This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Tuesday, May 3, 2011

Appreciating Life

Tonight I am appreciating life a little more. I am a little more thankful. I am a little more mindful of the blessings in my life. Especially my children. My healthy children. Scarlett included.

Last week, a heartmom friend of mine named Abby had to say goodbye to her son, William aka "Will" succumbed to Congenital Heart Disease. He was one month older than Scarlett. He had numerous health challenges, among them a CHD and Down Syndrome. He struggled through battle after battle, and would come out succeeding time after time over the last two years. Will was a fighter. Will was a miracle.

Last Monday I received news that William had "earned his angel's wings", as we say in the CHD world. He had passed on. He was now an angel. His struggle was over. His fight on earth was done. He was no longer suffering, no longer on a ventilator, no longer connected to tubes and wires. No longer fighting for his life.

Does that mean he lost?

He fought for so hard, so long. and now he is pain free, wire free, tube free. He is free. He is an angel.

I cried when I heard that he had died. I didn't think it would affect me as much as it did, but I'm not ashamed to say that I cried for close to 6 hours that day. I couldn't stop myself. I was heartbroken.  I kept thinking about his mom, Abby. I kept thinking about Scarlett. I kept thinking about how fragile life is, and how precious every child is. To cherish those moments because you never know when it will be your last.

Today was William's funeral. It was very painful. There was a large turnout. A lot of heartmoms were there, and a lot of medical professionals from St. Joseph's Hospital were there. Beth was there. and I could count at least 10 other heartmoms, they even mentioned us during the service. I remember at Ethan's funeral, Heidi saying that she was introduced to this sub-culture of the heartworld (CHD community)

Many people don't know about us.   Heartmoms.  Heartdads.   Heartkids.

How I wish I wasn't part of this community, but I am so blessed to be a part of it, and to have met and know the peole I have met and known as part of being a CHD mom.

It is not for me to question why somethings happen. I will never know why God choses for some children to be born with life-threatening illnesses. But all I know is that parents aren't supposed to outlive their children. So, tonight I pray for Abby and the Olsen family who are suffering. They're missing their baby boy, their baby brother, their cousin, nephew, grandson.

Scarlett lost a heart friend, and we paid our respects today as he was laid to rest.  God Bless you, William Christian Olsen. May you live happy in paradise where your body is made whole again. Until we meet again.

Thursday, February 24, 2011

Look Who's 2!

 Well, it's hard to believe that Scarlett celebrated her 2nd Birthday a week ago. Yes, my little heartbaby is officially in the "terrific" two's (I don't like to say terrible twos, because then you set yourself up for a temper tandrum throwing toddler).

We celebrated her ~actual~ birthday by taking her to Chic-Fil-A to play on the indoor playground. She was like a little monkey and for the first time, I saw her actually hanging from the little gym like they were monkey bars.  .  . Here's a pic:

Ever since her stent 2 weeks ago, she's had so much energy. It's very noticable to me and Todd. She's like the energizer bunny now.... she just keeps going and going and going. Even when she's sick with a booger nose and a lingering cough (like for the last 5 days), she still runs and runs and plays and plays. It's like now that she has more blood flow to her left lung (via the stent in her LPA), she's just a little ball of energy now. Even more than before, because she was always a toddler "on the go".

We took her to the cardiologist today and we got great news! The echocardiogram looks fantastic and the bloodflow through the LPA looks great. In fact, she's doing so well, we can wait THREE whole MONTHS until her next appointment! So, for the first time ever.... I don't have to take her to the cardiologist's office for 3 months. Seeing as I've been taking her every month for the last 10 months, this is quite a big deal. I'm elated. and Scarlett is happy too. Look at her go:

This was her at the cardiologist's office today running all around the office. It's an action shot because she wouldn't sit still long enough for me to get a pic of her.  Okay, actually, she did sit still long enough for me to take this one:

Strangely, she had a major crying fit when Asia tried to do an EKG on her. It was strange. One minute she was smiles and happy, then on the turn of a dime (whatever that means), she was terrified and screaming and saying OWIE! OWIE!.. (when EKGs don't even hurt??!). My poor little daughter is definitely traumatized by the doctor's office. But overall she did fantastic today. The echo went well, the "vitals" went well (blood pressure, pulse-ox, temperature, height and weight).

Speaking of weight... I never posted before but at her pediatrician's appointment for synagist (the vaccine against RSV), Scarlett weighed in at 20pounds 0 ounces. I was so excited!  We were able to put her in a forward facing carseat for the first time in 23 months. (2 weeks shy of her 2nd birthday).  Well, today at her cardiologist's appointment (3 weeks since she weighed 20 pounds flat, she weighed 20 pounds 13 ounces!!! I'm beside myself with excitement and happiness for my baby.

She's still getting over a double ear infection and is a little fussy tonight (compared to her uber energy at Dr. Pophal's office this afternoon), but overall, she's doing grrrrreat! : ) Thank you for everyone's prayers for my little fighter.

Saturday, February 19, 2011

Ethan's Run 2011!

One week ago today was "Ethan's Run - Hope for Heart Defects". It was a huge success!

A few nights before the event, one of my fellow heartmom friends (who helped Heidi with organizing Ethan's Run) emailed me asking for a picture of Scarlett to use on the mile markers which were to be at each mile marker for the 1/2 marathon. I emailed her the picture on the right side of this blog. The one that says "I'm a heart surgery survivor" that was taken at the zoo last month.

She also asked for name, birthday and CHD diagnosis. Here was the final product:

They put Scarlett's info at Mile Marker #1, so all of  those participants who walked the 1-mile Fun Run were able to see her. It was great!! We stopped to take our picture near her mile marker as a group photo.

I had an AWESOME turn out for Team Scarlett! There were over 27 of us! it was like a sea of red t-shirts all there supporting my little heartbaby. I was so touched by the outpouring of support. Friends drove all the way from Tuba City, AZ (which is about 5 hours north of Phoenix), and Tucson (2 hours south of Phoenix) just to join us.

We had walkers, 10K runners, and even one 1/2 marathon runner all on Team Scarlett!

This is Scarlett with my friend Mickey. This picture was taken within minutes of Mickey finishing the 10K with three of her friends.   Go Mickey!!

  This is Scarlett. I pulled her in a wagon. We walked the 1-Mile Fun Run (Walk).

This is us walking. We were a little late, so we were basically walking alone since the crowd had already taken off before us. But it didn't matter, because we still walked and were still there spreading awareness for CHDs. I even bought 12 heart shaped balloons and taped "Team Scarlett' logos to them!

 This is my 27-member Team Scarlett!! What an improvement from last year, when there was only 3 of us  (me, Violet and Scarlett).  I hope we can get at least a 30-member team every year from now on. And that we get there on time next year too ; )

Friday, February 11, 2011

Team Scarlett

Team Scarlett's logo for Ethan's Run taking place on 2/12/11

It is CHD Awareness Week Day 5. Tomorrow is Ethan's Run - Hope for Heart Defects. It is a 1/2 marathon, or 10K, or 1-mile Fun Run. This is the second year that Heidi and Greg Skidmore have presented this event which benefits the Congenital Heart Foundation and families of the Scott and Laura Eller Congenital Heart Center.  Tomorrow a team of 25 of us will be walking in support of Scarlett and CHDs. Yes, you read that right! 25 people! From as far north as Tuba City, AZ and as far south as Tucson, AZ. Last year for Ethan's Run, I didn't have any support. I walked alone with just Violet and Scarlett.

So this year, I decided to at least ASK my friends, family and co-workers to walk with me. I said we could walk as "Team Scarlett" and I'd even get t-shirts made and everything. To my astonishment, I got takers. 25 takers to be correct. I can hardly wait! I am so excited to have so many people care about Scarlett and CHDs to come out to far, far, far east Mesa, AZ  in the early, early morning and in the cold weather to walk with me and Scarlett. : )

I will post all about it tomorrow after the walk.

This is the Ethan's Run logo.

Ethan Greg Skidmore 2/18/09 - 8/21/09 was born  one day after Scarlett. Ethan and Scarlett were hospital neighbors during their first open heart surgeries. That is when I met his mom Heidi. Heidi told me that Ethan was born with Hypoplastic Left Heart Syndrome (HLHS), which is the worst of the worst when it comes to CHDs. Not only is HLHS one of the worst CHDs, but Ethan's diagnosis was "very severe".  HLHS means that you are born with half a heart. One pumping chamber. It means the left side of your heart is so small that it is rendered useless.  Children with HLHS have to endure a series of 3 open-heart surgeries before age 5 to re-route the tubes in the heart to be able to funtion effectively.

Ethan spent the majority of his short life in the intensive care unit of St. Joseph's Hospital and lost his battle to CHD at only 6 months of age.  I remember the day I found out that Ethan had passed. I believe I cried for 5 hours straight. I can't believe that mother's like Heidi have to lose their children to CHD. I can't believe with medical technology that there wasn't enough they could do for him. I felt so sorry for her and for him. For the tremendous battle he fought.    And I couldn't help but think of Scarlett's fate as well. How much more time do I have with her?... : (   [I know I shouldn't think about things like that, but I do].

In Ethan's memory, his mother Heidi decided to leave a legacy and hold an annual 10K (and 1-mile Fun Run) called Ethan's Run. Last year, Heidi was able to donate $10,000 to the Congenital Heart Foundation raised from Ethan's Run.  She's an amazing heartmom.

There are sill 3 days left in Congenital Heart Defect Awareness Week 2011. Have you done your part to spread the word about CHDs?? Here are some facts to help you educate others:

* Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

* Congenital heart defects are the #1 cause of birth defect related deaths.

* This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

* 91,000 life years are lost each year in this country due to congenital heart defects.

* The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

* Congenital heart defects occur frequently and is often life threatening, yet research into them is grossly under funded.

*  Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

* The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.

* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

* The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.

* More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

* There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

* In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Learn the facts! Spread the word! Thanks!

Wednesday, February 9, 2011

5 1/2 Hour Heart Cath

We are home now. Thank God it was only an overnight hospital stay. I anticipate it to be a 24 hour stay, but you never now, so I also plan for a more than 2 day stay.

Well, the cath itself took a lot longer than I thought. A LOT longer than I thought. I was anticipating 4 hours. But secretly I was thinking it would take 3 or 3 1/2. So when it took 5 1/2 hours, I was starting to worry that something was wrong. The hospital kept calling me every hour to update me. But mostly it was an "Everything is okay, we're just checking her pressures".... then "Everything's okay, we're just sizing the stent".... then "Everything's okay, we're just running some tests".... So hour after hour after hour, I was thinking, ~everything's okay~, because that's what they kept assuring me.

Well.... little did I know that what *actually* happened was that the camera (that is permanently affixed to the floor in the room) that they use in the cath lab BROKE!.... and they had to call the repair man... and then they immediately called another hospital unit that has a mobile (portable) camera that does nearly the same thing as the "real" camera. It is a high-tech camera that they were able to use to complete Scarlett's cath. THANK GOD!

Because Dr. Pophal did not want to have her come out of anesthesia and cancel the procedure all together. So, (thank goodness), instead, he kept her sedated, with the camera/tube in her groin artery, and waited for the portable camera to arrive. Which took about an hour. I am actually G L A D they didn't tell me this, because I would have been flipping out with worry that my baby was under anesthesia for nothing!

In the end, Dr. P was able to do what he needed to do, and he had awesome results. Sometimes, it's almost child-like (in a good way), how Dr. P gets when he gets giddy/excited about great news in the cath lab. Well, this was one of those moments. When Dr. P saw the results of the echo that they did this morning, he was all but jumping up and down and said "This is exactly what I wanted to see!".
She looks miserable in this pic, but she was actually IV free and doing great.

So, before the cath, the pressure on her right ventricle was at 80%...this is bad. It should be around 20-25%. So, this was considered moderate to severe. After the cath it is now at 40% (HALF!!). Also, the left pulmonary artery was at about 2.5mm before the stent, and after the stent it is now at 7mm. Which means that the bloodflow to the left lung (which was at 28% before) has gone up too. We can't quantify/measure it yet, because that would require a lung perfusion study (which means more anesthesia)..., so that might be next on the horizon. But for right now, she's doing great and thank God we're home.

Thank you everyone for your well wishes, support and prayers. Especially Lou, Susan, Linda, Morrine, Mindy, Jolene, and Cherie. Thank you cousin Luke for watching Violet, auntie Melissa for taking Violet to school, and grandma Elva and Elsa for lighting candles and saying rosarys for my baby Scarlett.

Tuesday, February 8, 2011

Cardiac Catheterization No. 3

I write this post from the PCTICU of St. Joseph's Hospital and Medical Center in Phoenix Arizona. My not-quite-2-year-old daughter has been in the 'cath lab' for the past 3 1/2 hours. We held her hand while they put her under anesthesia around 9:20am this morning.  I was right there with her this time. Ususally it is just Todd, but this morning, I was there too.

This is the second time I've held her hand while they put her under and it never gets easier. Watching your baby struggle then slowly (or quickly) watching them fade away into a sleepy dreamland.  Todd and I both walked away choking back tears.

She is in the cath lab today because at her last cardiologist appointment, Dr. Pophal and Beth said that the blood flow to her left pulmonary artery was at 30% and the bloodflow to her right pulmonary artery is 70% (when it should be 50% and 50%). 

Last June Dr. Pophal took her to the cath lab to balloon angioplastly her LPA to help this exact same problem, and it temporarily helped, but over time it has shrunk right back down to where it was before the procedure. So, today, Dr. Popal is going to implant a stent into her LPA to keep it open. She's been in there for four hours now. I hope that everything is okay. I will post more when I know more.

Monday, February 7, 2011

CHD Awareness Week 2011

Today is February 7th, and that means it is the first day of "Congenital Heart Defect Awareness Week". Which  means that I will be doing my part to help spread awareness and be an advocate for my daughter, a CHD survivor. (more than I ordinarily do, of course!)

This past summer I bought some t-shirts online from, One says: "I'm a heart surgery survivor" and the other says: "My sister is a survivor". Scarlett also has another onesie that says "I'm beating Congenital Heart Disease". They were kinda pricey, but they worth every penny, because I love putting them in their CHD Awareness t-shirts. Last Saturday I took them to the zoo and they proudly wore their t-shirts.

These pictures were taken by zoo photographers that are available to snap a shot as soon as you enter the zoo.

Several weeks ago, I wrote (emailed) Arizona's governor Jan Brewer and asked her to proclaim February 7-14 as CONGENITAL HEART DEFECT AWARENESS WEEK in the great state of Arizona. There is a proclamation form that you can fill out online. I did this at the suggestion of the Congenital Heart Information Network. and to my delight, it (the proclamation) was received and approved. Not only that, but I also heard that I am not the only heartmom to make such a request. I was told by the governor's staff that I was one of at least 6 other people who submitted this request.  I believe that it's been done for at least the last 4 years. Awesome!

Don't now if you watched the Superbowl yesterday, but if you did, then maybe you saw the commercial with the little kid Darth Vader. In case you missed it, here it is:

Well, I just learned today that the little boy that portrays Darth Vader was born with Tetralogy of Fallot and also has a pacemaker! He is 6-years-old and lives in California. His name is Max Page. Here is a news story they did about him on the Today show this morning:

How awesome is that to kick off CHD Awareness Week?? :  )

Well, tomorrow is Scarlett's cardiac catheterization. I'll be blogging from the pediatric cardiothorascic Intensive Care Unit of St. Joseph's Hospital (during CHD Awareness Week). I will post more about CHDs, and more about how Scarlett's heart cath goes tomorrow. Until then, please do you part and help me spread awareness about America's #1 birth defect. Thanks!