Help for NICU Families

By Sally Loesch
on June 22, 2017

 


A couple of weeks ago, I shared information about some of the organizations that provide a place for parents of hospitalized children to stay when their babies are receiving medical care far from home. Of course, the financial burden on families is not limited to the cost of housing. Even when a baby is hospitalized near enough the family’s home that parents can make the trip to the hospital and back each day, the cost of gas, meals, and childcare for older siblings adds up quickly. There are many organizations that offer financial support to help cover those expenses. Here are some groups to look to if you need help making ends meet after giving birth to a premature baby:

As with questions about housing, the first person parents should talk to about financial assistance is a NICU social worker or family liaison. There are many local support organizations across the country that work closely with individual hospitals to provide gift cards and vouchers for NICU families. If there’s one in your area, your social worker can guide you through the process of requesting help.

Project Sweet Peas is a family support organization that provides care packages, peer-to-peer support, information, and financial assistance to families with premature babies nationwide. Their NICU Family Financial Assistance Fund provides monthly grants to help parents manage the many expenses of having a baby in the NICU. You can find more information about applying for a grant, or supporting the fund with a donation, here.

NICU Helping Hands is a preemie parent support organization that offers many services to families, including education, emotional support, and financial assistance. Their Family Assistance Program provides gift cards to families to cover the cost of groceries, restaurant meals, and gas while their baby is in the NICU. You can find out more about the program here.

Miracle Babies provides information for parents, support for research in the field of premature birth, and financial support for families in 15 hospitals in California and the Atlanta area. Their goal is to help with the cost of transportation, meals, and childcare to ease the stress of financial concerns, enabling parents to be with their babies, bonding with and caring for them. You can find out more about program specifics and contact information here.

These are just a few of the many organizations providing financial assistance to NICU families. If you'd like to make a donation to help parents in this way, check with you local hospital to find out if there's a group they work with. Little Giraffe Foundation is another  national organization that funds grants to support preemie parents, and is worth a look if you'd like to contribute. Have another suggestion? Let us know about you favorite preemie parent support organizations.

Happy Father's Day, Preemie Dads!

By Sally Loesch
on June 15, 2017

With Father’s Day coming up this weekend, we want to recognize all of the wonderful fathers of premature babies. Your love for your children, the way you care for them and their mothers, and your unique bond with your babies is truly touching to see. Thank you for sharing your stories, encouraging other fathers, and offering a perspective that is often overlooked. You are irreplaceable and an inspiration.

Here are some of the preemie dads we love following and insights into how dads cope with having a baby in the NICU.

Little Daisy-Mae is a Facebook community started by preemie dad Wayne Little, with his wife Jenny, to share their daughter’s story, and encourage other families with micro preemies. Daisy-Mae was born in 2013 at 25 weeks, and is now a darling little girl, doing all of the things 3-year-olds will do.

Hand to Hold’s PreemieBabies101 is a fantastic blog with articles addressing a wide range of issues related to premature birth. This one, in which mom Beth Puskas interviews her husband about his experience of their son’s premature birth, is especially touching.

Graham’s Foundation put together this video for Father's Day a few years ago, and it's a beautiful salute to dads and the role they play in those early NICU days. It features photos of fathers with their babies, and there’s just nothing like the looks on their faces. It’s a wonderful thing.

Another video, from UNC REX Healthcare in Raleigh, NC, features dads talking about their experiences and offering advice to new preemie dads. A neonatologist also offers insight into what the NICU experience can be like for dads and how fathers can try to balance being there for the baby and the mom, while also looking after themselves.

A preemie dad is a special kind of dad. The demands of fatherhood in these circumstances are high, and over and over dads say there is just nothing that compares to the experience. The fear, the uncertainty, the sadness, the joy; preemie dads face it all and we want to take the time to say that you have our deepest admiration and respect. Happy Father’s Day!

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When the NICU Is Far From Home

By Sally Loesch
on June 08, 2017

Having a premature baby raises so many questions for parents. How long will the baby be in the hospital? What can we do to be involved in his/her care? What does my baby’s diagnosis mean, and what’s ahead? And unfortunately, for some parents: Where am I going to sleep tonight? The unpredictability of premature birth means that sometimes newborns need to be cared for in a NICU far from the family’s home. Whether labor starts unexpectedly on an out-of-town trip, or a family’s local hospital doesn’t have the capacity to treat the baby’s condition, some parents face the additional challenge of finding and paying for a place to stay. Here’s a look at some of the options parents have and how the rest of us can help support families in this difficult situation.

For parents: the first place to ask for information is your hospital’s social worker. She or he should be able to direct you to services in your area. As older NICUs are being renovated and new ones are built, some hospitals are incorporating spaces for families into new floor plans. Private rooms are becoming more common, sometimes with pull-out couches to give parents a place to stay right in their baby’s room. If that’s not an option, here are some of the independent organizations that provide places for families to stay.

Ronald McDonald House Charities is the largest nation-wide organization that offers housing to families with hospitalized children. There is at least one Ronald McDonald House in every state, and many more around the world. They offer a place to stay and home-cooked meals to families, regardless of their ability to pay, and are supported by volunteers, individual and corporate donations, and family contributions.

Some hospitals that provide specialized care have affiliated hospitality houses that offer lodging to out-of-town families at low or no cost. Believe In Tomorrow Children’s House at Johns Hopkins in Baltimore, Hubbard House and Perry Pavilion at Orlando Health, and Bannister Family House at UC San Diego Health are a few examples. The Healthcare Hospitality Network is an umbrella organization of hospitality homes and is a good resource for more information.

Hospitality Homes is a unique non-profit organization in the Boston area that pairs out-of-town families with volunteer hosts who offer a place to stay in their homes free of charge. Not only do families have a place to sleep without the stress of finding a way to pay for lodging in an expensive city, they also often make lasting connections with the generous volunteers who host them.

These, and similar organizations across the country, provide a much-needed service for families with hospitalized children. But there are often waiting lists, and even a minimal family donation can add up over an extended hospital stay. Supporting hospitality houses like these is an important way the rest of us can help care for premature babies and their families. For anyone who would like to help families with children in out-of-town hospitals, all of these organizations gratefully accept monetary and material donations, and often volunteers. Getting involved with a hospitality home in your area is a wonderful way to make a real difference for families with preemies.

Of course, a baby's hospitalization an hour or two from home also presents difficulties for parents, even if they are close enough to sleep at home. We'll talk about some of the help available for preemie parents in that situation in a couple of weeks. We'd love your input; if you'd like to share your experience, or let us know about an organization not listed here, we'd love to hear about it!

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Four Ways to Nurture a Child’s Independence

By Sally Loesch
on May 19, 2017

Child playing with bubbles
© | Dreamstime Stock Photos

Kids need opportunities to be independent. As a parent, I’m sometimes tempted to do everything for my toddler, without her input, so that we can get on with the day. Sometimes she just moves...so...slowly. But in my better moments, I remind myself that she’s learning so many skills at this age and is so enthusiastic about all things new, it would really be a shame to not let her have the joy of accomplishing tasks herself, no matter how small. It’s one of those balances parents and caregivers try to strike, day after day; how do we give children the guidance and structure they need while allowing them to grow and explore in their own way? I think we all need to remind ourselves every so often to slow down and reflect on what we can do to nurture a child’s independence.

This is especially true in caring for children with special needs. As a full-time caregiver for a baby with Down Syndrome, I learned the immense value of creating opportunities for a child to practice decision-making and learn about cause and effect. By structuring playtime and routine activities to allow him increasing levels of independence, his family, therapists, and I did our best to help him participate fully in every family and community activity a typical child would. His parents’ insistence that he be included, encouraged, and supported in every way is, I think, the primary reason he has grown into a confident, capable kid.

Whether they have developmental delays or not, children thrive when given opportunities to take charge of age-appropriate tasks. Here are some ways we can nurture children’s independence every day:

    1. Communicate. This starts long before a baby learns to talk. Baby sign language is an especially useful tool in helping a child with a developmental delay learn that he or she can communicate their needs, preferences, and ideas to the rest of the world. I’ll never forget the day we were leaving the library and the little guy I took care of, at 18 months old, made the “Thank You” sign to a man who held the door for us. It was such a clear indication that he was comfortable and confident in his ability to “talk” to adults. And he was able to do that because, from the very beginning, he was encouraged to communicate and everyone around him actively listened to what he was telling us. If your child has a delay and is receiving early intervention services, take full advantage of a speech therapist’s expertise.They have a lot to offer.

    2. Encourage self-feeding. Mealtime is such a great opportunity to help kids develop good habits of self-reliance. Plan for enough time at breakfast, lunch, and dinner to allow your baby to practice feeding himself. It’s especially important for children with special needs to be allowed to experiment with the motor skills related to eating. The experience of unhurried eating is also important for their speech development; it’s one of the ways babies learn how their mouths move. Learning how to pick up a blueberry or use a fork are the building blocks to future skills like holding a pencil or zipping a zipper. And if you set the expectation that your child will feed herself from a very young age, it can help reduce some of the conflict around eating when she reaches toddlerhood.

    3. Ask questions. When adults ask questions, and really listen to the answers, children learn that they are valued and have something to contribute to their families and communities. From the beginning, give your child opportunities to tell you how they are feeling, what they see, what they think. Even a very young baby can tell you that he loves his bath or dislikes being put in his car seat. Acknowledge his opinions, and if you need to do something he won’t like, try to create a choice for him to make.

    4. Share your child’s enthusiasm. Most kids latch on to topics that interest them from a very young age. Right now my daughter is sooo into dinosaurs and barns. A child’s excitement over even mundane things provides caregivers with a wonderful opportunity to encourage curiosity and a love of learning. Take a trip to the library to find a book about dinosaurs and show the child how you look it up in the catalog or encourage her to ask the librarian for help. Show her that you care about her interests and help her explore ways to learn more.

    Kids’ natural curiosity and enthusiasm is one of my favorite things about them. They are just so full of life. I find that allowing them room to experiment and to participate in decision-making makes life more fun for everyone!

    Happy Mother's Day

    By Sally Loesch
    on May 11, 2017

    We want to wish a very Happy Mother’s Day to all of the amazing moms we’ve had the privilege to meet over the years. Your courage is an inspiration. Mothers with newborns in the NICU, mothers of NICU graduates, mothers who have lost children - you all deserve an extra measure of appreciation and respect this Mother’s Day, and every day, for stepping up to so many unexpected challenges. When you spend long days with your baby in the NICU, when you dedicate countless hours to helping your baby learn to eat and sit and walk, when you grieve: you show the world what true love is.

    We also want to recognize all of the mothers who have used their experience to support other families. Whether you’ve had a preemie and then helped a friend in the same situation, or started a preemie parent support organization: thank you! We love following the work of these moms who share their knowledge and perspective to support other families:

    Natalie Estelle and Joi Turner of Preemie Moms Rock. These preemie moms started Preemie Moms Rock last year to offer healthy meals, emotional support, and opportunities to relax to NICU moms in Baltimore. Local organizations like this are so important to the life of a community, and what Natalie and Joi are doing is a beautiful thing. And the portraits of preemie moms on their Instagram page are awesome!

    Martha Sharkey of Today Is A Good Day. Martha and her husband Paul have used their experience of premature birth and infant loss to comfort and encourage other families through listening sessions, financial grants, and care packages. Today Is A Good Day is involved with Abington Memorial Hospital in the Philadelphia area and is another wonderful example of how a family’s contribution to their community can make a big difference.

    Jennifer Hall and all of the other mothers involved in Graham’s Foundation. From delivering care packages, to guiding parents to informational resources, to connecting families through their Preemie Parent Mentors program, Graham’s Foundation does so much to make the NICU experience a little more manageable for families across the country.

    Kelli Kelley and all of the moms at Hand to Hold. Hand to Hold’s Preemie Babies 101 blog, NICU Now podcast, and parents' forums are all excellent resources for parents with questions on topics ranging from how to cope with feeling of guilt after giving birth prematurely to potty training a child with special needs. The women of Hand to Hold provide a wellspring of knowledge and experience and we thank them for it!

    Know another mom who is making a difference in the lives of preemies and their families? We’d love to hear about her! And for all you mothers loving your babies through the tough times: stay strong! You have our admiration, respect, and best wishes this Mother’s Day.

    With love,

    All of us at Jacqui’s Preemie PrideSaveSave

    Milk Banks

    By Sally Loesch
    on May 08, 2017

    As the benefits of breast milk for premature babies are being formally recognized by major health organizations including the American Association of Pediatrics and the World Health Organization, major obstacles remain when it comes to getting donor milk to the babies who need it. I want to talk today about human milk banks and how we can all support efforts to provide the very best nutrition for preemies.

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    March for Babies

    By Sally Loesch
    on May 01, 2017

    We had a wonderful time yesterday at the Greater Western Maryland March for Babies! The weather was beautiful and it was a real pleasure to get out with so many friends and neighbors to support the March of Dimes. It is such an honor to be a part of a community that comes out in such numbers to encourage each other, honor the memory of children who have been lost, and contribute to the March of Dimes' efforts to treat and prevent premature birth.

    Here are some pictures from the day:

    The starting line at the Greater Western Maryland March for Babies

    We arrived at Middletown Park an hour before the walk start time and the parking lot was already almost completely full! I can't say enough about how great it was to see so many families there, and the park was a beautiful place to start and end the walk.


    After the Superhero Sprint

    My favorite part of the day was the Superhero Sprint. The kids got capes, and a few had adorable purple masks. They ran a short course just before the walk began. There were firemen in capes running along with the kids, cheering them on. The children seemed to have a great time, and it was lovely to see the pride on so many parents' faces.

    Lots of encouragement at the starting line

    We walked 3 miles through Middletown, passing signs commemorating and celebrating premature babies and their families. It was touching to see families eagerly looking for their signs and stopping to take pictures next to them. We found Jacqui's near the end of the route.


    Jacqui's sign on Ambassador Avenue

    After arriving back at the park, families had lunch and relaxed on the grass overlooking the pond while the kids played. It was a beautiful day, and it was such an honor to be a part of a community event to support preemie babies and their families. We're looking forward to doing it again next year!

     

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    Snack Trays for Toddlers

    By Sally Loesch
    on April 24, 2017

    On the to-do list for this week: initiate snack time revamp. My kid's entrance into toddler-hood has brought new attitudes concerning food, of course. She used to happily taste nearly everything we put into her mouth. Whether she'd accept a second bite is another question, but we've been lucky in that she has generally been open to trying a wide variety of foods. It seems like yesterday she was sticking her chubby little fist in a dish of fish sauce and happily licking it off. But she has things figured out now. She knows that some foods taste better to her than others, and is perfectly happy sticking to the ones she already knows she likes. So I've gotten in the habit of relying on the same few snacks: raisins, crackers, cheese, whatever fruit we have on hand. While they're usually healthy enough, I'd like to do a better job of offering her a wider variety of foods at snack time and help her continue to explore new tastes and textures. So we're trying these snack "buffets". You can use ice cube trays or muffin tins, depending on the age and number of kids you have to feed. You can cut everything to fit in the spaces, and to the right size for your child. Steer clear of choking hazards for little ones, of course!
    Here's a list of foods that make a healthy, colorful snack tray:

    Vegetables

    • Carrots (steamed and sliced for a younger baby)
    • Tomatoes
    • Broccoli
    • Edamame
    • Sweet potato, cooked and cubed
    • Cucumber
    • Pickles

    Dips

    • Hummus
    • Nut butter
    • Tzatziki sauce (great recipe here)
    • Whipped cream cheese
    • Sour cream
    • Plain yogurt
    • Salad dressing

    Grains

    • Whole grain bread, cubed or sliced
    • Crackers
    • Rice cakes, broken into pieces
    • Pita
    • Large-grain couscous (Israeli couscous)
    • Noodles

    Protein

    • Boiled egg slices
    • Salami
    • Ham
    • Other favorite meat, sliced or cubed
    • Walnuts
    • Almonds (sliced or slivered for younger kids)
    Fruit
    • Blueberries
    • Grapes
    • Orange slices
    • Strawberries
    • Mango

    Other

    • Cheese cubes; maybe be adventurous and try new kinds. There's so much more than cheddar and string cheese!
    • Popcorn
    • Jello cubes, like these

    I'll let you know how it goes at our house. I only just tried this for the first time last week, but my two year old will now eat steamed broccoli, so I think we're on to something! I'll post pictures on our social media sites if you'd like to follow. As always, we'd love to hear your ideas too. Happy snacking!

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    Easter Fun

    By Sally Loesch
    on April 16, 2017

    Our family spent Easter afternoon with the classics: dying eggs and hunting for the filled plastic variety. The children involved range in age from two to eight, so we tried to arrange the activities so that they could all enjoy them together, regardless of their age and ability level. Here's how we tried to keep everyone involved:
    Give each child a designated color to search for on the egg hunt. Faster children sometimes tend to vacuum up everything in their paths, no matter how many times you remind them to leave the "easy" eggs for the others. So we gave each kid a basket with a ribbon that matched their eggs. We hid the yellow eggs for the youngest on the lawn, and the older kids passed them by in search of their own. They also enjoyed the extra challenge of looking for a specific color.
    When it came to egg dying, the youngest wanted to help, but wasn't quite able to manage an egg on a spoon in a dish of dye. So we put her egg inside a whisk and let her gently stir it in the bowl of dye. She still needed some guidance, but it was a great way to let her take charge of the activity.
    If your child has allergies, or you want to limit the sugary snacks for any reason, there are lots of alternatives to putting candy in all of the Easter eggs. Our family fills most of our eggs with popcorn, some with non-edible treats, and a few with chocolate. The popcorn has always been a favorite. Whether your child has food sensitivities or not, it's a good option for a healthy snack.

    The whole family agreed that the color-coded egg hunt was a great success and we're looking forward to next year. What about you? What do you do to make holiday activities accessible for everyone in the family? We'd love to hear your ideas!
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    Literacy Development: 7 Tips for Reading with Baby

    By Sally Loesch
    on April 10, 2017

    Parents, grandparents, and older siblings can use story time to help babies learn about the world and develop language skills, and to strengthen family bonds. And of course reading to a baby from a young age is incredibly important in laying the foundation for the child’s own future reading skills. As a new parent, I hear all the time about how wonderful reading is for a baby's development. I've enjoyed reading to my daughter since she was born, so I was excited when her dad, who is a special education teacher, had the chance to take a course in childhood literacy. We've tried to incorporate some of the techniques he learned into our habits at home. The background on how children learn is fascinating, and I thought I'd share some of it.

    One of the goals of reading to a baby is to develop “print awareness”. Print awareness starts before children even understand that words on a page mean anything. Repeated association of printed text with sounds and words builds to the eventual understanding that letters contains meaning. This is the very basis of literacy in early childhood, and it is one of the reasons reading with babies is so beneficial.

    So here are some ways to help your child develop print awareness and make the most of story time. Some may be new, and some you may do already. All of them enrich your baby's experience with books and build the foundation for future literacy skills.

    For Babies:    

    Let baby help turn the pages.  One of the very first lessons a baby learns is that we generally read in one direction. Of course babies will flip pages back and forth and hold books upside down, and it is wonderful for them to explore in their own way. As they become more experienced, they will learn that, in English, we read books from left to right, top to bottom, and of course right-side up.

    Change voices for different characters. By differentiating between voices, you introduce the concept of conversation in print. It also makes the story more entertaining for the baby! The child will eventually learn that quotation marks and paragraph spacing represents dialog.

    Talk about the pictures on the page. This of course is a chance to interact more with your baby while you read. It also introduces the idea that the words on the page are related to the images, and that people can use written words to describe things they see.

    For Toddlers:   

    Begin to draw attention to the text on the page by pointing to it. Eventually a baby will be able to tell the difference between pictures and letters in a book. By tracking, or pointing to the words as you read them, you teach the child that you’re not just telling a story about the pictures you see; you are reading the words themselves.

    Ask the child to find familiar letters on the page. O is a good one to start with because it has an easily recognizable shape that’s the same in upper- and lower-case. As they begin to learn the alphabet, it’s important that children learn that we use the letters to form words. Picking out letters within words is a great way to introduce the concept.

    Look for colors on the page and talk about them. Incorporating any new skill the child is learning into story time reinforces what they’ve learned in other contexts. It also makes the story more exciting; if you’ve just been outside looking at the green grass, and then read about it in a book, the child learns, yet again, that books are a printed representation of the physical world around them.

    Talk about the story after you’ve finished reading. Having a conversation summarizing what happened helps the child internalize the story and develop critical thinking skills. Ask age-appropriate questions related to the story, answering them yourself if the child isn’t able to.

    These common-sense approaches really do make a difference. Simply by spending time with your children, talking and interacting with books, you're helping them learn fundamental literacy skills. So have fun, and happy reading! 

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    From the Blog

    Help for NICU Families

    June 22, 2017

      A couple of weeks ago, I shared information about some of the organizations that provide a place for parents...

    Read more →

    Happy Father's Day, Preemie...

    June 15, 2017

    With Father’s Day coming up this weekend, we want to recognize all of the wonderful fathers of premature babies. Your...

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