Heather and Arabella’s story

We’re happy to share a guest post by our friend Heather and her breastfeeding experience. Heather has 3 children and 3 totally different breastfeeding experiences. She wanted to write to reinforce the last guest blogger.

My first child was born on September 11, 2001. Upon meeting her, I was excited to figure out feeding her with my body. While we spent the next few hours together, I attempted to share small drops that were available from my breasts, and snuggle her, all while feeling modest and ackward holding this slippery little sweetie.

In my inexperienced opinion, I thought we were doing okay. While the breasts felt empty, I felt comfortable trusting the wise women around me, that she was getting the golden immunities she needed, while living off the reserve from her in utero feeding.

But on the first morning after she was born, our life got pretty crazy. Arabella had gone to the nursery for a genetics test – just a little blood draw to diagnosis what we all suspected – that Arabella had Down syndrome.

The nursery didn’t seem to be bringing her back as fast as I thought they should, so I wandered down to check on her. I saw a busy nursery, with several extra nurses in different uniforms… and eventually, I figured out that they were surrounding my baby. I was told that she had started to look pale, and that her oxygen was low, so the Texas Children’s Kangaroo Team was transporting her to TCH to check on her heart.

By the time I showered, and got someone to push me over to Texas Children’s NICU, Arabella had an NG-tube from her nose to her tummy. They explained her breathing was too rapid for her to eat by mouth, and that IV and NG-tube feeding would be the route for several days.
And that’s when I was sent to the Milk Bank, a place in the hospital where I learned to pump.
I tried pumping faithfully every 2 hours for the next 2 days, while wandering the NICU as a super-swollen, post-preeclampsic, confused-as-to-what-being-a-mom-looks-like-in-a hospital new mom.

Then my milk came in… I think it was day 4. OHHHHH, it came in. My breasts were suddenly (NO EXAGGERATION) the size of a cantelope… EACH. And hard as a rock.

And my pumping changed.

I would still enter the little room, hook up to the dual-pumping machine.

But NOTHING would come out.


And the pain was increasing.

I consulted with EVERYONE – the lactation consultants, my midwives, my mom, my friends – and nothing recommended worked. I even found an office in the hospital with a bathtub to soak in.

Then I found the problem.

Out of each of the tiny holes on the tip of my nipple (FYI, milk comes out of LOTS of holes, not just one), I pulled a string of white dried milk. So all the pumping was creating NO internal suction. It was just hitting a wall.

Once this obstacle was overcome, I settled into my pumping routine. For the 18 days Arabella was there, I spent my days trying to get her to eat out of the breast with a lactation consultation – then finding out that over 20 mins of trying would exhaust her heart and burn more calories than she gained; going to pump and banking the milk; then making sure that the milk that went down the NG tube & eventually a bottle was mine.

Arabella with her G-button.

Two nights during this visit, I slept through a feeding. My alarm clock next to the couch in the waiting room did not get me up for the 3am feeding. And when I rushed back to the NICU at 3:45, I found that the nurse was unable to locate my breastmilk and gave a feeding of formula.
Both of these nights, which were about 2 weeks apart, after having formula, Arabella’s intestines would stop working. They thought it was a symptom of Hirschsprung’s disease, semi-common in kids with Down syndrome. But each time, all problems disappeared after a day without the formula.

So, Arabella needed breastmilk.

No pressure.

As my days of mothering in the NICU were coming to a close, I was faced with a new expense – a hospital-grade breastpump was needed for home. Fortunately, my mom suggested calling WIC, a nutritional supplement program, and asking if they had pumps.

WIC’s lactation consultant, Cathy Eng, drove the 30 miles to TCH to bring me my very own Ameda hospital-grade pump. She also promised to work with Arabella and I in our home to get that sweetie feeding from the breast. And she did. She came to my house as often as I asked, and we tried really hard for 6 months.

But the whole time, I was pumping every 2 hours. And I got pretty used to it. My body learned to let down in response to a machine, with a heart warmed by a baby. People who visited learned to step outside while I pump, cuz I wasn’t relocating my whole set-up from my living room coffee table! And eventually, I learned to single-hand manual pump while driving!

Arabella’s feeding is her own story. She ended up with failure-to-thrive when she was below-birth-weight at 3 months from feeding by mouth. She returned to the NG tube, then had a more-permanent G-button put in her stomach at 4 months. The acid-reflux from these intrusions caused her to have an oral-aversion, not wanting anything in her mouth from 4 months-6 months. But by 1 year old, she had her broken heart fixed, had overcome the oral-aversion, and was weaned off the G-button. She finished her first 8-oz bottle of milk by mouth about 2 weeks before she was 1 year old.

Arabella is 8 years old now. And she knows about breastfeeding. When she asks if she drank from my breasts, I am grateful that I can tell her that I loved her through the milk, even when we couldn’t share the breast itself.

Arabella, age 8


  1. Beautiful story. I love moms dedication to their babies. For me – formula just isn't an option. And as much as I'm sick of my pump, their is so much love in giving my baby the best.

  2. September Love says

    What a wonderful story! Go mama for sticking to the pumping! I have been there, watching my baby in the NICU…and how wonderful that WIC was there to help you. That's the reason that I keep going to work at WIC in Texas, because even though the information we give goes right in one ear and out the other for a lot of moms we counsel, every child that I'm able to help get their mommy's milk even once is a healthier and happier child for it!

  3. How wonderful to hear such a positive story. I hope that if I'm ever in a similar position I will have the fortitude Heather showed.

  4. What an amazing story! I too have a daughter with Down Syndrome now age 28 months. I was fortunate enough to be able to BF right from the beginning with some help from lactation. She was a champ. She started having some stomach issues too but I went to a really bland diet and no soy, milk, and gluten free and then she really started to thrive. Pumping was difficult for me because she had oral aversion to anything but my nipple. Poor dad on nights I worked. I felt sorry for him trying to feed her while I worked. She BF for 20 months and then decided she was too busy for it and weaned herself. Still miss it sometimes when I just want a snuggle.

  5. Thank you for sharing your wonderful story and your beautiful daughter!

  6. shantijoy says

    Thank you to all. That's so great Cari. Your daughter is going to be the best thing that ever happened to you, I guarantee it!
    More stories on Arabella @ my blog.