I am asking for prayers for my daughter Chloe. We found out last month that she has Partial Anomalous Pulmonary Venous Return to the Coronary Sinus. She has an MRI coming up and surgery will take place in the next few months. I am scared beyond belief! She was always a healthy child and this was found at a well visit (the doc heard a murmur)! Please pray to guide the doctors and surgeons to correct her heart and a speedy recovery!

I feel your fear, Janielle.  I can remember feeling terrified when my son had cardiac catheterization, a straightforward diagnostic procedure.  I wondered how I was going to hold it together for the actual surgery if I felt this fearful for a less invasive event.  Remember Philippians 4:13.  “I can do all things through Christ who strengthens me.”

Nathan regains consciousness after surgery to correct Partial Anomalous Pulmonary Venous Return (PAPVR), Scimitar Syndrome. This was taken in PICU at C.S. Mott Children's Hospital in Michigan.

Nathan also had heart surgery to correct PAPVR.  Check out this smiling face while he recovered in PICU.  He is doing fine now and barely remembers anything about our week at the University of Michigan Medical Center.

Stay strong–our prayers are with you!

This little news segment ran on our local station, WLOX, back in 2007.  Nathan was five years old and was just a few months recovered from heart surgery to correct PAPVR (Partial Anomalous Pulmonary Venous Return), a component of scimitar syndrome.  His sister, Michelle, presented him as her everyday hero at a school luncheon.  Nathan whispered to Bryan and me, “Are you so proud?“  Indeed, we were.  Of both the presenter and the receiver!

It was a bittersweet moment.  We had just learned he had congenital kyphosis and would require spinal fusion surgery to prevent paralysis.  That surgery was successfully performed a few months later.  But on that day, he was our inspiration–our hero!

My son, Nathan, is a scimitar syndrome survivor.  Little Aubrey Rose also had scimitar syndrome, but did not survive.  Her family created a charitable foundation in her name.  I received this newsletter from the Aubrey Rose Foundation:

Our Mission is to help families caring for children with life-threatening illnesses with our focus being on the family unity.
We Strive to lift families from life’s complexities during this difficult time by providing emotional and financial support.

Hello Everyone,

It’s our Anniversary – We are in our 10th Year!!! We started the Aubrey Rose Foundation on February 10, 2001, which was three months to the date of Aubrey’s death. Starting this Foundation gave us a focus to get up everyday and to live. We know that Aubrey would want us to live and to thrive and that’s exactly what we’re doing with the Foundation. Can you believe that this is the10th anniversary of the Aubrey Rose Foundation? It’s hard to believe and somewhat bittersweet.

This has been a labor of love for us and so very healing to be able to help so many children and their families. At the same time, it’s also a reminder everyday that our full-faced, always smiling, beautiful little girl, Aubrey, is no longer here with us. We also know that even though she is no longer with us, she is still touching people even in her death! We had a doctor tell us that Aubrey’s story is a story from the Bible and it needs to be told and so Jerry and I have our work cut out for us in spreading her word and we’ll be doing this forever – with a smile on our faces!!!

We thought we would share with you a little blurb that a father of one of our scholarship recipients wrote to us after hearing us speak. The writing from his heart touched us very deeply.

“I was moved by the work you do and especially by it’s inspiration. This is a tremendous example of how blessings can come from a great loss… Through this scholarship program, you are creating a stimulus for teenagers to think beyond themselves and to consider God’s purpose for their lives….While this scholarship itself is generous, more important is the opportunity to reinforce the value of life and to examine how they can and should impact the lives of others.”

We truly felt that God gave us Aubrey for a reason and her job was to make people aware of their blessings in life and to reach out and pray more and when God called Aubrey home, that’s when our job began! We have been charged with a huge mission and we welcome this gladly but we also know that we have to work hard and work smart to carry out this mission of helping millions of children and their families. 10 years is just the beginning… wait until you see what we have instore for the future!

Thank you to all of you for your love, your faith and your continuing support of the Aubrey Rose Foundation.

Love to you and your family!

Jerry, Nancy, Carly, Spencer and Saint Aubrey Hollenkamp
George and Nancy Frondorf, (Aubrey’s Grandparents)

• Increase awareness and understanding of the Aubrey Rose Foundation and all it has to offer/provide
• Inspire the communities to embrace our mission – helping children with life threatening illnesses
• Enhance relationships within the communities and with current key organizations/groups
• Expand relationships in other communities and around the world
• Celebrate a decade of achievements
• Set goals to achieve even more in the next ten years.

We welcome you to join us at our different programs that we have and we would love for you to attend our fundraisers as well but more importantly, we want you to share with those around you what the Aubrey Rose Foundation is all about.

If you hear of a child with a life-threatening illness, please share with the parents that we can help them; if you have an 8th grader going on to Catholic education, let them know that they can apply for a scholarship, and if you want to volunteer as a family somewhere, come and join us at one of our Ronald McDonald House themed dinner parties – you are welcome anytime! The Aubrey Rose Foundation has many different facets but the bottom line is to help put smiles on the faces of many children and their families through financial, emotional and spiritual support! We welcome you all to join us in our mission!

www.aubreyrose.org

The Aubrey Rose Foundation is headquartered out of Cinncinati, Ohio, but their charitable deeds are far-reaching.  They assist families from many parts of the country, AND they have provided life-saving surgeries to two children, Elena from Russia and Hannah from the Philippines, through their “Healing the World’s Hearts Program.”

To learn more, visit their website at www.aubreyrose.org.

I came to know Sylvie Stephens through the Nathan’s Prayer website.  Her friend, Gail Devine, was looking for information about scimitar syndrome because Sylvie’s baby girl, Sydney, was struggling with this rare heart condition.  My Nathan had surgery three years ago to correct Partial Anomalous Pulmonary Venous Return, an aspect of scimitar syndrome.  Gail emailed me about Sylvie and Sydney, and over the months we shared emails that would be the length of a novella if strung together.

I wanted to encourage Sylvie.  I wanted to be an inspiration to her.  Turns out, she was an inspiration to me.  As Sydney began to lose her battle, I watched in awe as Sylvie, determined to surround her sweet Sydney with love and happiness in her last days, put on a happy face and kissed and cooed and snuggled her sweet angel.  Sydney went to heaven in September.

The card’s message is a little fuzzy from being scanned, so here’s a clearer version:

2009 was my best year because Sydney was in it.  May you and your family be blessed with health and peace.  Love, Sylvie Stephens

Tebow's message had special meaning for Sylvie, a mother who recently lost her daughter.

A website called Tebow’s Eye Black noticed the story I posted recently about Sylvie Stephens who lost her sweet baby, Sydney, this past September after a battle with scimitar syndrome.  There is a lovely prayer under the category of “Sunday Huddle” for Sylvie:

God bless and keep Sylvie, make your face to shine upon her, and give her your peace. Like Job, restore her body-soul-and spirit, restore to her a family, and all that concerns her. Give her the desires of her heart, and like Job, make the story of her journey through suffering a story of victory, and ultimately a story of hope and comfort to others. Amen.

Visit Tebow’s Eye Black: http://www.tebowseyeblack.com/search/label/Sunday%20Challenge

Sylvie and Sydney

Amazing Grace!

If you are not familiar with the story of little Sydney, please read these previous posts:  Pray for Sydney, Update, “God will give me strength…”, Nurse Angels, “I can’t kiss her enough”, “He will help me heal…”, Three Minutes of Wonderful, Happy six months…, Sydney is in a better place.  As you may recall, Sylvie’s daughter had scimitar syndrome which involves a complex congenital heart defect.  Little Sydney recently passed away.

As I sat in church this morning, I had Sylvie Stephen’s latest Caring Bridge post heavy on my mind.  I thought to myself, “As soon as I get home, I’m going to email Sylvie and ask if I can post her letter on Nathan’s Prayer.“  When I walked in the door, I went straight to my laptop, opened my email, and guess what!  She had already emailed me with permission to use it.  I encourage you to pass this gift around:

Now, I’m not one for college ball.  I love the NFL, but I’m watching the UF-Alabama game anyway.  I’ve

Tebow's message had special meaning for Sylvie, a mother who recently lost her daughter.

heard all the hype about Tebow, but really never gave him much interest.

I looked up today the scripture he had on his eye black, except that I looked up John 16:33 incorrectly thinking it was John 16:22.  Here’s 16:22:

“Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.”

If that is not my daughter speaking to me through God, through a college football player…. I don’t know WHAT IS!!!  I just cried and cried, and smiled and was comforted.

I am getting better every day.   There is relief in her death, because she is free from pain and she is absolutely SAFE.  But it is simply UNNATURAL to be seperated from my baby.  I described it to a friend recently that living without her is like being forced to live underwater without any gills.  I have to come up for air all the time and it is exhausting and HARD.  But, I can do it!  Just like dolphins can do it by design- so can I.  (PS- GO FINS!!!)

So anyway, college football has changed my life.

And by the way- I looked up John 16:33 and I already had highlighted it in my bible on 6/18/09.  Tebow and I are literally on the same page.

“I have told you these things so that in me you may have peace. In this world you will have trouble.  But take heart!  I have overcome the world.”

Love,
Sylvie

Nathan Blakeney, EKG Pro, at Children's Hospital in New Orleans.

Last week, Bryan and I took Nathan to Children’s Hospital in New Orleans for his annual checkup.  His heart surgery to correct Partial Anomalous Pulmonary Venous Return, a problem connected to his Scimitar Syndrome, occurred about three years ago.  The first year after surgery, appointments were a few months apart, but he has done well, so he is seen once a year now.

I asked the nurse who hooked him up for the EKG (electrocardiogram) if his scimitar syndrome required a different placement of the leads.  She told me the leads are, indeed, placed differently on patients with dextrocardia.  To get a proper reading on a heart that is positioned on the wrong side, it appears that the leads are reversed.

Typical placement of EKG leads

I snapped a picture of Nathan while the nurse performed his EKG.  He has had several of these over the years, and although he was not crazy about being wired up as a baby, he now takes it in stride.  He  giggled  when Bryan told him to be glad he doesn’t have a hairy chest.

Broady Doland

Traci Doland reports that her son, Broady, had a CT scan today in preparation for heart surgery.  Broady has scimitar syndrome, which involves several problems including partial anomalous pulmonary venous return, hypoplasia of the right lung and right lower lobe sequestration.

“We meet with the surgeons on October 26th,” says Traci.  “They have us for November 10th for his heart cath.  So, if all goes well, we should be in for surgery right before Thanksgiving.”

Please remember Broady and his family in your prayers.

Broady

Broady was diagonsed with Scimitar Syndrome when he was a week old in the NICU @ Maggie Hospital. He has hypoplasia of the right lung, right lower lobe sequestration, partial anomalous pulmonary venous return of the right pulmonary vein into the inferior vena cava, hypoplastic right branch pulmonary artery with an aorticopulmonary collateral vessel supplying the sequestered lung that arises from the celiac trunk.

Tracey says, “He is our god-sent angel!”

Tracey also writes that Broady may require surgery sooner than anticipated:

We went to our check up two Friday’s ago down to Children’s. Our appt. didn’t go to well.  Dr. Drant and Dr. Aujila are meeting with the surgeons on Wednesday, September 23, 2009 to talk about doing his open-heart sooner. He has went down hill within the last 2 months. His energy level is very low and he has “blue” spells. He gets really pale and his lips turn a blueish color. They think that parts of his underdeveloped lung are collapsing causing problems and the blood flow through his heart is staying blue blood and not turning over to red blood. I don’t have my update from our appt. to say all the medical terms. Sorry….

We never thought that surgery would be this soon. We know he is in good hands with the doctor’s at Childrens but it has been a struggle with us. Please pray for strength for when we  get the news Thursday AM…

Sydney - Mama Sylvie's "Garden" Angel

Sylvie Stephens continues to drink in every day God gives her with Sydney:

I thank God for another day that I feel alive and positive and full of joy, and I have no distractions to keep me from celebrating and enjoying Sydney.  I could be sobbing in a corner rocking back and forth, but instead I am filled with peace!  It’s a miracle.

Yesterday I bought more outfits and decorations for Sydney’s birthday party.  She will be 6 months old on Monday, September 14th, and I want her to have a party.  My heart was racing the whole time I was away from the hospital, but I did it.  She is going to have a garden party!

In the back of my mind, I am always afraid of how I will feel after she is gone.  This is what I came up with yesterday that I want to share.  I can’t fall apart after Sydney is gone.  I worry I have been so strong thus far because she is here and she needs me.  But after she is gone, I still need to live for her.  I can’t let her be the reason I fall apart.  She can’t be the reason, and will not be the reason, for anything negative.

This does not mean that I am not allowed to be devastated, depressed and heartbroken for a really long time.  But even if it is for 5 minutes a day, I need to stand up.  I need to stand up and breathe, I need to stand up and LIVE.  FOR HER.  And there will be a time when I will remember her with more joy than sorrow.  I will ALWAYS feel lucky to have had her, no matter how brief her time was with me.  “I would rather have 3 minutes of wonderful than a lifetime of nothing special.”

[Sydney has scimitar syndrome.  She is receiving palliative care at Children's Hospital in Minnesota.]

See also:  Pray for Sydney, Update, God will give me the strength…, Nurse Angels, I can’t kiss her enough, He will help me heal.