Not too long ago I stumbled upon a resource created  by the National Association of Children’s Hospitals and Related Institutions (NACHRI). Their association has compiled a list of children’s hospitals around the world. If you’re the parent of a child with a chronic or critical medical conditions, this could be a great help for you.

Search the List at the NACHRI Website

You’ll find the searchable list at the NACHRI website. You can search the list using the following categories:

• Hospital Name
• Hospital Type
• State/Province
• Country
• Board-certified specialties
• Care Delivery Programs
• Community Outreach Programs
• Camps for Children with Special Needs
• Current Research

You can also search using key words. Or you can click the “Show All” button at the bottom of the search fields and see a list of all the hospitals listed alphabetically by states in the United States, and then alphabetically by other countries.

Click on the Links

When you click on the link for a hospital, you will go to the NACHRI home template page for the specific hospital. Select information about the hospital is available on the template pages. To find comprehensive information, click on the link located at the top of the template page. That link takes you to the hospital’s website.

How Can You Use the Listing?

I’ll be using the listing while researching my new book, Different Dream Parenting. If you’re the parent of a child with special needs, you may find some great ways to use the listing, too. If you like, leave a comment and share your ideas.

Thanks,
Jolene

Thanks to Victoria Miller, who sent me a message through Facebook, I have new friend. Victoria is the founder of the Trisomy 18 Foundation, which provides support for families of children who are diagnosed with Trisomy 18. She emailed to say she discovered my book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children, on Facebook and has been giving it to families in the T-18 community.  Gotta love a woman like that.

Read Victoria Miller’s Story

To really get to know Victoria, you have to read the story of her son’s short life which is posted on the Trisomy 18 Foundation website. Her moving testimony about the impact Isaac had on her and her husband reveals a great deal about her kindness and compassion.

Friends Don’t Always Agree

You will learn a great deal about Trisomy 18 at the foundation’s website. Please keep in mind that the foundation was created for all parents of children with Trisomy 18, not just those in a particular faith community. Therefore, you may not agree with everything you read there. I don’t either.

Perhaps Victoria doesn’t agree with everything she reads here. But we can still be friends. With her, I can still reach out to the parents of children with special needs. I can offer support and resources. In doing so, maybe some families will see Christ’s compassion and seek after him.

That’s the kind of friend I want to be.

Jolene

A few months back, some Different Dream blog posts ( Part 1 and Part 2) featured Justin and Victoria Nelson, along with their adorable little girl, Moriah. Earlier this week, the doctors met with the Nelsons and gave them some sobering news. Today, Moriah has a cardiology appointment and an echo, which will be very telling and could lead to some hard decisions for her parents and the doctors.

To read more about what’s happening, go to www.MomentswithMoria.com where the Nelsons do a better job of explaining what’s happening than I can. And please, keep this family in your prayers, asking God to hang onto them if it becomes too hard for them to maintain their grip on Him.

Thanks,
Jolene

If you’re the parent of a child diagnosed with special needs, you know how hard it is to remember stuff. You need to remember doctor’s appointments and recommendations, medication dosages, reactions to medications, food allergies, behavioral issues and a whole lot more.

Care Notebook

But sleep-deprived, stressed parents can’t remember all that the stuff without help. And that’s where a Care Notebook comes in. They require some initial organization, but once you have it in place, it will reduced your stress and maybe even your sleep deprivation, if you read it before bedtime!

About.com

Terri Mauro, who was the subject of yesterday’s blog post, introduces Care Notebooks at her Make a Care Notebook page. Be sure to click on the link in the middle of the page that says Care Notebook to find all sorts of downloadable and printable forms. If the project overwhelms you, call one of your organized friends who keeps offering to help. Believe me, you will make her day by recognizing her area of expertise and asking her to put it to good use.

If you use this information to put a Care Notebook together or if you already have a system that works for you, share your thoughts with the rest of us.

Jolene Philo

One overriding memory drove the writing of A Different Dream for My Child. Every time I thought about our weeks and months in the hospital with Allen, the sense of isolation and confusion that overwhelmed us in 1982 came rushing back.

Thank You, Google Alerts

So when the opportunity arose to write this book and break down the walls of isolation around other families, I was overjoyed. But writing a book and getting it into the hands of parents who need it are two different things. Since Different Dream was released on September first, I’ve been praying for God to get it into the hands of parents who need it. Now, thanks to google alerts, there’s evidence of God answering my prayer.

Random Thoughts from the Unhinged and Unfeigned

The first sighting of a Different Dream reaching a family with a special needs child, a family far beyond my personal sphere of influence, landed in my inbox on November 5. The link led me to a blog called Random Thoughts from the Unhinged and Unfeigned, and a mom struggling with their youngest child’s diagnosis of Trisomy 18. The mother says, “This is a book I think all of my T-18 mommy friends need to get.”

1 Large Family in 1 Small Farm House

The second sighting arrived on November 14. Again, I clicked on the link in the google alert, and surfed to another blog: 1 Large Family in 1 Small Farm House. This mother’s grief was raw and bleeding. She’s in limbo as the doctors try to diagnose her baby’s condition. Baby Eliza is sick, disabled, and possibly deaf, but her condition doesn’t follow the pattern of any known chromosome abnormalities.

This mom said she only knows one other parent who has a disabled child, not much of a support system. Then, someone gave her a copy of Different Dream, and she says. “Reading the first few stories in this book… A Different Dream for My Child… by Jolene Philo, I see there is a light.  Just a different one.  A different journey.”

More Walls Remain

But so many parents are imprisoned behind walls of isolation, struggling to find hope. My heart aches for them, and I continue to ask God to put the book into the hands of parents who need it. If you can help, if have ideas of how to punch through those walls or tear them down, please let me know. You could be another answer to prayer.

Jolene Philo

In the previous post, I explained the important role breast feeding played in our newborn son’s recovery from surgery immediately after his birth. In this post, I want to assure those of you who aren’t breast feeding for whatever reason, I am not trying to burden you with guilt or judge you in any way. That said, I encourage moms who want to breast feed, even if their newborns are struggling with health issues, to pursue their desire.

Breast Feeding Babies with Disabilities

If your newborn has a disability, you may wonder if you should give up your dream of breast feeding your baby. In many cases, you don’t need to do that. Go to this page at the La Leche League website for a general overview of the subject of breast feeding babies with disabilities.   For information about specific conditions or disabilities, check out the links on their Breastfeeding Disabled or Handicapped Babies resource page. And remember that even if your baby has a stomach tube, you can express breast milk for tube feedings.

Advantages of Breast Feeding

According to the La Leche League, breast feeding provides babies with several advantages:

• Studies show breast milk provides antibodies for childhood illnesses.
• Breast feeding decreases the likelihood of allergies and dental issues.
• Brest feeding aids jaw, tooth and speech development as well as overall facial development.

Mothers also benefit from breast feeding in the following ways:

• Saves time.
• Saves money.
• Saves the environment.
• Reduces the risk of breast and ovarian cancer.

To find more information about the general benefits of breast feeding, visit the La Leche League’s resource page.

Choose What’s Best for You and Your Baby

Once you’ve considered your choices carefully, make the decision that works for your family in your particular situation. If you do choose to breast feed, don’t go it alone. Ask the NICU nurses for assistance. They help moms learn to breast feed disabled children all the time. If for some reason they can’t help you, use the La Leche League’s locater to find someone who can.

Most of all, be patient. Considering the stress in your life right now, it may take awhile for your milk to come in, for you to get the hang of pumping, and for your baby to learn to nurse. But you can do it, and so can your baby.

If you have tips about how to breast feed NICU babies, please leave a comment. I’d love to hear from you!

What about breast feeding? If your newborn is in neonatal intensive care, that’s a question you should be asking. Our son’s story tells you why. And it explains why I’m the proud owner of an early 1900s vintage breast pump.

Allen’s Story

When Allen was born with an esophageal birth defect, he couldn’t eat through his mouth for several weeks. “But what about breast feeding?” I asked the doctor.

“Get a breast pump,” he advised.

The nurses found one and taught me how to use it. To this day, I am grateful for their encouragement because it soon became evident that Allen had a severe milk allergy. Whenever formula was added to my breast milk and poured it into his feeding tube, he would spike a temp. He threw up. He was fussy and uncomfortable, and his stools were runny.

Though I have no scientific studies to back up my hunch, I believe breast feeding saved our son’s life. I know it sped up his initial recovery. And six weeks later, when complications arose requiring more surgery and new feeding tube, it made a big difference again. My breast milk was the only food he could tolerate for almost a year. Without it, I don’t know what would have kept Allen alive.

How to Get Started

Your NICU newborn may not have a milk allergy. His life may not depend on breast feeding. But even so, if you can express milk for your baby, it’s a good thing to do. Your little one needs every possible advantage to aid recovery, and breast milk is one of the best ones you can provide. So ask your child’s nurses how to get started.  If for some reason that’s not possible, ask the neonatal nurses if the hospital has a breast milk bank. Or contact the closest La Leche League to see how they can help you find one.

In upcoming posts, the benefits of breast feeding will be explored, along with tips about how you can make it work, along with information about the La Leche League.

A Vintage Breast Pump in My Dining Room

But for now, let me explain the breast pump picture. My maternal grandmother broke up housekeeping just as my year-long breast feeding stint ended. When Mom unearthed a vintage, early 1900s breast pump in Grandma’s basement, she gave it to me.

“Here, Jolene,” she said. “You earned it.”

The little pump’s been on display in my dining room ever since. It’s a constant reminder of the three days after Allen’s birth, when he was 700 miles away from us. His life was out of my hands. All I could do to help him was to express breast milk. It was a small thing to do, but it made a big difference. Every time I see the small pump sitting in it’s bright red box in the dining room, it reminds me of the importance of small things.

Sometimes, they make all the difference.

Who would you call if  your child was seriously injured or diagnosed with a critical illness or chronic condition? Your spouse? Your parents or siblings? Your closest friend? People who are extremely close to your child need to be contacted, but they might not be the best first contacts, especially if they tend to respond emotionally.

A good first contact person is someone who meets several of the following criteria:

• Remains calm in a crisis
• Shows compassion, but can maintain emotional distance
• Has medical training or background
• Knows how to handle a medical crisis
• Knows your family
• Shares your faith

People who might qualify are:

• Your church pastor
• A relative (cousin, aunt, uncle)
• A longtime neighbor
• A member of your church family who’s a nurse, doctor or EMT
• A co-worker or boss
• A teacher or school counselor
• A member of your small church group, sometimes called cell groups or care and concern groups

If you’re too emotional to talk on the phone, ask the doctor or nurse to call and speak to your contact person. If you do the talking, explain the situation quickly and clearly. Ask your contact person to deliver the news to close family members face-to-face if possible. If the news can only be delivered by phone, ask the contact person to make sure someone is with your loved ones when the call is made. And ask them to arrange rides to the hospital or doctor’s office for family members and loved ones.

By enlisting a contact person, you’ll begin to create a support system to use throughout your child’s illness and hospitalization. Don’t hesitate to ask for help. It’s the right thing to do. It’s the safe thing to do. Your family will be glad you did.