Sarah’s Story

I had a normal pregnancy and conceived on the first real attempt, but also had extreme nausea throughout. I was never diagnosed with hyperemesis gravidarum (HG), but I was on Phenergan and taking the max dose, which causes blurry vision, until the third trimester. My endocrinologist suspects that was related to a thyroid spike in pregnancy we were unaware of.

My labor started at 40+2 and seemed normal, though I was dehydrated and vomiting from pain and they thought it was still prodromal, despite contractions that came every two minutes and didn't go away after fluids. I received a bag of IV fluids, and they were going to send me home when suddenly my placenta abrupted and I was rushed to the ER and put under general anesthesia.

Here's where it gets fun! I lost 800 ml of blood, and my daughter’s cord was 4x nuchal. Their best guess is that a contraction actually pulled the cord so hard that it physically pulled the placenta off. My daughter had three Apgar scores of 0 (at 0 minutes, 5 minutes and 15 minutes). It took 20 minutes to bring her back earthside, but that's a whole other story and she's totally fine now!

I was 100% confident in my ability to create a full supply despite my baby being in the NICU. Despite pumping seven to eight times per day, which the hospital LCs said was the minimum, I was wrong. Baby wasn't allowed to latch until Day 5, though she was a strong nurser and seemed to have a good latch (though her upper lip tucked in, stay tuned...).

I was producing around an ounce per feed at that point but had no engorgement at any point. We came home from the NICU on Day 10. The hospital gave me the okay to try exclusively breast feed though some supplementation had been needed to get her sugars good enough for release. She didn't really lose weight when we got home, but based on our bathroom scale, she wasn't gaining either for about two weeks. Our pediatrician did a bad weighted feed (changed her wet diaper before the second weight, she still got an ounce) and told us to start supplementing two ounces per feed and triple feeding. The amount of supplement eventually became 16 to 20 ounces per day. I couldn't keep the pumping up because she was latched constantly between bottles (but gaining fast, now).

I ordered domperidone from overseas and started taking it. I never saw a dramatic increase, though. After several more weeks (I was about 10 weeks postpartum at this point) of sore/lipstick nipples, I hired an IBCLC to check us out. Of course, baby refused to nurse well and we couldn't get an accurate weighted feed, and she wouldn't open her mouth to check for ties. Based on her latch and transfer, the IBCLC thought she was probably okay, and recommended I get my thyroid checked. We also started using an SNS at this point.

However, I was still suspicious and got an appointment with a preferred provider. With the IBCLC's support, I got my daughter’s lip and posterior ties released at 14 weeks. Around the same time, my wisdom teeth decided to freak out and I had to have them surgically removed at three months postpartum. Basic testing confirmed hyperthyroidism and I was referred to an endocrinologist. It turned out to be postpartum thyroiditis that settled out to "clinically normal" around six months postpartum. I haven't had it checked since, but I suspect mild hypothyroidism based on the last numbers. A low dose of levothyroxine boosts me into miserable hyperthyroid territory though, so I'm currently leaving it alone.

 

I didn't know about insulin resistance when I was seeing the endocrinologist, so that mystery factor remains uninvestigated. At the same time my thyroid was doing its thing, my gallbladder started going haywire, so I had to have that removed around six months postpartum. Gallbladder attacks were worse than labor (0/10, do not recommend!). Despite all this, we had managed to get the supplement donor milk down to about half her intake by 5 months. I have no idea what my maximum production was though because she didn't cooperate with weighted feeds and she latched all day. Her weight gain stayed steady and good, though she's a tiny one! She has maxed out around the 2nd to 3rd percentile, but her pediatrician is happy with that.

At 12 months, we switched to sippy cups and nursing. She decided she didn't want milk out of a cup and her weight gain was steady, so we stopped supplementing and I finally felt like enough. I weaned off domperidone (quickly dropped the 15 retained pounds), but my supply stayed relatively stable. She's 2.5 years now and is still a total boobie monster. Twelve months was my goal, but once you work this hard, it's so much harder to let go, and now I'm letting her self-wean.

Before getting pregnant, I was an advocate for natural birth and breastfeeding (so much easier when you haven't done it!) and had worked as a midwife's assistant for a time. I now have a more balanced approach because fetal monitoring and being in the hospital at the right time saved both my and my daughter's lives. But most of all, I support informed, well-rounded decisions about birthing and breastfeeding (as it should be)!

Joining the IGT and Low Milk Supply Support Group brought me so much comfort. I unfollowed and/or left every other group. My supply and feeding strategy were already settled by the time I joined, but everyone there made me feel so much more supported and comforted and have helped me work through my PTSD about birth and breastfeeding (as much or more than my therapist!). So many parents like me are just floundering for answers, and we need more support from our providers and peers.

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“So many parents like me are just floundering for answers, and we need more support from our providers and peers.”

— Sarah Cooper

How old was your baby when you realized you had low milk supply? What concerns led you to learn this?

I realized it wasn't getting better when she was about two weeks old, because we came home from the hospital and she was either latched constantly, sleeping or crying.

What were some of your goals when you first started your breastfeeding journey? How did these goals shift throughout the time you were lactating?

I wanted to exclusively breastfeed – nurse for a year, and then be done. As we went along, my goals changed to reducing supplement as much as I could while also balancing my own needs and keeping her at the breast. If she hadn't taken to nursing with an SNS, I probably would have stopped much earlier. Now that she's older, I'm ready to stop, but she isn't yet and I'm not going to push it.

What advice were you given, if any, to increase your supply? By whom?

The pediatrician told me to triple feed. A lactation consultant told me to eat ice cream for breakfast if that made me happy. A family friend gave me a recipe for barley water, which I made and drank. None of it helped.

Did you feel supported by your medical providers? Why or why not?

My endocrinologist was supportive and willing to work with me, but unfortunately lacked knowledge about how thyroid and insulin conditions can impact milk supply.

What is one thing that you wish someone would have told you when you began your low milk supply journey?

It's not your fault. Here's how to figure out how much your baby needs, and let's do some blood work to figure this out together.

 

Did you feel prepared for the possibility of low milk supply? Why or why not?

No, because I was pretty immersed in "crunchy" mama culture.

What is one thing that you would like all medical and lactation professionals to know about chronic low milk supply?

That hormones aren't magical or super mysterious, and that they impact many bodily functions.

What is one thing about your low milk supply experience that makes you proud?

My commitment to keep going has brought my daughter and me a lot of comfort and connection. I'm glad I didn't stop when it got frustrating.