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Ways You Can Support a Family with a Premature Baby

Supporting friends caring for a premature baby can be such a Godsend during an already difficult time. Here are some great suggestions how you can help.

I wasn’t prepared for a premature baby when my daughter was born 6 weeks early. Since we were adopting, some of the normal concerns of pregnancy just weren’t on my radar.

And because we were matched so late into the pregnancy, we’d only had a few weeks to prepare at all before being thrust into parenthood with the emergency of premature birth.

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Today, November 17 is National Prematurity Day. According to WHO, each year more than 15 million babies are born prematurely, that’s more than one in ten. And these numbers are increasing! Chances are someone you know will have a premature baby.

They will need help & might not even know what they really need.

Looking back, I realize how difficult that time really was. It was kind of a whirlwind, so we weren’t able to process much in total survival mode. However, our friends did a few things that made life easier. And there were a few things that would have been extremely helpful.

Having a premature baby may mean an extended stay in a NICU far from home.

Our daughter was born three hours away. It was unlikely we could move her before we were able to bring her home. We were there for the duration, which potentially could have been until her due date.

Offer to house sit or pet sit or babysit.

In a matter of minutes, we had to pack for an indeterminate period of time three hours away without knowing what we would really need. We didn’t have time to think about preparing the house, setting lights on timers, pausing mail delivery, etc.

A dear friend and her husband volunteered to take our rescue pup while we were out of town, which was our largest concern about being away from home for an extended time. Also, our sweet neighbors watched over our home, brought in packages, and made us a welcome home banner and a sweet bundle of gifts.

Taking care of things at home meant we could focus on just being at the hospital, worrying about our new baby, and learning our new roles as her parents.

If your friends have other children, do what you can to help with the older siblings. If the parents have to be in one city with their premature baby while their other kids need to go to school back home, can you keep them overnight? pick them up after school? walk them to the bus stop? Offer to help grandparents navigate an unfamiliar area if they come to help? Whatever you can do to help will be one less worry for your friends.

Give or Send them Restaurant Gift Cards.

Without time to plan, we didn’t take any food or even know where grocery stores were. We were living on whatever restaurants were under 5-10 minutes away from the hospital. It was not economical at all. We had two hours between each NICU visit, so we would race out, grab something, and be standing at the hospital NICU door when we could next get in to see her.

If you’re tech savvy, you might be able to use Google maps and find out which restaurants are close and send them email gift cards.

Even if they are close to home, they will probably not have time to cook for weeks. Those gift cards will save time and money even after baby comes home.

Prior to my daughter’s birth, I had totally given up caffeine. After one day in the NICU, I was a Starbucks fanatic. Coffee gift cards are likely going to be welcome! Newborns are brutal on sleep as it is, but the NICU is just an additional trial with scrubbing, gowning, feeding schedules, and worry.

Financial support is often necessary

You can always start a GoFundMe or something similar to help offset hotel and living expenses as well. We never considered that we might stay more than overnight if she were full term, so we hadn’t budgeted for it. Needing to be close meant staying at the hotel nearest to the hospital which wasn’t the least expensive option.

While no one expects help with financial concerns, you can’t know the myriad of expenses that stack up quickly and help in this area can mean so much.

If you can, even call the hotel and pay for a night.

Depending on location, parking costs may be outlandish. Large cities can charge $25 a day to park at both the hotel and hospital. An extra $50 per day, plus meals can add up quickly.

We also didn’t bring enough clothes for ourselves or her. All our baby clothes were for a large full-term infant since she had been measuring very big. We had to run to buy the tiniest preemie things for her and a couple of things for us.

While we had zero medical expenses due to medicaid and our military insurance, it still cost over $2000 for the expenses of staying out of town during the NICU stay.

Sadly, raising money might also be helpful if the baby’s medical care is beyond insurance coverage or if the baby was just born too early to survive. No parent plans for a funeral. Over one million premature babies die each year. The grief of losing the baby is already going to be devastating. If you can help with expenses toward the arrangements, it can take an additional stress away from an already distraught family.

Be present however you can while they care for their premature baby.

Over the phone or in person, be willing to listen and pray with them. Sometimes, all the medical stuff can be daunting. Being able to fuss and worry and vent without judgment would be very meaningful.

If the baby is really struggling, they may not want to leave even to eat or sleep. Think of ways to be a help, volunteer to bring pillows and blankets or fresh clothes from home.

If you can come sit at the hospital or call, do it. Being far from home, scared and stressed, is isolating. I know hearing from my friends helped me talk through what we were facing and process my emotions.

If you are a co-worker, do whatever you can to bring them work or email. If you can take care of some of their workload, it is a huge relief. I was teaching full-time and knowing I had friends coordinating with my substitute let me focus on my daughter.

Lastly, if you don’t know what they need, ask and offer some tangible suggestions.

Offer something, even mowing the lawn, watering plants, grocery shopping, doing laundry, cleaning house. When people say “If you need anything . . .” , it’s hard to know if they really mean it. But when you make a specific suggestion, they can reply with something similar they need or remember your offer in the future.

Having a premature baby takes the fear of parenting a newborn to a whole new level. Medical concerns and worry and sleepless nights can make new parents feel lost and helpless. But even seasoned parents need support.

The friends who stood by our side made a difficult time easier and we’ve never forgotten those who supported us in that emotional rollercoaster.

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Going Gluten Free

Going gluten free isn't a journey I ever wanted to undertake. I LOVE chewy, warm, rich bread. But being a parent takes me to places that I never would have imagined.

Going gluten free isn’t a journey I ever wanted to undertake. I LOVE chewy, warm, rich bread.

But being a parent takes me to places that I never would have imagined.

Our daughter started complaining about stomach pain early into 2016. In her squeaky, small voice, she would say, “My stomach hurts, Mommy.”

And I would answer, maybe you’re hungry or maybe the milk was bad, maybe you have a stomach bug (that led to an interesting conversation!), but at some point, the complaints got more numerous, then nearly continuous.

I never planned to go gluten free, but parenting takes me to places that I never imagined. Click To Tweet

She was uncomfortable and hurting everyday. She seemed able to function and play, but if she sat still, the pain was too distracting. It was rarely so bad that she was crying in pain, but she hurt everyday.

We had an ultrasound and liver enzyme blood tests done, yet there was no clear reason for her discomfort. But after months of charting her pain, I finally couldn’t stand to watch her suffer anymore.

I took lactose out of her diet, but it didn’t seem to help.

A trip to our clinic for a physical led us to decide to try removing gluten from her diet. Days before a cross-country trek wasn’t great timing, but we went for it, desperate for answers.

Going gluten free isn't a journey I ever wanted to undertake. I LOVE chewy, warm, rich bread. But being a parent takes me to places that I never would have imagined.

After a few weeks, she stopped complaining her stomach hurt. After a few months, I threw away her pain chart.

And of course, we’re willing to go gluten free for her, but I am still mentally adjusting to this change. It changes so many things I didn’t anticipate.

She can’t often have the snacks at church. I have to do extra planning and preparation for playdates and babysitters. I’ve had to teach my six year old how to graciously decline snacks when I’m not around. I always have to carry safe food.

On National Talk like a Pirate Day, Krispy Kreme gives free doughnuts for customers who talk like pirates. As we drove past, she asked if we were could get our free doughnuts this year. No, honey, doughnuts have gluten.

We’ve found some swaps for bread items and just changed our diets to a larger extent, but the holiday season is making this adjustment really hard. Some things just aren’t the same.

While gluten free recipes and flours improve every year, some dishes are just different and others have been kind of gross. We all have had to adjust.

I’ve had to learn more scratch baking, no more prepackaged pie crusts for us. I’ve never had xantham gum in my kitchen before. I’m still a little unclear about what it is, but Google and Alton Brown are my friends.

I got distracted at a party a few weeks ago when my daughter asked if she could have one of what I was eating. I handed her a bagel chip without thinking. Face palm.

As much as there is a learning curve for going gluten free, I hate to complain. Her health and happiness are paramount. It isn’t a life threatening allergy (if it’s an allergy at all-see below), and I give HUGE PROPS for those with serious allergies.

Knowing she may never have flour again is one thing, but knowing she may never be able to casually order from a restaurant menu again is a little emotional.

We went to one of our favorite restaurants last week only to realize she can’t eat anything there. They had one gluten free option, plain grilled chicken with green beans. The kitchen staff wasn’t even clear on what gluten is. I was literally reading the ingredients labels for them.

We went to a church potluck, and it was so hard to watch her dejected face at the dessert table when she couldn’t have a single one. Luckily, someone brought a bowl of candy which was all gluten free.

I hate watching her be disappointed. It breaks my heart more than it breaks hers.

Thinking about how this will affect her life forever gets a little overwhelming, so I try not to, just taking one day at a time.

And today, I don’t know if going gluten free will be permanent for her or not. The doctor wouldn’t order the blood test for gluten allergies without any clear diagnostic reason, but in order to get a diagnostic reason, we had to take all the gluten out of her diet for months to see if that made any difference.

Thinking about forever can be overwhelming. Take health changes one day at a time. Click To Tweet

Once we believed it made a difference, the doctor was willing to test her, but she has to be eating gluten for two months before the antibodies can be tested for an allergy.

SIGH

So, we’re gradually adding gluten back into her diet. A few bites of bread here, a slice of pizza there. I figured if we have to do it for the testing, we might as well do it over the holidays so she can enjoy our favorite treats, and I can practice with some gluten free recipes for next year.

We’ll see what the next two months bring. Perhaps she is just sensitive to it, not allergic. Maybe it was the pesticides, and the wheat needs to be organic or non-GMO??? Maybe it was something else entirely.

We really don’t know what will happen.

I do know that I have a better understanding and greater compassion for parents with children who have food allergies. If nothing else comes from the past two months, I am grateful for that.

Many of our homeschool friends have serious allergies like Celiac’s, nut allergies, dye allergies, etc. And for the first time, I’m more than aware of it, I get the seriousness of it and have serious respect for those moms!

Every ingredient has to be investigated.

A homemade recipe by a dear friend could be dangerous because they might not know how to examine labels the way you do. Gluten hides in crazy places: soy sauce, taco seasoning, Twizzlers! She can’t have Twizzlers on a gluten free diet.

Cross-contamination is a real risk.

So, a product that might be edible alone is rendered unsafe because it was made in a factory that also processes wheat or nuts or eggs or soy or milk. This often includes our own kitchens, especially for celiac’s and nut allergies!

Reading labels has helped me understand just how many products are off-limits for people with serious allergies, especially nut allergies.

It is so true that things just don’t hit home until it’s your child.

I am grateful I’ve had this chance to learn how to be mindful of allergies for food preparation and hospitality.

Seriousness of food allergies (Cross-contamination and reading ingredients) doesn't hit home until it's your child. Click To Tweet

I found myself turning down invites to parties or lunch because it’s hard to find many places that offer safe food. I know more seasoned allergy moms have some great strategies for handling these things, but for now, I’m still learning.

No matter how her tests turn out in February, I have learned so much. I’ll always have something safe for guests and label food items for potlucks, making sure to be the one to think of those with allergies.

Going gluten free is a journey. And we’re in a weird stretch right now, but we’ll keep taking one step at a time as a family.

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Do your Kids need Help Focusing – Meet KazuTime

Giving my daughter help focusing has been a priority since we started homeschool because it's heartbreaking to watch her struggle with an attention disorder. Thankfully we discovered KazuTime

Giving my daughter help focusing has been a priority since we started homeschool because it’s heartbreaking to watch her struggle with an attention disorder.

She is highly emotional, easily distracted, impulsive, and tremendously sensitive. She gets caught up in the moment and doesn’t always have the internal ability to rein herself back in without external support and discipline.

Watching her struggle with an attention disorder is hard, helping her focus doesn't have to be. Click To Tweet

While most children need help focusing at some point, teaching her how to monitor herself is a daily struggle in our home as her parents, but as her teacher, I’ve seen how being distracted has become a wrecking ball for her education.

Difficulty with focus affects every aspect of her education.

Learning to focus on a task, pay attention, manage distractions is tough stuff in early brain development. Yet, most children are able to build these skills as they mature.

But kids with attention disorders need external support to gain these skills internally.

We use this great program called IXL. It even uses a visual timer for each section, but she will still waste time because she can’t pay attention to it. I’ve watched her get distracted between answering a question and pressing enter.

While new advances in ADHD medication might help focusing, I would rather start with behavioral strategies.

Counting has often worked to help her maintain focus on a task. I have her race to beat my count to finish a chore, which worked really well with her little competitive spirit. However, counting isn’t as effective now that we’re working on longer assignments and tasks.

I bought some kitchen timers, but I still found myself having to remind her often to pay attention to the timer.

Even with a kitchen timer, my distractable babe gets off task. We needed something better #KazuTime Click To Tweet

She was still getting off-task and finding herself getting distracted.

I had to reassess my strategy for both of us.

That is when I discovered KazuTime.Giving my daughter help focusing has been a priority since we started homeschool because it's heartbreaking to watch her struggle with an attention disorder. Thankfully, we discovered KazuTime

Barbara Wichmann and Karine Pepin created KazuTime to help young children manage time better. Realizing that children often struggle to grasp the concept of time, much less manage it, they strove to develop an interactive app that would be fun to use and empower children.

The KazuTime app features puppies playing along a path for set amount of time that I choose. Kids can choose from three friendly puppies for each task and a different background color for each timer. Parents can also purchase a couple alternative backgrounds.

Tasks are repeatable, which is nice for daily chores. I can set the time for an activity, and she can watch the puppies progress or listen for the barks. What is neat is that the barks come at 1/4, 1/2, and 3/4 of the set time to further build the internal sense of time. It is a gentle timer compared to loud noises and alarms.

For my six year old, KazuTime helped conceptualize amounts of time.

Even after just a month of using the app, I can see she has a better grasp of time, but still needs the app for help focusing.

I received a free download of KazuTime which is $2.99 in the app store for my review, but the opinions are mine.

My six year old LOVES it. She gets really excited about racing the puppies to the igloo and pressing DONE before they get there.

From my perspective, the dogs don’t do much and has very limited in customization, BUT this is probably intentional. The app is supposed to help kids accomplish other tasks on time, not distract them with activities.

And it works!

My daughter already is finishing tasks much faster with much less distractibility. I am glad KazuTime reached out to Heaven Not Harvard with their helpful app.

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The Last Night You Were 4: Birthday Milestones

Turning 5 is one of the hardest birthday milestones for mommas as much as a celebration for our children. Read my touching letter about watching her turn 5.

Turning five is one of the hardest birthday milestones for us mommas as much as it a celebration for our children. Five marks the age children move away from infancy to school age and take their first steps into the world. It was also the hardest birthday for me as mom.

A few days after her 5th birthday, I emailed this “The Last Night You Were 4” letter to my daughter that I wrote at midnight on her birthday. She has an email address waiting for her to grow up, full of pictures, stories, cute sayings and letters like this.

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Dearest Daughter,

On the last night you were 4, I did something strange you may not yet understand (wait ’til you’re a mom). But watching you turn 5 is strangely hard. It marks the end of your preschool days. You are now my little girl instead of my baby.

On the last night you were four, I cradled you in my arms in your nursery rocking chair. Your legs draped over my lap and onto the floor. Your head took up roughly the same amount of space your entire body did the day we first met you.

I read to you the first book I ever bought for you. I had read Guess How Much I Love You to you every NICU visit the first week of your life. Then I read, On the Night You Were Born.

Both books speak to the wondrous, precious gift you are to me, to our family. Then we said your prayers, and I tucked you in. I gave you just a few extra hugs and snuggles and walked out of the room, trying not to feel the swirling emotions that risked falling from my eyes.

But at midnight, as you turned five soundly sleeping, I tiptoed to your bedside. I scooped you into my arms and nuzzled my cheek next to yours. Listening to your sweet, still babyish noises of half words and sighs, I smelled your hair fresh from the bath, and kissed your velvet cheek. “Happy Birthday,” I whispered as tears sprang to my eyes.

Every Day was a precious gift.

I will never get back a single moment of your infancy, those rushed and panicked days when I was just learning who you are and how to do this mom thing.

5 is a milestone for mommas as much as for our babies! Read my touching letter to my daughter. Click To Tweet

I will never get back those first steps videotaped on a broken camcorder. I will always remember that you learned to run on vacation, making circles around Grandma’s house, pajama pants on your head.

Never again, will I hear your first word. Babies all say da da da. Does that count as Dad?  Very early, you mimicked ‘bye’ to everyone’s surprise when I dropped you off at daycare, but didn’t start a trend of talking. You were my quiet girl…

Until you weren’t.

Now we can’t get you to be quiet most of the time. You tell everyone how to drive, which is hilarious and infuriating. You want to know everything about everything. And I love it, even when it wears me out. You make me tell you stories over and over.

I miss holding you on my chest while you napped. Those months of just resting in letting you rest on me were too fleeting. I knew it would go too fast, and tried to memorize the weight of you on my shoulder, the sound of your tiny snores, and your angelic sleep face.

Turning 5 is one of the hardest birthday milestones for mommas as much as a celebration for our children. Read my touching letter about watching her turn 5.

I don’t want to hold you back, just hold onto these moments a little longer.

You’ve already started losing the babyish silly ways you would say things. I’m struggling to hold onto them as you start maturing. You still say pasketti and hosipal and yogrit, but baboon for balloon faded years ago. I don’t want to hold you back, just treasure each tiny part of your being tiny just a little longer.

I watch you playing softball and see you starting to pull away towards your friends just a little bit. But my heart still leaps for joy when you race towards me as if it’s been weeks, when it was only an hour.

Your tiny hand grows in mine imperceptibly slowly everyday, so I hold it as often as you will let me, even when you’ve been playing in the red dirt of the ball diamond, compounded by sticky fruit snacks.

Dear Daughter, I don't want to hold you back, just treasure every moment a little longer. Click To Tweet

You are beautiful in so many ways: the way you have one curl of stubborn hair in the middle of your forehead that refuses to be tamed or grow, the way your eyes sparkle when you really smile and laugh, the way your heart is full of love and kindness for others.

Turning five is a milestone for us mommas as much as it is for our children. Read my touching birthday letter here.

You are already not my baby anymore, and I’m trying to be OK with that. I’m not really, but I also love the new level of conversations we can have. I love watching you tackle a task that used to be daunting and conquer it with ease. You don’t need me quite so much in the minutia, but will randomly get “stuck” in a shirt that is too tight around the sleeves. I think you sometimes ask for help because you like knowing I’m there to help just as much as I sometimes still like to be asked. Sometimes, I think you’re just trying to avoid going to bed.

On the last night you were 4, I was grateful.

Grateful beyond belief that you were alive to turn five, healthy and strong, smart and powerful, creative and kind. It was bittersweet to welcome in a new era of childhood, one of more independence for you and more letting go for me, but I couldn’t imagine wishing for anything more than getting to be your mom on this journey.

The last night you were 4 was bittersweet, torn between old memories and new adventures. Click To Tweet

I have things I would do differently if I could do them over. Remind me to hold you close and listen to your hurts when, as an adult, you remember my less than stellar moments. Since time travel isn’t actually possible (despite your current fascination with the subject), I can’t have a do-over. Instead, I keep trying to get it better next time. Yet, as you keep changing, I have to keep learning a new set of rules, a new way to love you.

Which is hard because part of me will always see that teeny tiny little bitty in the NICU when I look at you, even when you turn 40 because that is what moms do.

These birthday milestones reach into my heart and beg time to slow down.

And watching the clock change as you went from 4 to 5, made me realize that no matter how hard I try, I can’t really hold on to every memory. They start to fade and slip away out of my conscious mind, but every one is etched into my heart.

I have never known a person more intimately and completely than I know you, and I can’t wait to see what 5 has in store for you. I love you all the way up to the moon and back, sweet girl and have since the night you were born.

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