I’m not aware of many memoirs written about a family’s struggles with their child’s congenital heart defect.  Veronica is painfully familiar with the ups and downs of loving a child with serious medical issues.  She shares the following article, “What Now?  Finding Support after Discharge” with Nathan’s Prayer:

When you are a part of something long enough, it becomes your normal… even if it is not normal. Being trapped in a pediatric intensive care unit for weeks or months is not normal, but it becomes part of you. After a while it is familiar and perhaps even comfortable. It is the only world you know. You are forced to live in it and its boundaries.

Eventually you leave the ICU, hopefully with a cured and healthy child. You go home to what used to be your normal, but has now become foreign territory. So you are forced to adjust quickly—again. There are no more nurses caring for your child around the clock. You are now the nurse. There are no more doctors visiting several times a day, diagnosing and observing. You now play that role. There is no one to administer medication, feed your child, change your child, and do their laundry on a daily basis. You now do it all. It can be scary, lonely, and you may feel deserted.

You are not alone. For every childhood illness, disease, or syndrome there is most likely a support group. While we were still in the hospital with our son, who was born with Congenital Heart Defects (CHD), a mom whose son also had CHD, told me about a support group. I did not pay much attention to this information at the time because I did not know when or if my son would make it out of the hospital. But today I feel fortunate to be a part of Mended Little Hearts and share our lives with other CHD families. Mended Little Hearts is a national organization that partners with hospitals to “…connect families in crisis with other parents who have survived the shock of learning a child has a heart problem, navigated the maze of medical decisions and procedures, and mapped out a plan for the future.” (http://mendedlittlehearts.wordpress.com/)

A few weeks ago several Mended Little Hearts families in the Chicago land area came together to celebrate our heart babies during the Valentine’s holiday. It was so special to see these little miracles run around and play like other healthy kids. It is a privilege to be a part of a group like this where there is opportunity for support, friendships, education, volunteering, and fundraising.

If you are a part of a support group please share with us your story! You are welcome to share pictures, links, or any other information that could help others, just use your discretion and respect privacy. Thank you!

Veronica Janus is a mother, writer, and the founder of Forever Moments, an organization that gives families with babies in the ICU hope and joy through photography (2009-2011). The author was born and raised in Sweden and moved to the United States to pursue undergraduate and graduate work. She holds an MA in Theater and Communications and a MEd in English.  Veronica lives in Chicago with her husband and three young children.

Want to win a copy of Veronica’s book? Post a comment.  I’ll put your name in a hat and get Nathan to draw the winner on September 5, 2011.

Sylvie with Jordan, "...a gift from Sydney."

In August of 2009, I connected with a lovely mother, Sylvie Stephens, through my Nathan’s Prayer website.  Her baby daughter, Sydney, was a patient at Children’s Hospital in Minnesota.  Sylvie and I exchanged long emails over a period of time as we hoped and prayed for Sydney to be healed as she battled a congenital heart defect associated with scimitar syndrome.

Since my own son, Nathan, had gone through surgery for scimitar syndrome, I became intensely interested in Sylvie’s plight.  Oh, how I wanted a miracle for Sydney!  Tragically, Sydney lost her battle on September 16, 2009.  I have never personally met Sylvie; our communication has been strictly through email.  Still, I spent much of that day in and out of tears over the loss of that sweet baby.

Then I prayed. Not for Sydney.  She was instantly swept into Heaven’s blissful embrace.  I prayed fervently for Sylvie.  I prayed that God would give her strength.  I prayed that she would receive supernatural comfort and peace.  And I prayed that one day God would bring her great joy and happiness.

Well, there is, indeed, joy in the morning! Weighing in at 6 lbs., 13 oz., little Jordan Tieszan was born on 3-11-11, just 3 days before the 2nd anniversary of Sydney’s birth.

Sylvie and Sydney

“It’s been so healing to have Jordan,” Sylvie reports.  “Sydney is always on my mind and in my heart. Jordan is such a joy and a gift from Sydney!”

On March 25, a cardiac catheterization will be performed–this will give the surgeons information to help them in the upcoming surgery.  Please remember Taylor, Riley Rae, and their family in the coming days and weeks.  Taylor has a nice blog about her cutie-pie at http://rileyrae.livejournal.com.

After Colin’s cardiac catheterization, it was determined he should be scheduled for surgery sooner rather than later.  I heard from Abby this morning that Colin’s surgery will be performed at Children’s Hospital Boston on Tuesday, October 19.  “While we are scared and nervous beyond belief,” Abby says, “we are also excited to get his little heart fixed, and get this behind us.  Would you put us on your prayer list?”

Absolutely!  Friends of Nathan’s Prayer, please remember Colin and his family as surgery approaches.

My daughter just went in on Thursday August 26, 2010 to have the catherization surgery to close her ASD but when they got in they found out that it wasn’t the kind that could be closed that way.  They also found that she had the Partial Anomalous Pulmonary Venous Return along with her ASD.  Now we are waiting to schedule open heart surgery to fix both conditions.  She is a very happy 3 year old child.  Please put her and our family on the Prayer List. Thank You and God Bless!

Angie, our family and friends of Nathan’s Prayer will be lifting you up as surgery approaches.  Nathan had this surgery in July of 2006.  Even though his procedure was complicated by his dextrocardia, everything went very well.  An excellent description of PAPVR and the surgery can be found on pted.org.  Notice on page three that recovery is described as “usually straightforward.”  Try to take comfort in those words.  I say try because I know when it’s your own child, this is incredibly frightening.  Love and prayers to your sweet girl!

1. ARRIVAL. Most parents arriving to the NICU are overwhelmed, emotional, and scared. I remember receiving countless binders and folders with information, instructions on how to label and store my expressed breast milk, information about parent sleep rooms. Nurses and other staff introduced themselves. All I wanted to do was to hold my baby and to talk to the doctors about her. Ask dad (if he’s up to it) or a family friend to sort through the information for you and later give you an abbreviated summary.

2. REST… when you can, as often as you can. New mothers are exhausted after childbirth, exhausted by the feeding schedule of the baby. Add the stress of having a child in the NICU and the effect is compounded exponentially. I felt most comfortable napping in a recliner chair next to Sydney’s incubator. Knowing my baby was near gave me comfort, and I was so exhausted I didn’t mind the background noise of monitors, alarms and hospital staff. It’s the only place where I could fall asleep. Later, as I got accustomed to the unit, I felt ok going to the parent sleep room for a proper nap on a bed. Find the place where you CAN fall asleep and rest as much as you can.

3. RESOURCES. Use the resources available:
a. The Chaplin, for spiritual support and prayer.
b. The Social Worker, for emotional and mental support, meal programs, parking discounts.
c. The Care Coordinator, for help with insurance benefits, home care logistics. Sydney was only insured on her father’s insurance and it had a 2 million lifetime maximum. Thanks to advice from the care coordinator, I signed up to insure Sydney through my employer as well, and thus increased her lifetime maximum by an additional 5 million dollars. Sydney maximized her father’s insurance maximum after three months in the NICU.
d. Use Caring Bridge to inform family members about the status of the baby, or designate a family spokesperson to relay information. I received many well-meant calls for information about Sydney that I didn’t have the time to return.
e. Allow visitors OR politely ask for space. Everyone handles stress differently. I wanted to be alone with Sydney and keep my focus and energy just on her. But for others, having family and friends around is soothing and helpful. Find out what feels BEST for you and do that.

4. NURSES. Learn their names. In my time of incredible stress, my ability to remember names didn’t falter. But a good idea is to keep a notebook of names. Sydney had a new nurse every 8 hours during the first month of her time in the NICU. After that, I noticed more consistency. I later learned that nurses in my baby’s unit could sign up to be primary caregivers of a particular patient, meaning that each time they reported to work, they took care of the same baby. I learned this and was on a mission to get primary care givers for Sydney. If Sydney had a nurse I liked, I asked him or her to “sign up” for Sydney. Some nurses don’t take primary patients. And every hospital unit policy is different. But having a team of consistent caretakers was invaluable to me- these nurses were familiar with Sydney, what was normal for her, and what was atypical.

5. DOCTORS. My preconceived notion of what physicians are like (from experience in “adult medicine”) was altered. What I found was compassionate, faith-based men and women that combined medical knowledge, communication skills and empathy to take care of my infant and help me make the best decisions for her. I found it was most helpful to compartmentalize my emotions when speaking to the doctors. I found they would share more information the calmer I appeared. I kept a notebook with notes and questions.

6. THE BABY! The most important person, of course, was my infant baby girl. The lactation consultants helped me with feeding, but also emphasized the importance of skin to skin contact (kangaroo care), interaction (singing, talking) and holding her as much as possible. Although I was first intimidated by her feeding tubes, IVs and oxygen lines (and later her trach), I quickly learned how to pick her up and hold her and keep all her lines intact. And this gave me the greatest joy, the greatest relief and centered my purpose: to be her mother.

If you have any specific questions related to this article, please feel free to email Nathan’s Prayer directly at karen@nathansprayer.com or post the question as a comment. I will keep anonymity when requested.

On the title page, I noticed an autograph and a mention of Nathan, so I realized the authors had run across our Nathan’s Prayer website.  How incredibly sweet, I thought.  And what a coincidence that it arrived on Nathan’s birthday.

The story is tender and precious; and although Amazon lists the reading level as ages 4-8, I suspect most fully grown folks will find themselves getting a little sentimental and teary.  I know I did!  I am a firm believer that from time to time God gives us little glimpses of eternity, even a few whispers from those who reside there. This tale may be fiction, but I have no doubt that it’s within the realm of possibility.  Like they say, God works in mysterious ways!

The Dragonfly Secret–share this heart-warming story with someone who has lost a loved one.

www.featherrockbooks.com

For a free Nathan's Prayer bookmark, send SASE.

FREE BOOKMARKS from Nathan’s Prayer.

My brother, Tom Parker, designed a bookmark using Nathan’s Prayer, the little prayer I came up with for Nathan’s heart surgery.  The sentiment behind the prayer seems appropriate not only for heart surgery, but also to anyone seeking a heart and soul that is pleasing to God.

Would you like to receive 4 free bookmarks? Just send me a Self-Addressed Stamped Envelope, and I’ll be happy to put some in the mail for you.  This item is 7.25 inches long, so be sure to send an envelope to fit.

Send SASE to:  Karen Blakeney; 40 Old Oak Lane; Gulfport, MS   39503

There are no guaranteed outcomes with prayer.  I believe when we ask for God’s help, He hears us, He loves us, but ultimately He works His will.  Still, it’s encouraging to read studies showing prayer has healing benefits. Some believe praying simply removes stress to improve health; others believe prayer has divine power.

What does the Bible say about prayer?

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”  Philippians 4:6-7

Sylvie Stephens spends precious time with her daughter, Sydney.

Sylvie Stephens’ journey with her daughter, Sydney, has been such an inspiration to me. When it became clear that Sydney was heaven bound, God’s grace took over and gave Sylvie the strength to fill her sweet girl’s days with love and happiness.

Sylvie is not the first nor will she be the last parent whose time on earth with a beloved child is brief. It occurred to me that God has blessed Sylvie with a generous spirit and a willingness to help others who are going through a frightening health trial with a child.  She has agreed to write an occasional article and answer questions for Nathan’s Prayer.  I had an opportunity to ask her a few questions.

Karen:  Sylvie, so many people have read about your journey with Sydney, your beautiful baby girl who lost her battle with a congenital heart defect last September.  Tell me a little background information about yourself.

Sylvie:  I spent six months with my daughter at Children’s Hospital in Minneapolis, constantly surrounded by medical professionals and God’s presence.  I witnessed her care and procedures, read her charts, familiarized myself with vital signs, metrics and medical terminology.  I work as an engineer.  What medical knowledge I picked up during those six months was absorbed through the experience (never through my own research).  I grasped what I could in the medical sense, and prayed for understanding of the rest.  Faith filled in the gap.

Karen:  For many people going through a health trial with a child, their faith is focused only on God allowing their child to live, not giving them courage to deal with death if that’s God’s will.  How did your faith and your walk with God evolve as you realized your time with Sydney was limited?

Sylvie: I remember always praying for God to hold her in His arms when I could not before falling asleep.  I began my prayers like this when I was in the NICU parent sleep room when she was very little, just days old.  What I meant by my prayer was that I wanted her to feel wrapped in love when I, the person that loves her most, could not physically be with her.  At first, there was a fear in my heart as I would say this prayer.  I would cry in agony and would want to take the prayer back when I realized my prayer may be answered- she would be in God’s arms, but not in mine ever again.  But, with the grace of God, I realized a mother’s resolve:  what was best for my Sydney, not best for me.  The ultimate sacrifice.  I grew to accept that the best life for Sydney could not be materialized in this world.  Coming to terms with that was the first step, letting her go was another, and was much more difficult.

Karen:  Thanks, Sylvie, for sharing your journey.

If you haven’t read previous posts about Sylvie and Sydney, here are a few:  Pray for Sydney, August Update, Strength, Nurse Angels, Kisses, Letting Go, Birthday, and A Better Place.

Sylvie welcomes your questions about parenting and loving a child with a congenital heart defect.  Send your questions either by commenting to this post or by email (see “contact” at the top of this page).

ACCOMPLISHMENTS

We are very proud of our accomplishments in our ten years but we know we have our work cut out for us to continue on with helping families. Our job will never be done because there is always going to be another family to help and another child to pray for.
With that being said, It is important for you to know what we have accomplished in our ten years and it’s all thanks to wonderful people such as yourself for believing in the Foundation. We cannot thank you enough for all of your love, support and devotion to the Aubrey Rose Foundation.

• We are growing the Aubrey Rose Foundation and expanding it’s reach into the Dayton area. We are working on getting an office there, and we are working on partnering with Dayton’s Childrens Hospital.
• We have opened Writely Sew and Aubrey Rose Apparel where all of the proceeds go back to fund the Aubrey Rose Foundation. Writely Sew is an embroidery and embellishment company and Aubrey Rose Apparel will have lines of children’s clothing.
• We have disbursed over $150,000 to families in financial need because of their child being medically-fragile. The amount of our grants is growing in proportion to the monies coming in to Aubrey’s Foundation. We are pleased to say that we are able to help more families with bigger amounts than we’ve been able to in the past. This total is strictly for grants to families and does not include our other programs.
• Our Healing the World’s Hearts Program has brought two different children to Cincinnati Children’s Hospital for open-heart surgery. We brought Elena from Russia and Hannah from the Philippines for their life-saving surgeries and Aubrey’s Foundation took care of their transportation, their stays at the Ronald McDonald House, the surgeries and their incidentals associated with being out of their country.
• We organized 36 themed dinner parties complete with crafts for the children for the Ronald McDonald House families to boost these families spirits so they can carry on taking care of their sick child. We have touched close to 2000 families who have lived at Ronald McDonald House because of our dinner parties.
• Hosted 8 Holiday Parties and organized buying toys and gifts to brighten the lives of sick children at Cincinnati Children’s Hospital. These families will never forget this Holiday Party because we try to make this the most memorable event that will be able to stay with them forever.
• Hosted six Heart Transplant Picnics during the summer months. This themed picnic is for the heart transplant patients and their immediate family members along with the staff of the Heart Center at Cincinnati Children’s Hospital. This is for the patient and their families to start a network of friends in the unique world they live in because of the transplant.
• Supplied camping items for Camp Joyful Hearts. We gave each camper Aubrey Rose Foundation logo’d items that will help them with their week at camp, such as backpacks filled with an umbrella, rain poncho, flashlight, ball cap, camera, beach ball and beach towel.
• Hosted six Hopeful Hearts for Children themed picnics complete with decorations, crafts and dinner so that families of “Heart Kids” can start to build lasting relationships to help families cope.
• Our “Aubrey’s Angels” team for the Heart Mini Marathon for the American Heart Association has raised over $100,000 to help wipe out the #1 killer – heart disease and the #3 killer – strokes.

The Aubrey Rose Foundation is worthy of support.  Click here to donate.