February 14, 2015 - Hearts Full

For the past two years, during this week, I have tried to honor the memory of my nephew Kyle by posting every day for Congenital Heart Defect (CHD) Awareness Week.  This year, sadly, I did not have my act together enough to do it.  Today is the last day of the awareness week, though, so I'm squeaking this one post in.  Just because I didn't post every day this week, though, doesn't mean that I don't think of Kyle every day.  Because I do.  Every single day.

If you would like more information about Congenital Heart Defects, you could check out my posts from the past two years:

CHD Awareness

Facts

Signs and Symptoms

Screening and Screening

Causes and Risks

Someone You Know

How You Can Help

Remembering Kyle

Otherwise, just know that 1 in 100 babies are born with some kind of heart defect...and with proper and early detection, most of them can go on to live healthy, full lives.  But the research is underfunded and it is a very worthy cause.   I feel it is a little bit hard to "help" from Tanzania, but someday if I ever live in the United States again, I would love to find a way to DO something for those affected by CHDs every day.  

So on this Valentine's Day, when I am once again so grateful for the lives of my three heart healthy children, I am also very aware that today, and every day, many parents are missing their beloved children because of CHDs or related causes.  

LMW

January 20, 2015 - Great News!

Very happy news from our family.  

Grace, Noah and Aya have a new cousin!  

Allison Mueller Phelps was born on January 14, 2015.  This is my favorite picture of her so far because she looks so much like her brother, Kyle.  What a blessing for my sister's family to welcome a new baby.  It is an emotional roller coaster, for sure, and her arrival was not as drama-free as we all would have liked...but she is now doing really well at home with her over-protective big sister firmly by her side.  Just I have thought with the birth of all of my nieces and nephews (Matthew, Nathan, Michael, Sean, Molly, Nora, Zoe, Kyle and now Allison) and my own children...what an incredible gift!  

We aleady love you, Allison!

LMW

October 7, 2014 - This Little Light of Mine

The date doesn't usually matter.  Because, of course, I think of Kyle every day.  For some reason, the solitude of my car is often the place where I end up weeping for Kyle.  Sometimes I talk to him there.  Or I sing to him, that song I sang to him just an hour before he passed away... "...this little light of mine, I'm gonna let it shine..."   

However, this particular date does matter.  October 7th. 7:04 pm. I can't help but go back to that day.  To that very moment.  The painfully slow hours that came afterwards juxtaposed with the haste of the next few days, and all that had to be taken care of.  I remember it acutely. Minutely.  I often play the whole movie of that week in my mind.  But today, of course, it is harder still.

In our house we talk a lot about Kyle (and Oldemor and Jesus...the other people Grace and Noah "know" who have died).  Grace and Noah know him as their cousin, and out of nowhere they will say the most amazing and lovely things about him.  Very honest and blunt things too. When our good friends' dog died recently Grace asked me a few days later, "Do you think Chewy will see Kyle in heaven?"  

When it was his birthday, I tried really hard to focus on just being happy that Kyle was born.  But today's emotions are much more complicated:  anger, confusion, heartbreak, sorrow.  There are absolutely no words to fully capture the  complexity of my feelings on this day.  And I know my own emotions are shallow compared to the depth of those his parents feel.  

I've basically just been wallowing today.  Living my life all the while - 5:30 wake up for school, Aya has had a fever all day and had to go to the doctor, Noah had to have his stitches checked, emails, carpool runs, bath time, dinner, bed time - but wallowing still.  Thinking of Kyle and Christine and Kevin all the time.  All the time. All the time.  

Two years later and on this day for me, unlike the other days, it's like losing him all over again.

In our house, a candle was lit for Kyle again this year - and will be every year.  

That little light of mine.

LMW

September 10, 2014 - A Day to Remember

Once upon a time, a beautiful little boy was born.  There will soon be a day to remember our grief that his life didn't last very long, but today is a day to celebrate the gift that his life was.  Thinking of our nephew, sweet Kyle Michael, on what would have been his second birthday.  And praying for his parents and sister as they miss him today, and everyday.

Life is truly precious.  And Kyle's was a reminder to all of us not to take even one single day for granted.  

LMW

February 14, 2014 - Day of Love

Today is the final day of CHD Awareness Week.  I am not sure that I shared anything new or particularly helpful compared to my first time around last year...but for me it was more about doing something at all because from all the way in Tanzania there isn't much support I can offer to the more active cause in America. If and when we live in the US again, I hope I can particpate in spreading CHD Awareness through the resources there.

But, as it is Valentine's Day as well, today is also about appreciating the people you love.  And while I know that Kyle didn't live very long and he wasn't very big, I did love him as I love all of my nieces and nephews.  Sooooo many people loved him and miss him.  27 days is not very many, but he was brave and strong and important and special.  He is my heart hero.  His life gave me a new and different perspective on my own life, and especially on the lives of my children and my other close loved ones.  With a new a baby on the way, I am praying for her good health all the time and know that I will appreciate the miracle of her life when she is born.

Rest in Peace, Sweet Kyle.  You are not forgotten.

I love you, 

Auntie Lisa   

February 13, 2014 - Support CHD Awareness and Research

Today I am not linking to last year's post, I am copying and pasting directly from it because it is so important.  If CHD is a cause that you care about and you are able to give charitably, here are some ways in which you can support necessary research and/or people whose lives are affected by CHD.

• The Children's Heart Foundation (CHF) is the United States' leading organization solely committed to funding life-saving research on CHD.  If you make a donation to CHF, over 75% of your donation directly funds research or research-education.  From 1996 to 2012, CHF has funded over $5.3 million to 52 research projects. 
• You can also become a corporate partner of CHF or volunteer at a local chapter of CHF to help support local fundraising, awareness and advocacy activities.  
• Write, call and visit your state legislators to ensure funding for the Congenital Heart Futures Act.
• Share knowledge you have about CHD with your friends and family, including putting facts and resources on your social media for others to be exposed to.
• Cardiac Kids is a Canadian volunteer organization raising funds to support children with CHD and their families.
• Camp Taylor and Hope with Heart are American camps and Camp Oki is a Canadian camp for kids with heart defects. All camps could benefit from donations or volunteers.
• Mended Little Hearts  and Little Hearts are non-profit organizations for families and caregivers of children with CHD to receive support, education and resources.  Donations help them support a large community of people affected by CHD.

If you know of any other ways for people to get involved with CHD, please leave a comment on this blog so that I can share them.  Thanks!

LMW

February 12, 2014 - CHD at the Olympics

Last year I listed a lot of "famous" people you might know of living with or who died from a CHD.  Another "famous" CHD survivor was competing in the Sochi Olympics this year.  American Snowboarder Shaun White had two open heart surgeries in his early years to repair a disorder called "Tetralogy of Fallot". (Sorry for him that he did not win a gold yesterday!) He has received criticism for not being a public figure to support fundraising and research for CHD...and he doesn't talk about it or use his celebrity to help the cause.  I'm not interested in making a statement about him (although of course it is too bad that he isn't willing to help!), but rather to make the statement that there are SO MANY PEOPLE living with CHDs.  You might know some people who have a CHD, but you might also have people in your life who have a CHD that you don't know about it.  I think it is actually pretty rare to find someone who isn't somehow connected to CHDs in some way.

The statistics that I've been posting are just very clear:  more children die from CHDs than all childhood cancers combined, but CHD research receives only a fraction of the funding that cancer research receives.  I am not at all begrudging the funding for childhood cancers...of course not!  But I do wish there was more attention for CHD research and to help families cope with CHD loss or survival. One week every year it is great to highlight this cause, but even better if it was receiving ongoing attention!

LMW 

February 11, 2014 - Causes of CHDs

As I wrote about last year here, it is very difficult to identify the causes of CHDs.  

Early detection is still the most important factor in an infant "heart warrior's" survival, so it is important for pregnant mothers to ask these questions below.

However, many babies with serious CHDS present to have normal, healthy hearts in utero.  This was the case for Kyle, and there was no reason to suspect that his heart was anything other than healthy.  Unfortunately, as with many birth defects, there is no way to tell until the baby is born, and even then it can prove to be extremely difficult to diagnose.  Because there is no easily identifiable cause of CHDs, there is no perfect way to detect or cure them either.  The very best thing new parents can do is have all relevant information, ask a lot of questions of their doctors and nurses, and pay very close attention to their baby's health and behavior.  

LMW

February 10, 2014 - CHD Pulse-Oximetry Screening

On this day last year, I wrote here about pulse-oximetry screenings for newborns. It cannot detect ALL CHDs (for example, Kyle passed his screening), but it can detect many CHDs before babies are ever sent home from the hospital. Pulse-oximetry screenings are not always mandatory, so it is definitely something to talk to your doctors about while you are in the hospital with your newborn.

This year, please visit this website to see a brief video about how pulse-oximetry screening works and why they are so important.  

To my fellow Americans: This image can tell you if your state in America has active pulse-oximetry screening legislation or not.  Please contact your Congress-person if pulse-oximetry screening is NOT active where you live!

LMW

February 9, 2014 - CHD Signs & Symptoms

As I reported last year here, some people born with CHDs start showing symptoms as early as birth and others do not until older childhood or even adulthood.  It is important that new parents know, however, what might not be normal in their newborn just to be sure that everything is OK.

For example, I have just recently reconnected with a friend from high school whose daughter was born with some pretty critical CHDs.  Her conditions were detected early when at 23 hours old, her doctors and nurses noticed that they couldn't get a pulse in her lower extremities.  That lead to further testing and the discovery that she had an interrupted aortic arch, similar to Kyle's.  She was not without complications after her surgery to repair the arch, but she is still a fighting little "heart warrior" today.  

One of my closest friends recently had a baby girl who is perfectly healthy but had a low pulse-ox and was kept in the NICU until she was almost 3 weeks old before she should go home.  They had to make sure that her heart function and other organs were all OK before they could send her on her way. What a relief it was the day she was able to go home with her parents! 

I'm not writing this to sound scary, but with almost 1 in 100 babies born with some kind of CHD each year it is a reality that I think all parents should be aware of.  The more information you have, the more likely you are to be able to help your child.

LMW

February 8, 2014 - Basic Facts about CHDs

For some basic facts about CHDs, please read last year's blog here or read the graphic below.

Thank you.

LMW

February 7, 2014 - CHD Awareness Week is Back

February is Heart Awareness Month and this particular week, February 7-14, is Congenital Heart Defect (CHD) Awareness Week. 

As you probably know, my newborn nephew Kyle passed away on October 7, 2012 from complications related to four CHDs he was born with.  In fact that was 16 months ago today, an anniversary I will never forget because I was in his hospital room with his parents when he died.  He was 27 days old.  

Last year I posted a series of (what I hope were) educational blogs about CHDs.  I have unfortunately not come up with anything more creative to do this year, so I will be resharing some of what I posted last year and if I can find anything new to share I will do that as well.  It is not very much - I certainly wish I could do more - but is a small gesture to show my sister and brother-in-law that I have not forgotten Kyle, I have not forgotten their grief, and I will continue to be an advocate for more CHD awareness and research so that other parents are spared the painful experience of losing their child.  With a baby on the way and Kyle always on my mind, it is a cause very close to my own heart.

To read last year's post sharing a little bit of information from the Congenital Heart Information Network, click here.

In loving memory of Kyle Michael,

LMW

October 14, 2013 - Thank You

I would like to say a warm and heartfelt thank you to everyone who remembered our nephew Kyle last week with a candle on the anniversary of his death (and also some people who did it in September for his birthday).  I think in the end I have about 70 candles and will be compiling all of the beautiful pictures into a book for Kyle's parents.  It was not an easy day, but was certainly softened quite a bit by such an outpouring of love and support. It was a special way to honor Kyle's life.  Thank you all very, very much.

LMW

October 7, 2013 - A Candle for Kyle

It is hard for me to write about this today. Yesterday was actually particuarly difficult...because I arrived in America last year on a Sunday afternoon, and Kyle passed away about 90 minutes after I saw him for the first time in the hospital.  Sunday at 7:07 pm.  The memories of that evening and the week that followed are vivid and clear, and very, very difficult.  It was the worst week of my life, but was also nothing in comparison to what Kyle's parents went through and continue to go through in their daily lives without him. 

And while my feelings are elaborate and complex, I actually can't bring myself to write it all down.  It's just too much.

But for today, Kyle's candle in our home has been lit.  I've been talking to his picture this morning, singing "our song" (This Little Light of Mine...) and remembering this Irish prayer, for sweet Kyle.

May the road rise to meet you,

May the wind be always at your back,

And until we meet again...

May God hold you in the palm of his hand.

If you'd like to share your candle for Kyle as well, so that his parents won't feel so alone in remembering their son today, please email a picture to candlesforkyle@gmail.com or click here.

LMW

September 11, 2013 - Remembering

It is hard to believe that 9/11 was twelve years ago.  I can still so vividly feel the emotions of that day.  And so it is with my nephew Kyle's death.  In both cases, I think it is really important to remember everything that happened on "the day" and to honor the lives that ended too soon.  

In the case of 9/11 I think there are many different ways people pay tribute every year.  The names are read, flags are hung, people share their stories of what they were doing.  It is important for us to do this, individually, with our friends and families, and as a nation.

For Kyle, I think it is important to do something too.  So on October 7th, the anniversary of his death, I will be lighting a candle for 27 minutes to honor the 27 days of Kyle's like.  If you would like to do the same thing, please share with me a picture of your candle (emailed to candlesforkyle@gmail.com).  I have this feeling that it might somehow might make Christine and Kevin feel a little better knowing that on that day there have been so many beautiful little lights shining all over the place to remember their beautiful son. 

Please read more here http://candlesforkyle.blogspot.com and feel free to share with anyone you know who was affected by Kyle's life and death.

Many thanks, and never forget.

LMW

September 10, 2013

"Never been lonely, never been lied to, never had to scuffle in fear, nothing denied to. Born at the instant, the church bells chime, the whole world whispering, born at the right time." - Paul Simon

Today we remember the joyous day that my nephew, Kyle Michael, was born, which I blogged about here a year ago.  

My grief over Kyle's death comes in very strong waves, frequently.  It is not something that I am "over" or ever expect to be.  It is a part of who I am. And in 27 days when it is the anniversary of his death, I know that I will feel that grief just as strongly as I did the moment I watched him pass away.  Of that, I have no doubt.  But I also know this:  today, September 10th, will not be a day of grief for me. I will try my hardest now and every year on this day to feel grateful.  

Grateful that Kyle was born. Grateful that his mother and father and grandparents and several other family and friends were able to hold him or see his sweet face. Grateful that his big sister had him at home with her for a short time. Grateful that I was able to meet him, if only just. Grateful that he was welcomed into this world with all of the love and hope and promise that every sweet baby deserves, and that when he left this world he was surrounded by that same love and grace.

I might feel grief every other day, but today is his birthday, and regardless of how short it was, Kyle’s life was a gift to be celebrated and will not be forgotten.


LMW

February 14, 2013 - Happy Valentine's Day (Final Day of CHD Awareness Week)

Today is not only Valentine's Day, but also the final day of Congenital Heart Defect Awareness Week. The week has been emotional: starting on the 4 month anniversary of Kyle's death...peaking on the day he would have been 5 months old...and now ending on "the day" of celebrating love.  

I know he was so young, but when I think about him now I often pray that in those days when he was very, very sick he had some way of knowing or feeling that he was not alone...that so many people near and far around the world were praying for him...loving him...trying to give strength to his fight. 

While I give thanks for the healthy lives of my own children today, I can't stop thinking of this poem from Kyle's funeral program.  And I hope he knows that especially in the moment when he passed away, he was not alone then either.

In tears we saw you sinking,

And watched you pass away.

Our hearts were almost broken,

We wanted you to stay.

But when we saw you sleeping,

So peaceful, free from pain,

How could we wish you back with us,

To suffer that again.

It broke our hearts to lose you,

But you did not go alone,

For part of us went with you,

The day God took you home.

To conclude my CHD series with some hope, please read this story and watch this clip of a young hero: Hunter Paulin, who lives with CHD and ran in the football for the Superbowl this year.  With more widespread screening, awareness and research, I pray that more babies born with CHD have the opportunities that Hunter has had to live an active, healthy, and happy life.

In loving memory of sweet Kyle Michael

September 10, 2012 - October 7, 2012

LMW

February 13, 2013 - Congenital Heart Defect Awareness: How You Can Help

If CHD is a cause that you care about, here are some ways in which you can support necessary research and/or people whose lives are affected by CHD.

• The Children's Heart Foundation (CHF) is the United States' leading organization solely committed to funding life-saving research on CHD.  If you make a donation to CHF, over 75% of your donation directly funds research or research-education.  From 1996 to 2012, CHF has funded over $5.3 million to 52 research projects. 
• You can also become a corporate partner of CHF or volunteer at a local chapter of CHF to help support local fundraising, awareness and advocacy activities.  
• Write, call and visit your state legislators to ensure funding for the Congenital Heart Futures Act.
• Share knowledge you have about CHD with your friends and family, including putting facts and resources on your social media for others to be exposed to.
• Cardiac Kids is a Canadian volunteer organization raising funds to support children with CHD and their families.
• Camp Taylor and Hope with Heart are American camps and Camp Oki is a Canadian camp for kids with heart defects. All camps could benefit from donations or volunteers.
• Mended Little Hearts  and Little Hearts are non-profit organizations for families and caregivers of children with CHD to receive support, education and resources.  Donations help them support a large community of people affected by CHD.

If you know of any other ways for people to get involved with CHD, please leave a comment on this blog so that I can share them.  Thanks!

Awareness is critical and can be life-saving.

LMW

February 12, 2013 - Slight Correction re: CHD Screening

I inadvertently posted some misleading information the other day that I want to correct. My sister has informed me of the following:

"Kyle did have the pulse ox screening. But since his PDA duct** was still open when they did it, he passed it with no problems. His major defect, the coarctation of the aorta, was such that the screening did not pick up on it and the screening was not designed to pick up on his other defects. That does not take anything away from pulse ox screening. It is important, and relatively cheap, and should be done on all babies. The most important screening is the/are the ultrasounds that pregnant women receive. Better training and expertise of the ultrasound technicans can identify defects in-utero allowing at the minimum for discussions and planning to occur. According to Dr. ----, at the moment, there is very little that can be done before birth (in-utero) to fix defects that are identified."

**the PDA duct is the vein present in utero allowing blood to flow by bypassing the lungs. It basically acts as the baby's aorta. When the baby is a few days old the duct should close and the aorta completely takes over now that the lungs are fully developed. Kyle's most critical defect was that his aorta was too narrow to function. So he passed his pulse ox screening when his duct was open and blood/oxygen were flowing well, but when his duct closed his aorta was not able to take over and that is when he became critically ill.**

I just didn't want to leave the impression that Kyle didn't get the pulse ox screening. Sorry!

LMW

February 12, 2013 - Congenital Heart Defect Awareness: Someone You Know

Given the statistics that 1 in every 100 babies is born with CHD...as I've written, that's 40,000 alone in the US every year...it is very likely that YOU know someone whose life has been affected by CHD.  Maybe it is a member of your family or your friend or your colleague...or one of their family members or friends.  Maybe you know me and my family. 

Or maybe you were a big fan of Teddy Bruschi when he played for the Pats for 13 seasons.

Or maybe you loved the little Darth Vader in the VW commercial, where he uses his powers to start his Dad's car. 

Or maybe you love the music of the Clash, whose frontman Joe Strummer died of undiagnosed CHD at age 50.

Or maybe you thought John Ritter was a really funny actor (Three's Company!) before he passed away of undiagnosed CHD at age 55.

Or maybe you think that "Every Rose Has Its Thorn", just like Brett Michaels.

Or maybe you didn't know that Sly Stallone and Katherine Heigl both have children with CHD.

Or maybe you have always swooned over Brian Littrell and the Backstreet Boys.

And it doesn't matter at all if it is a famous person, or not.  CHD affects thousands of families in sad, scary, and painful ways...also in triumphant and proud ways for survivors.

This is a really touching article that I encourage you to read, about the family of San Francisco 49s quarterback Colin Kaepernick's family (he just had a tough loss to the Ravens in the Super Bowl).  They lost two newborn sons to CHD and find ways to stay involved with the cause even now, decades later: http://www.huffingtonpost.com/2013/01/31/kaepernick-family-losses-parents_n_2595082.html 

It is a pretty serious birth defect that very few people know anything about. If this is a cause that you care about, tomorrow I'll tell you some ways that you can help.  

LMW