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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Why Black Breastfeeding Week Is Important To Me

by Carmen Castillo-Barrett

Carmen Black Breastfeeding Week

I am an immigrant Dominican mother, with African American roots on my father’s side. My husband is of Caribbean decent. We got pregnant with our daughter in 2006. The almost 42-week pregnancy allowed my husband and I time to explore and talk to each other about parenting. We decided we were going to do things differently than how the rest of our family did them simply because it’s what works for our family. We expected to be met with lots of questions and lack of understanding as to why we were doing things differently, but I was certainly not prepared for the ongoing negativity that was associated with our decision for me to breastfeed. I am not the only one who shares this experience. Below are just some of the reactions I got and reasons why Black Breastfeeding Week  is important.

1- “You’re going to kill your baby”
At four weeks postpartum, my mother-in-law began to express concern over the fact that all my newborn had to eat was breast milk. I’d done enough research while pregnant to know that breast milk is all an infant needs, but the research never heeded any warning about being confronted with the accusation that I was going to kill my baby by exclusively breastfeeding. My mother-in-law’s concern was real to her because she didn’t know any better. She called relentlessly, offering bad advice that wasn’t solicited, all while expressing concern that there was no way my daughter has getting the nourishment she needed. This was the most significant obstacle I’ve faced as a nursing mother and it ultimately undermined my confidence and affected my decision to discontinue nursing my daughter.

2- “You’re still breastfeeding?!?”
This question started popping up around the time both kids turned 6 weeks old. Both sides of our family saw no need to continue nursing past six weeks of age and thought that the natural progression of things was to introduce formula. My mother had no experience nursing a baby past trying it out for a couple of weeks with me, so her contribution to my growth as a breastfeeding mother was to state that the baby was now “old enough for formula” and I was now “finally free” to stop breastfeeding. There was no real reason why everyone thought I should wean, it was simply a matter of never having seen a non-white mother nursing past the immediate infancy phase.

3- “What? You can’t afford formula?”
When my daughter was two months old, we went out to lunch with my husband’s cousin and his wife, whom had two children of their own. While at the restaurant, my daughter needed to eat, so I discreetly breastfed her at the table. No one at the table batted an eye, but just as I was feeling confident that my nursing in public wasn’t a big deal, I was met with the question of “Why are you still breastfeeding? You guys can’t afford formula?”. I was so mad! Worse still is that when I called my mom about it, she felt the comment was perfectly justified and offered to send me money for formula. Somehow, my breastfeeding was seen as a reflection of our economic status rather than a conscious decision on how to feed our baby.

4- “You’re just trying to be white.”
A common way to dismiss a non-white mother’s parenting choices is to wave them off as her “trying to be white”. This comment is applied to much more than breastfeeding. If you are a non-white mom who co-sleeps, uses cloth diapers, has a home birth, employs a doula, teaches your baby to sign, or does anything outside of the “normal” things a non-white mom is “supposed” to do, then your parenting choices aren’t seen as something that simply works for your family, but a desire to leave behind your true roots to pursue one’s desire to emulate a white mother. This label is applied to non-white women of all shades as a means to shame, ignore, undermine, second guess, disrespect, and pigeonhole our choices to parent as best as we can.

5- “Your baby has teeth, that means it’s time to wean.”
By the time my daughter got her first tooth at 9 months, I was no longer nursing. My son, on the other hand, started getting teeth really early at barely four months old. I made the unfortunate mistake of posting a picture of him grinning with his new itty bitty baby teeth on Facebook. The immediate and overwhelming response from both sides of the family (and some friends) was that it was time to wean because “obviously” his incoming teeth meant it was time for “real food”. Up to this day I’m still unsure what “real food” I was supposed to feed a baby that young.

6- “You’re going to turn him gay.”
While it’s a scandalous thing to say to anyone, this last comment is particularly held as true among Caribbean families. Due to bigotry embraced by both older and younger generations and stubborn cultural superstitions, many Caribbean families believe that one can be “turned” gay and that nursing one’s son past a certain acceptable age will contribute to their sexual orientation. The lack of support and obstacles I faced when nursing my daughter were nothing compared to the outright hatred that the possibility of me nursing my son into a batty boy brought out in members of our family. This is why, after 7 months of exclusively nursing my son, I started pretending that I had weaned him. Only my husband and close friends knew that I was still breastfeeding.

Imagine if your entire breastfeeding experience was framed by the comments I listed above. How successful do you think you could be? This is why Black Breastfeeding Week is so important.

Carmen Castillo-Barrett is a wife and mom who resides in Brooklyn, NY. She is the Executive Director of the non-profit organization, Kiddie Science.

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Breastfeeding, Autism, Sensory Processing Disorder, and Oral Phase Dysphagia

This guest post shares a look from the perspective of a mother with a 5 year old son with neurological disorders.  Jeanie decided to share her story after seeing a thread on The Leaky Boob Facebook page asking about breastfeeding issues as potential early signs of neurological issues in an infant.   Whether you recognize yourself and/or your child in

autism and breastfeeding

My name is Jeanie and I am the author/page admin for a blog and Facebook page called Reinventing Mommy, which is all about raising my 5 year old son with Autism and multiple neurological disorders. I want to share my story in hopes that others will learn that feeding difficulties can be an early red flag for developmental concerns…

My son Jack was born on March 23, 2009 after 28 hours of labor which resulted in an emergency c-section. I had preeclampsia during the last 4 weeks of my pregnancy, so Jack was born at exactly 37 weeks. Due to the nature of my delivery, I wasn’t given the opportunity to nurse my son in the recovery room. No one even suggested it. I didn’t know it was even an option. 

The first time I nursed Jack was in our postpartum room. One of the floor nurses tried to assist me in latching the baby on and – for all I knew – it was going great. The nurse mentioned that she would be sending lactation in to see me ASAP the following day (it was nearing 11:00 PM); her reasoning was that babies born prior to 38 weeks got an automatic referral to lactation. She suggested that I send the baby to the nursery that night so I could recover a bit further, and that the baby would be brought to me to nurse. I agreed. 

The next day a lactation consultant came in. I was planning to show her just how great I was doing nursing my baby – clearly I didn’t need her at all! – but instead I was told that not only was my son not latching on at all, he wasn’t sucking properly. This began a journey of using a nipple shield, suck training, and an every 3 hour schedule of nursing Jack for 15 minutes per side then feeding him a supplemental bottle then pumping for 15 minutes. All this while recovering from major abdominal surgery. Every day I was hospitalized, lactation consultants were in and out trying to assist me. 

When I was discharged, lactation continued with phone consults. Jack’s pediatrician was of little help. No one ever said that Jack wasn’t eating normally. I just thought that this was what everyone went through. I was constantly assured that all babies can breastfeed and that I just needed to work harder. The pressure on me was enormous. I felt like a failure. 

Then came the day that Jack refused to take to the breast at all. He simply would not open his mouth for the nipple shield at all. My milk was drying up from the lack of stimulation and Jack wasn’t gaining weight, so we finally gave up and moved to a bottle and formula. 

The problem was that Jack’s feeding issues didn’t resolve with the bottle. Now that he was actually taking in liquid, he began to vomit his entire meal about 5-6 times a day. When I mentioned how much he would “spit up”, I was told that the amount really was probably no more than a couple of tablespoons. What no one truly understood was that he could fill a bowl when he spit up. No one listened when I voiced my concerns that Jack’s eating behaviors didn’t seem typical. Again, I felt like a failure as a mother, because I couldn’t do something as simple as feed my own child. 

At the age of 24 months, Jack was only able to eat purées. He couldn’t self-feed. He was nonverbal. He couldn’t climb stairs or jump. The only sounds he produced where grunts. He spent his days pacing the room and flapping his hands. He was diagnosed with Autism and – finally – someone was willing to listen to our feeding concerns. 

Jack’s developmental pediatrician and his therapy team listened to us, and we got names for what we were seeing – Oral Phase Dysphagia, which is a neurologically-based lack of coordination of the chewing and swallowing mechanisms, and Sensory Processing Disorder. Jack literally didn’t have the muscle tone in his facial muscles to chew foods, he couldn’t manipulate foods in his mouth, he couldn’t coordinate his chewing with his swallowing, but this was all assuming that we could get the food in his mouth in the first place because he was so defensive. In many ways, it was vindication in that I was not a failure as a mother, but my heart sank at knowing that my little boy had such a long road ahead of him. 

Fast forward to now…I just gave birth to my second son 8 weeks ago. My one fear – even more than him having Autism as well – was that he would have similar feeding problems as his brother. That has not happened. My new baby Andrew nurses like a champ. 

As for my sweet Jack, he works harder than any person I’ve ever known. He is an inspiration to me each day. He now speaks, though he still has a significant speech delay. He can eat foods that are either very crisp, like crackers, or bready foods. He eats about 6 foods consistently and several others intermittently. He will continue to require feeding therapy for years, but he is making slow yet steady progress. 

If there is one thing I could pass on to others about feeding concerns, it would be this – go with your gut and trust your instincts. If you feel like you child is truly struggling with feeding, don’t let doctors or anyone deter you from looking into it further. Contact Early Intervention services in your county for an evaluation, or get your child evaluated by a feeding therapist. With therapy, many children with feeding issues can expand their food repertoires, learn to enjoy eating, and become more proficient eaters.

 

Editor’s note: Does your child have a sensory processing or neurological challenges? Do you feel that has that impacted your feeding experiences? Sometimes breastfeeding problems aren’t breastfeeding problems but actually indicators of something else. I’ve heard from several moms of the last 4 years that have tried everything in addressing their breastfeeding struggles only to discover years later that there was (seemingly unrelated) neurological issues. From somewhere on the autism spectrum to high sensitivity, they have wondered if there is a connection. Maybe baby refuses to latch or latches all the time and overwhelms mom with constant breastfeeding. While it may be something else entirely, some moms do see there is a connection later on when their child is older.

I would love to hear from you if this has been a part of your journey, please comment below, share your thoughts, and if you’d like your story to be included on the website, please email content@theleakyboob.com. Thank you all so much!

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Breastfeeding in public harassment and how you can make a difference

This guest post comes from Austin inviting us all to take a look at how we can go deeper to help bring systemic change when it comes to breastfeeding in public harassment.  Beyond social media campaigns, nurse-ins, and expressing outrage through traditional media, we can each utilize our individual influence in powerful yet simple ways resulting in collective improvements that impact the whole community.  Without a multifaceted approach of intentional influence, our efforts to normalize breastfeeding face not only our own fatigue, but over-saturation of the accessible avenues.  We risk burning out before reaching our goals.  This isn’t about using a cover or not, the issue isn’t modesty or moms being prepared, the issue here is basic human rights and there are most definitely politics involved.  ~Jessica Martin-Weber
by Krisdee Donmoyer

As a breastfeeding advocate active in social media, I am hyper-aware of how frequently nursing in public incidents occur.  Some are big news – Target, a Georgia church, Hollister, Las Vegas – but there are many more that aren’t picked up by major news outlets.   Recently, a Keep Austin Nursing in Public follower posted to my Facebook page about an incident that occurred in my own city at, of all places, a Victoria’s Secret store in which a mother, Ashley Clawson, was denied use of an unneeded fitting room to breastfeed by an employee who told her to take her baby to an alley where “no one usually goes.”

Would you eat here?

Would you eat here?

I reached out to Ashley to offer support and resources, and advised an initial approach of diplomacy and education.  Social media moves faster than bureaucracy, though, and after being told it would be days before she’d hear back from Victoria’s Secret corporate, Ashley agreed to a news interview.  A reporter’s call got a faster reaction from the company than Ashley’s did.  In their response to the reporter they said all the right things: they apologized, they have a policy welcoming breastfeeding mothers, and they’re ensuring all employees are aware of it.

So – awesome!  They did what we want, right?  I mean, I’m pretty sure what all moms want in this situation is that it doesn’t happen to other moms.  So, boom!  We’re done, right?

Well, not exactly.  Ashley won’t be the last mother to face discrimination for breastfeeding in a place of public accommodation.  This is a systemic issue that impacts breastfeeding rates.  It needs a systemic solution.   In Texas where Ashley and I live, there is a law that asserts our right to breastfeed in any public place in which we are authorized to be, but the law does not specifically prevent others from interfering with that right.  So, we are not protected.  What the Victoria’s Secret employee did was wrong.  She violated a civil right and endangered a nursing relationship.  But she did not break the law, because the law does not say she can’t violate our right.

This is true in more states than not.  We tried to improve our NIP law in Texas in the last regular legislative session.  We got a bill pretty far, but we didn’t get it all the way.  Work has already begun to support the bill when it is filed again in 2015.  It will educate businesses that the law exists, prohibit anyone from interfering with a mother’s right to breastfeed in public, and give her recourse if her right is violated.

Whether you live in Texas or another state, you can contact your legislators and tell them what happened here.  Look up your state’s nursing in public law.  If there is no enforcement provision, tell them why it matters to you that they support one.  Tell them that you want to be able to go buy groceries and feed your baby if (s)he is hungry while you’re out, without being harassed?

If our lawmakers hear from enough of us they will realize that their constituents expect them to be a force in creating community support for breastfeeding.  And that’s what it takes: their own constituents – the people who will or will not vote for them when they run again – that’s who makes all the difference.

You can make a difference.

Those online comments we write will only be read for a few more hours.  A nurse-in, while sometimes empowering, is over in a matter of minutes (and leaves a negative impression with some).

Look up your state law and your legislators.  Write an email, or call – or better yet, go visit their office.

Make your voice heard in a way that can make a lasting change.

You can find your state’s law here.  And you can look up your state legislators here and your US Senators and Members of Congress here.

Krisdee Donmoyer Keep Austin Nursing In PublicKrisdee Donmoyer is a feminist stay-at-home mom of three sons and an outspoken breastfeeding advocate. She’s the outreach coordinator for Central Texas Healthy Mothers, Healthy Babies Coalition, and the recent recipient of the 2013 Breastfeeding Hero Award from HMHB, due to her work lobbying for mother- and baby-friendly breastfeeding policies in two central Texas school districts and in the Texas Legislature. You can read more about her work on her blog, Keep Austin Nursing in Public, and like her on Facebook, where she spends more time than cats spend sleeping.

 

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It doesn’t have to be all or nothing

by Kari Swanson
This post made possible in part by the generous support of Beco Baby Carrier.

full term breastfeeding

My daughter was placed on my chest immediately after my obstetrician finished stitching up my c-section incision. She latched onto my breast and started breastfeeding right there in the operating room. Last month we celebrated her third birthday. She knows that babies have mama milk. She also knows that big girls have mama milk until they are ready to stop having mama milk. I expect that sometime between now and the time she is around 5 years old she will gradually wean.

Some might consider the fact that my daughter is 3 and still receiving breastmilk to be extreme, but anthropological evidence indicates that this is biologically normal for a young hominid primate. That being said, it is probably no surprise that I consider myself to be a lactivist. I believe that human breastmilk is the biologically normal food source for human infants and I volunteer as an admin on The Leaky B@@b in order to support other breastfeeding mothers and to help normalize breastfeeding in a culture that has largely lost sight of the real reason women have breasts.

What may come as a surprise to some is that my daughter and my son before her received formula in addition to breastmilk. Why? Because I work full time outside of my home and I am among the unlucky few who truly do not respond well to breast pumps. For whatever reason my body just does not give up the gold for a machine despite my supply being more than adequate. After a time, despite numerous tips and tricks, pumping whenever and wherever I could, I ceased to be able to pump enough milk to entirely meet my babies’ nutritional needs while they were separated from me while I worked.

With my daughter I was fortunate to be able to spend 3 months home with her after she was born, and to spend 3 months thereafter working half time. I pumped at home before returning to work and I pumped before work, during work, after work, and on non-workdays once I returned to work. I had a small stash of milk in the deep freezer when I returned to work, but it was quickly depleted. When I first returned to work and pumped I easily had enough milk by the end of the day to send to the daycare without dipping into my frozen milk stash.

I determined how much milk my daughter needed in her daycare bottles using an iPhone app called “Breast Milk Calculator.” The app uses the baby’s weight, age and number of feedings in the previous 24 hours to suggest how much milk he or she needs per feeding. Using the app I determined exactly how many ounces she needed per bottle. The number of feedings was based on the number of hours she was away from me and how frequently she would normally nurse.

But, just as it had when my son was a baby, my pumping output dwindled over time. Eventually I was pumping less than an ounce per side per pumping session. I used up my entire frozen milk stash. Despite my best efforts at around 6 months I was no longer able to pump enough to send only breastmilk in my daughter’s daycare bottles. So, I sent as much breastmilk as I could and to make sure she had sufficient nutrition I sent formula too.

When my daughter was a newborn she, like her brother, needed supplementation. They both had jaundice and they both lost more than the usual amount of weight after birth. Although her condition was better than her brother’s had been (he was a very sleepy 37 weeker with more severe jaundice), my daughter was also a slow gainer. So, the IBCLC we saw recommended supplementation while I built up my own supply. When my son was a newborn he received formula supplementation, but my daughter received donor breastmilk, or as we referred to it “Auntie milk”—because our milk donor was my sister who was still breastfeeding her toddler son at the time my daughter was born.

By the time my daughter was in daycare full time and my pumping supply could not keep up with my daughter’s demands my sister’s son had weaned. I considered donor breastmilk, but decided against it. My strong, healthy baby did fine on formula, and I felt that the relatively limited supply of donor milk in my area should be available to babies for whom formula was not an option, babies whose mothers could not breastfeed them at all or whose health really warranted the exclusive use of donor milk. So, we chose formula instead.

I already knew exactly what formula I would choose for my daughter if I reached this point, because I had read quite a bit of research about formula before I had my son. I looked up numerous scholarly research articles and reviews of the literature about formula on PubMed. At that point I knew I wanted to breastfeed, but I had been given the somewhat unhelpful advice that my desire to breastfeed and to go back to work full time were “setting [myself] up for failure”. So, in case that was true I did all of that research about formula and based my decision on what I had read. (Bear in mind that my son was born in 2004 and donor milk was not as prevalent, except from milk banks by prescription and at a rather high price.) Despite many assertions otherwise, infant formula is an acceptable, nutritionally adequate alternative to breastmilk and is a much better choice than the milk of any other mammal or milk made from plants.

Eventually both of my babies received only formula in their daycare bottles. Both times the amount I was able to pump became miniscule compared to the amount they needed and the stress and frustration of pumping so little became too much for me, so I stopped. They both did fine on the formula they received part of the time, so I felt comfortable giving them as much as they needed while they were separated from me. My daughter had breastmilk exclusively, either at the breast or in bottles, for more than 6 months. They were around the same age when they started receiving formula alone in their daycare bottles: 7-8 months. Despite this both of my babies continued to breastfeed whenever they were with me. They never experienced nipple confusion, expressed a preference for the bottle, or had nursing strikes. They both stopped receiving formula when they no longer needed bottles at daycare.

So, yes I am a lactivist. I believe breastmilk is the biologically normal food for human infants. But, breastfeeding doesn’t have to be all or nothing.

 

You can read more from Kari over on her site and enjoy her thoughtful, thorough writing and beautiful photography.

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Did you respond well to breast pumps?  Have you had to supplement?  If so, what did you use?  Were you able to supplement and still reach your breastfeeding goals?

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12 Weaning Ceremonies


Breastfeeding can be such a sacred time in our lives. While we cherish the breastfeeding journey, it is rare in our culture to commemorate the end of breastfeeding with little more than a note in the baby book. If breastfeeding was important to you, consider celebrating your experiences and remembering this special transition with a weaning ceremony.

Your weaning ceremony can serve multiple purposes. If you choose to involve your child, it can be an event to mark the end of nursing – something that mother and child gently discuss and plan in anticipation of weaning. For mothers and their partners, a weaning ceremony is a way to honor the transition from breastfeeding to nursing beyond the breast, and all of the emotions that accompany that change.

Some children may not benefit from a definite, marked end to the nursing relationship. If a slow, natural end to breastfeeding is more comfortable for your child, you can still hold a quiet ceremony by yourself, with your spouse, or with other mothers who can understand and support you through this transition. Don’t be afraid to mourn the end of breastfeeding – it is a normal and healthy response to this change. But after you’ve given yourself time to mourn, consciously meditate on the joys of mothering a child who has weaned. A weaning ceremony can help you mindfully navigate this change.

Below are 12 weaning ceremony ideas that you can adapt to meet your own needs and those of your nursling. If you have other ceremony ideas, please share them in the comments so I can add them to the list.

    1. Write your nursling a letter. Include anything you’d like to share about your nursing relationship, what this change means to you, your hopes and dreams for them, etc. I found two examples of weaning letters: one at Mothering.com, the other from a Jewish mother at ritualwell.
    2. Anoint yourself with herbs for weaning. Herbs can help with physical discomfort and emotional healing. Kellymom lists several herbs to help decrease milk supply, including sage and peppermint. Earth Mama Angel Baby makes a No More Milk tea that includes some of these herbs. And because you will experience a drop in prolactin levels during weaning, it may also help to prepare yourself with herbal remedies for depression.(1) Herbs to help alleviate depression that are safe to use while breastfeeding include St. Johnís wort, Evening primrose oil, Motherwort, and Blessed thistle.(2)
    3. Write your breastfeeding story. Start with those milky newborn memories – the pursed lips nursing even after they’ve unlatched, sleepy rooting at all hours of the day and night, the newness of life and the awe of continuing to grow your baby with your own body. Continue on through infancy – those milky smiles, dive bombing for your breast, the day your little one first starts babbling or signing in a recognizable way for milk. Write about the joys of breastfeeding past infancy – nursing gymnastics, manners, nursing away every hurt, the special words and phrases you and your nursling share.(3) Share the highs and lows of your nursing experience and the emotions you’ve gone through along the way. Here are two stories to get you started: one at Kellymom, another at La Leche League International.
    4. Throw a weaning party. For little ones who need a celebration to mark the occasion of weaning, consider having an intimate party – just you and your nursling and partner. Make special foods, bake a cake, whatever makes it special for your family. Here is an example of a weaning party.
    5. Write a book. Create a personal book for your child about their breastfeeding journey, their babyhood, and their transition into a “big kid.”
    6. Hold a special ceremony for your nursling.Sometimes breastfeeding pairs need to wean when neither mama nor child is ready. In these situations, a special ceremony may help mark the day of weaning, helping the child clearly see the end of nursing while beginning the grieving process for both in a bittersweet way.Jessica of The Leaky B@@b was pregnant, gaining very little weight, and felt pressured by her care providers to wean. To help give closure to her 21 month old nursling, Jessica, her husband, and the big sisters all wrote a special note for the nursling. After eating a special meal together, the family gathered around a candle. Jessica invited her nursling to climb into her lap for one last nursing session. As her nursling snuggled in, the family read their letters to the child. They also gave her several sweet gifts. When she was finished nursing, she blew out the candle.

      While your weaning ceremony will be memorable and sweet, be prepared for nurslings to continue to ask to nurse. They simply do not understand what it means to wean forever, and you will very likely have to soothe many tears in the weeks to come (as Jessica did).

    7. Give yourself (and/or your child) a gift. Find something special that represents this transition. I highly recommend Hollyday Designs breastmilk jewelry – it is beautiful.
    8. Create a breastfeeding scrapbook. Gather pictures and/or video of you and your little one snuggling and nursing and compile them into a keepsake scrapbook (a virtual one or one that you can hold).
    9. Go on a date. Take your nursling somewhere special. Make it an event that represents how “grown up” they are.
    10. Tell your child their nursing story. Regardless of whether you write it down, tell your little one about your nursing journey as you’ve lived it. Telling them this story over the years will help normalize breastfeeding for them, and it will help you both retain sweet memories from their nursing years.
    11. Choose a special time to be together. If you or your little one are missing a regular nursing time, find something special you can do together every day at that time instead. Think about snuggling, reading, yoga, meditation, art, or some other activity you will both enjoy. For as long as you need to throughout and after the weaning process, take a few moments at the beginning of your special time to check in with yourself and truly be present with your child.
    12. Design your own ritual.Several cultures and religions have weaning ceremonies. Research them and design a ceremony that will be meaningful to your family. Here are a few resources to get you started:

Did you do something to mark the end of your breastfeeding relationship? Please share in the comments.

Footnotes:
(1) From Kellymom: “Prolactin, the hormone that stimulates milk production, also brings with it a feeling of well-being, calmness and relaxation. The faster the weaning process the more abrupt the shift in hormone levels, and the more likely that you will experience adverse effects.”
(2) Safe herb list found here. It also says that St. Johnís wort should not be taken in conjunction with any other depression medication.
(3) And if you’d like to share your nursing past infancy story, consider submitting it to my series. See my Contributor Guidelines page for more details.

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Dionna is a lawyer turned work at home mama of two amazing kids, Kieran and Ailia. You can normally find Dionna over at Code Name: Mama where she shares information, resources, and her thoughts on natural parenting and life with little ones. Dionna is also cofounder of Natural Parents Network and NursingFreedom.org, and author of For My Children: A Mother’s Journal of Memories, Wishes, and Wisdom.
Connect with Dionna on Facebook, Twitter, and Pinterest!

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Virtual bra fitting experience from a Leaky

I’ve referred quite a few Leakies to A Mother’s Boutique for virtual bra fittings and great costumer service in selecting a bra.  Recently one had such a positive experience she wrote to tell me about it and I thought I’d share it with everyone.

 

A Mother's Boutique shop, nursing bras, breastfeeding

Dear Jessica, 

I wanted to thank you for referring me to Judy at A Mother’s Boutique. I was able to experience an awesome virtual bra fitting service from the comfort of my own home. Honestly, I had doubt thinking how I can order a bra from home and it actually fit well. I emailed Judy inquiring about nursing bras since I am large breasted I have a hard time finding bras with good support. I received an immediate response from Judy regarding my inquiry. She asked me a list of questions such as my current bra size I was wearing, how the bra fit, what I was looking for in a bra and if I was currently pregnant or how old is my little one.  These questions were detailed questions besides the famous question of “what are your measurements”. That question is highly important, but Judy goes beyond the norm to make sure she finds the right bra that fits perfectly for each momma. I was looking for a bra with good support, an underwire and plain in style. After answering all the questions, I received an email with what size I should be wearing and a list of bras that covered what I wanted in a nursing bra. It turned out I have been wearing the wrong bra size my entire life. I thought the size she told me couldn’t possibly be right but knowing I can exchange the bras I decided to order based on the sizing Judy provided for me. I choose the Smooth Nursing Bra and the Anita. The bras came within 2 days and there was no charge for shipping which is an added bonus. I hate having to pay for shipping. Each bra I purchased cost $55.00 which to some people may seem expensive, but for the quality and service it is well worth every penny. I can tell by the quality that these bras will last a long time. Once the bras arrived in the mail I tried them on and they fit like a glove. I couldn’t be happier with the service provided by Judy at A Mother’s Boutique. I highly recommend the Leakies to try a virtual bra fitting with Judy because it was an overall easy and awesome experience with a wonderful outcome. 

Thanks Again, 

Brianne 

One Happy Leaky 

 

After years and years of wearing ill-fitting bras and giving up on nursing bras entirely, I have finally gotten into bras that are not only comfortable and fit well, but are cute and quality.  It turns out I didn’t like nursing bras that didn’t fit me well and were not well made.  Now I love them, thanks to Judy’s help and the breastfeeding bras I have will last beyond my breastfeeding years and are so cute I will still enjoy wearing them.  I will admit that I’ve never wanted to spend much on bras, it felt like such a wasteful expense so I consistently purchased cheap bras that were uncomfortable and fell apart.  My experience mirrors what Brianne enjoyed as well and I can say with confidence, it’s worth getting fitted and spending a little extra for a bra that will fit well and last.  Thanks to Brianne for sharing!

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Have you been fitted for a bra?  How much are you willing to spend on a breastfeeding specific bra?  How many breastfeeding specific bras do you own?

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You can find A Mother’s Boutique on Facebook and on their website.  To sign up for a virtual fitting with Judy, fill out this form.  Please note that though A Mother’s Boutique has been a TLB sponsor for a while now, this post is not a sponsored post.
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Breastfeeding, the ICU, support, and Facebook- Support that keeps on giving

Have you seen this image?

 

When Serena Tremblay responded to a call to share breastfeeding photos on The Leaky Boob Facebook wall, she didn’t think she was sharing anything extraordinary as she sat at the computer with both her sons, Gooney Bear-17 months  and Gorgeous-3 years, with her and her husband making dinner.  It was the first breastfeeding photo she had of Gooney Bear and she just wanted to share.  Including a bit of explanation, the Alberta, Canada mom celebrated her breastfeeding success with the community on The Leaky Boob:

“A nurse helping my 1 day old son nurse while I was in the ICU following his birth. At this point I was a quadriplegic and could only feel his soft hair and skin when he was placed by my neck to cuddle. Breastfeeding is the reason he was allowed to stay with me in the hospital for 5 months while I lived on the physical rehabilitation unit learning how to walk again (complications from when he was born). It’s amazing how much baby stuff you can fit in a hospital room. We are still breastfeeding strong at 16 months! If this is not a success story I don’t know what is :D”

Within minutes there were hundreds of responses and within hours, thousands of shares.  The photo went viral, moving across the internet as an inspirational image and celebrating not just one woman’s breastfeeding success story against all odds, but celebrating every breastfeeding success story for all women.

Even if that photo captured Gooney Bear’s one and only feeding at the breast, this is a breastfeeding success story.  As it is, however, Gooney Bear is now 17 months old and still breastfeeding and these weren’t the only issues Serena and Gooney Bear had to overcome.  Together the pair battled tongue tie for 9 weeks, needing to use a nipple shield, dairy, soy, and gluten sensitivities, and all that on top of the 5 months Serena was hospitalized.

The magnitude of attention sharing this one photo received was a bit overwhelming for Serena.  To her, while this photo documents a personal success story and extraordinary time in her own life, it is also something that just is.  We don’t always realize how our stories, our struggles and triumphs, can impact someone else.  People were so inspired by Serena’s photo; moms told her they were getting ready to quit breastfeeding due to difficulties and her photo encouraged them to find a way to keep going.

“Someone else is in tears, not sure they can keep going, but they see my picture and they think they can do it, they can get through what they are struggling with.”  Said Serena when she and I talked on the phone last week.

The result of a rare birth injury, Serena was fully quadriplegic after the birth of her second son on October 19, 2010.  Her memory of everything following his birth is full of different events but lots of holes and no sequential order.  She was intubated, lucid, in the ICU, and could only feel sensation from her neck up.  The nurses and her husband would place Gooney Bear in the crook of her neck so he could snuggle and so she could feel him at least a little.

Nobody really knew what to expect for Serena’s recovery.  She regained the use of her arms on day 2 and finally saw Gorgeous again for the first time on the 24th, 5 days after the birth of his little brother.

“One of the hardest moments I’ve ever gone through, you know?  When he walked into the room, it felt like he was shy and didn’t know me anymore.  He was 22 months at that time.  After a little bit he came and sat on the bed with me and had a snuggle.  It was very hard.”  She shared.

There’s no doubt Serena Tremblay is an incredibly strong woman.  Fighting an uphill battle with her body, she never gave up.  But she says that’s not how she got through that difficult time.

So how did she get through it?  In talking with Serena one main theme emerged: support.  Her husband.  The nurses.  Her family.  The other patients on the rehabilitation floor when she moved there.  Family members of other patients.  The hospital volunteers.  The lactation consultant.  How did she get through it?  With support.  Lots and lots of support.

In the face of not knowing what was going to happen to his wife, Serena’s husband, a heavy duty mechanic, stayed with her and then with Gooney Bear.  When she was in the ICU, he slept in her bed on the maternity ward so he could be with their baby.  He advocated for breastfeeding for the pair and he and the nurses took turns helping their precious baby boy latch.  Without asking, he took pictures, a bunch of pictures and that’s how the first feed was captured on film, something for which Serena is very thankful.

Support.

The nurses on the maternity ward went above and beyond, the first nurse coming down to hand express Serena so her little boy could have his mom’s colostrum that first day.  There is much love and gratitude in Serena’s voice as she speaks of her nurses, they were heros that got her through every day.  From that time hand expressing her milk, the nurses just kept bringing the baby over on demand, whenever he was hungry, to the ICU to breastfeed until her husband or grandmother could help her or she could do it herself.

Support.

Never once did she hear anyone say “why don’t you just put him on the bottle.”  People said that, people that weren’t involved, but not the nursing staff.

Support.

It’s clear to Serena not only how she got through, but how she went on to have a positive and ongoing successful breastfeeding experience with Gooney Bear.  “Support, support, support.  I’d like to narrow it down and say it was one person but it was everyone.  Why am I successful?  Probably only because of support and because I was determined, I just wanted to do it. Gooney Bear was able to stay with me in the hospital because I chose to breastfeed.  If we had given him bottles they would have sent him home with my husband.”

At a time when nurses, doctors, and hospitals often get a bad rap about providing insufficient breastfeeding support and sometimes down right sabotaging breastfeeding relationships, Serena’s story not only offers encouragement for moms encountering breastfeeding struggles or indeed as a testimony to the strength of the human spirit; her story also gives hope for what true breastfeeding support in the hospital can look like.  Serena’s hospital didn’t realize at the time, but they’ve gone on to provide breastfeeding support extending well beyond this one patient.

When her tube was removed and she was finally able to speak, Serena refused to say anything until she was holding Gooney Bear: she had yet to tell him she loved him.

“I wouldn’t speak to the nurses because I wanted my first words to be ‘I love you Gooney Bear.”

Through out her 5 month hospital stay, ICU for 4 days, maternity ward for 1 month, and the rehabilitation unit for 4 months; Serena was able to keep Gooney Bear with her, breastfeeding on demand and pumping for him to have expressed milk while she was at one of her regular therapy appointments.  Managing her way around the ward and even the whole hospital, Serena says how it’s amazing how much you can do in a wheelchair with a nursing pillow and a baby on your lap.  Often a breastfeeding baby.  During that time she dealt with many of the common issues breastfeeding moms face.  Once a nurse pulled a double shift and helped care for Gooney Bear during the night so she could work to get rid of a stubborn clogged duct before it turned into mastitis.  Even for the regular every day challenges of parenting life she had support, the nurses and other patients or family of patients would take turns holding Serena’s little guy so she could eat, after all, who would turn down cuddling a precious baby?

Today many of those relationships continue, their support and all that Serena and Gooney Bear gave back formed bonds of friendship that last.  Friends from the rehabilitation unit remain in their lives.  Serena and her family go back and visit the hospital staff regularly and they are all happy to see them, often crying at the progress Serena has made since she left the hospital over a year ago.  Her recovery has been remarkable and though it’s ongoing she’s accomplished so much and doesn’t take for granted what she can do.  Their family is like any other family, they like to do things every normal family likes to do, “we just have to do them a little differently” Serena shares.  Their friends understand, they were there, they have seen where they’ve come from, they supported them in the journey and in the ongoing part of that journey today.

One of the nurses that helped Serena so much is expecting her first baby soon.  Serena is looking forward to being able to support her now, encourage her in her own breastfeeding and parenting journey.  Understanding how crucial support is, Serena is already there.

“It was a horrible thing and I wish it hadn’t happen – but it did and so many good things came about from it… if my story can help one mom to get support, receive support, or give support then it was worth it.”  And so Serena shares her photo and her story.

Sometimes I am asked why people share breastfeeding photos on Facebook and other social media settings.  This is why.  It’s celebrating our personal triumphs- whatever they may be; sharing a special moment, encouraging the global community of mothers by normalizing breastfeeding, inspiring others, and giving support.  Thousands of people have been inspired and encouraged by one photo with a simple caption.  Our stories make a difference and if a picture is worth a thousand words then sharing breastfeeding photos is like breastfeeding support spreading exponentially around the world.  In the global community we’ve moved on to via the internet, sharing our photos and stories online can often be the start of support for someone.  Just ask Serena, you never know how one image can make a difference.

 

My gratitude to Serena for being so brave in sharing the original photo in the first place and then to be willing to open up and share more of her story for my readers here.  All photos in this post are the property of Serena Tremblay and used with permission.  To protect the privacy of her family, Serena opted to use nicknames for her children and as the details regarding the birth injury were not important to the point of the story, she asked that they not be included in this article.  With an open medical investigation into Serena’s case, we appreciate your respect of her privacy on these details.  ~Jessica 

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