"Success is not final, failure is not fatal: it is the courage to continue that counts." -Winston Churchill

Wednesday, March 28, 2012

Jessica's Story

One day, I happened upon a post in a facebook breastfeeding support group. A mom was looking for advice on how to increase her milk supply, stating that she was working closely with lactation consultants, and pumping and nursing frequently. Well, that post lead to this post. And it lead to a friendship between two women with the same struggles, though they were on either sides of the continent. While I am not glad we both have IGT and milk supply issues, I am thankful that we found each other. Congrats, Jessica, on beating the odds, and staying the course.
love, Nyssa (the Lactation Failure)

Sweet little London… This is our story, yours and mine. 
I never thought we would make it this far.

One year ago today I gave birth to the most amazing little person… a feisty little punkin’ with a head of thick black hair and a heart-shaped birthmark.  Her birth didn’t go as we had planned, and in order to regulate her blood sugar the nurses had to feed her formula before I even got to hold her.  I told myself we had to do what was best for her at the time, but this made me even MORE committed to doing the best for her in the long run by breastfeeding.

I nursed as soon as I could, maybe not as soon as I should have looking back.  She latched right away, and stared into my eyes while we nursed.  I was in heaven.  We continued to nurse, in our favorite position the “football hold” every two to three hours for the first two days, supplementing with formula after feeds.  She was almost a ten pound baby, and ten pound babies need to eat!  I had packed my breast pump in the car, and asked the nurses if I should start pumping to bring my milk in faster…  “Oh, no!  Your body will think you had twins!” was their answer.  Looking back, oh how I wish my body had made milk for twins…

On the third day something felt different, and I thought for sure my milk had come in.  The nurses brought an SNS (Supplemental Nursing System) so I could supplement with formula while still feeding her at the breast…  This was difficult, having to get her latched on and then sneaking a tube into her mouth, but worthwhile.  At one point she nursed for four hours straight, what I assumed was this “cluster feeding” I had heard so much about.  The nurses weighed the baby each night, and she continued to lose weight… dropping from 9lbs 13oz at birth to 9lbs by discharge.  I asked over and over to see a lactation consultant, but one never came.  Three days later, at our first of many trips to the hospital’s breastfeeding clinic she was down to 8lbs 10oz. 

Something was wrong.

I went to the breastfeeding clinic two to three times a week those first few weeks.  We did weigh-feed-weigh sessions, tracking how much milk she “transferred” at a time… it was usually ½ to ¾ of an ounce at a time.  I would listen as other new moms did their weighed feeds, and transferred two to three ounces per side.  I cried.  A lot.  The lactation consultants, Jerri and Anna, hugged me and told me that some moms just didn’t make enough milk.  I cried some more.  I tried to concentrate on my baby and not worry about everyone else around me, but there was no way not to notice I was one of the only ones not making much milk…  We talked about fenugreek and the importance of nursing frequently.  They gave me suggestions about undressing the baby, and keeping her arm moving like a “milk pump” to keep her awake.  They pushed the formula supplementation.  I really thought that at some point it was all just going to “click”.  Maybe my milk just hadn’t yet fully come in?  When she started taking less supplement around the second week, I thought for sure our problems were over.  At the next visit I proudly told the lactation consultants that we were doing better!  She was taking less supplementation!  She wasn’t even fussy!  They weighed her, she had lost even more weight, and they said the words that will forever haunt me.  “She’s not fussing because she’s trying to conserve her energy.”

I was starving my baby.

By that point I had come to terms with the need to supplement.  She needed to eat, and despite my best intentions and efforts (taking a breastfeeding class, attending La Leche League meetings while pregnant, going to the breastfeeding clinic, etc.) I wasn’t making enough for her.  I started pumping, and in the beginning I would literally get a few drops at a time.  Most pumping sessions wouldn’t yield enough to cover the bottom of the bottles.  We went to our Pediatrician appointments, and at one of the first ones he gave us 20 cans of formula.  TWENTY CANS OF FORMULA.  I told him how important breastfeeding was to me… and just remembering that giant pyramid of formula cans makes me wonder how many other moms in that office have given in to the temptation of ending breastfeeding because of those cans. 

Around this time I had met up with my amazing doula Christine at Starbucks.  We were talking about my milk-supply issues, and she told me that some moms use donor breast milk.  She suggested I ask some friends if they would give me some of their extra frozen milk.  “Ewwwwwwww!  People really do that?!?  How embarrassing!”  I thought, and might have even said.  I thought Christine was nuts!  It seemed disgusting to me.  But, then again, so did the formula.  I’m really not anti-formula, not in any way.  I know that formula was absolutely necessary for my baby – literally from the start.  I’m thankful that formula exists, especially for babies who truly need it.  But that wasn’t in my plan.  My plan was to breastfeed. 

Unsatisfied, I started Googling.  “How to make more milk”  “Breastfeeding Issues”  “Am I making enough milk?”  “How to increase milk production”  I’m sure I Googled every combination of these words a hundred times over.  I was taking Fenugreek, More Milk Plus, and Goat’s Rue.  I ordered lactation cookies and drank non-alcoholic beer.  I pumped with my rented hospital-grade pump.  I upped my calories, napped, drank more water, did skin-to-skin, and wore my baby.  I.  Did.  Everything. Constantly reading online that “everyone can breastfeed” and “just put the baby on the breast, your body will know what to do” did nothing for my self-esteem or my sanity.

During my Googling I stumbled across the Facebook page for Human Milk for Human Babies.  They are milk-sharing groups set up for moms with too much milk, and babies without enough.  I saw a post from a mom in Bakersfield, my hometown, with milk to donate.  I wasn’t sure if we were “okay” with using donor milk, but something told me we had to explore it more.  I got in touch with her, secured the donation, and my husband and I decided we would accept the milk and then think some more about using it.  Could I really feed a stranger’s milk to my baby?  When we got the milk we had decided to try it.  The first two or three days we “flash pasteurized” the milk, just to make us feel better.  London was thriving, in part from another woman’s breast milk.  I started seeking out additional donations.  Amazingly, we were able to switch to exclusively using donor milk for supplementation by two months post-partum, and I will never be able to repay that amazing gift from a handful of moms. 

But I didn’t give up trying to increase my own production either.

I finally decided to get somewhat of a “second opinion” and started looking for another breastfeeding clinic.  I called Loma Linda, where my husband attends school, and asked for an appointment at their hospital’s breastfeeding clinic.  The lactation consultant I spoke with told me that from what I was describing it sounded like I had IGT – Insufficient Glandular Tissue, or Mammary Hypoplasia.  She couldn’t fit me in before she left on vacation, so she suggested I call a lactation consultant friend of hers at another hospital.  I did, and she got me in right away.  When I arrived, we talked, she examined me, and immediately diagnosed me with IGT.

That’s the day everything changed.

Jenny, the miracle worker, explained that despite doing everything correctly my body physically could not produce enough milk.  I wasn’t doing anything wrong, and no matter how hard I tried there was a possibility it just wouldn’t work.  She told me to Google Dr. Jack Newman, a breastfeeding advocate Pediatrician from Canada.  She told me about a miracle drug called Domperidone, available for purchase overseas only… an acid reflux medication with a fabulous side-effect of increasing prolactin levels and therefore increasing milk production.  She gave me strict feeding/pumping instructions.  I did everything she said, and when the Domperidone fully kicked in I saw my pumping output increase more and more.

I went from making approximately 5-8oz a day (based on the weighed feedings and my pumping output) to well over 20oz. Some days I was able to exclusively breastfeed, and not require any supplement.  We were able to acquire more and more donated milk, and eventually found one main donor who made 8oz of extra milk each day – exactly what my daughter was taking (most days.)  By the time my little one was swallowing some solids, my milk satisfied her more and more. 

After having somewhat of an official “diagnosis” I was able to connect with an amazing support system of other moms facing these same issues online.  I will be forever grateful for my virtual friend Nyssa, whose blog “Dairy of a Lactation Failure” was my comfort and main source of information.  She was going through the same things I was, and I felt – for the first time – that I wasn’t alone.  She invited me to a Facebook support group, and the camaraderie, information, and support there has been life-changing. 

When the baby turned six months old I decided I need to relax a bit about her milk-intake…  I had been tracking (using an App on my phone) every ounce of my milk and supplement that she was taking.  I was turning to the App to tell me when she was hungry, and relying less and less on my Mommy-instincts.  It was truly making me crazy.  Quitting tracking was VERY hard at first, but super beneficial for my emotional state in the long run, even though occasionally I do track for a day or two to see how much milk I’m making.

Throughout this time, my number one breastfeeding support was my husband.  He would bring the baby to me to eat, make sure I was comfortable, help with the SNS tubing, make bottles of supplement, bring me snacks and water while nursing, and he washed my pump pieces ABOUT 1,000 times this year.  I truly don’t think I would have made it this far without him.

I think a lot about what I’ll do differently next time…  I’ll definitely pump from the very beginning; some women with this condition even begin pumping the last few weeks of the pregnancy.  I will have my prolactin levels measured, and see if anything seems amiss.  I will start taking Domperidone right away after delivery, I’ll have to email Dr. Newman again to find out how soon he recommends.  I will begin to collect donor milk before the baby arrives, and hope to be as successful in finding it as I was this time.  But more than anything, I hope to be at peace a little more next time… knowing that I’m doing all I can do. I want to enjoy those first few weeks more the next time around, not worrying so much about what my body can’t do.

Fast forward to today.  While I type this, I sit here pumping…  The melodic swish-  swish-  swish-  of my Medela Lactina sings as I write.  There are no tears tonight, just a very proud smile, and semi-full bottles.  A year’s worth of work has been TOTALLY worth it.  Every drop of milk my precious little one has received reminds me of our struggle, and our triumph.  A few people have asked me how long I plan to keep breastfeeding, and I really don’t know… as long as she’ll have me, I think.

I never thought we would make it this far.


  1. Wow, this truly tugs at my heart. I went through struggles the first couple of months, but my struggles were superficial compared to this. It's stories like these that truly warm my heart. Thank you Nyssa and Jessica for sharing your struggles with others, so they may benefit and possibly not have to go through the things you two did.

  2. I'm so happy dom worked for you! I really, really, really understand how you feel.. Being told that everyone can breastfeed, not believing you could be in that small percentage that can't.. I've gone through this with two babies. I'm using the SNS full time now with my four month old to try to keep her latched as long as possible. My son weaned at 7 1/2 months and it tore me apart. I've been lucky that my daughter has only had breast milk (so many awesome donors!). Nothing has worked for me.. I've done it all and I'm still lucky if I'm making 5-7 oz. But, I'll do it all again next time and hope for better.
    Congrats mama! Good job. :)

  3. Oh my word...I just read this with tears pouring down my face. Can somebody PLEASE TELL ME where/how I can get Domperidone? Is it Rx only or can I buy it online somewhere? I have tried EVERYTHING and even my midwife has given up on me. She doesn't "believe" that there is any reason a mom cannot nurse and is kinda blaming me for not doing enough things "right" to get it to happen. I have had a very good relationship with her to this point, but this kind of criticism is not doing anything for my self esteem or stress levels.

    1. FOUND IT!! Can't WAIT to get my shipment! Here's praying it works!

  4. Thank you for this. My story is so similar. I also suffer from PCOS, which affected my milk supply even further. It was heartbreaking the first, and second, and third, and so on, time that we had to give B formuĊ‚a. It still hurts 9 months on, but I've accepted it. We struggled with the SNS - next time I will work harder. Fortunately, here in the UK, I had domperidone prescribed by my GP.
    It is so helpful and encouraging to read of someone who has gone through what we have, though I would never wish it on anybody.
    Like you, I will bf B for as long as she will have me, though I do worry about supply if a second baby comes along. What we should always bear in mind though is the body's amazing ability - the act of breastfeeding can in itself cause more breast tissue to grow. A second baby could get more mummy milk than the first!
    Thank you again.

  5. Thank you for sharing your experiencie. sorry for my bad English I'm from Ecuador I am very sad because I failure in breastfeeding my children. I have tried everything taking a lot of water wearing my baby and I only produce 1 once each session. PLEASE tell me how do you take the domperidone wath is the dosage and frequency I have asked the pediatrician and my ginecologo and the only thing they said is that I have to put my baby at breast much of the time but it doesn't work. Please tell me about the domperidone