My PCOS Pregnancy and Breastfeeding Journey: I am Enough

This week is international breastfeeding week. A week I had never been aware of before. Now, just under 4 months after giving birth to my first child, I am so acutely aware of this week and all the emotions it brings up.

See I am firm believer in “breast is best.” I knew, if given the chance to have a child one day, there would be no doubt that child would be exclusively breastfed. I was told throughout my pregnancy, it might be tough at first, but it will get better. I was mentally prepared for some challenges, but I was going to make it work no matter what. I had no plan B. I did not get a pump. I did not get any type of supplementation. I stocked up on all the breastfeeding supplies and didn’t think about any other options.

Unfortunately, life had other plans. But first, before I share what our breastfeeding journey looks like, let me tell you a story.

Let’s start at the beginning. And I mean beginning, when I was just a young preteen girl, wondering why I looked so different from my friends. I started gaining weight for almost no reason, hair began to grow all over my body, and more embarrassingly, my one breast began to outgrow my other by almost two cup sizes. Unfortunately, back then no one thought something was really wrong, and doctors weren’t educated in identifying this developmental signs in teenagers (honestly, they still really aren’t able to). I was too embarrassed to really figure out what was wrong.

Fast forward to age 19. I have gone through high school with these struggles. Hated my body for being broken, but even more frustrated because I didn’t know what was wrong. I was fortunate enough to study abroad in England for my spring semester sophomore year. During our spring break, I was traveling through Europe with friends when I end up hospitalized for an incredibly painful, infected cyst in a very unpleasant area. Following the removal of said cyst, I was flown home to recover. During my surgical follow up with my new OB, she said to me point blank, “has anyone told you, you have polycystic ovarian syndrome.” Poly-what? No, I had not known this nor did I even know what that even meant. Through her brief overview, she explains that it is an endocrine disorder that cause an imbalance in your hormones. It can also cause your body to become insulin resistant, which is when your body is unable use insulin properly and it then builds up in your system. Being 19 and wanted to get back to my English boyfriend, I simply just said “ok” and didn’t think much about it. I assumed we could talk about it all out when I get back, since I was recovering well. 

When I returned to the USA, I began medical treatment to help with the PCOS symptoms I was placed on metformin (a common drug used to treat diabetes), birth control, and spironolactone (to help with aldosterone production). I was told my blood sugar levels showed I was pre-diabetic. I would need to go on a low carb diet with no more than 30 grams of carbohydrates a day, and I would have this disorder for the rest of my life. Yup, felt like the world was pulled out from under me. As I did my initial research I kept seeing over and over again that PCOS is one of the leading causes of infertility, though this was not something I was thinking about at that age, it always sat in the back of my mind.

Over the next 10 years I cycled between acceptance, rejection, depression, self-loathing, self-pity, and so much more in dealing with PCOS. After taking medication for about 5 years and seeing no improvement and really just feeling even crummier, I weaned myself off all medication, but the birth control. Shortly after I discovered the paleo lifestyle, I begin reading more about what I put in my body and how it can truly impact my disorder. I begin taking steps to better myself the right way. While I still don’t see significant weight loss, my blood sugar levels returned and stay at normal, and I start to feel better. In December of 2014, I took it one step further and begin working with a naturopath and started the autoimmune protocol in hopes to figure out the puzzle pieces.

June 2015

In August of 2015, we are shocked and surprised to find out, I was pregnant with our first child. Truthfully, I had only stopped birth control just a few months before, which I had done so to try and get my hormones working correctly on their own. As mentioned earlier, I had heard so often that infertility is one of the most common symptoms for those diagnosed with PCOS. At this state in my life, I had started to consider not having children. I kept using the excuse of wanting to get healthier, which was true, but mostly I was afraid of trying when it was very possible it couldn’t happen. I had seen many friends suffer through infertility and I just wasn’t sure I could handle it.

I wish I could say I was happy then, to have been able to conceive naturally, but in truth that was only the beginning. Due to the PCOS, my weight (a result of the PCOS), and body not knowing how to work properly (also because of PCOS), I was considered a high risk pregnancy. With everything single visit to the doctor, my heart would race and I would hold my breath with fear that there would be no heartbeat. Even after we made it passed the first trimester, that fear never faulted. Once passed the first trimester, more concerns arose.. The baby was not showing incredible growth, and

by my third trimester, I was going for weekly, then twice a week scans to monitor her activity. At 32 weeks I was told by the high risk doctor they would not allow me to continue passed 38 weeks and that if she had not arrived by then, I would have to be induced. They could not give us any real reason for what was wrong, but simple with her growth slowing and then stopping, they needed her out sooner to prevent anything more serious from happening to her.

On April 14, 2016 at 9am, despite my best attempts, we arrived at the hospital to begin my induction using pitocin. Though the pitocin did not exactly fit into my ideal birth plan (when does your birth plan ever go as it should), my amazing midwife, doula, and nurse allowed me to have a very meaningful, pain-medication free, hypno-birth. For once, something actually gone right in this whole pregnancy. There were no complications, no major causes for concerns, and within 16 hours from starting, we were able to meet beautiful baby girl. She was perfect and healthy and I was feeling elated. I had done it. I had proven so many wrong. I felt like I could breathe this huge sigh of relief. The worst was over. She was here and healthy, and it will only get better from here.

2 weeks old

Don’t get me wrong, I knew being a new mom with a newborn was not going to be a walk in the park. There is a big learning curve, and as I had been warned, breastfeeding, is something you have practice. We were able to leave the hospital the day after our daughter was born. She seemed to be doing ok, but did lose about 5% of her birth weight. As I have learned, this is very normal and nothing to be concerned about. We nursed as often as we could, and spent most of our time skin to skin.  We made arrangements with her pediatrician to go in on day 4 because we were going to stop in the day before for the free breastfeeding drop-in held at the hospital by the head lactation consultant.

As we arrived at that first drop-in, completely clueless, but ready to learn, we weighed our daughter. She had now dropped down by 12% of her birth weight. I immediately burst into tears. She was to be gaining back her weight at this point, not losing more. We stayed there with the LC for the next 3 hours working on her latch. It is cleared she has both a lip-tie and a tongue-tie. This meant she was not getting full mobility of her mouth. Additionally, she was acting very much like a pre-term baby (though technically born at term). This meant she had not developed her suction skills and would need some training. Phew, that was a lot to take in. Because we were unable to get a good latch due to her restrictions, I was going to need to pump to at least help build my supply. But, I didn’t have one, because I was oh so confident things were going work out. The wonderful LC gave me a free one she was given as a sample. We had spoken with her pediatrician and he agreed with the recommendations from the LC.

Tattered and torn, I picked myself up and went home to get to work. Just two hours after returning home from the drop-in, I knew something was wrong. It had been a few hours since she last ate. As advised by the LC, I tried to wake her. She wasn’t responsive. She was just a limp, sleeping baby. We tried everything to wake her up, but nothing worked. Not sure what to do, we called the pediatrician. He advised us to try and give her a little formula via syringe to see if that will jump start her, otherwise, we would need to go to the hospital. The dreaded “F-word”. My baby is only 4 days old and I was being told to give her formula. My milk hadn’t come in and I was only able to express drops. It was either formula or starve my child. In that moment I knew I needed to get her food. She woke up when the formula hit her system. I let out a breath I had been holding in for the last 2 hours. We weren’t in the clear, but at least she was responsive.

7 weeks old

Over the next several weeks, we did a combination of finger feeding, supplementing at the breast, and then eventually the bottle. Each and every day I cried. I cried because I worried about not giving her enough food. I cried because I should have been able to feed her with my body, but it wasn’t working. I cried because I constantly worried she was hungry. Her weight gain was struggling, my milk never seemed to come in and things were not going well. We did as instructed and nursed and nursed, but she always need more. She would scream when I brought her to me, and I would get so frustrated with her and myself and the process. We had to take a step back. The goal became, getting her to gain the weight she needed. Separately, I was working on increasing my supply. I hired a private lactation consultant. Renting a hospital grade pump and started on all the supplements I could get. I tried it all. I began to hate feedings and dread the one job I had, which was feed my baby. Something had to

change. My husband, who was a formula fed baby, kept saying that it would be fine and that some babies just are fed that way. I was heartbroken. How could this be?

It was just 2 weeks shy of our daughters two month check-up. I could see myself spiraling down. I was not eating, not sleeping, and beginning to doubt myself as a mother. One of the many symptoms of PCOS I know I have struggled with in the past was depression which meant I was at a higher risk of developing postpartum depression. I set a goal, we would give this all until 2 months. If she is not improving and neither was I, she would go to formula and we would just let it all go.

I woke up the next day determined to change my mind. I started looking for more answers. At this point we were able to fix/manage any problems on our daughters end. It was time for me to focus on myself and find out what was going. As her appetite grew, my supply never did. On a good day I was about to pump around 25% of her daily intake. Suddenly, one day, I found the answer through a mom Facebook group. First, I learned, I was not alone. This low supply was real.

IGT and IR. These two acronyms were the reason my body was unable to do what it should instinctually be able to do. IGT, insufficient glandular tissue. This occurs during the development stage of a young girl’s life or in pregnancy. There are several markers of IGT:

• widely spaced breasts (breasts are more than 1.5 inches apart)
• breast asymmetry (one breast is significantly larger than the other)
• presence of stretch marks on the breasts, in absence of breast growth, either during puberty or in pregnancy
• tubular breast shape (“empty sac” appearance)*

There it was in black and white. I was a text book case of IGT. It was even clearer this was a direct result of my developing PCOS at a young age. In addition IR, insulin resistance, shows its ugly head. When your body produces and overabundance of one hormone, it sets off an imbalance of all other hormones. When you breastfeed, you produce two hormones: prolactin and oxytocin. Since my body has an issue properly using the hormone insulin, it is constant battle to maintain proper balance. All this to say, it is clear my body is working against me once again.

14 weeks old

Alright, so what does this all mean? It means my ideal breastfeeding relationship is not going to happen, and never will. I pump ever 2-3 hours a day and get, at best, 25% of Emily’s needs. The remaining is made up of mostly formula with some donor milk we have been fortunate enough to receive. We comfort nurse a few times a day, when it works, if it doesn’t, we simply enjoy being mommy and baby.

What have I learned through this entire experience?

1. Never stop seeking answers to your health. There is a serious lack of research and support for under producing mothers. I recently read an article** that hit it right on the nose. The author wrote:

“If something was wrong with your liver, would you go to the doctor?”

“Yeah, of course,” I replied.

“OK, stop right there,” he said. “If you’ve got a breastfeeding problem and you go to the doctor, what’s going to happen?”

“Well, yes, I know,” I started. “If you’re lucky enough to have access to one of the few breastfeeding medicine doctors in the US, maybe they’ll order a couple of diagnostic tests. Otherwise, hopefully, you’ll be referred to a lactation consultant.”

2. Breast is best, but only if your breasts work. I was fortunate to have an incredibly support team around me that helped me catch on quickly. For a large percentage of women, nursing on demand will be the answer for weight gain and milk supply. BUT depraving a child of nutrition and nourishment can be just as damaging.

3. Surround yourself with the right team. If something isn’t right, and everything a provider is telling you to do isn’t working, then maybe it is time to change. I was recently speaking with the LC from the hospital (whom I still see weekly). She said to me, “if something isn’t working, you can’t try harder, you have to try something different.” This saving angel saw very quickly in me signs of PCOS, IR, and IGT. She saw that the advice she gives to a majority of moms was only going to get me so far. We changed tactics and approach. Make sure you are able to find someone who can work with you.

4. Just because your body has failed you, does not make you a failure. I have found this incredible community of mothers who have gone through many of the same struggles as me. They have taught me that regardless of how much or how little milk my little one gets from me, it all counts. Each and every drop contains the same amount of nutrients and antibodies.

5. Nursing is more than feeding. When a momma and baby nurse there is a unspoken bond and comfort that comes along with it, regardless of how much milk baby is able to remove from the milk or the amount of milk the mother’s breast is able to provide. This bond is something only you and your baby can experience. In fact, mothers how adopt using nursing as a way to create this bond.

6. Mourning is part of the process. Similar to when I was first diagnosed with PCOS, I had to go through a mourning period. I will never be able to have the breastfeeding relationship I had hoped to have with my child. It was ok to be upset and mourn this loss. When I allowed myself to get mad about it, about my body letting me down, I was then able to move on and move forward.

7. It is ok to stop. When I finally gave myself a deadline, a goal where if we made it to this day, then it would be ok to hang in the towel, I felt almost an immediate sigh of relief. We have made it passed that goal and have set another one, but when the times comes for me to hang up my pumping equipment and follow her nursing lead, it will be ok. 

I share this all with you today as a way to finally face the truth of our situation. There is nothing more I can do to change what cannot be changed. If sharing my story helps just one mom or identifies with just one person then fantastic. If no one bothers to read this entire post (it’s long I know), that is ok. This one is for me. This post it’s to remind myself of how far I have come and in those moments of jealous towards those who are so easily able to breastfeed, I can remind myself, that I am enough.
 

*source: http://kellymom.com/bf/got-milk/supply-worries/insufficient-glandular-tissue/

**source: http://www.huffingtonpost.com/jennifer-grayson/there-are-no-tests-the-st_b_11307426.html