I have asked my friend, Joanna, to share her journey with providing breast milk to her son, Isaiah because I think the symbolism of control is one that all preemie parents will understand. Also, I love how she openly discusses the trade offs of the decisions that all parents face. Her efforts were truly heroic and as you see how hard she worked for her liquid gold, you’ll understand all the more why it was so loving and generous of her to share some of her milk with Owen when he needed it most. For her selfless gift to Owen, she was featured as the August Hero of the Month. Thank you, Joanna, for your inspiring and honest story.
There were two things I knew for sure when I was pregnant; I was going to have a natural delivery and I knew I was going to breastfeed until my child self-weaned. When I went to the hospital at midnight on the day I was 29 weeks pregnant, I did end up getting one of those two things right. I had an unmedicated delivery that very evening, because the hospital didn’t realize I was in labor until they could feel a head. (That’s a whole separate story though!) My dreams of snuggling my baby and breastfeeding at birth were soon replaced with watching them try to intubate my son and get him breathing and stable enough for transfer to a hospital that could handle his critical care. Thanks to a good nurse, four hours later, I was being driven to the hospital where my 2 lb 11oz son, Isaiah, was in the NICU fighting to live after 2, 2 and 2 APGARs.
Walking into the NICU to see my son for the first time since the brief kiss goodbye, the last thing I was thinking of was breastfeeding. In fact, it was almost 24 hours later, before a lactation consultant arrived in my room with the awkward yellow contraption that would soon be my most hated best friend. The first pump, I believe, I got 5 mL total. It was hard to keep such a strict pumping schedule of every three hours, and eventually every two hours, around the clock but I told myself, if I was breastfeeding and he was home, I would have been up just as often.
Each day, as my son struggled to breathe and grow, I struggled to pump more liquid gold. When he finally got to have a few precious mLs in his Nasal Gastric (NG) tube, and was able to digest it, my heart filled with joy. I was getting an average of two ounces each pump, which didn’t feel like much when I’d see other Momma’s bringing in two or three full eighty ml bottles after a pumping session. Yet, my two ounces were way more than his little body could handle at that point, and I continued on my pumping schedule and began to build a small store in the freezer. As Isaiah’s NICU journey continued, we took our steps forward and then back. Pumping felt like the only thing I could control. I couldn’t regulate his breathing or his heart rate, but I could give him something I felt would help him grow.
As is typical with extreme preemies, at some point human milk fortifier (hmf) was added to my breast milk for extra calories. Formula, even as a fortifier, had not been in my plan, but neither had having a baby 11 weeks early. The ultimate compliment was when his nurses would comment on how hard it was to mix the hmf with my creamy (read: fatty! Yay!) breast milk and then Isaiah gained a pound (of good weight) in one week around two months actual age. His weight gain was all I needed to convince the doctors that he didn’t need to be fortified and they agreed to give it a try. Getting him off formula was a big boost to keeping up my pumping schedule. Small wins were important to keeping me on pace to achieving my goal; giving Isaiah breast milk until he’s ready for whole milk.
Around that same time, I was first allowed to try to breastfeed Isaiah. It was a very frustrating experience and not at all how I expected. Not only was he overwhelmed, but he just didn’t have the strength to suck hard enough the few times he was able to latch. It made me sad to see him work so hard, to only see a two mL gain on the scale after twenty minutes of sucking. Then, when I would just want to kangaroo with him, I’d have to put him back in his crib long enough to pump, so I wouldn’t lose the small progress I had made in my supply. Eventually, after a small breakdown with one of his core nurses, I decided to work more on breastfeeding later at home and concentrate on pumping, and bottling while in the NICU. It relieved some pressure on me and Isaiah and I could still comfort myself with the fact that he was getting my milk. Pumping was still the one place I felt in control. I couldn’t get him to coordinate breastfeeding, but I could still provide the milk.
After 83 days, we finally heard the ‘H’ word. What I expected to be pure bliss was also a set of new challenges. At home the struggle with pumping became even harder. Waking up to feed a baby, who much preferred to be on his own schedule and not a NICU dictated one, then pumping, cleaning pump parts and trying to still get the sleep needed to keep my supply was comparable to a tightrope walk. Get enough sleep, get enough pumping, get enough water and don’t forget being the main caregiver to a medically fragile newborn. It was a difficult balance; I was determined to not lose control.
Eventually, I did get a routine that made it slightly easier, especially when I figured out a way to pump, both sides, and bottle feed Isaiah, simultaneously. Even still, most days, I was too overwhelmed to try to bring him to breast, and when I did and he screamed in frustration; I gave up. Could he have figured it out if I had devoted more time to it? Possibly. Some preemies do. Honestly though, most days, it was hard enough to just keep pumping. I already wasn’t getting my dream of breastfeeding until he self-weaned. I had to keep my focus on reaching his milestone of transitioning to whole milk.
One might think, my supply would have increased from those earliest days in the NICU with my continued strict pumping routine. However, even with pumping seven or eight times a day, I was only making an average of sixteen ounces. Isaiah has never been a big eater, and often his daily average intake was the same. On his better eating days he would drink as much as twenty ounces and I’d have to dig into that small stash remaining from the NICU. I sometimes wondered if it was okay for Isaiah to eat so little. Like most moms, I couldn’t help but compare. I knew his volume was a lot less than many others and he is small, even compared to his preemie peers, but his doctor was always ok with Isaiah’s size since he kept to his growth curve. Admittedly, I never pressed the issue, because I really didn’t want to supplement with formula. To me, it was not an issue of formula being bad, it was that I knew if I had to supplement, it would be hard to find the reason to keep going with the pumping.
As we approached Isaiah’s first birthday, it was clear he would either need to stay on breast milk, whether freshly pumped or frozen, until at least one adjusted. At that point, I did start giving myself a little leeway, and slowly cut out the middle of the night pump. Unfortunately, even pumping six or seven times during the day wasn’t enough to maintain the same supply. I was quickly down to about twelve ounces a day. As a result, Isaiah began getting a combo of fresh and frozen. Just after thirteen months, or ten and a half corrected, I had reached a point of fatigue and had a little breakdown with Isaiah’s doctor. She assured me that I had done a great job and it was ok to stop pumping. She made it clear, that with Isaiah’s continued slow weight gain, he was still going to need formula well after his adjusted birthday. As I saw my goal of exclusively using breast milk until he was ready for whole milk slipping further away, I slowly came to terms with not meeting my goal. Even still, I couldn’t stop pumping cold turkey. Given my supply it probably wouldn’t have been painful but I wasn’t ready to completely walk away from pumping yet. At first, I went from six pumps to three. Those first couple days, my supply didn’t take much of a hit and I had a little hope that I could keep up that schedule. That hope faded fast, it was not much longer before I was making only 6 ounces or less in those three pumps. The supply in the freezer was dwindling fast and with just weeks to go before his adjusted birthday, I finally stopped pumping altogether.
What I felt after stopping surprised me; the freedom was exhilarating!!
I am really proud of the milk I was able to give my son and I believe it was the best thing I could do for him. At the same time, I can’t say it didn’t come without consequences. Before his birth, I was the nanny who didn’t believe in letting kids watch TV. I quickly became the mom who plopped her son in the bouncer, and then the exersaucer, in front of Mickey Mouse Clubhouse, just to be able to pump. I had been so exhausted all the time. In hindsight, I think it was more mental than physical exhaustion. I hadn’t realized how much I was missing out on by constantly being connected to a machine instead of my son. Suddenly, I could take Isaiah for walks without worrying about when to be back to pump. As he became mobile, I was able to play with him and chase after him on the floor. By no longer doing the one thing that I always felt was most important, I was able to, in other ways, enjoy parenting so much more. Looking back now, I’m not sure why it was so important to get to that goal. To prove a point, to myself? Family? I always had plenty of supportive people to lean on if I had decided to stop. Did I make the right decision?
Let me be clear, providing breast milk was important to Isaiah, and I don’t regret that decision in any way. Isaiah didn’t get his first cold until his birthday party; I’d like to think my breast milk had a little something to do with that. But, the length of time that I pumped will always be a small “what if” for me.
Would I have felt like I spent more time with Isaiah if I had quit earlier? Maybe, but a dear friend pointed out recently that there would have been other things demanding my attention that I could still look back on and feel had kept me from spending as much time with him as I’d have liked.
Would he have grown bigger, faster? Again, maybe, but as slow as it may be, his doctors are happy with his growth and he’s making great developmental strides.
In the end, I can’t say I made the right or wrong decision. I only know I made the decision that worked for me and Isaiah.
By the way, it turned out that I did have enough frozen breast milk to make it to his adjusted birthday. I still struggled with the idea of needing formula after all my pumping, but Isaiah solved that dilemma. He refused to drink even 10 mL and shivered like it was torture, but he gladly sucked down enough whole milk to keep growing. So in the end, even when I thought I gave up early, I did reach my goal. It wasn’t easy, but I know I’m doing my best as Isaiah’s mom.
Joanna, Rich and Isaiah