Newsletter: THE NEW MOM- Our Best Advice EVER!

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For the BRAND NEW MUM, or for the NEWLY-MADE-MOTHER in your life, this newsletter edition is just for YOU. Resources curated to keep, share, and change lives plus some special discounts! We welcome you and your new bundle. If that new baby stage is over for you, scroll down to our contribution from our sister sites that have nothing to do with babies and infant feeding for recipes, relationship stories, and reviews.

 

Dear Leakies,

How will parenting change you? Let me count the ways. We’ll start with 4 for now though.

Whether everything went according to the serene picture in your head or nothing like it at all, becoming a new parent is an experience like no other. Largely because all the preparation in the world doesn’t really prepare you and before you know it, parenting is sink or swim.

So you start swimming. Just keep swimming, just keep swimming, just keep SWIIIIIIIIIIIIIMING!

The reality is no matter how much you envisioned being a perfect parent, you will fail. I know, not very encouraging. But the sooner you accept that, the better it will be, you are not going to ever be a perfect parent. Parenting will change you and though you won’t be a perfect parent, you ARE the perfect parent for your child(ren). Flaws and all. There are glorious, amazing moments in parenting that will take your breath away. There are sweet, tender moments in parenting that will make you smile and treasure the little things. And yes, there are horrible, nightmarish moments in parenting that will cause you to question what you were thinking getting into this gig in the first place. All of the moments need the other moments.

Three ways parenting will change you:

You will redefine a good night’s sleep. And you’ll be amazed at how little can feel so good. Four months into parenting our second daughter, who had a personal vendetta against sleep, we had our first night with 4 hours in a row. Plus another 2 after that. It was amazing. I celebrated. Never mind that a year before a good night was 10 uninterrupted hours of sleep.

Clean takes on a new meaning too. So just how much like sour milk does that shirt you wore yesterday smell? On a scale of 1-10 if it’s a 7 it may likely pass as wearable.

You will need more storage on your phone. Sure, it’s popular to be annoyed with your friends posting pictures and videos of their kids all the time on social media but, OMG, you should have seen the way she discovered her fingers! You’re going to need more room on your phone.

Patience for yourself. At least I hope parenting changes you this way. If you are a perfectionist, this is particularly hard. In the end though, if you wouldn’t want someone treating your child the way you treat yourself, then you’re going to need to model that with how you treat yourself. Patience is key.

You’ve got this. You will keep swimming.

And for some of the more fun parts of parenting a newborn, see these 12 signs that you’re breastfeeding a newborn here.

Scroll down for more support for new parents, a great coupon code (20% off!) for a top that will convert all your shirts into breastfeeding tops, and for topics well beyond those baby days, see the sections from our sister sites OurStableTable.com andBeyondMoi.com.

GO HERE for an exclusive coupon code and MORE!

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Are We Getting It Wrong? TLB’s Latest Newsletter

Dear Leakies,

962543b9-ef8a-4e3a-bd8b-cbc3a5a5bfcbI’ve pondered what to write here for World Breastfeeding Week but the truth is for TLB every single day is World Breastfeeding Day so I find myself coming up with all the same things to say. Not to mention that after MiLK last week (a huge success!) I’m exhausted and focusing on my family. But every year as World Breastfeeding Week rolls around I find myself wondering if we’re getting it all wrong? Are we asking the wrong questions? Speaking (YELLING?) at the wrong people? Considering the wrong issues?

This year it seems like maybe not, we’re talking about breastfeeding and the work place, important matters to discuss. But who is doing the talking?

But my family needs me and so does yours.

So I don’t have much to say. It really just boils down to these bullet points:

Feed your baby.

Shut out the haters.

Push for positive change including work place policies.

Cheer on companies that support breastfeeding and go against the grain.

Spread love, grace, and understanding.

People before feeding methodology.

Feed your baby.

Read these posts for inspiration: breastfeeding friendly work place; breastfeeding passion and TLB mission; and the breastfeeding family. Scroll down through the newsletter for more on how we maybe need to change the conversation.

To read MORE on our latest newsletter, and to watch an exclusive video I wanted to share with you on this subject, WATCH HERE.

Happy Breastfeeding! Happy Bottle-feeding too.

Peace,

Jessica Martin-Weber

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#TLBMoves: Kelsey’s Story-Changing Her Life to Inspire Others

by Kelsey Daniels

*Editor’s Note: I have had the pleasure of being close friends with Kelsey and her family over the past few years as our two families have grown! I hope that her story inspires you, Leaky. She has been instrumental in encouraging me to  jumpstart taking care of myself with #TLBMoves. If you’d like to continue being inspired by Kelsey and her journey to health, check out her Instagram feed @kelseyjdaniels and Join our Private Group on Facebook!

 

When I became a mom, it was one of the most rewarding experiences of my life. But to be honest, I kind of lost myself.

I devoted 100% of my time into taking care of my three little boys.

I completely forgot to take care of myself.

 

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Beginning and Current: Kelsey’s Journey!

 

I used my kids as an excuse for not taking care of my body.I was too busy, too tired, and felt too far gone to do anything about it.

I was surviving motherhood, and not enjoying it at all.

Finally, I decided it was no longer okay for me to use my kids as an excuse to be 50+ lbs. overweight and 11692749_10152852661372100_6381956419378480368_neat nothing but junk. It was time for change. I started eating well, working out daily, and had a killer group of friends to hold me accountable to my goals.

I quickly fell in love with taking care of my body, and my kids quickly took notice! I now feel good about what I’m putting in my body, and I don’t feel guilty when I nurse my little Samson, because I know he’s getting the very best things from me. It’s been just over three months and I’ve lost 25lbs and over 23 inches.

It’s so wonderful to know I’m making my way towards a healthier me, but the best part?

I’ve found myself again.

I matter.

And my family is benefitting from me being well cared for!

I’ve found time in my day just for ME, and it’s amazing how thats affected being a mom, wife, and friend.

I am now the example to my kids that I feel good about.11137182_10152859116892100_8961811249812096667_n

They are my reason why, not my excuse!

 

I did it.

I’m still doing it.

YOU CAN DO THIS.

Together we can change!

From This Leaky To You,

-Kelsey

 

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Kelsey, her husband, and their 3 amazing boys live and work at a youth camp in McCall, Idaho. Kelsey is also a stay-at-home mum and is a coach for Beachbody Fitness! Some of her family’s favorite activities include watersliding, hiking, watching Avatar The Last Airbender, inspiring youth to live enriched lives, and playing pirates with their boys! To follow Kelsey and be inspired by her journey to better health, follow her Instagram @Kelseyjdaniels

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Babywearing, Connection, Partner Support: The Leaky Times Newsletter Vol. 9

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This TLB Newsletter generously sponsored by  LOGO.cdr

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Dear Leakies,

This summer as you get outside to explore, keeping your baby close and on you can be a big help with feeding your baby. With so many different types of carriers available, there’s almost certainly an option that will work for you. Between the different brands of carriers (and some brands having more than one style, such as Tula), online support and information (such as babywearing and breastfeedingthis online chat with Paxbaby and The Leaky Boob) and retailers (where you can find many different brands in one place!), babywearing libraries, babywearing educators, and ways to purchase used; more and more families have access to figuring out what babywearing can be for them.

And that’s good news. The skin to skin contact of babywearing sends signals to your body that helps you produce milk even as you’re busy keeping up with older kids and vacation plans. There are so many benefits of babywearing, even including neurological and physical development, see more on that here. Even better, for moms feeding directly at the breast, learning how to breastfeed in a carrier can be a total game changer, making it possible to feed on the go. We think this is so Ula babywearingimportant, we have a whole workshop at the Milk Conference to teach moms and support providers more about breastfeeding in the carrier. While not everybody will be comfortable breastfeeding in the carrier, having the option to do so can help remove just one more breastfeeding obstacle. Carry all the babies, feed all the babies! (On your front, just to be clear, unless you have a sense of humor and flexible breasts like this.)

With our friends at Tula, we want to help. You can read a helpful article they’ve recently posted about the HOW and WHY of breastfeeding and babywearing!

Dad babywearingEven if breastfeeding in the carrier isn’t for you or if you’re not breastfeeding directly at the breast, babywearing can be a fun and special way to care for your little one… and your toddler! (I share all about why you might want to wear your toddler and preschooler here.) Babywearing is an excellent way for non-breastfeeding partner parents to connect as well, (older siblings too, see this article for more on sibling-wearing) fostering connections and closeness in shared experience and constant snuggles. For tips on what to consider in looking for a carrier that works for you and/or your partner, check out this link to get you started.

The conversation and education about babywearing has increased, and with good reason. There are a lot of benefits of babywearing but it is important it’s done safely. This is why we are talking about it, anyone could make a mistake (including this celebrity) and babywearing safety is important. Together we can support each other in caring for our little ones.

Want to read more? Check out the rest of our latest news on breastfeeding, partner and babywearing resources, and EXCLUSIVE giveaways in our latest newsletter

 RIGHT HERE !!

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#MyStoryMatters: Monica and Molly- Loss And Renewal

Trigger Warning This post talks about loss.

 

We all have a story to tell and each of our stories can be the change this world needs.

My story is long. It is full of life’s threads that have made me who I am today.

One day, one of those threads came undone.

It put my family on a path that would forever change our course.

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The author and her family today.

We were expecting our fourth child and second daughter, her nursery was not yet planned and her shower was a few weeks away. After all, she was the last one we had planned on having and I was not quite as particular about things anymore. At the time I was a full time nurse, we had just moved from Florida to Georgia and I had worked in Pediatrics at the hospital for 10 years, and did other jobs in nursing for 6 more years. So I was a confident pregnant momma not expecting anything to happen to this precious baby we were so thankful for.

It was Christmas time and I was 28 weeks along. Customarily we would never travel over Christmas because we liked the kids to wake up in their home on Christmas morning, but this year we decided to go back to Florida to see the family. Early morning Christmas Eve, sitting in my parent’s bathroom my cramps began. Then the pressure and bleeding started. I had never experienced any difficulties in past pregnancies, and because I was a nurse, I knew too much already. I was in labor.

I cried for God to stop it, I cried out for my husband who was still sleeping, and we were heading to the hospital while the house was quiet and still.

The particular thing about nurses is that you cannot tell us anything we don’t

already think we know. You also can’t argue with us. It’s a curse. (Much like a baby-wearing cloth diapering momma!) When the emergency room doctor told me I was not in labor, he quickly regretted it and sent us up to labor and delivery. Mommas know their bodies.

The ultrasound machine told us everything we needed to know. Molly’s tiny heart had stopped in transit to the unit. My world started to crash in at that very instant. I did a mental checklist over and over, but the results were the same. I could not think of how or why this would happen, I did everything “right”!

We delivered our beautiful little blonde headed baby girl about thirty minutes later and we held her and kissed her and told her to tell Jesus we said hello, and we held her some more. We knew she was serving our mighty God. Her life humbled me. Life’s fragility. Its beauty. Its cruelty. It’s really humbling.

Months later, I was researching stillbirths and I repeatedly came across studies done in other countries about harmful chemicals and how they permeate through our skin and they are found in breast milk and our blood. How these harmful chemicals can cause changes in DNA and can alter our hormones, which regulate every process in the human body and are especially imperative to the development of a fetus. I read how some harmful chemicals are changing the health of sperm, reproductive organs and how others are carcinogenic. I dug deeper, researching studies and reports. Calling experts in the field that would talk to me to help me understand this research I discovered.

I learned that in the United States there are 80,000 chemicals approved for use in our products but they only tested 200 of those chemicals for human safety. Those tests were done on men, not women or children. Then I found a cord blood study done by a physician on his own granddaughter’s umbilical cord blood, her daddy was also a physician. This study concluded that there were many hazardous chemicals in cord blood and it was one of hundreds of studies that proved this. Our babies are losing a battle they don’t have the choice to fight.

That was it for me. I knew I needed to let everyone who would listen know that they had to start taking charge of their own bodies and know what was going not only in them, but on them as well. After all, we all know our skin is the largest organ, but many people do not realize that if the skin’s pH is altered, the harmful chemicals will go through that skin-blood barrier. Harmful household chemicals and pesticides are found in breast milk, our urine, and blood.

I got a huge black trash bag out of the garage and began throwing away everything under our kitchen sink, our laundry room cabinet, and our bathroom cabinets that was not “natural.” I began researching the products I had left, and most of them followed the conventional items into the trash. The word “natural” is so misused in today’s marketing. We did slowly add items back into the home, using resources like EWG.org and other fantastic websites and research that help decipher all of this crazy information. It was so overwhelming, baby steps with this stuff was really the way to go. I made several of my own products in the beginning of my quest until I could find a safe alternative to the store bought items.

Conventional laundry detergent was the one product I could never feel fully comfortable with. I read studies about how polluting they are to our waterways and fish, and how certain chemicals in detergents are found in breast milk and blood. The ingredients mostly came from China where the ingredient integrity can be questionable and mostly synthetic ingredients are used…even when there is a safer raw option- because they are cheap. In America, where Procter and Gamble spends multi-millions in marketing and brainwashing people into thinking we need lots of foaming and bubbles and we have to have scent for our items to be clean, it’s no wonder we have limited options on the shelf that are safe.

I decided we had to do something. I knew too much to sit at the wayside, and all the research came at a great price. Molly’s Suds was born. It is a tribute to her and to all that her death allowed my eyes to be opened to. It is a promise of strict ingredient integrity and safer chemicals that truly clean.

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We began formulation in 2008 and had a shelf ready product in 2010. We sold our products in farmer’s markets, co-ops, mom groups and other smaller markets at first. I taught classes on ingredient integrity,what chemicals to avoid and why and basically spoke to anyone who would listen. It was awesome. Most people eat organic, but don’t give a second thought to what they clean their home in or wash their clothes with. It opened people’s eyes to become wise and to do their own research. That is still the goal today. Teaching our customers, moms, retailers, local groups, and even our friends and family about ingredients, about harmful chemicals, what is safe and what is not, and how they can find the research. I don’t judge people for what they use, I think we all are just doing what we feel is best for our families and ourselves. But empowering them with the knowledge and then letting them do what they want with it is half the battle!

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We continue to grow here at Molly’s Suds in St. Petersburg, FL. We love what we do, encouraging a workplace where our employees can feel like they are making a difference. Our children also know the hard work that goes into running a company and help out on their days off school. We are both humbled and excited about Molly’s Suds, the adventure we have been on, and how God has allowed good to come out of our tragedy.

 

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 Monica Leonard, founder of Molly’s Suds, is an inspiring, mission-driven woman with a huge heart, passionate about continuously educating herself and consumers about the  harmful chemical dangers we come across in our daily lives, and how to steer clear of them as much as possible. Mother of four, and originally a pediatric nurse, Monica’s experiences, faith and compassion drove her to develop a line of truly safe household products. Molly’s Suds is a way for her stillborn daughter, Molly, to live on, teaching and motivating others to be wise and do their research before simply accepting and trusting major conventional brands on the shelves. Monica’s ongoing goal is to continuously and responsibly grow Molly’s Suds, cultivate eco-responsibility throughout all practices, and continue educating as many consumers as possible along the way.

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Touching After Weaning

by Cindy MacDougall
Cindy and Eddie

The author and her son.

 

My youngest child, four-year-old Eddie, likes my breasts. He likes to hug them, and he will sneak a hand down my shirt occasionally. The family joke is that E. is a boob man.

Eddie loved to breastfeed, and continued to do so until his fourth birthday. When we finally weaned, it was a long and gentle process, which I wrote about in my parenting column here.

After weaning, Eddie still showed a need to touch the “babas” that far outweighed my patience for being touched. I had given him four solid years of nursing, and had been breastfeeding for a total of about nine and a half years over four kids. I was more than ready to have my body to myself.

What I hadn’t counted on was that Eddie and my breasts seemed to have a relationship entirely independent form me – at least in his mind.

“The babas are nice and soft,” he explained once. “I love them. I want to hug them, please.”

“But I don’t want you to touch me right now, Eddie,” I said.

“Oh, I’m not going to touch you, Mama,” he reassured me. “Just the babas.”

Another time, I explained to him that he was a big boy who had been weaned, and that meant no more touching my babas. He erupted in floods of tears.

“But mama, I gave up drinking the babas like a big boy,” he sobbed (taking the opportunity to lay his head on my chest.) “I didn’t know I had to give up touching them. I have to touch them, Mama, sometimes.”

We know from childhood development experts that children need touch in order to properly grow physically, mentally and emotionally. I touch and hug my kids often, as does their dad.

But I had never thought about my children’s needs to touch me back, and especially about a former nursling’s need to occasionally reconnect with the breast as they continue to grow away from being a member of a breastfeeding dyad.

I know Eddie is not alone in this need, as my other children liked to touch my breasts after weaning (though not nearly as much) and I had watched friends go through this same struggle. But I didn’t know how common this need is amongst children, so I did a bit of Googling to find out.

The La Leche League International message board has several long threads of posts about toddler and pre-schoolers touching breasts after weaning. One mother there described her child as “boob-obsessed,” and others described patting, rubbing, pinching and touching. Some kids were sneaky about it; others outright asked; some needed to touch the breasts to fall asleep.

Dr. Laura Markham, a clinical psychologist and founder of the parenting web site Aha! Parenting, wrote about weaned children touching the breast in her “Ask the Doctor” feature.

“It is very common for toddlers to need to touch their mother’s breasts for comfort or to fall asleep for as much as a year after weaning,” she wrote to a concerned mother. “Your breasts symbolize comfort and safety and love to her…. So if she is clingy, just give her lots of extra reassurance and realize that this is the final stage of weaning.”

It’s good to know Eddie is normal, if enthusiastic, in his need to have some cuddle time with his, ahem, my, “babas.” And the closer we move to his fifth birthday, the less often he seems to need to touch them.

If you’re dealing with a similar situation, there’s no need to change or challenge the habit if you’re both happy and comfortable.

However, if it’s driving you bananas, think of this as an excellent opportunity to teach your child about body autonomy. Your breasts are yours, after all, and it’s important to teach kids that each of us own our own bodies, and no one can touch us, or them, without consent (barring medical necessity, safety, etc.) That gives permission to set the same limits with their own bodies, to be able to say “no” to unwanted touch.

With Eddie, I made rules: no touching the “babas” unless he asked, only at home, and only a hug or cuddle. He seems to be approaching the end of this “final stage of weaning” and hasn’t asked in a while.

Despite what our society tells us, touching each other, with permission, is generally healthy. For small children, the breasts are about love and nutrition, not sexuality. If we are comfortable with that and allow them healthy touch, it teaches them good things about the body and physical forms of affection.

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Cindy MacDougall is a writer, a mother of four children, a public relations professional, and a former parenting columnist with the Victoria Times Colonist. She covered health issues for CBC North Radio One for seven years, and is a recipient of the Society of Obstetricians and Gynecologists of Canada’s 2004 Journalism Award for Excellence in Women’s Health Reporting for her radio series “Into the Mouths of Babes: Breastfeeding in the Northwest Territories.”
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In Search of Answers on Breastfeeding

by Elizabeth Grattan
I found the Leaky Boob after a long while of going it alone in my nursing journey. I lurked silently for months. I watched women come for support. I listened and I learned. And I am so thankful and grateful for the resource. We are three plus years and going strong, my lad and I. And so, in the spirit of forward support, the following is my contribution to celebrate five wonderful years of encouragement for women and men. Thank you Jessica and your admins and the entire family of TLB. All those in this community who make the difference. — Elizabeth
The Leaky Boob #SupportForward #MyStoryMatters Breastfeeding support

The author and her son.

So many questions. So many answers. Information at our fingertips as we crowd source for support and scour the internet to validate our choices. And still, with all the resources in the world, so much still unknown.

Until we figure out we’re answering the wrong questions. We’re framing our dialogues wrong. We’re talking, but we’re not really saying anything. We’re hearing, but we aren’t really listening. We’re trying to reach, without teaching the things that equip and empower women.

So stop for minute. And consider a better lesson….

The reproductive right that belongs to women. The informed choice she can make when taught all the information. The answer to every single question:

Teach children about anatomy. Equip and educate on reproductive choice early and often. Teach the history of breastfeeding. That autonomy always mattered. That milk is custom to species. That women weaned. That nursing a child is part of the reproductive journey.

Teach what alternatives were used besides the mother’s breast to nourish the offspring. Animals, meat stocks, slaves —  hundreds of options that tested our humanity along the way. Teach the history. The good, the bad, the ugly. Teach the injustice. Teach the risk they carried. Teach that babies died early. That infant mortality was horrifying. That we used and exploited women’s bodies.

Teach that we wanted to breastfeed. That we wanted to wean. That we wanted to dry up our milk completely. That we were once unknowingly stripped of a choice. That a pill and a shot were just par for the course. That women and children were at risk. That our options were hit or miss.

Teach the advancements in our journey. How far we have come. How we’re still not done. How amazing that is. That women and children live. But that for some, those same horrors still exist. Teach that we are still working on it.

Teach the socio-economics. Teach the privilege. Teach the realities and the limits on women. Teach the strides we’re making. Teach the change in legislation. Teach that we can and have and will succeed in decisions.

Teach that nursing is a learning process. That seeing breastfeeding matters. That we need observation and exposure. Teach that qualifications have no place. That normalizing keeps women and children from hiding under cover in shame.

Teach about the imperfection in reproduction. So no one is taken aback because a myth told them it was for everyone. Teach how to handle the griefs and losses for women who had their reproductive choices stripped from them.

Teach how to dry the milk. Teach how to wean. Teach how to latch a baby. Teach the laws on breastfeeding. Teach people everything.

And don’t assume a woman will decide to nurse and don’t assume she won’t. Ask her. Trust her answer. Trust her answer might change. And empower her along the way.

So if she says: “I do not want to use my reproductive system this way,” you say: “Okay, here is information on all your options. From drying your milk to stopping engorgement to offering your child their developmental requirement. Here is what’s safe. Here is what isn’t.”

So if she says: “I want to use my reproductive system this way,” you say: “Okay, here is information on all you’re offering. From latching your child to expressing your milk to never forgetting to be kind to yourself. Here is what’s safe. Here is what isn’t.”

But don’t battle about if a reproductive process has benefits. Don’t project your personal preference. Don’t ignore the anecdotes. Don’t ignore the evidence. Don’t tell. Listen. And ask the only relevant question:

“What do you want to do? Because it’s your body, it’s your call. And I want you to know I’m here to help you. Through it all.”

_______________

How would you answer the above question? How have you asked it in support of other women? How are you giving support forward?

_______________

Elizabeth Grattan bio headshot
Elizabeth Grattan is a broadcast talent and writer who has covered current events, human interest and social justice for over twenty-five years. Her loves are the strong, gentle arms of her best friend, reasonably priced blended reds and obviously her dream come true little man. Find & friend Elizabeth on FB or follow along on Twitter.
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What I Want You To Know About Why My Son Can’t Eat- FPIES

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 2 of their story as well.

Carrie and Echo FPIES

Shortly after birth, my sweet little boy, Echo, had a stroke. We struggled to breastfeed and I ended up exclusively pumping for him. But that was hardly the extend of his feeding difficulties. You see, my son can’t eat. For a while there he couldn’t eat anything, now he has a few safe foods. But he still really can’t eat. He’s 16 months old.

My son’s name is Echo and he has FPIES.

What is FPIES? According to The FPIES Foundation:

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.  Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food.  Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.

I will tell you this: I’m a fierce mama bear. I will not let my son be defined by a stroke or FPIES or anything else over which he has no control.  He is a strong, charismatic, people-loving, joyful being. He walks confidently into a room full of strangers, waving and smiling as though the world has been expecting him all along, and is ready to receive him. He is so much more than a diagnosis or cluster of symptoms. Echo is pure light. We do our best to make the world safe for him. Sometimes we fail. With every trip we’ve taken and guest we’ve hosted, Echo has experienced acute reactions each time despite our vigilance. But we walk a very fine line between taking calculated chances and raising Echo in a bubble.

This. This new normal. Echo, at 16 months old, has two handfuls of safe foods and resists eating, all while laughing and giving kisses and shaking his head “no”.  Me? I’ve made peace with the pump. Peace with my life in this moment, with the ever-changing new normal. My son has one constant and safe food source that he never turns down (mommy’s milk!), and it brings me great peace of mind. We’ve learned to keep participating in life, even when my mom innocently asks if there’s a mute button for the pump motor, or when Echo enthusiastically licks the trash can and we know we will be up all night.  I’ve learned I can do anything for ONE MORE DAY, which in this case adds up to almost 500 days. Especially if it’s for my son. I’m grateful and proud that my body still impossibly provides most of what Echo needs. The dark clouds of survival lift and retreat when I remember this: I am lucky to be his.

Echo FPIES I am the voice

Here are three things I want you to know from my experience:

  1. FPIES scary and effing HARD. Have you ever tried to keep a toddler from eating food? It’s impossible. And sad. And no matter how careful we are, Echo often manages to find something and then we hold our breath until we know he’s okay. Leaving the house is stressful, play dates are almost impossible, and no space (except ours) is safe for him. Leaving him with a sitter is always a test of faith and competence. Finances are continuously tight. As it turns out, shipping donor milk, taking the max dose of Domperidone, (which insurance does not cover), and keeping up with medical bills all require quite a bit of cash. Also, it really takes a toll on a marriage, even a solid, seasoned one. Many families don’t make it through these rigorous trials with chronically ill children intact, even with proper support. Try not to judge us when we all seem a little fragile.
  2. FPIES is exhausting. When Echo experiences a reaction, he is in continuous pain, nobody sleeps for two days, and we have to take extra care with him. It requires total gut rest and a diet of only precious breast milk for days. I hate that he suffers so much, and it takes us all about a week to fully recover. We get little sleep and even less respite. We are hyper-vigilant everywhere we go because food is, well…everywhere. So, if you see Lance or me getting hyped-up when Echo gets food on his finger or there are crumbs on the floor or freak out when you pull out the goldfish crackers, please don’t think we’re crazy. And please don’t take offense when we start cleaning up after your kid or respectfully wiping their hands and faces before they play with Echo.
  3. FPIES is a real thing, and it’s rare. I’m part of online support groups where moms have been diagnosed with Munchausen Syndrome when they take their very sick children into the ER after an especially bad reaction, and some parents have had their children taken away because the doctors don’t even know what FPIES is or believe the parents when they explain it. (The parents eventually get their kids back when the doctors and social workers see that the reactions happen no matter whose care the child is under.) Although I refuse to dwell in fear of this happening, it is still something that happens. And the only way it stops happening is if you guys know about FPIES.

 

For more information about FPIES, visit these websites:
The FPIES Foundation
http://fpiesfoundation.org/fpies-medical-literature

From the American Journal of Pediatrics: The Mother of All Food Allergies
http://www.jpeds.com/article/S0022-3476%2803%2900273-7/fulltext

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Feeding Echo, Part 2- Solids, Vomit, More Pumping, Donor Milk, and FPIES

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 1 and part 3 of their story as well.

Echo eating solids

We began introducing solids when Echo turned six months old. My career focuses on healing the body and restoring vitality through nutrition, and I was excited to begin this work with my son.   I was ready to share the burden of feeding my baby with the rest of the food-eating world, namely organic fruits, veggies and properly-raised protein.

I was already planning a pump burial ceremony the day after Echo’s first birthday. My enlightened, supermom-self felt extreme gratitude to be able to exclusively give Echo breast milk for six months, and I could find the grace to pump six more. I know it is a precious gift so many moms are unable to give their babies and I felt genuinely humbled. But with my supply waning and the freezer stash quickly diminishing, I was ready to have help feeding my son. I was also ready for some sort of life again, a life that did not revolve around pumping and keeping up my supply. Plus, my nipples were starting to look kind of horrific, my areolas worn paper-thin in spite of my best efforts to keep them in good shape. My favorite mantra of “I can do this for ONE MORE DAY” felt as thin as my areolas. I was officially over it.

Happiest Echo 8 months

Echo’s first solid food was avocado and he LOVED it. He got it all over his face and hands and in his hair. Then we tried pastured egg yolk with grated grass-fed liver. I’ve never seen such a look of joy on his face. My baby was a total foodie at heart, just like his mommy. He wasn’t a huge fan of winter squash, but that was okay. He liked everything else we gave him.

We traveled to Texas for Christmas and Echo threw up a couple of times. It happened a little while after eating, which was weird, but we chalked it up to travel and maybe a stomach bug.

We came home, gave Echo avocado again, he threw up exactly two hours after eating it. Then he continued vomiting uncontrollably for the next 90 minutes and even threw up bile. We communicated with his doctor intermittently over the next 12 hours, assuming he was allergic to avocado. Echo bounced back in 48 hours, and a few days later we gave him his favorite, egg yolk. Exactly two hours after ingesting the egg yolk, the vomiting began again and this time it was much more severe. Echo became extremely lethargic. We communicated with his doctor continuously throughout the night. I gave him sips of watered-down breast milk and Lance and I took turns soothing and cuddling him.

We saw Echo’s doctor the next day and she brought up Food Protein Intolerance-Entercolits Syndrome, or FPIES for short. She tested Echo’s stool for blood, and it returned positive. We researched FPIES and his symptoms fit exactly, but nobody wanted to jump to a diagnosis. A few days later, Lance gave Echo a carrot to teethe on and precisely two hours after introducing the carrot, Echo threw up. That confirmed it. Our son was allergic to food. I wept unabashedly in front of his doctor on the day we received the FPIES diagnosis. Staring down the tunnel, that watery light of hope ending my relationship with the pump, began to flicker and fade as I realized there was no real end to pumping in sight. Not only that, but my baby was very sick and I could do very little to change that for him. I felt completely undone and powerless. The impossibility of pumping for the next 2.5 years loomed big and the dark clouds of survival rolled back to cover me once more. I would not break up with my pump any time soon. But more than that, my baby was sick. The kind of sick you can’t fix, or treat, or hope away.

We chose to stop all food trials, (with the exception of coconut oil, which has no protein in it), until Echo turned one. Resting his gut seemed like a wise move, and gave Lance and I time to come to terms with our amazing miracle boy who needs meticulous care and consideration. It also gave us time to come up with a strategy for feeding him, and space to deal with the long-term ramifications of FPIES. With each new food introduction, the rules for trialing it are stringent: one food at a time for 18 days in a row, followed by a three day break and reintroduction on the 21st day. No grains, no soy, no cow’s milk, no corn derivatives and no processed or combined foods. All of this in hopes of healing and reducing the strain on Echo’s gut. Eating out, eating in, traveling, playdates, childcare, the zoo, splash pads, children’s museums, playgrounds…they are all latent with food. Our home is safe from Echo’s trigger foods, but the rest of the world is not. Echo even reacts to grass and leaves that he sneaks in his mouth while we are outside playing, which turned us both into helicopter parents. Lance and I both mourned the loss of freedom we all would experience, but mostly the loss of freedom and exploration for Echo.

One More Day Carries Pump Hygeia

At eight months, my supply tapered way down, and no amount of herbs, tea, extra pumping sessions or positive thoughts brought it back. Under the supervision of my doctor, I tried Domperidone as a last resort. It worked for the most part, however, I still needed to supplement with donor milk. This was another hurdle. Echo mildly reacts to specific foods in my milk and I wanted to find a donor who would be willing to follow the same specific diet I do to give my son the best chance at healing his gut. One of my oldest friends, Allison, stepped forward and offered to be a consistent, diet-compliant donor and ship the milk overnight from Texas to Oregon every month.

Allison wasn’t the only person to step forward and help us. My three closest friends have also provided safe milk for Echo’s supplementation. With their help, Echo has remained in the 70th percentile for weight. Our vibrant, close-knit community have all helped us stay afloat. They’ve prayed, rallied, provided meals for Lance and I, given us date nights, an understanding and compassionate place to vent, and most importantly, a safe haven for our son. Company picnics and nanny-shares and beach weekends with our friends are possible because our remarkable little tribe cares enough to share the burden of Echo’s well-being.

Carrie lance and echo

 

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Feeding Echo, part 1- Breastfeeding Trauma, Exclusively Pumping, and FPIES

By Carrie Saum Dickson

This guest post shares the feeding journey of 16 month of Echo as told by his mother. A breastfeeding, pumping, allergy story of a little boy with a bright spirit and a mom and dad with steadfast hearts and commitment. Their story is beautiful, inspiring, challenging, humbling, educational, and so very raw. Be sure to go on to read part 2 and part 3 of their story as well.

skin to skin newborn

It’s 8:30 on a Wednesday night. My husband, Lance, is in our son Echo’s room, feeding him his bottle and reading a bedtime story. Bedtime is later than usual tonight. After working a full day building my practice as an Ayurvedic Wellness Counselor, taking Echo to an early evening doctor’s appointment and cooking dinner for the three of us, time slipped away from me. Echo ate his dinner late, too. We are all tired and cranky from a day that held too much activity and not enough down time.

I’m washing baby bottles in the kitchen when I hear Lance frantically yell through the monitor, “Carrie! Carrie! It’s happening again!”. I slip the bottle I’m washing back into the soapy water and hurry to Echo’s room. Echo, Lance, and everything within a three-foot radius is covered in vomit. I grab a towel for Lance, take our crying one-year old son, and try not to cry, too.

I draw a bath while Lance peels off his vomit-soaked clothes and climbs in the tub. I undress Echo and give him to Lance and go clean up Echo’s bedroom. I strip the double bed, break out the sanitizer and get down on my hands and knees to make sure I don’t miss anything. I study the vomit: color, consistency, quantity, and make notes to share with Echo’s doctor. The details are important.

I go back to the bathroom to get my sweet, smiley and spent little boy, put him in fresh pajamas while Lance showers. We start the bedtime routine all over again. We play peek-a-boo and pretend to eat his toes and we all feel a little better after laughing. I go back to the kitchen, finish washing Echo’s bottles, and sit down on the couch with my trusty pump as Lance kisses me goodnight and heads to bed himself. It’s 10:15. Exhausted, discouraged and hurting, I massage my right breast, which seems to constantly be clogged these days, and allow myself a good ugly cry. I leave the fresh-pumped milk out on the counter so I don’t have to waste precious minutes heating up a bottle in a couple of hours when I’m sure Echo will wake.

It’s 11:00 before I climb into bed, my right breast still hard and hurting with unexpressed milk. I know my sweet little Echo will wake up several times tonight, either from pain or hunger, and I’ll sing to him and soothe him the best I can in those long nighttime hours.

Echo has eaten green beans 10 days in a row now without any reaction, and we began to hope that maybe this would be a Pass. That his diet would expand to something other than breast milk, coconut oil and spinach.   This latest vomit episode signals the end of the green bean trial and one more food to add to the Fail column, of which there are many. And more than that, it means we have to start over from scratch with a new food, and all of the trepidation and hope that comes with it. I fall fitfully asleep worried about my baby, my boobs, and this betrayal of my son’s body called FPIES: The Mother of All Food Allergies.

Echo’s relationship with food has been fraught with difficulty from Day Two. When he was 36 hours old, he stopped breathing while nursing and continued to stop breathing every 10 minutes for the next 16 hours. In the hospital, he received his nutrition through an IV for almost three days. We didn’t know it at the time, but Echo was experiencing non-breathing seizures due to a stroke he suffered sometime shortly after birth. None of the doctors could tell us what caused it, and they chalked it up to happenstance.

Echo stroke NICU Exclusively pumping

My relationship with feeding my son has also been fraught with difficulty. Resuscitating him when he turned blue at my breast brought on PTSD and panic attacks for months. Over a year later, I still feel a faint, tiny, cold fist of fear in my chest when I remember it.

My first experience with a breast pump was sitting next to Echo’s bed in the Pediatric ER while a team of medical personnel worked furiously to keep him from crashing every 10 minutes while my eyes continuously leaked tears of terror and exhaustion. I pumped every 3 hours around the clock, even when I could not hold him for two days as my milk (miraculously) came in. I continued to pump, proud of my body for rallying to feed my baby, in spite of the circumstances and in spite of my fear. My body could do this one thing for my newborn son, and it did it well through bone-crushing exhaustion and fear.

Around four months old, Echo began making great strides in his stroke recovery. The muscle weakness on the left side of his body that affected his latch retreated. We weaned him off one of his anti-seizure meds. He woke up to the world around him, alert and happy and contagious with laughter. He also rejected the breast entirely. We had worked up to three nursing sessions a day and I was sad and frustrated when he wanted nothing to do with it. He looked terrified and scared every time I put him to breast. I told him aloud “we can do the hard things together, baby”, the phrase which I used to affirm us from pregnancy on, and resolved silently to myself as I hooked up my pump, “I can do this for ONE MORE DAY”. Grace always showed up to help me through those difficult early days of weaning and extra pumping.

 

exclusively pumping

I wondered if Echo remembered his first seizure and in my gut, I knew forcing the breast was re-traumatizing him. So, we stopped nursing. Many of the dark clouds our little family had been surviving under, lifted. We enjoyed lots of cuddles and closeness with bottle-feeding and we allowed this breast feeding-free world to be our new normal. I developed an even closer relationship with my pump. It went with me everywhere, even places my baby couldn’t. I tried hard not to resent the extra dishes, the double duty of pumping and bottle-feeding, my miniscule supply of free time, and the total loss of freedom to just take my baby and have a day away from home without first planning how much milk to bring and where I could pump in privacy.

Carrie and Echo skin to skin

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