In the first post in this series, you met the Carlson family and learned about Tara,their youngest daughter, and her three month hospital stay. In this post, Tara’s mom Kat talks about how Tara’s hospital experience changed her.

Babies Should Never Be Alone

The first night of Tara’s hospital stay, before the doctors knew how seriously ill the baby was, the PICU staff suggested Kat get some rest in the parents’ waiting area. Kat dozed four hours before being awakened to hear some terrible news. Tara had crashed shortly after Kat went to sleep, and the medical team had spent four hours reviving her. Things were so grim no one could take a break to alert Kat.

The news shook Kat to the core. “What if my baby had died?” she says. “She deserved so much more than a death with doctors shouting frantically and tubes being forced down her throat. She needed someone who loved her nearby, someone who could tell her how special she was, someone to pray over her and comfort her.”

In that moment, Kat vowed that her daughter would never again be without someone beside her during her hospitalization. Usually either Kat, her husband Jim or Kat’s mother were at Tara’s side. But as Tara’s hospital stay lengthened, Kat asked her church family to get involved. “People signed up for  2 or 4 hours shifts, and while they were there, we would get some sleep or have some family time,” Kat explains. “I told them that if anything happened, even the slightest sign of her condition going downhill, to call me. I would be right there.”

Parents Should Never Be Alone

The experience also grew Kat’s compassion for parents of hospitalized kids. “They need more support,” she says. “They need to be met at the hospital entrance door by someone who’s been through what they’re about to go through. They need someone to tell them they are not alone.” Whenever Kat hears of a parent with a seriously ill child in the hospital, she takes them a comfy pillow, an inexpensive blanket at Ikea, and a coffee card. Since reading A Different Dream, she’s decided to give them a copy of the book, too.

“The parents are often forgotten,” she says. “Everyone is concentrating so hard on the child, there’s no one to comfort the parent.”

God Doesn’t Waste a Hurt

“The biggest thing I’ve learned,” says Kat, “is that God doesn’t waste a hurt. God uses you in your pain and and in your strength. Your greatest ministry comes out of your greatest pain. That’s what I do now – not because I’m perfect, but because I’m willing. I still hurt, but it helps me to help others.”

Wow, there’s not much to add to that. But if God is using your hurt to help others, please leave a comment. I’d love to hear your story.

Jolene

Most days, my google alert system is pretty ho-hum, because it only finds content with my key words in it when I put up a blog post. But once in awhile, google helps me find new friends and great new blogs.

A Day in the Life of 4 Kids and a Dog

Not too long ago, google introduced me to Mama Kat and her blog A Day in the Life of 4 Kids and a Dog. A mutual blog friend, Victoria Nelson, had recommended Different Dream to Kat, and the google alert I received was her review of the book. Reading her words, I was amazed by how completely our family’s experience with a baby in NICU in 1982 resonated with her daughter’s PICU stay in 2010. I knew we had to talk and left a comment about her post.

Meet Mama Kat

A day or two later, the identity of Mama Kat was revealed when an email arrived from Kathie Carlson. We arranged a time for a phone call and talked for almost two hours. Over and over she said, “If only your book had been available when my daughter Tara was born. I felt so utterly and completely alone.”

Meet Tara

The story of her daughter, Tara, was amazing. I’ll give the highlights, and if you want to know more, go to www.carepages.com and type in “taracarlson.”

• Tara, the Carlson’s fourth child, came so quickly she was born in the hospital bathroom. Kat’s husband was trying to help her collect a urine sample and caught a baby instead.
• The baby was healthy, but a week after birth wasn’t eating well. Kat made an appointment with the lactation clinic. After  checking Tara’s vitals, she picked up the baby, ran out of the room and told the receptionist to tell the ER a blue baby would soon arrive. She ran across the street and into the ER. A team of doctors met her and within 15 minutes, Tara was bagged. Within 20 minutes, they knew she had spinal meningitis.
• Tara spent the next three months in the hospital PICU with multiple viral infections. At one point, seven of her organs were failing. She was septic. She had to go through dialysis.
• No one expected Tara to live, but she did. She’s now 2 1/2 years old and lives at home. She wears a heart monitor at night because of her congestive heart failure. She does quite well, but has to rest more than other children her age. And the smallest cold or infection results in another hospital stay. Since she came home a little more than two years ago, she’s been hospitalized nineteen times, the longest stay being two weeks.

Meet Tara’s Family

A host of other complications enveloped Tara’s family while she was hospitalized. The Carlsons were supposed to move two weeks after Tara was born. Their church family stepped in and packed their belongings for them. But their new house purchase fell through, and the family was homeless. So Kat’s sister took in Tara’s three older siblings. Kat and her husband Jim lived at the hospital.

Sounds incredible, doesn’t it? But Kat’s response to her family’s experience, which will be the subject of the next post in this series,  is even more incredible. You won’t want to miss it.

Jolene

If you’re over forty, you may recognized the bearded doctor in the picture as the colorful surgeon general who served under Ronald Reagan. If you’re a little younger, you may remember him as the guy who tried to provide health information via the web in it’s early days and failed. But if you’re the parent of child with special medical, you should be exceedingly grateful to him. He could be the reason your child is alive today.

First NICU in the United States

In 1946, he established the pediatric surgery division (only the second in the country) at Children’s Hospital in Philadelphia. In 1956, he established a neonatal intensive care unit (NICU) in the same hospital, the first NICU in the country. In his years as surgeon-in-chief there (1946-1981), he developed many groundbreaking pediatric surgery procedures and techniques used today.

Koop: The Memoirs of America’s Family Doctor

His memoir, Koop: The Memoirs of America’s Family Doctor was released in 1992 by Zondervan. I read it shortly thereafter, when our son was ten. When he described his tenure at Children’s Hospital in Philadelphia, I was transfixed. During those years, he perfected the art of anesthetizing newborns, which opened up the field of pediatric surgery. I began to weep when he mentioned the first major life-saving pediatric surgery he pioneered: the tracheo-esophageal repair that saved our newborn son’s life in 1982.

Thank You, C. Everett Koop

My son is alive today, thanks in large part, to C. Everett Koop. The same is true for your kids, if they’ve had major surgery. Koop is still alive. Born in 1916, he’s now 94 years old. I would love to send him a thank you letter, along with a picture of my son and his new wife at their recent wedding. Wouldn’t a card shower for his 95th birthday from former NICU babies be cool?

But I have no idea of how to contact him. If anyone does have information leave a comment. Let’s get this going while we can still thank him.

Jolene

The previous post in this series relayed the story of Baby Sam Owens’ short life and described the gift bag ministry his family started in his memory. It even gave you a sneak peak at the custom-made bags they’ve chosen to use.

What’s in Each Bag?

Each bag will contain the following:

• A Pottery Barn Sleep Sheep
• A Swaddleme infant wrap with openings for tubes
• An isolette-sized fleece blanket
• A gas card
• A copy of A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children
• A lullaby CD
• A 4HisHeart Ministry card in the heart pocket on the front of the bag

Why Those Items?

Joy explained why each item is in the bag.

• One day, Joy spied a Sleep Sheep at the main desk of the Cardiac ICU. Whey Joy discovered it played soothing “white noise” she asked if Sam could use it. From then on it was his constant companion, drowning out the harsh sounds of the intensive care unit.
• Like most babies, Sam loved to be swaddled tightly in his SwaddleMe wrap. The wrap was so effective in calming Sam, the Owens want other parents to have the same tool available to them.
• One day, Kurt and Joy found a fleece blanket in their mailbox at the Ronald McDonald House. Joy says it was smaller than most and fit perfectly in Sam’s isolette. And it wasn’t knotted like conventional fleece blankets, so it didn’t have hard bumps to irritate his tender skin. The members of the Cheerful Hearts in Christ’s Service (CHICS) group at Walnut Ridge Baptist Church in Waterloo, Iowa are making the blankets.
• Gas Card – Most babies with serious heart defects are far from home and travel costs mount up quickly for parents.
• A Different Dream for My Child – One of Joy’s friends gave her the book, and she said it was her constant companion and source of hope during Sam’s hospital stay. She wants to pass hope on to other families.
• Lullaby CD – Another way to cut out hospital noise and soothe newborns.

How Much Do They Cost?

The Owens family has twenty bags filled and ready to deliver to the Mayo Clinic Cardiac ICU. Eventually, they would like to expand the ministry to other hospitals where newborns with heart issues are cared for in Cardiac ICUs instead of in neonatal intensive care units. But to do that, they will need donations since ach bag and its contents costs about $100.

Kurt and Joy are developing a 4HisHeart website which will tell about the ministry. As soon as it’s up and running, I’ll add a link to this post so you can get there. Until then, you can read about the ministry and contact Kurt and Joy at Sam’s CaringBridge website. Or you can leave a comment here, and I will pass it on to Sam’s mom and dad.

Thank you, Kurt and Joy for reaching out to parents while you are grieving over the loss of your son. May your tears and thoughtfulness bring comfort to many hurting families.

Amazed by God’s redemption of our sorrow,
Jolene

Now and then, the comments parents leave at www.DifferentDream.com remind me of the work of our redeeming God in the midst of our children’s struggles. The comments Joy Owens leaves are like that. Her messages led to emails and eventually a phone call where she shared the story of their precious baby boy.

Meet Baby Sam Owens

Little Sam was born on November 18, 2009. His parents, Kurt and Joy, knew he had one of the most severe congenital heart defects, Hypoplastic Left Heart Syndrome, before he was born. One of his older siblings has a heart condition also, which is treated at Mayo Clinic, so Sam was delivered there, too. Sam fought to live for 72 days, then fell asleep in the arms of his parents who say he then, “awoke in the safe embrace of his Heavenly Father Jan. 29,2010.” You can read more about Sam’s short life and see pictures of the beautiful little boy at his CaringBridge website.

Meet Sam’s Family

Sam’s parents and his three older siblings (Parker, Matthew and Emma)  are grieving deeply for their lost child and brother. But they are not isolating themselves as they mourn.In fact, they are using Baby Sam’s memorial money to launch a gift bag ministry to families of newborns with serious congenital heart defects. They’ve named the ministry 4HisHeart-Snuggles from Sam. For a peek at the gift bags and how their creator is participating in the ministry, go to this etsy link to view them.

Why Gift Bags?

The unique circumstances of Sam’s hospitalization led to the creation of the gift bag ministry. At Mayo hospitals, all newborns with serious health issues go to the neonatal intensive care unit (NICU). After surgery, all but those with heart problems return there. Those newborns are transferred to the Cardiac ICU which cares for all heart patients, newborn to ninety.

Joy explains, “The heart care they receive in Cardiac ICU is excellent, but the unit isn’t set up to meet the special needs of newborns like NICU is.” So during Sam’s stay, Kurt and Joy implemented some NICU techniques that soothed and calmed their little boy.

The Owens are filling the bags with things they found helpful during Sam’s hospitalization. To learn the what and why behind each item, come back in a few days for the second part of this series. Until then, keep the Owens family in your prayers. Ask God to wrap his arms around them and bring them peace along with healing tears.

In memory of Sam Owens,
Jolene Philo

Several previous posts have addressed the need for parents to advocate on behalf of their hospitalized children. But until now, none of those posts dealt specifically with issue of patient safety.

Josie’s Story by Sorrel King

The importance of patient safety is made painfully clear in Josie’s Story, Sorrel King’s heart-wrenching book about her daughter’s death. Eighteen month old Josie died in 2001 because of a preventable hospital error. It didn’t occur at a small town hospital, but at Johns Hopkins, one of the best hospitals in the United States.

Josie King Foundation

After Josie’s death, Sorrel and her husband learned that 98,000 people die every year due to medical errors, which makes it one of the leading causes of death in this country. In light of such a startling statistic, they created the Josie King Foundation, which is dedicated to preventing hospital errors. At their website, you can find resources and information for parents, patients, and health care workers.

If your child has as scheduled hospitalization coming up or is hospitalized frequently, please visit this site. Or pass it on to parents of children with critical or chronic illnesses. By being proactive, you could save a life.

Jolene Philo

The previous post in this series introduced you to Justin and Victoria Nelson, proud parents of Moriah, age two. In this post, you’ll hear their answers to some questions about how Moriah’s medical saga has impacted them.

How Has This Changed You?

Justin: I learned to come to God and give him each day. Trust in God and constant reliance on who He is. That’s the only way to survive.

Victoria: As a mom, I used to be shy, but learned I can’t be. I have to speak up, be strong, and advocate for Moriah. I have to keep going, stand my ground, and be firm.

Justin: The situation simplified my perspective on life. I used to be ambitious for my family, but I’ve learned to be content with little things. I have my wife, my daughter, and God. I don’t need any other stuff.

Victoria: I’ve become passionate for kids with medical needs. Someday I would love to give back – support families and show appreciation to doctors and nurses.

Do You Have Advice for Parents?

Justin: Spend time with God each day. Hold onto his promises. He loves us more than we understand. Seek him even when you’re ticked off about what’s happening. Only God can help you do that.

Victoria: They should read your book, Jolene. It covers everything and says it all.

Jolene’s Disclaimer

Just so you know, I didn’t pay Victoria or bribe her in any way to say that about A Different Dream for My Child. In fact, this young couple is much more mature than my husband and I were when Allen was little. So I encourage you to visit www.momentswithmoriah.com often to see how they are doing and benefit from their wisdom and insight. Along with updates about Moriah, you’ll find links to other parents’ websites, information about support organizations, and much more.

You’ll also fall in love with Moriah and her parents. I sure did.

Blessings to the Nelsons,
Jolene

Every now and then, God flabbergasts me with his creative ways of bringing people together. Recently, he used modern cyberspace and an old-fashioned book to connect me with to delightful young parents.

Moriah’s Mom and Dad

I first learned about Moriah’s mom and dad, Victoria and Justin Nelson, by clicking on a google alert link to www.momentswithmoriah.com. A young mom I didn’t know had posted a review of  A Different Dream for My Child. Victoria said someone had donated to the San Francisco Children’s Recovery Center, so she picked it up and read it. Touched by whayt she read, she wrote a review and posted it.

Once she did, visits to DifferentDream.com and books sales increased significantly. So I went to Moriah’s website and was intrigued by her parents’ positive attitudes, even though Moriah has been hospitalized most of her short life.

Justin and Victoria Nelson

The Nelsons shared Moriah’s story during a recent phone call. Their website describes their daughter’s medical journey completely, so there’s no need to recount it here. Instead, here are a few of the struggles Justin and Victoria have experienced since they knew their daughter was on the way.

• They learned of Moriah’s heart defect when Victoria was six months pregnant. Abortion was out of the question for them.
• They became advocates for their daughter after she was born in Los Angeles on January 23, 2008. They researched the heart surgery she needed and contacting the San Francisco surgeon who saved Moriah’s life.
• Eventually, Justin took a job demotion that allowed him to transfer to San Francisco so Moriah’s medical care could continue there.
• Justin and Victoria don’t feel sorry for themselves. Since Moriah’s health has stablized and she’s become stronger in the last few months, they went through a “let down” and are now receiving counseling for post-traumatic stress.
• These parents are 26 and 25 years old, close in age to my kids. Their maturity and faith is marvelous.

In the second post in this series, the Nelsons talk about how Moriah’s life has changed them. Their insights will warm your heart and challenge your faith. Until then, you can learn more about them and see pictures of the adorable Moriah at their website.

Jolene Philo

P31 Woman Magazine, a great resource for women,  published my article Wedged Between Two Worlds in their October 2009 issue. They even featured A Different Dream for My Child in their magazine book store, which was very gracious of them.

Proverbs 31 Ministries Website

But they did even more, posting a bonus article on their website.  If one of your friends or family members has had a hospitalized child and you couldn’t think of how to help out, you’ll want to go to p31everydaylife.blogspot.com and scroll down until you find the article Ten Things You Can Do for Parents of Really Sick Kids.

P31 Women Magazine

When you’re finished with the article, surf the site to see what they have to offer. You can sign up for their inexpensive magazine and for their free daily devotions. You also can leave prayer requests, scout for speakers, and check out the blogs. I know many of the women involved in the ministry and highly recommend the magazine, the website and the ministry.

Then come back here and let me know what you think. In the meantime, have fun!

Neonatal Intensive Care Unit (NICU) doctors and nurses know that a stay in NICU can lead to post-traumatic stress disorder (PTSD) in preemies. But a recent study shows that a NICU parents are at risk of developing PTSD, too.

NICU Babies and PTSD

According to the New York Times Health Guide, post-traumatic stress disorder (PTSD) is a type of anxiety disorder. It can occur after someone sees or experiences a traumatic event involving the threat of injury or death. With that definition in mind, it’s not hard to understand why small children who have undergone serious medical treatment develop PTSD. This response in young children is well-documented. Most large hospitals have rained therapists, known as child life specialists, who help kids overcome and avoid PTSD.

NICU Parents and PTSD

But, according to Laurie Tarken’s recent article in the New York Times, parents of NICU preemies also are prone to developing PTSD. According to the article, “parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected.”

The author of one study, Dr. Richard J. Shaw, an associate professor of child psychiatry at Stanford and the Lucile Packard Children’s Hospital says, “The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events, and also witnessing other infants going through similar experiences.”

“And third, they often are given serial bad news,” he continued. “The bad news keeps coming. It’s different from a car accident or an assault or rape, where you get a single trauma and it’s over and you have to deal with it. With a preemie every time you see your baby the experience comes up again.”

What About You?

If you want to know more about PTSD in NICU parents, lick on this link, For Parents on NICU, Trauma May Last, to access the entire article. You have to register to become an online New York Times subscriber, but it’s free and the piece is well worth the read.

For me, the article explained a comment made by the therapist who recently treated our son’s PTSD, which was caused by early medical trauma. (Child life specialists weren’t readily available way back in 1982 when he was born and spent three weeks in NICU.)  On the last day of Allen’s successful treatment, the kindly therapist looked at me and asked, “What about you, Mom?”

I didn’t understand why he asked the question at the time, but now I do. He realized that I had suffered trauma, too. His simple, caring question validated emotions I’d hidden for years. His words were healing balm to my soul.

Now I want to pass the balm on to you in case you need healing, too: Moms and Dads of NICU kids, what about you?