Sunday, June 19, 2011

Low Milk Supply and PCOS and Other Woes

For those friends and family who read my blog, consider this your warning that you're about to learn more about me than maybe you wanted to know.

I've been so sad. So mad. So frustrated. Defeated.

PCOS (Poly Cystic Ovarian Syndrome) has struck again.

You see, just getting and staying pregnant with PCOS is a big accomplishment. For many women, its an awful, grueling, heartbreaking battle. Andy and I were so lucky. First, I knew I had PCOS before I even got married. Because of this I didn't have endure the typical year of trying to get pregnant on my own. Because my doctor knew beforehand, I was monitored from the get go. I was given Clomid when my test results showed anovluation. After one dose of 50 mg we got pregnant. I was given progesterone as a precautionary treatment as up to half of women with PCOS miscarry early on. I suffered no real morning sickness. Just an exaggerated bout of fatigue in part from the progesterone. Pregnancy was fairly easy. And the scooters at the grocery stores made it even easier.

Finally! I thought. This wasn't so bad, I thought. I started making plans for my child. He needed a cute room to live in. A blue room for a boy. A crib. Fancy diapers. Fancy stroller. I was going to be the best mom that ever was! I took all the classes. The baby 101 class. The lamaze class. (Then I ended up with a Cesarean due to a breech baby.) The breast feeding class. I took pages and pages of notes. I bought a pump, nursing pillows, books. I read about it daily. I talked about it daily. I was obsessed. I couldn't wait to nurse my child. I thought about the miracle of bringing life into the world. How my body was designed to birth a child and then nourish him. God has chose me to be a mother to His child. I prayed and prayed for a spectacular child. I promised to do my very best and prayed for God to show me His way. I felt honored. I knew so many who struggled far, far worse than I to get this far.

The day arrived where I finally got to meet my precious son, Adam Jones Dokulil. The love swelled in my heart that its a miracle it didn't explode out of my chest. I looked at this not so tiny newborn baby and promised all over again: To hell and back I would march for this gift. Nothing would ever be as important. Only my best would I give. I fell in love with my new family.

Then my milk came in.

The greatest pain I've ever felt. Far, far worse than my fresh and raw incision from the Caesarean. The nurses came in frequently to check on me and asked me about my incision. I would say it was completely fine. No pain. But my chest was excruciating. They smiled and said, that's normal. Seriously? I thought. This is normal? Ok. Well, I'll deal with it. I did my lamaze breathing as the lactation consultant massaged my breasts every few hours while I pumped. My child couldn't latch yet. So, it was up to the Medela Symphony hospital grade pump to provide me with some relief. Bruise after bruise formed on my chest from the deep massage. But to no avail. Very, very little milk was coming. We were sent home with our new baby, my gigantic breasts, and very little instruction.

The next day I desperately sought help from Milkworks. My lactation consultant (LC) took one look at me and told me I was severely engorged. Before we could even try to get Adam latched we had to get the engorgement down. Ice and cabbage leaves followed with lots of pumping and frustrating attempts to get Adam latched on. A far cry from the hot compresses they were putting on me in the hospital. My engorgement came down to what she considered a normal engorgement and the process of teaching Adam and myself how to nurse began. We clipped Adam's tongue thinking maybe he had a posterior frenulum. He'll latch right on afterwards, they said. No. He didn't.

I went through several nipple shields as we were learning. I cried and breathed deep breaths as he and I tried over and over again to latch. He clamped down on to the shield causing more bruising and bleeding and blistering. But I had promised. To hell and back I said.

This wasn't our only battle. He wasn't gaining weight despite the formula supplementing. Despite the pumping. He was refluxing the entire contents of his stomach several times daily. By the 9th week, we discovered he had a milk soy protein intolerance. (MSPI). I cut out all traces of dairy and soy. I scolded our pediatrician for making me feel like a panicked first time mom whose child dribbled a bit of milk down his chin on occasion. We put Adam on Zantac then Prevacid to protect his vulnerable tissue from the excessive reflux. We discussed surgery options if this became worse. The doctor yammered on about the importance of stuffing him full of food. He has to gain or a failure to thrive diagnosis would be made. I joined a support group. I forced every drop from my breasts and the bottles into Adam's mouth. I forced all those who fed Adam to do the same. We had dropped from the 85% at birth to the 10%. I found out Adam was also sensitive to peanuts, tree nuts, avocado and citrus. I religiously avoided all of it. My best would be all I would give.

We rented a scale and I pre and post weighed him at each nursing session to see how much he would take. Each day was like being in a 2nd grade math class. Adding ounce after to ounce to a feeding chart. Each day we concentrated on getting Adam to eat as much as we could. We still do. We were still using nipple shields but he was slowly learning. I was only having to offer formula once sometimes twice a day. I knew my supply wasn't great. I had accepted that I would never have a freezer full of milk like so many other moms I know.

I took herbs. I power pumped. I nursed more when I could stand it and felt brave. I prayed. I meditated. I continued with my LC for 12 weeks. I ate as much oatmeal as I could. I made lactation cookies every few days.

And finally one day. Adam latched. After 12 weeks. I slipped off the nipple shield during our nursing session and he went right back on. No pain. We did it! No more nipple shields. I could nurse so much easier now where ever I went. No pain. I looked forward to feeding my child. He loved it too. He could bounce on and off so easily. Our patience paid off. I was so proud of myself. So many would have given up. But I didn't. I promised. And I kept my promise. We made it! From here on out, it would be easy.

But it wasn't.

I will still using formula. Now 2 bottles a day. And the formula wasn't cheap. Because of his MSPI, we were having to use Neocate. Adam hated Neocate. And so did we. It was clumpy. It would get stuck in the nipple. It would frustrate me and everyone else who fed him to no end.

I knew Adam just wanted my milk. Oh how I wished I had enough milk for him. But I didn't. I had tried all the tricks. But this was the best my body could give. PCOS had struck again. Just when I thought we had made it! We had conceived. We had a successful first pregnancy. PCOS struck again and robbed me of my obsessive desire to exclusively nurse my child. For many weeks, I was able to provide 21 of the 28 ounces Adam needed to thrive. Then, for many weeks, I was able to provide 20 of the 27 ounces Adam demanded. Then 19. Then 18. Then 17. Then 16. Then 15. Then 14.

Today, Adam is 9 1/2 months old. He nurses like a rockstar. But only twice in the morning as there's too little of milk for him to get a full meal in the afternoon and evening. I'm able to give him 13 ounces of milk out of the 28 ounces he demands. Many of you might say, at least its 13. Yep. At least its 13. You're right. 13 is better than zero you might remind me. Yep. It is.

I don't know how much longer I'll get to nurse. How much longer my milk supply will hold out before it counts down like a rocket ship to nothing. Despite all those "tricks" to boost milk supply, when you have a hormonal imbalance like PCOS, you are ultimately at the mercy of your body. No amount of herbs, pumping or increased nursing is going to fill my freezer full of milk let alone satisfy my child's daily appetite. I often wonder what would happen to us if it was a few hundred years ago. Long before formula. I guess some other lucky mother would have to nurse my child.

When I think back to my plans to nurse Adam for at least two years as recommended by the World Health Organization, I feel like a failure. Is this the first time I've given every thing I have and lost? I just can't will my body to create more milk. You have more to offer your baby than your breast, they said. You did your best, they said. I wanted it all. I want so badly to wake up every single morning, pick up my child from his bed, brush his hair across his forehead, curl him up in my lap and stroke his cheek while he quietly nursed to his heart content. He is still then. He is quiet. He is my little baby growing up. He deserves the best. You'll find other quiet times, they said. Yep. I will.

I struggled last night with the reality that the privilege to nurse my child is coming to a close much sooner than I wanted. Much, much sooner. I'm taking Metformin now trying to wrangle PCOS under control. I'm using the hospital grade pump yet again. But its just a matter of time. Hopefully I can beg, barter, or steal 10 more weeks.


  1. I'm SO proud of you for all the hard work you've done. Your truly a wonderful mom to Adam. He's a lucky little guy!!

  2. awe, andy's comment made me tear up! how sweet was that?!

    to stick with it as long as you have, i commend you! you rock, i would have given up...not going to lie.

    praying for you that you get to squeeze out ten more weeks too!

    big hugs.