From Oversupply Donor to Supplementer

Due to a side effect of a medication I am on, I have lost the majority of my milk supply.  At 19 months nursing my son, this should come as a welcomed relief; I get to bypass the struggles of engorgement  that accompanies weaning, and just enjoy my toddler.  Many would say “wow still nursing at 19 months, that’s more than long enough.”   According the AAP and WHO (American Academy of Pediatrics, and the World Health Organization) “exclusive breastfeeding is recommended up to 6 months of age, with continued breastfeeding along with appropriate complementary foods up to two years of age or beyond,” so 19 months is well into that time frame.  I know that “every drop counts.” I know I have nourished not only my son, but several others, with the liquid manna from my breasts, {http://codenamemama.com/2013/07/31/oversupply-milk-sharing/} but that doesn’t make this end any easier.  I followed baby lead weaning I let my son decide when he wanted food.  He didn’t have any interest until 10 months, at 12 months it was maybe a bite a week, at 14 months it was an asparagus stock, at 15 months one whole chicken nugget (to this day that is still a lot for him), at 19 months he is still, at least, 50% breastfed.   With my oversupply issues this shouldn’t be a problem, heck he should be thriving…

 At 10 months old my son was 90% in both height and weight.  He weighed 23 pounds, he was all cute rolls, and chubbiness, all caused by my awesome milk.  That is also the month he learned how to walk.  The fat started melting off; I was told not to worry, since that always happens when walking starts.  At his 11.5 months he had an ear infection he was 22.5 pounds, but that was okay, nothing to worry about yet.  At his 12 month check-up a few weeks later, exactly the same weight. At his 14 month check-up still the same, at this time the pediatrician is concerned.  He tells us to try to stretch out the times between offering breast, so that we can offer food and see if he takes it since, “hunger is a powerful thing.”  We have always let our son decide when, where, and how much, “Daaahhhddie,” (how he says boobie) he wants.  I felt this was counterproductive to the whole “he isn’t gaining weight,” since it is the only thing he will eat.  I would offer a cup of milk, with carnation (yes nestle I know evil… you have a starving child and tell me not to buy it) next to the breast and let him sit on my lap and see if he takes it.  One time he chose it over the breast (I hated that cup in that moment), but at least he was taking something.    We had already researched ways to get weight on our now 90% height 30% weight son, and pediasure came up as a recommendation time, and time again.  We hadn’t bought it since we try to avoid refined foods, and there is nothing found in nature in one of those bottles.  My parents, very well meaning bought pediasure- my son loved it; he drank a whole 3 ounces at one time (more than any amount of anything in his life).   We saved pediasure as something at Grandma and Grandpa’s house, as a special treat when they baby sat.  Then the day came, 18 month well child check, my son had been going monthly to get weight checks, still no weight gain; if anything it was a weight loss- 34 inches tall, 22 pounds.  I felt betrayed by the scale.  I felt a failure as a mother.  I didn’t know what to do, my son refuses to eat, and I am giving him all I can.  I know I have started a medication that can dry me up, fortunately it hadn’t yet, but it was the only food he would eat, and it was possibly going away, what am I to do? 

We sit in the smaller waiting room, ahem, exam room, and wait for the doctor.  We know what is coming, the dreaded “failure to thrive.” The three words that have done more to hurt breastfeeding than any other- it is often misdiagnosed since breastfed babies grow at different rates then formula babies.   I wish that was the case for my son, I brought the WHO growth cart for breastfed boys with me, to see how the numbers lined up with that chart, but with zero change it was still a concern.  My son’s Doctor said, “If he was changing at all we would not be worried, but if anything he is going down. He doesn’t act, or look, like a sick kid, but we still need to check to see if everything is okay.”  Rewind to my son being two weeks old, his second newborn screen came back with “abnormalities.”  We had to go in at 3 weeks to get a follow-up newborn screen, the worrisome numbers were in the normal range, but the number that were out of range were barely out, and the numbers that were in were barely in.  We decided to watch for issues down the road.  Fast forward to the present, those “abnormalities,” were looking like a possible issue now. 

We had our prescription to go to the local Children’s Hospital, and get several tests done.   There were tests that were only performed a few times a day, and in a special lab.  The scariest was the Sweat Chloride, that is not something you want to Google in the middle of the night.  It is the test for cystic fibrosis, really something you don’t want to learn about from Google.   I was up the whole night between the 18 month appointment, and the hospital visit the next day. ​ I was praying, crying, and all around scared.  We brought our son to the hospital, and hope for the best.   The sweat chloride had my son in tears; he hated the electrodes on his arms.   He was wrapped up in hot pads, and a thermal blanket, we went outside (it was over 100° F), and waited for the clock to say to return to the lab.  There wasn’t enough sweat, we had to do the test again the following day.  Before we could go, my son had vials of blood taken, and we were given a cup to collect urine to bring back the next day.  (Proud mom moment, my son has been potty trained for a while so all I did was tell him to pee in the cup and he did.)  Think the test was bad without knowing what it was, wait till you know your child will be suffering, and you have to make them go through it again.  We brought a snowsuit, lots of water, watermelon, breastmilk, and anything else we could think to keep our son hydrated, because we were going to ensure he sweat enough.  There we were, hooked up to the electrodes again; you can see the betrayal in my son’s eyes.   We were explaining that it will be over soon.  We put the hot pads on, the snowsuit, the thermal blanket, and we went out to the car.  Now being in the car in the summer is about the most dangerous thing you could do, I BEG of you to never leave your child in the car, even for a minute if you still don’t believe me watch this video http://youtu.be/XNDWN8KDVSM it made me bawl, and I saw it after what I am about to describe.   Now we were in the car with our son, he was in my lap, I had water and watermelon, I was prepared to take him into the hospital, whose parking lot we were in, at the first sign of any distress, and yet I was still scared.  We had the timer to tell us when 15 minutes were up, we had my son’s favorite show on Netflix (Jake and the Neverland Pirates, crack for baby boys).  My son rarely drinks more than an ounce, he drank 10 ounces of water, he ate 8 slices of watermelon, he was dripping in sweat, and my husband and I were dripping in sweat.   My son curled up on the breast and downed milk.   It was the longest 15 minutes of my life.  We carried our snowsuited, thermal blanketed, baby back into the hospital; by the way it was 100° again that day, we have never had stranger looks given to us.  The whispers of “oh that poor baby I wonder what is wrong with him,” followed us.  A resident who shared the elevator with us actually commented, we explained we were doing a sweat chloride, a look of pity crossed his face as he said, “I hope the test goes well.”  We were done with all of our tests. 

My mother who works at the same clinic that our Pediatrician is located in gave us the test results a few hours after they were done, all normal.   Woohoo you say?  Awesome you say?  Well what the hell is going on with my kid!  All goods, are as devastating as a positive.   Why isn’t he gaining weight? 

​We have started giving him refined foods in the hopes that he will eat, no good, he has chosen apples over cookies so many times. (Still proud Mama Moments) We start giving a pediasure every day.   He progressively eats more solid food, if two bites of chicken and stealing apples counts.  I am still concerned but there is still hope, my milk is still producing well and he still nurses on demand.  Then it happened, the medication I am on had its side-effect, I nearly dried up overnight.   If he was still 50% food, 50% breastmilk it would be enough, but he wants more milk then I am making.  My pediatrician said I could get a prescription for pediasure.  I have good insurance, so it will save a lot of money getting it from the pharmacy.  Two days ago I broke down and called for the prescription, it is only available in powder form, I am devastated as I have to make the choice so many others have to make, giving a chemical to my child so that they get nourishment. I have told mothers who have made the same choice that they did all they could, and that they are great mothers.  I know I am making the right choice for my son, but it is devastating all the same.  Today I am going to pick up a canister and feed it to my child, I will die a little inside.  I still can nurse some.  I can give my son formula.  I can give my son food.  Our journey hasn't ended, just changed.