I recently stopped pumping breast milk for David. It was a very difficult decision, much more difficult than with Simon. Like everything else with David, breastfeeding has been something of an emotional roller-coaster (I gotta come up with another metaphor for that). Initially (the first couple weeks) I admit I was maybe a little arrogant about it, thinking that since nursing Simon had gone so well, that pumping milk for David would be a piece of cake, and I didn’t pump as often as they recommended, and wow, I was pretty much out of milk.
In the past, I may have had some slight jealousy issues over women who were thinner, prettier, but mostly thinner, than I. But nothing compares to the jealousy I felt when opening the freezer on the NICU and seeing how some women had dozens and dozens (and dozens) of little frozen cups of milk, and I hardly had anything. It was the first time I had felt such strong connections between (being a woman) + (being a mom) + (this unique gift only I can give my child). … I’ve never felt guilty, exactly, about David being born so early and having had so many health problems. I know everything is tied to his Down syndrome, including the reason he had to be delivered early. We did everything the doctors told us to do, which was basically nothing. I mean, if they had told me to jump up & down 25 times a night while wearing a blue striped shirt, I would’ve done it. But there was not really anything to be done, except monitor the baby and make a judgment call about when it was time to take him out … so no guilt, exactly, but there was certainly a general sense of inadequacy (again as a mom, a woman) that my body was not equipped to nourish my child in the womb, and now it was not making the milk he needed. It was not the greatest feeling. But Matt points out that at least I had the possibility of doing a little something – he didn’t have that chance. I would cite the excruciating stress of having a baby in the NICU as a contributing factor, and I’m pretty sure it was, but as I say there were other women in the same situation who were pumping by the gallon, evidently.
Thus began my quest to increase my supply. I tried two different herbs, Shatavari and Blessed Thistle. I ended up buying tinctures at some health food store in Asheville, rather than tablets. Supposedly, Shatavari is a Sanskrit word that translates to something like, “she who owns a hundred husbands,” and in addition to increasing milk supply it acts as an aphrodisiac. Let me tell you, if there’s one thing a mom, 2 weeks after delivering a baby who’s in intensive care is not interested in, it is an aphrodisiac. The Blessed Thistle does not have these magical powers, but it.tastes.awful. I mean, awful. I had to mix it in a little bit of Coke and then hold my hose while drinking it. Awful. Both of these herbs helped in a way I would describe as … minimal.
There is a third herbal option, fenugreek. I did not get around to trying it, since the others had not worked too well. The main side effect of using it is that mama tends to, after awhile, smell like maple syrup. Specifically, her sweat and her breast milk smell like maple syrup. And I was on the verge of trying it (I mean, really, there are worse things to smell like, I suppose) when one of the lactation consultants suggested Domperidone, an anti-nausea medication that is not approved by the FDA. I had to get it at Nature’s Pharmacy in Asheville, where they can compound it. Within a week, I was in business. It is not illegal or anything, it’s just not approved, so insurance doesn’t pay for it, and it’s not exactly free ($108 for a 30-day supply).
Wow, I finally felt truly like a mom – as if I was finally doing something for my child. And I know that’s not accurate, that of course all along we were visiting and holding David and talking to him and listening to the doctors and all that is important too, but I was so relieved that I was finally able to do this for my son. I was so excited that when I would get 3 or 4 ounces at once I would send Matt a text message with a picture of the full bottle.
There is supposedly another option, that of drinking a Guinness beer every day – its particular blend of hops is supposed to be helpful, and one beer a day is okay and won’t hurt the baby. Great, except, oh right, Guinness beer tastes like … well, let’s just say I tried it once and decided that even the great gift of mother’s milk was not worth it. … when your NICU nurse is talking with you about milk supply and she begins the conversation with the question, “do you like beer?” you know you have likely found yourself the right NICU nurse.
Since we got home from the NICU, I have pumped less and less often. For some reason, I just couldn’t make it a priority. I suppose “for some reason” is a cop-out, since the reasons would well include: me returning to work, Matt returning to work, David’s medication schedule, David’s heart surgery, Simon’s daycare schedule. Plus I am worn down to a little nub from all the mental energy and planning that pumping requires – not just being immobilized by the pump for 15 minutes at a time, but making sure I had all the pump parts, washing/drying/assembling/transporting all the parts, an insulated lunch bag, enough ice packs, enough storage containers, enough labels with my name, knowing I didn’t have to make a stop along the way to the hospital such that the frozen milk might start to thaw … it’s a lot to keep track of. Then there was the day our refrigerator/freezer started to go out at home. I called neighbors in a panic – there was no way I could lose any of that milk, and fortunately they were able to help (once frozen milk is thawed it has to be used within 24 hours and is not supposed to be re-frozen).
I have tried nursing David several times. Babies with Down syndrome and a heart problem often have difficulty nursing – it’s harder work than drinking from a bottle, and with his heart problem he got tuckered out so easily. Then, the day before his heart surgery, I just spontaneously nursed him while we were waiting to meet with one of the doctors, and it was so great – he latched right on and I think he got a good amount. That’s one of the things that made me believe he was going to be okay during the surgery – I thought, we just got started on this whole breastfeeding thing, we have so much more to do. The night before the surgery, he was allowed to have breast milk up until 3:00 a.m., so I tried again. He didn’t make any progress that time, and I didn’t pressure him or let myself stress out about it – I just wanted to snuggle with him and feel close to him that way, and we got to snuggle anyway, nursing or no nursing.
I don’t know how many people are aware of this, but Matt and I were pretty well convinced that David would not live through his heart surgery. The chances of that happening were quite small, but on the day before the surgery, they seemed huge to us. So I was so glad that I got to nurse him, at least that one time. And I did intend to pump frequently and build my supply up to what it had been at its peak, while I was on leave after the surgery. But once again life sort of got in the way – David has this whole new medication regimen, and stuff we had to do differently for his feedings. And since he aspirated on some milk in the hospital, we had to add this thickening agent to all his milk so he couldn’t nurse directly anyway. And when I would think, “oh, it’s time to pump,” it was so easy to say, “oh, I’ll do it in a minute, I’ll do it in a minute,” and before I know it, three hours had passed. So my supply dropped again and I decided to just quit.
Except I didn’t really want to quit. When Simon reached his first birthday, weaning was pretty easy, both physically and mentally. He was ready to drink from a bottle and sippy cup, and although I know he enjoyed the closeness of nursing, he was on the verge of walking, and appeared to take off and never look back. I thought I would be an emotional wreck, but it wasn’t too bad – it was just the right time for both of us.
But not this time. It was easier to stop with Simon, ‘cause everything was more clear-cut with Simon. He was perfectly healthy, he’d gotten the benefits of breast milk for a year, and he and I had gotten to enjoy that closeness, about 1.5 million times. I was confident that I had accomplished what I needed to do. But with David, nothing is certain. I regret that pumping didn’t go more smoothly from the get-go, that I didn’t pump more diligently all along the way, and that I didn’t give nursing more of a chance. The night I decided to call it quits, I cried all evening and changed my mind a number of times. Then when I realized the last time I pumped I didn’t know it was the last time, I decided to try once more. I said a prayer, I can’t remember what it was exactly, but I think it was something about praying for guidance for all the other ways my son needs me, and for me (and Matt) to remember all the other things we have to give.
Part of what made the decision so difficult is that this could be the last time I breastfeed a baby, ever. Matt and I have not made a final (i.e. anything that involves snipping) decision about having more children. And I am packing my maternity clothes away, not giving them away. There are two types of Down syndrome – one involves one of the parents basically being a carrier, and the chances of having another baby with Down syndrome would be between 1 in 8 and 1 in 10, depending on which parent it is. But ours is the other type, that is just (“just,” ha ha) a random occurrence, and our chance of having another baby with Down syndrome is about 1 in 100, at least until I turn 40, then the chances go up. The chances of another baby being born prematurely are higher and it would be considered a high-risk pregnancy (everyone assumes the umbilical cord blood flow issue is related to his Down syndrome, but I don’t think there’s any way to know for sure – sometimes people have random problems with the placenta or cord). Right this second, there’s no way I could go through another pregnancy, no matter what the outcome. We are exhausted and pretty much at our limit, coping-wise, still getting used to everything that is involved with life with Mr. David. But I had always kind of thought we would have three children … and I realize that at some point I will nurse my last baby – whether that happened for the last time the day before David’s surgery, or if it’s a couple of years down the road. And no matter when it happens it will be a tough choice. But …
We have discussed adoption and foster care; as a former child welfare social worker I know pretty well how much dedicated parents are needed. That's definitely still on the table, but not for the immediate future. I suppose a lot of this essay seems to be more about me and what I want rather than David and what he needs. But I think mama and baby’s needs are pretty well tied together on this particular issue.
As Matt says, the breastfeeding debacle is indicative of the whole David experience, thus far: I’m not sure what’s the best thing to do, comparisons to Simon’s situation are useless and unfair, and no matter what we decide or do it’s going to feel as though we didn’t do enough. Little Dude has tried to show us at every step of the way that he is not his big brother, and if we would pay attention and listen to him, we might stop wasting so much time??
