attempt to clot bust; only slightly breaking up the clot.

When we were finally discharged, on June 2, 2010, Zoe's clots remained. We now had to give her Lovenox (anticoagulant) injections to keep her blood from clotting near the clot site and in her shunt.

After 59 days in Philadelphia, we returned to Arizona. We returned to our old house, but entered a new life - a CHD life.

And, so far, so good. Zoe is awaiting her Stage II/Glenn which is scheduled for September 14. As all of my fellow heart moms can relate, Zoe is our hero. Her strength amazes me. I am encouraged that "life after the Glenn" is wonderful, "almost normal" as one heart mom put it. I can't wait. I've never been a big fan of patience.

If you so desire, feel free to follow our family blog and check in on Zoe's progress as we approach our "almost normal" life.

Love to you all,
Stacey (Zoe's proud mommy)

Then and Now (and Back)

We've come a long way. Three months ago, we spent our days and nights at the Children's Hospital of Philadelphia with Zoe. Our daughter, our fighter, our hero. It is ironic that one tiny baby, born with half a heart, can enlarge the hearts of so many.

Zoe Madison Lihn, born on May 11, 2010 with a severe congential heart defect (HLHS - Hypoplastic Left Heart Syndrome), underwent her first surgery at 15 hours old. The photographs we took of Zoe following her surgery will forever remind us to cherish each and every day we have with our children and how precious and fragile life is. Caleb and I have done our best to chronicle our journey on this blog and intend to continue to do so.

THEN...(MAY 2010)

Zoe's first open heart surgery, the Norwood/Stage I
(Post chest tube removal and chest closure.)

NOW...(August 2010)

Today, awaiting her second open heart surgery scheduled for September 14, the Glenn/Stage II

My anxiety is snowballing, building with each day as we near September 14. Knowing we must hand our precious child, whom we've now had months to bond with, over to anesthesiologists and surgeons. Knowing how far we've come, only to be back to the "then." I picture in my mind, having to see her again with a fresh wound, a chest tube, wires and vented. That image makes me numb, except for the lump in my throat and palpable aching heart. I hate to go back, but we have no other choice. We knew, heading into this, we'd endure an emotional and physical rollercoaster.

I under-estimated the rollercoaster.

This rollercoaster is much faster, more jerky and painful than I anticipated.

After the Glenn, we're supposed to expect a slower paced rollercoaster, a steadier rollercoaster. Perhaps even a rollercoaster where you can expect the turns and not hit them head-on at 100 mph.

I certainly hope so. I could really ditch this Steel Dragon and hop on the Dumbo ride.

The Phone Call

Well, today it happened.

After three nights of serious insomnia, I attempted to take a nap on the couch. With both girls napping, I took advantage of the potential one-hour window. Within minutes of laying down, the phone rang. Not just any ring, the long distance ring tone ring. The three short rings instead of the local, regular ring. Could it be? Could it be CHOP calling? Next, I hear the caller ID's robotic female voice say, "Chil Hosp." Caleb was already sprinting over to grab the phone. I popped up like a meerkat over the sofa. For those of you who don't know what a meerkat is, I looked like this...

I sat, staring at him as if I could overhear the conversation if I concentrated on his facial expression hard enough. Then he says, "Stace, September 14 or September 20?" Um, hello. Is that even a question - September 14!

So, there you have it. Zoe's Glenn is on the books. We will travel from Phoenix to Philly on September 9 and arrive in Philly late that evening. We'll have to stay in a hotel until Zoe is admitted because the Ronald McDonald House does not accept families until their children are admitted as patients. Zoe will see Dr. Szwast, her Philly cardiologist, on September 10th for an EKG, ECHO, chest xray and blood tests. We'll have the weekend to relax, as best we can. Monday morning, September 13th, Zoe will undergo her heart catheterization and be admitted to CHOP. The next morning, September 14th, Dr. Spray will perform Zoe's Glenn.

Writing "Glenn" on the calendar felt so good. I even made up a little "surgery dance" and performed it by myself in the bedroom. No one saw me. I don't even remember how it went, and it was only a few hours ago. My adrenaline is still in high gear.

I texted Zoe's cardiologist here in Arizona: "We have a surgery date!" and let him know the details. He quickly responded with: "Less than 1 month...and counting! Let's keep up some good weight gain." Of course, he buzzkilled my excitement, reminding me we still have a long road to hoe.

Little does he know, Zoe's recorded weight for today. The recommended 5 kg mark...

(A congratulatory handshake from Dad for a job well done!)

Go, Zoe, Go!!!

As always, thank you for your continued support and love for Ms. Zoe.

The Lihns

The Gift of Life

A few days ago, I wrote a long-overdue letter, a letter of thanks to the family who donated their loved one's organs and gave Zoe the chance to fight. Zoe did not undergo an organ transplant, however, a complication during her Norwood/Stage I surgery required the use of donated heart tissue - an allograft.

Caleb and I are both registered organ donors; we registered several years ago. Since Zoe's birth, we realize the importance of our decision. If you're not a donor, please educate yourself and consider the difference you could make in another families' lives. Each organ and tissue donor saves or improves the lives of as many as 50 people. To find out more about organ donation or to register, click here.

Please take a minute and share in our gratitute to the family who gave Zoe her gift of life.

Dear Donor Family,

There does not seem to be a perfect, or right way, to express our gratitude to you and your family. Please know that we very sorry for your loss.

It may seem like a small thing to many, the gift of donated tissue, but this gift has given our newborn daughter a fighting chance. Our daughter, Zoe, was born with a rare congenital heart defect – Hypoplastic Left Heart Syndrome. Essentially, she has only half a heart. With medical advancements over the past two decades, Zoe’s physicians reconstructed her heart.

She underwent her first (of a series of three) open heart surgeries at 15 hours old. During that surgery, her cardiothoracic surgeon used your generous gift of heart tissue to essentially rebuild her right ventricle to perform the work of both ventricles. Without compassionate families like yours, our daughter would not be with us today.

We do not know if our gratitude can help your healing, but we want you to know that you and your loved one made our lives better. Zoe is now 3 months old and awaiting her second open heart surgery. She is happy and brings us joy each and every day. We hope that her smile can bring you a sense of peace and that her eyes relay her gratitude – of which someday she’ll understand to the deepest depths, far within her heart.

Please know that we will always cherish your gift and remember your loved one.

With warm regards,

Zoe’s grateful parents

Prayers and Bottles

Tonight I sat in my home office, diligently working away. Caleb was in the kitchen, armed with a bottle, feeding Zoe.

Rewind to earlier this morning… A text message to the cardiologist notifying them that Zoe has not gained weight for the past three days – a difficult thing to swallow (pun intended) for me. The response we received, of course, included a threat of NG tube insertion once again. Being so close to the Glenn, I do not want Zoe in or near a hospital for this procedure. The last thing we need is for her to contract some (other) virus or bacteria. The cardiologist gave us the option to increase her caloric intake with fortification to 27 calories. We agreed, knowing in the back of our minds the increase in fortification also brings increased risk of reflux and gas. Reflux and gas or NG tube: simple decision, but also a catch 22. Increased reflux will likely prevent Zoe from eating the same volume and hence, a decrease of weight gain regardless.

Ok, fast forward to tonight… Caleb is in the kitchen feeding Zoe. Mommy is working in the den. I hear Zoe begin to cough. I cringe, knowing what typically comes next. Vomit. I hear Caleb frantically trying to calm Zoe. “Shhhhh, Shhhhh, it’s okay Zoes, Shhhh, Shhhh” (we call her Zoes, phonetically ZOZ.) I begin praying. Hard. I can hear my frantic plea in my mind, as if I'm speaking it aloud. “Please God, don’t let her vomit. Please, let her keep the bottle down. Please God.” I even begin a “no vomit” mantra in my head. At this point, I'm pretty sure I’m sweating.

In that moment, I realized why I’m so anxious (and on edge and cranky and frustrated) all of the time; why my neck feels like cement most of the day. I’m praying like a mad woman that my daughter will not vomit, that she will take an entire bottle. How many parents worry about this every 2.5 to 3 hours during the day, 7 days a week? And this worry is just the tip of the iceberg. As I sit here typing this blog entry, I want to cry. How much longer can I endure this stress? Do I need to institute a meditation practice or get my butt back to practicing yoga in order to relax? Great idea, but when do I have time for that? I barely get work done and am lucky to get 5 hours of shut eye per night.

Now, I feel like I need to apologize to you and to Zoe for wallowing. I'm sorry.

I'm sorry, Zoe. I love you and would endure countless loads of stress and worry for the remainder of my life. I wish someone could promise me a lifetime of such. I can't imagine the alternative.

I love you Zoe Madison. Please eat and gain weight. I know you can do it. You’re the strongest 3 month old I know.

And, just so you know, my prayers and mantra worked. Zoe kept her bottle down. This time. Three hours from now, I’ll be saying another prayer and repeating my mantra – “no vomit… no vomit… no vomit.”

Busted Out

For the last week or so, I've felt cooped up like a chicken. Don't get me wrong, I love spending time at home with my kiddos, but day after day of not getting out seems to have taken its toll.

Translation: Cranky mommy.

Since Zoe only leaves the house for doctor's appointments and visitors are still not allowed, I needed some time away - time out from under this roof.

Yesterday, I busted out. Emerson and I had a play date with Robyn (my play date) and Sedona (Emmy's play date.) Mommy enjoyed her much needed few hours of fun.

(Sedona, Emmy and I shakin' our booties in the pool.)

(Oh, to be a silly little girl again...)

(Emmy and Robyn - my play date partner.)

Later in the afternoon, Caleb and I got out of the house together for the Cardinals game. Thanks again mom and dad for watching Zoe and Emerson. Really, we don't know what we'd do without you!

As usual, we were running late. I mentioned to Caleb that he should take a quick pic of me out in front of the stadium. He looked at me like I was nuts and said, "Kickoff is in 5 minutes. Maybe next time." We enjoyed the game, even though we both question what is to come for our Cardinals this season.

At the same time I sat enjoying the football game, my mind never stopped racing. I'm constantly thinking about Zoe, my friends, of heart moms who've lost their babies. I realize different parts of myself each day in my new CHD life. I'm much more compassionate and attentive. I see people. I really see people. I look into stranger's eyes and wonder what their life is like, what struggles they're working to overcome.

After I returned home, I noticed Emmy's play room was picked up. I looked around the room, noticed a piece of art which I'd hung a few years ago and read its message. I took a deep breath, stood teary-eyed and smiled in that moment.

It really is that simple.

Good News, Bad News

The good news is...Zoe's made weight. Much like a boxer makes weight for a professional fight, Zoe needs to make weight for her next fight - the Glenn/Stage II surgery. Research shows that infants weighing 5 kg (or 11 pounds) experience optimal outcomes post-Glenn. Zoe is now 4.95 kg (or 10.89 pounds) and still has at least 3 weeks before undergoing her second open heart surgery. Yay Zoe! Don't get me wrong, it ain't easy. As any heart mom will tell you, it is a stressful job - trying to get your CHD baby to eat. I'm so proud of Ms. Zoe and the fact that she's done it all on her own, with no tubes!!! She is one of few HLHS warriors that make it on oral feeds alone. I gave her props today and she smiled right back at me with a look like, "yeah, I know."

(A long overdue thanks to Deb and Mary for the Zacky Hand!)

Now, for the bad news...a virus. For the past week, Zoe's bleeding after her Lovenox injections increased. She typically does not bleed or bruise, however, lately things have changed. Any change, as I've harped on before, is not a good sign. After a week of "you may just be hitting a vein/artery" explanation, I called CHOP's hematology department for some advice. They took my concerns rather seriously and recommended Zoe get blood drawn - a CBC and Anti-X-A (anticoagulation) testing to check her platelet count and Lovenox levels. We all know how much mommy hates taking Zoe to get her blood drawn, so daddy was in charge. Caleb and Zoe left the house and I felt pretty certain that all would be fine.

Each time Zoe needs blood drawn, we have to request a specific nurse at her pediatrician's office...Lisa. Lisa knows Zoe quite well these days. She knows that Zoe is stingy with her blood, that her right hand is the only place she'll give it up and only via catheter. Even though Lisa knows the tricks of the trade, Zoe still screams like a mad woman. (Example A: why mommy doesn't handle blood draws very well. Way too stressful. She's been through enough already.)

Caleb called me immediately following the blood draw. Thankfully, the pediatrician's office has its own lab and returned the CBC results right away. All Caleb needed to hear was "a virus" and panic set in. He texted the cardiologist who requested a copy of the CBC asap. Then, he called me to give me the bad news. Great, now we're both in a panic. We know all too well how one little virus can threaten the lives of heart babies. We've experienced the loss of a heart baby recently, due to a virus, and immediately thought of sweet Gwenyth when I heard "virus." Our cardiologist (here in Phoenix and at CHOP) were emailed the results immediately. Much to my surprise, neither of them were "too worried." Zoe's white blood cell count, platelets, hemaglobin and hemocrit were normal. The lymphocyte (one type of white blood cell) was elevated which does usually indicate a virus. Zoe is not showing any signs of illness and continues to eat like a champ. We're on high alert (when are we not?) watching for any slight changes in her behaviors.

Long story short, more prayers and happy thoughts please. We need Zoe to stay healthy as a horse until her Glenn in September.

Oh, and remember in my last blog entry when I mentioned we were going to drive our cardiologist's secretary mad. Well, we must've succeeded. Knowing tomorrow is Friday, the day we typically call for a surgery date, our cardiologist pre-empted my call with a short but sweet email, letting me know that she called the scheduling center and they still do not have a date for us. She stated that Zoe will need a pre-op appointment and a cardiac cath a few days prior to surgery. The cardiac cath department is holding up scheduling and she will know "in the next two weeks." TWO WEEKS!?!?! Does she realize it's mid-August already?! Okay momma, breathe :)

So, we continue to wait. And Hope. And Pray. And ask that you do the same.

And to end with some great news...Zoe's HLHS friend from CHOP, Jacob, underwent his Glenn on August 5th. He amazes all of us and sprinted out of the hospital in 6 days. Can you imagine? A 4 month old undergoing open heart surgery and bouncing back in 6 days? Amazing. Zoe and I had a nice sit down talk and I told her that Jacob is setting the bar awfully high. Again, she smiled right back at me like, "yeah, I know."

Love to y'all, as always, from Mommy and Zoe.

Anxious Much?

Zoe returned to her cardiologist today (who has been on vacation for what seems like an entire month.) He'd been kept in the loop regarding the higher velocity issues, suspicion of narrowing and her higher sats. He performed a physical exam and took some vitals and thinks she looks pretty darn good. When listening to Zoe's heart, he noticed the right-side flow (where her shunt is) sounds slower than the left flow. Normally, he would be a little more concerned but since Zoe is on Lovenox, the risk of clotting is lowered significantly. Being on the Lovenox injections is a sort of "life insurance" policy.

With an uneventful cardiology visit today (which we love...), Zoe doesn't need to return for another 2 weeks. Keep sending happy thoughts and prayers to the powers that be; she's on her way. Next step, Philadelphia for her second open heart surgery!

So...what's the deal with Philly? Our cardiologist's secretary at CHOP will be sick of us in no time. We're extremely anxious to hear when Zoe's Glenn will take place. Today, and last Friday, we called her in hopes that she'd give us Zoe's surgery schedule, but no luck. The September schedule "has not been made yet" and we'll have to wait until next week. For some reason, having a date to mark on my calendar is soothing.

Until we hear something, Zoe and I will relax and breathe and be strong. Isn't she the best?!

And a big thanks from Zoe to those of you who have donated and/or joined Team Zoe for the Congenital Heart Walk in November. If you haven't, no worries. There's plenty of time to contribute!

http://congenitalheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=429992&lis=1&kntae429992=7E8CFB816F384E9F96FEF1FB7FE30D71&supId=0&team=3807439

Life as a Heart Mom

In the late afternoon, on December 9, 2009, I heard the words that forever changed my life. “I have bad news for you today…there is something wrong with the baby’s heart.” The next several minutes, hours, days and weeks are quite a blur. Several phone calls to physicians, hours upon hours of internet research, cardiac consultations and lots of tears are all that I recall. As education and direction from physicians and surgeons emerged, so did a ray of sunshine. And Hope was Born.

Caleb and I knew we had to give Zoe the best chance at life. We packed up our lives for two months and traveled to Philadelphia to become new parents. Yes, we already had one adorable toddler, but she didn’t require this new type of parenting we’d soon learn – monitoring, wound care, medications, nursing, weekly doctor visits and enormous amounts of stress. We were becoming new parents to an infant born with only half a heart.

I gave birth to Zoe Madison on May 11, 2010 at 4:46 p.m. at the Children’s Hospital of Philadelphia. At that moment, another “Heart Mom” was born.

(Just minutes after Zoe joined us on the outside...)

What is a heart mom? Now that is a loaded question. Simply put, a heart mom is the mother of a child born with a congenital heart defect. But there is so much more to us than that. We are the strongest women in the world. We are grossly empathetic. We love unconditionally. We experience the greatest joys, the worst fears and heartbreaking sadness on an all-too-regular basis. We look out for each other and comfort each other at a moment’s notice. When one of us loses a child, we all lose a child. We remain acutely aware of minute changes in our child’s appearance and behavior. We trust and hope and pray. We are thankful for each day we spend with our children. We grieve the loss of normalcy – some of us longer than others. We are tireless supporters and advocates for our children. We fight for awareness. None of us know when our best day could be our worst day. We stare death in the face. We have good days and bad days. We get frustrated and angry. We are complex and complicated. We are fighters and survivors, just like our CHD warriors.

Immediately after giving birth to Zoe, I was allowed to hold her for several minutes – ten to be exact. Less than 15 hours later, Zoe underwent her first open heart surgery. We met with her surgeon pre-operatively and put all of our trust into one human being, Dr. Thomas Spray.

Zoe survived surgery and fought. She recovered rather quickly with only a few setbacks. After 59 days in Philadelphia, we boarded a plane and came home.

Since being home, we’ve settled in and have grown accustomed to our new norm. Our one and most challenging goal is to keep Zoe safe and healthy. We check her vitals (heart rate, pulse ox, and weight) every day and administer medication. We chart her intake and report to her cardiologist on a daily basis. All of this, we hope, will get Zoe to her next surgery.

As a heart mom, I fear the day I have to hand her over, once again, to Dr. Spray. That day is rapidly approaching. Another trip to Philadelphia. Another open heart surgery. Another set of known complications. Our journey is far from over. Nor are the lessons we have yet to learn.

Zoe has come so far. Surviving the several months in between Stage I and Stage II surgeries remains to be the most challenging for HLHS babies. As we come closer to this next chapter, please keep Zoe in your thoughts and prayers. After Zoe's second surgery, we will need to be extremely vigilant in our efforts to keep her healthy. Many infants who suffer illness post-Glenn require heart transplants. The September surgery date will occur as flu and RSV season is ramping up. Zoe will need to be a bubble baby once again. We look forward to the day when we can emerge from the house, together, as a family. We look forward to the day when all of you can meet and see for yourselves, our CHD warrior, Zoe Madison.

Since becoming a heart mom, I am inspired, and in some sense feel responsible for raising awareness of congenital heart defects.

Congenital heart defects (CHDs) are the #1 birth defect and are responsible for more deaths in the first year of life than any other birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect, which translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)

Funding for CHD awareness and research is abysmally low. For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects. With CHDs being the most common birth defect, I’m certain we can do better than a portion of one penny!

And so, in my first attempt in raising awareness and research funds, the Lihn family will participate in the inaugural Congenital Heart Walk of Phoenix, sponsored by the Children’s Heart Foundation and Adult Congenital Heart Association. Please consider joining “Team Zoe” on Sunday, November 7, 2010 at Tempe Diablo Stadium or lend support by making a donation for Team Zoe!

http://congenitalheartwalk.kintera.org/faf/home/default.asp?ievent=429992

Find our page by linking to "Top Fundraisers" on the right (Stacey Lihn) or to Walk with us, link to “Team Zoe” in the Team Rank box.

As always, thank you. We are able to continue this fight with your thoughts, prayers and continued support.

Raise Awareness, Spread Hope.

Love,
Stacey, Caleb, Emerson and Zoe

Sigh of Relief

For the last few days, Zoe had us on high alert. Our alert levels are somewhat similar to Homeland Security - high alert and very high alert. Rarely do we have time to breathe a sigh of relief, until today.

Zoe's oxygen sats, for the past few days, skyrocketed to 96% - definitely not the norm or a good level for a Stage I hypoplast. With the increased velocity of blood flow found on last week's ECHO, elevated sats were one of the symptoms to watch for, indicating a narrowing (coarctation) of the aorta.

After reporting Zoe's high sats to her team of cardiologists over the weekend, an impromptu ECHO and blood pressure check visit was in order. And so, this afternoon, we received some reassurance.

Zoe's ECHO looked similar to last week with the increase in velocity, however, her blood pressures did not indicate that immediate intervention (i.e. cardiac cath or balloon angioplasty) is necessary. The cardiologist explained that Zoe's rebuilt aorta (the ascending aorta) is much larger than her native aorta (the descending aorta) and could naturally be causing an increased velocity and not a true narrowing. Either way, we're just happy we don't need to board a plane and head to Philly sooner than planned. This morning we were debating, if intervention was needed, whether to allow the angioplasty to take place in Phoenix, or get our butts to CHOP asap. Thankfully, we don't have to worry about that.

Please continue to pray that Zoe's aorta remains unchanged, or improves, over the next several weeks. Sometime next week, we will get a date for Zoe's Glenn. September can't get here fast enough!

We return to the cardiologist on Friday for another check of Zoe's vitals. Wow, two cardiology visits in one week. I think we deserve some sort of frequent visitor punch card. Nine visits and you get the next ECHO free.

Thanks for all of your support and prayers. In addition to Zoe, please keep the following CHDers, who we've come to love, in your thoughts and prayers:


Jacob who is undergoing his Glenn, at CHOP, on Wednesday, August 4th.

(Jacob and his mom, Kathy, in front of CHOP.)

The Marrone family who suffered the loss of their CHD warrior, Mia Grace, on Sunday, July 25th.

(Mia Grace Marrone, April 29, 2010 - July 25, 2010)

And Emma who continues to struggle while awaiting her new heart.

(Emma, a true CHD Warrior!)

Please check back soon for information on TEAM ZOE who will be participating in Phoenix's Inaugural Congenital Heart Walk. There will be opportunities to donate and/or join TEAM ZOE on November 7th. Mark your calendars. Deets to follow...