Not Having Enough But Still Being Enough

by LaTia Wilson Barrett 

Note from the editor: This guest post from a Leaky is sharing one person’s journey through breastfeeding. Her story isn’t a prediction for yours but like your story, her story matters. For those that can relate to LaTia’s story, we hope you find encouragement and support to know you are not alone, for those who can’t relate, may empathy and understanding be your guide.

LaTia Wilson Battett article- June 2016 pt.1

When I first found out I was pregnant, I was ecstatic. My mind was instantly flooded with all the hopes and dreams I had for myself as a parent. I was excited for the chance to experience that first flutter, first kick, first… everything. One of my first thoughts about giving birth, well, following wincing at some of the stories I’d heard about the process, was about the experience of breastfeeding. So many of the parents in the various online groups I was a part of talked about how much of a bonding time breastfeeding was, and how much their sweet newborn took to it right away, and how much pride they had in being able to exclusively breastfeed their baby. I read these kinds of stories with a kind of wonder and glee that one feels when thinking about the magic of Christmas. I mean, it all sounded so idyllic and perfect. I never had any reason to think that things wouldn’t be just as magical for me. As it turns out, it was not at all magical for me. I had always assumed that everyone could breastfeed their child if they chose, and it never occurred to me that I would have an issue. But I did. And it hurt. A lot. It shattered me, until I was able to redefine for myself what it meant to be a mother.

My daughter was born at 36 weeks and 3 days via emergency cesarean after 32 hours of labor and 1 hour of pushing. I had been induced due to severe pre-eclampsia, and by the time my daughter was actually born, I was too exhausted to fully enjoy the moment. But here she was, all 6 pounds 14 ounces of her, looking just as harried as I felt. But she was here and not too much worse for wear. While I was in the recovery area, one of the first things I asked for was a breast pump. I knew that if my daughter and I were going to be separated even for a just a few hours that I would need to try to get things started on my own.

However, a few hours turned into 5 days. Over the course of the days that we were separated I pumped, even during the 2 days that I spent in the ICU due to respiratory distress. I never got the “rock hard”/full feeling, I never woke up leaking, but I continued to pump, assuming that I was one of those women who took a little longer than a couple days for her “milk to come in”. I was so happy the first day I saw a few drops, and cried happy tears (and took pictures!) the first day I was able to pump a measurable amount (about 10mls)! I very clearly recall the day that I finally was able to put my daughter to breast. I cried because it was one of the moments I had been looking forward to the most since finding out I was pregnant. We were both tired and more than a little worn due to our experience, but we were finally together and all was right with the world.

LaTia Wilson Battett article- June 2016 pt.2

After 10 days in the hospital, we were finally released to go home. My milk still hadn’t “come in”, but maybe I was just one of those who was a little later than everyone else. I mean, I did have an emergency cesarean, an ICU stay, and was really sick following her birth. But, it was going to happen any day now, right? Right?? As it turns out, I did have milk, but it just wasn’t enough to feed my baby. It never dawned on me that I could actually have supply issues and that I wouldn’t be able to feed my daughter.

We are never really told what to do when breastfeeding doesn’t work out, aside from, “take fenugreek… pump more… drink more water…” But what about those of us who have serious supply issues that a simple cup of tea or oatmeal cookie just won’t fix? Why aren’t more women educated about what CAN happen, and how to address it? Why are so many of us made to feel like failures and told if we just “put baby to breast more often” or “pump more often” things will work out just fine? I spent many months and lots of money chasing my dream of breastfeeding my baby, when I really should have been more focused on just enjoying her.

LaTia Wilson Battett article- June 2016 pt.3

At the height of my breastfeeding journey, I produced roughly 2 ounces of milk PER DAY. My self-worth for quite some time was measured in ounces. It wasn’t until I developed tendonitis which required I stop pumping altogether around 5 months that I realized that my daughter loved me whether I gave her breastmilk or formula. She would smile just as bright and laugh just as long. She loved ME, not what my breasts could or couldn’t give her. And while I cried on the last day that I gave her my breast milk, I know that she has gotten not only what’s best for her, which is a full tummy, but I’ve also gotten what’s best for me, which is less stress. I still think about “what ifs”, and all the things I maybe could have done differently to produce more milk, and I still feel a slight pang whenever I see a parent nursing their child, but I know that our journey turned out “right” for us, and that’s just fine with me.
 

Concerned you may have low supply? Go here to learn more about what’s normal, what’s not, signs of low supply, what you can do, and when to seek help.

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LaTia's headshot- June 2016

 

LaTia lives in Maryland with her wife and daughter. She loves all things food and Disney, and tries to combine the two as often as possible. When not at Disney (or planning a Disney trip), she is a WAHM, babywearing educator, postpartum doula, and singer.
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My Journey As A First Time Mom; a #MyStoryMatters Leaky Share

by Kelly Warner

guest post, leaky to leaky

Meet Samuel. This is my rainbow baby, who we welcomed with joy in January, 2014. After struggling with infertility for 5 years, my doctor in Houston told me it was unlikely that we would ever conceive. When we moved to St. Louis we started seeing a fertility specialist, who discovered a few factors that were either keeping us from getting pregnant or not allowing us to sustain pregnancy (an underactive thyroid, being a carrier for MTHFR and either not absorbing folic acid well or clotting after conceiving, and low progesterone). Once we addressed those issues we got pregnant right away, which was so encouraging after having our arms ache to hold a child for years. Unfortunately, we miscarried at 9 weeks and would later miscarry a second time at 6 weeks.   We were in a very dark place but continued to trust God with our fertility. A few months after our second miscarriage we found out we were pregnant again. 40 weeks later, after a snowstorm and before another one shut down the city for a week, our sweet Samuel Bennett was born!

I was so focused on maintaining a healthy pregnancy and having a natural birth that, admittedly, I didn’t educate myself on breastfeeding. Our Bradley Method instructor encouraged me to attend LLL meetings while pregnant to meet other like-minded moms, but I didn’t make it a priority to go. I knew that I wanted to breastfeed for a minimum of 12 months and had hoped that I would be able to make it for 2 years, but I figured I would have the baby first and then it would just naturally come to me. You know, because so far my story has been so natural and easy that it makes sense that I would just figure it out.

We had a beautiful natural birth and our nurses were great about immediately putting Samuel on my breast and delaying all newborn procedures until we had time to bond. He didn’t latch right away but found comfort sleeping on my chest. (In his defense, he did have a pretty long and intense birth that included 4 hours of pushing, his cord wrapped around his neck twice, and the threat of a C-section before I pushed so hard I broke my tailbone and his head came out before the doctor was even suited up to catch him). I kept trying to get him to latch and had just about every lactation consultant and nurse helping too. We were adamant about not using bottles, sugar water, or formula, so when he started showing signs of dehydration, we all panicked. The LC informed me that the combination of my flat nipples and large breasts were making it difficult for Samuel to latch and she recommended we use a breast shield. I was a nervous first time mom, who just wanted her baby to eat, so I took her at her word and began using the shield. I have since come to learn that there are absolutely medical situations that warrant the use of a shield . . . but mine was not one of them. Samuel began “latching” and getting colostrum, but it was so frustrating, painful, and messy for me. Worried that I would give up with breastfeeding, the LC convinced me to rent a breast pump to take home, pump my colostrum, and feed with bottles until my milk came in. Although she unnecessarily encouraged me to use a shield, I have to give her credit for pushing breastfeeding. She showed me how to use the pump and was shocked when I pumped 2 ounces of colostrum in a few minutes. At the time I was super confused why she was all giddy (and felt the need to show my liquid gold to everyone working in the maternity ward) but have come to learn that colostrum is not typically measured in ounces. That gave me hope that I was going to be able to feed my baby – it was just a matter of figuring out how.

My milk came in a few days after we got home from the hospital and my already large breasts became so engorged I didn’t know what to do with them! Seriously, they practically had their own zip code (38-K)! I had a serious oversupply problem and a fast letdown that Samuel did not find nearly as amusing as my husband and I. He’d pull off the breast and get super-soaked in the face or just grimace as a stream of milk shot halfway across the room. I guess when you’re an exhausted new mom you find the humor in anything, because everything else is just so, so hard!

We continued to use the nipple shield but struggled. I can’t tell you how many times I wanted to quit. Thankfully, my husband knew, deep down, I didn’t really want to quit and I just needed to be encouraged to continue. He was up at every diaper change and night feeding with me, sitting at my feet, praying for me. I remember one time in particular: It was 2am and I was exhausted from nursing Samuel around the clock during a growth spurt. My husband and I got up to feed him and I burst into tears when Samuel latched and I felt the “60-second sizzle.” I said I didn’t want to mess with the shield anymore and that I just wanted to feed my baby. He comforted me in that moment and said he had read that night feeding was a good time to try to wean off the shield. So, figuring it couldn’t get any worse, we took off the shield, and together, we re-latched Samuel. I’m talking, all 4 of our hands were trying to hamburger my nipple so Samuel could latch! There were more tears (by me) and more words of encouragement (from the hubs), and finally Samuel latched! This was such a small thing but felt like such a big breastfeeding victory!

I continued to pump out a few ounces before EVERY feeding to soften my breast tissue so he could latch better. It was really annoying to be tethered to my pump and time-consuming to have to constantly be cleaning out pump parts (and during the winter, which made my hands crack and bleed), but it was worth it to be off the shield and begin having a successful nursing relationship with my son. Plus, it allowed me to build up a good stash of breast milk that I donated to my friend to give to her adopted newborn.

By the time Samuel was 6 months old my supply had finally regulated. It was so freeing to be able to feed on demand and not have to pump first. Samuel was healthy and happy and in the 50th percentile for his weight, and an added bonus was that he was a really good sleeper! Shortly after he turned 7 months old, however, he started waking up multiple times at night to nurse. We brushed it off and assumed he was just teething or going through a growth spurt, but it continued for weeks. I called my pediatrician and asked her why she thought his sleeping pattern changed suddenly. We ruled out ear infections, viruses, the Bubonic Plague, and continued to be dumbfounded . . . until my ped asked if it was possible that I was pregnant. I probably offended her for laughing so loud on the phone, but, come on! Me? Pregnant? I mean, sure, it was a possibility I could be pregnant, but I was exclusively breastfeeding, had not introduced solids, and remember how it took the stars aligning for me to have a healthy pregnancy with Samuel? I hung up the phone, dug out an expired pregnancy test from the Dollar Store, and took the test . . . and then proceeded to take another 3 before I believed my eyes! I told my husband and he didn’t believe me, so he went to the pharmacy and bought the most expensive digital pregnancy test . . . which told us the same thing the 4 tests prior did, only in words instead of hieroglyphics. I. Was. Pregnant!

guest post, leaky to leaky, pregnant photo

Once the initial shock settled we were thrilled for our news, but clearly my milk supply had already begun to decrease. Ahhhh the irony! My ped suggested starting a supply-boosting supplement that was safe while pregnant, but cautioned that it was likely we would need to supplement with donor milk or formula. Having just donated all of my pumped milk to my friend for her adopted baby, we were forced to supplement with formula. We chose the only organic formula that we can buy locally and hoped that it would be palatable. Only, Samuel wouldn’t take it. Clueless about what to do, I emailed Jessica from The Leaky Boob for advice and was so humbled that she took the time to answer me. She encouraged me to get a Supplemental Nursing System (SNS) to keep stimulating my breasts to produce milk while getting Samuel the supplementation he needed. He had lost so much weight he dropped to the 5th percentile, so we were ready to try just about anything. All I can say is using an SNS is like trying to juggle flaming arrows while blindfolded! I feel it apropos to high five any mom that has successfully nursed with an SNS. First off, that thing is impossible to set up alone (thankfully my husband is really supportive of me breastfeeding). Secondly, the tape that is supposed to keep the tube in place is worthless! Thirdly, my son was so offended that I was trying to sneak that tiny plastic tube in with his latch. Needless to say, we gave up.

After giving up on the SNS we tried to introduce a bottle. By this time Samuel was close to 9 months and had only had a bottle when I pumped my colostrum the first few days of his life. If he was offended about the SNS tube, he was not having the bottle either. We must’ve bought one of every brand of bottle on the market only to find out he would rather starve. We tried syringes, medicine droppers, spoon-feeding, sippy cups, open cups and this kid was not impressed. The only thing that he took a liking to was a straw – and not a sippy cup with a straw because that’s far too juvenile for a 9 month old – a straw that you, a grown adult, would get at a restaurant. He’d sip on the formula throughout the day but never really had a “feeding” like he would with breastmilk. We sneaked it in smoothies, made popsicles, and just about anything to get that kid to drink milk.

Keep in mind I’m still pregnant through this . . . I’m tired, hormonal, my nipples are sore, and I’m nauseous! I lost 10 pounds from throwing up and not being able to eat food while pregnant and still nursing Samuel. Those days were ROUGH! I kept telling myself that, “This, too, shall pass.”

We found our rhythm and made the most of our cuddles and nursing sessions until Samuel started throwing fits when I offered him the breast at nap-time or bed when he was 13 months. After a few days of us both crying at every feeding, I assumed he was no longer interested in nursing and wanting to wean. I stopped offering it and we just, kinda moved on. Looking back, I honestly believe he was having a nursing strike from being frustrated from having to work so hard to get any breastmilk.

In May we welcomed our daughter, Felicity Claire, into the world. Once his sister was born he started showing interest in nursing but it was as if he had forgotten how it all worked. He constantly talked about my “ba-ba’s” and wanted to touch them for his sister’s first month of life. 4 months later, he asks for milk at bedtime and smells and touches my breasts asking for more. It breaks my heart that I likely cut our nursing relationship short, but I am glad we were able to overcome so much and still make it 13 months.

guest post, leaky to leaky

So far, Felicity nurses like a champ and I feel so much better prepared this time around. While I wouldn’t wish my struggles with breastfeeding on anyone, I am glad I had to persevere through them. Not only did it show me how much support I have, but it highlighted how important a good support system is for breastfeeding. I hope that other moms find support to help them reach their breastfeeding goals and that my story encourages them in their journey.

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guest post, leaky to leakyKelly is a mother of two from St. Louis, Missouri, who lived a good chunk of her adult life in Houston, Texas.  She and her hunk of a husband struggled with infertility for 5 years and had multiple miscarriages before having their first child in 2014.  Prior to starting a family, she taught 7th grade life science at a college preparatory charter school for low-income, minority students in Houston.  When she’s not nursing her 5 month old or telling her 21 month old to stop throwing balls at his sissy’s head, Kelly enjoys hanging out with her husband, binge-watching Gilmore Girls, and writing music.  Despite many struggles with breastfeeding, Kelly nursed her son for 13 months; 6 of those while pregnant with her daughter.  In addition to being passionate about breastfeeding, Kelly loves baby wearing, cloth diapering, staying up to date on car seat safety, and having grandiose dreams of being a midwife someday. In the meantime she’ll stick to chasing her sports-nut toddler around the neighborhood and hoping that she remembers to put her boob away before answering the front door.  

 

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Breastfeeding Back to Work; a #MyStoryMatters Leaky Share

by Annie Laird, a Leaky

guest post, #MyStoryMatters, leaky to leaky, Annie Laird

I was attending the Naval Postgraduate School when I had my first daughter. Luckily, I had her at the end of a quarter, and got to take an entire 3 months off school before going back. The Department Lead of my curriculum has also breastfed all her children and was very supportive. She allowed me to use the office of an adjunct professor that was on a leave of absence to pump my milk for the fist year of my daughter’s life. I had an abundant supply and exclusively breastfed her for 7 months prior to introducing any other food. I built up a freezer stash that was sufficient to cover my overnight absences from her starting at 7 months when I got underway for a week at a time on research cruises off the California coast (I was working toward my Masters degree in Physical Oceanography). There was no way to store my breastmilk on the tiny vessel, so I diligently pumped every 3 hours and poured it all down the drain. Just before she turned 1, I stopped pumping during the day, and we continued nursing until just after her 2nd birthday, when I had to deploy overseas as the Weapons Control Officer on a Guided Missile Destroyer. 

I breastfed my 2nd daughter fairly easily, albeit, without ever being able to build up the huge freezer stash I was able to with my first. It probably was because I only got 6 weeks of maternity leave before I had to be back at work. When she was 3 months old, I flew with her and my oldest daughter to Bahrain to visit my husband, who was deployed there. The fact that she was breastfed made the trip so simple. She slept most of the 14 hour flight from Washington D.C. to Kuwait! No bottles to mix, no formula to drag along. Shortly after that trip, I left Active Duty Naval service, and started my first civilian job. I let my supervisor know that I would need a place to express my breastmilk throughout the day, and it had better not be a bathroom, thank you very much! A retired Master Chief himself, he ran all over base, finding an adequate space for me.

My supply tanked when my 2nd daughter was about 7-8 months, and I couldn’t figure out why. Then, oh! I’m pregnant! Surprise!! I cried every time my daughter would latch on; cracked, bleeding nipples were the order of the day. The scabs would dry onto my bra and as I would open my bra up to nurse, the scabs would rip off, starting the bleeding all over again. I finally called up a local IBCLC, Robin Kaplan, and cried over the phone about how miserable I was. She replied, “Annie, first rule: Feed the Baby. If you aren’t happy with the situation, transition to formula and quit breastfeeding.” So I did! I hung up my pump when my 2nd daughter was 9 months of age, and she weaned directly to an open cup (thank you Navy day care ladies for teaching her that!).

I gave birth to my 3rd daughter at home, and she took to breastfeeding like a champ. I took 8 weeks off of work, and then me and my pump started making the trek every 2-3 hours back to the pumping room at my place of employment. I keep my supply up by cosleeping with her and nursing throughout the night.

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Annie Laird is the podcast host of Preggie Pals (a sister show of The Boob Group podcast), a Certified Labor Doula, Lactation Educator, Navy Veteran, Navy Wife, Mom to 3 little girls, and a Government Contractor. She has breastfed all her kids while holding down a job (at times, multiple jobs) outside the home and is currently breastfeeding her almost 6 month old exclusively.
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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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Do we have thrush?

by Tanya Lieberman, IBCLC, sponsored by Motherlove Herbal Company.

Having thrush is be painful and frustrating.  And trying to figure out if you have thrush can be confusing.  Here’s our guide* to aid in determining whether you and your baby have thrush. 

Please note that we are not discussing treatment options in this post. For information on treatment please see Dr. Jack Newman’s Candida Protocol.

 

What is thrush?

Candida albicans is a fungus lives in our bodies.  Some conditions such as antibiotic use and illness can cause it to grow out of balance, and this overgrowth can cause painful infections, generally in moist areas such as the mouth, nipple area, vagina, and diaper area.

 

How is thrush diagnosed?

Diagnosing thrush is difficult, because skin tests are considered unreliable, and the results aren’t available for several days – a lifetime when you have pain!  Most doctors diagnose thrush based on symptoms and not diagnostic tests.  So you may hear that thrush is diagnosed through treatment – if it responds, it must have been thrush!

 

What makes me more likely to have thrush?

You and your baby may be at higher risk for thrush if you or your baby have recently used antibiotics (often used for a cesarean birth), have been ill, or perhaps have been in a very warm and moist environment.  Thrush takes time to develop, and may not be obvious until a few weeks after this trigger, so pain in the first week or so after your baby is born is unlikely to be thrush, and is much more likely to be caused by a shallow latch or one of the other causes mentioned below.

 

What symptoms are strongly associated with thrush?

Mother symptoms:

One study of mothers between 2 and 9 weeks postpartum found that mothers who have two or more of the following five symptoms are likely to have thrush.  Having three or more makes it even more likely.

  • shiny or flaky skin of the nipple/areola
  • burning pain on the nipple/areola
  • sore (but not burning) nipples
  • stabbing pain in the breast
  • nonstabbing pain in the breast

 

And a mother is highly likely to have thrush if those symptoms include:

  • shiny skin of the nipple/areola with stabbing pain, or
  • flaky skin of the nipple/areola in combination with breast pain

 

The study also found that mothers were likely to have symptoms on both breasts, though sometimes not right away.

 

Baby symptoms include:

  • White patches on the baby’s cheeks, gums, palate, tonsils, and/or tongue.  If you try to wipe off these patches they will appear “stuck” there, and may bleed.
  • A yeast diaper rash, which may be red or red with raised dots

 

Can you have yeast inside your breasts? 

Shooting and/or burning pain deep inside the breast is sometimes diagnosed as intraductal thrush – thrush in or around the milk ducts inside the breast.  This diagnosis is controversial, as recent research has found that mothers with suspected yeast infections may actually have bacterial infections or Raynaud’s vasospasm, and that yeast hasn’t been cultured in the milk of mothers with suspected interductal thrush.

 

If it isn’t thrush, what could it be?

Other causes of pain which may make you suspect thrush:

  • Shallow latch
  • Raynaud’s Phenomenon
  • Bacterial infection
  • Mastitis
  • Skin problems such as eczema, psoriasis, dermatitis

 

My baby’s tongue is white.  Does that mean he has thrush?

Babies’ tongues normally have a white coating.  This in itself is not an indication of thrush.  If your baby has white patches on the inside of his cheeks or gums (if you try to wipe them off they may look red or bleed), this is an indication of thrush.

 

My doctor said that my baby doesn’t have white patches in her mouth, so we couldn’t have thrush.  Is that right?

Some babies who have thrush do not have white patches in their mouths.  Some may have a yeast diaper rash and no symptoms in their mouths.

 

I was treated with Nystatin and it didn’t work.  Does that mean I don’t have thrush? 

Nystatin is ineffective at treating thrush in an estimated 68% of cases.  So if the symptoms didn’t go away using it, you may still have thrush.  Consult this guide to thrush treatment for other treatment options.  See this study for more information on the use of Nystatin in treating thrush.

 

My doctor said that since I have symptoms but my baby doesn’t, she doesn’t need to be treated.  Is that right?

If thrush has been diagnosed in either of you, you both should be treated to prevent recurrence.

 

I keep getting thrush over and over.  Could it be something else?

If you have repeated cases of thrush, or if treatment doesn’t resolve your symptoms, you may want to explore whether your symptoms are caused by some other problem instead or, or in addition to, thrush.

 

I think I have thrush.  What should I do now?

Contact your health care provider and explain your symptoms. You may also wish to consult this guide to thrush treatment.

 

*This information is provided for educational purposes only, and should not be construed as medical advice.  For care suited to your own situation, please consult your health care provider.

 

References: 

 

Mohrbacher, Nancy.  Breastfeeding Answers Made Simple: A Guide for Helping Mothers.  (Amarillo: Hale Publishing, 2010), pp. 652-53

 

Jimi Francis-Morrill, M. Jane Heinig, Demosthenes Pappagianis and Kathryn G. Dewey.  “Diagnostic Value of Signs and Symptoms of Mammary Candidosis among Lactating Women,” J Hum Lact August 2004 vol. 20 no. 3 288-295

 Tanya Lieberman is a lactation consultant (IBCLC) who has helped nursing moms  in hospital and pediatric settings.  She writes and produces podcasts for several  breastfeeding websites, including  Motherwear,  Motherlove Herbal Company, and  the Best for Babes Foundation.  Tanya recently authored Spanish for Breastfeeding Support, a guide to help lactation consultants support Spanish-  speaking moms.  Prior to becoming a lactation consultant she was senior  education policy staff to the California legislature and Governor, and served as a  UN civilian peacekeeper.  Tanya is passionate about supporting nursing moms, and especially to eliminating the barriers so many moms face in meeting their breastfeeding goals. She lives in Massachusetts with her husband, her 8 year old son and her 1 year old daughter.
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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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