Deb. Preemie Mums in the NICU need real support and real encouragement

Deb and Becky in the NICU

Deb and Becky in the NICU

Deb Discenza is the Founder of PreemieWorld, created to help bridge the gap between parent and professional in the NICU, at home and beyond.  With books, videos, and other products and tools, Deb and PreemieWorld hope to make everyone’s life just a little bit easier as the “new normal” is created in the life of the preemie and his/her family.

My daughter was born 10 weeks early (30 weeks gestation) and I suddenly found myself staring at my daughter through the portholes of an incubator.  My parenting experience to date was nil, as Becky was my first child, my only pregnancy.  As I recalled my concerns a month prior to my OB that I was worried this baby was coming early and she laughed and said I would be late, I swallowed very hard as the monitors beeped and I jumped a mile high and screamed to the nurses.

To say I felt inept is putting it mildly.  Scrubbing up, putting on a gown, a mask, and being allowed to touch my own daughter through the barriers of the medical equipment and the careful eyes of the nursing staff was extremely unnerving.  Yet I pushed through to try and do what I could.  I’ll admit it – I wanted to run, I wanted to hide, I wanted to wake up from this nightmare.  I felt like I had failed my daughter despite my concerns to the OB.

As I was wheeled back to my postpartum room to “rest” I sat up in bed, numbly staring at the walls.  My eyes glanced at what I believed to be a breast pump and I asked my husband to bring it over.  I figured, I should try to pump if I could.  No one had even brought up the subject to me, but I believed that if it was doable, I should do it.  After monkeying with the parts and turning on the pump and pumping away for a bit, I looked at the result in the receptacles. Each item held a small amount of yellowish liquid.  I told my husband to go ask the nurse if this was even usable or if it should be thrown out. A few minutes later he came back into our room grinning from ear to ear, “She is running down to the NICU right now, saying that you did great, that you produced Liquid Gold.”  I was stunned but pleased and resolved to keep going with the pumping even though no one had bothered to approach me about it, let alone train me.

The NICU set up me up with vials to collect the breastmilk and I began a routine prior to going home and then at home.  I often found myself trying to sort out issues and seeking the help of the hospital lactation consultants when I was going to visit my daughter in the NICU.  I kept pumping and managed to produce a sufficient amount of milk in that we had to buy a stand alone freezer for our house.  I was proud of myself for persisting.

Fast forward to a couple of weeks into the NICU stay, and a nurse suggesting that I try breastfeeding.  I did so and the nurse put my daughter to my breast and then walked away busy with other patients.  My daughter was not very eager, her suck was quite weak.  Yet I didn’t know that at the time, I just assumed she was not interested.  So I handed my daughter back at the end of the stay and told the nurse that I would just keep pumping.  And I pumped.  And I pumped.  And I pumped.

One odd moment happened during all of this was when our area was threatened and struck by Hurricane Isabel.  As the storm brewed and I pumped, I was praying that I could finish my session before any electrical outages occurred.  I was mid-way through the session and the lights went out.  I looked up at the darkened ceiling of our bedroom and shouted, “Oh no you don’t!”  Magically the lights came right on and stayed on not only through the storm itself but in the aftermath that created days worth of outages across our region.  My husband was in awe and full of humor noted, “God fears a lactating mother!”  I laughed but I was beyond grateful that the electricity remained on. The idea of manually pumping milk terrified me because I felt I wouldn’t be as diligent as I was with an electric pump.

Toward the end of the stay, one of the nurses I had not had before decided to give me grief about not directly breastfeeding my daughter.  I was instantly on the defense giving excuses but also just not able to think out this demand clearly enough to respond properly and cited that I had already returned to work.   She hammered away me along with another nurse, telling me that they had breastfed their babies while working (my afterthought was – and did you have a preemie?  Did you have a fragile baby with feeding issues, breathing issues and more?  I suspect not!).  And then came the “baby is at risk for ongoing infection without breastfeeding” (my afterthought to this was “How is pumping not deemed breastfeeding?  I am trying my hardest here on my own without proper support.  Quickly another mother in the unit came up beside me and told me it was okay and the nurses backed off.  I was embarrassed.  And I was furious.  How dare they act so haughty with me when I was the one that started the pumping, that pushed through barriers, that was providing my daughter with breastmilk.   When I got home with Becky I did try breastfeeding several times.  It didn’t work at all.  Becky ended up back in the hospital with feeding issues and more.  I gave up the idea of breastfeeding from the breast and kept pumping for a total of 3 months.

It was interesting that a year later I was in that same NICU supporting families during the Christmas holiday.  The nurse who had helped me initially try to breastfeed Becky was there.  I walked up to her and told her my sad tale that I had not been able to breastfeed in the end and that I felt horrible and guilty because of the other nurses’ guilt trips.  She looked at me and said, “I wouldn’t have been able to do what you did, had I been in your shoes.  I don’t know how mothers are able to even do it.  You did great, know that.”  That helped beyond words.

My suggestion to new Preemie Moms in the NICU?  Don’t just ask for support, demand it.  If the team is pushing you to breastfeed, then they need to provide support – real support without distractions, and real encouragement with positive feedback.  No one likes to be criticized and a new mom in the NICU is extremely vulnerable and prey to the demands of professionals who do not necessarily have the best bedside manner with this matter.  Breastfeeding a baby and pumping breast milk takes real work.  So if they take it so seriously, then they should take it seriously with you to provide you with serious support that is helpful and not hateful.


Milky Mums is a community organisation established to provide support to Mums who are breastfeeding or expressing for premature and seriously ill babies in Australian neonatal intensive care units (NICUs).  Learn more about our work

2 thoughts on “Deb. Preemie Mums in the NICU need real support and real encouragement

  1. I am so sorry you had several such bad experiences. I was really lucky in having good support from the midwives from the beginning, and from the nurses in NICU. We also had a lactation consultant, and monthly lactation meetings in the NICU (which also had tea, coffee and biscuits provided, heh. I would have gone even without them, honest!) and even just something as simple as being able to bitch to the other NICU mums about pumping and the fun and games of getting your baby to attach and feed were really helpful. For all the talk about breastfeeding there really does need to be better structural support in all hospitals though (and some nurses need to either STFU or think twice, or preferably both.)

    Also colour me impressed that you managed to stare down a hurricane related power outage, that is some serious mojo. 😉

    Liked by 1 person

    • Thank you Alison. Indeed, I suspect it was all hormones talking with staring down the hurricane! 🙂 And yes, I agree there needs to be a lot more support for breastfeeding in NICUs. It just doesn’t make sense to guilt someone who is trying and is under a great deal of stress.

      Liked by 1 person

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