Hand to Hold's Official Blog: Written by Parents for Parents

The Sky is the Limit: Breastfeeding a Vent-Dependent NICU baby

breastfeeding a trach-dependent preemieWhile on three-day hospital bed rest with PPROM, I researched what was required to create a breast milk supply under these circumstances: our son was going to be an extremely low birth weight, premature, and sick baby. He would be separated from me at birth, untouchable for days, possibly weeks. I read that pumping within four hours of delivery and continuing to pump every two hours with a medical grade pump is critical. The moment I was told that I was in active labor and they were not going to stop it, I demanded that a medical grade pump be delivered to my room.  I specified that I would need it within four hours of delivery. When I returned to my room, after giving birth, it was as we left it aside from a freshly made bed. There was no pump.

I insisted that they bring one. I recall the nurse saying “you probably won’t have much yet.” I dismissed her feedback and her doubt. I produced approximately one ounce of colostrum from each breast. I was thrilled to see the pale yellow viscous liquid coming from my body. Prideful, and full of adrenaline from the culmination of three days of uncertainty and our baby’s arrival, I hobbled to the NICU down the stark hospital corridors, to deliver it to Luca’s nurse. I visited my baby in his new manufactured home, a plastic isolette filled with blue light. I did that again for the following forty-eight hours until I was discharged home and Luca remained there.

I wept for days in a wash of postpartum hormones, grief, loss and separation. I was haunted by the persistent thought that we left something important at the hospital and each time I reminded myself “you left your baby.” Not the cell phone, not the quintessential bag that women pack in preparation for delivery, not the camera, not the health insurance card, the baby.

I woke up every two hours to pump. The pump is the baby. You have to essentially trick your body into thinking that it is feeding a newborn infant. You do this by pumping every two hours to completion, which can easily take 45-60 minutes when you budget in time for washing all the parts and storing the milk. I had to listen to other babies cooing, crying, and babbling on the Internet as my baby was too weak to utter these sounds. I had to inhale Luca’s smell through small cloth diapers that we set under his body. I had to look at photos of him. All of these tasks were to promote “let down.” I cried often, especially in the beginning, longing to nurse my baby and cradle him uninterrupted in the security of my own home. I held on to the vision of breastfeeding him in the future. I had to wake up and pump every two hours for the first two months of Luca’s life. After that I was able to reduce it to once in the middle of the night because I had successfully established a milk supply.

I continued to pump every three hours during the day and evening. If you do the math that’s approximately 4-5 hours of pumping every day, averaging over 30 hours per week, because you don’t get weekends off! The NICU nurses joke that it’s like a part-time job. Also, massage and “compression” is critical when exclusively pumping because you have to mimic what babies naturally do with their jaws during nursing. You are never really “hands free” which limits your activities.  Where did I do all this pumping? Usually in Luca’s NICU room and at home in our guest room which became “the pumping room.”  Other locales included the backseat of vehicles, multiple janitorial-like closets, friend’s guest rooms, an old library, and at an outdoor concert behind a bush.

 

Holding Luca and resting helped increase milk production the most. We also worked a great deal on getting him to latch. The first time Luca successfully nursed he was 30 weeks gestational age (approximately three weeks old). We knew he accomplished it because when the NICU nurse “drew back” with a syringe from his nasogastric tube (NG) tube fresh breast milk appeared. In all, I exclusively pumped for seven months from early June to early January. I went through the gamut of issues that “exclusive pumpers” complain of including engorgement, chapped/bleeding nipples, decreased milk production, several plugged milk ducts which feel like burning daggers, missing pump parts that require late night outings (membranes down the drain!), and mastitis, a systemic infection due to a plugged duct, which requires antibiotics.

Despite the challenges with being ventilator dependent, Luca took off nursing in the beginning of January 2014 and consistently breastfed for six months. We worked intensely with lactation consultants in the NICU, La Leche League consultants, and a public nurse/ lactation consultant that came out weekly for about six sessions. It was a long, difficult process with many setbacks, frustrations, doubt, and, ultimately, success.

A parent’s love for their child is like no other love. I propose the following belief with great sensitivity and with the knowledge that all parents care for their babies.  In my opinion, parents that struggle with their children through an early birth, a prolonged hospitalization, and medical procedures, have a deeper appreciation for this bond. Their love is immense because of their nearness to loss, uncertainty, and the raw pain of watching their baby fight. As one of his primary NICU nurses put it, “You guys have trudged through the mud with him and I think, yeah, that means your love is just a little deeper, a little stronger. You don’t take anything for granted.”

Producing breast milk with a pump was often the only thing I could do in a powerless situation. Through days, weeks, and months of watching Luca live in an Intensive Care Unit and having no means of making it swifter or easier for any of us, I could feed him. I could do that. I know that this is not possible for every NICU mom and I know that their love and dedication is just as profound and life-sustaining. I love talking about pumping and breastfeeding special needs babies as well as hearing others’ experiences. Please share with me how you all traveled this path.

Shoshana Koch About Shoshana Koch

Shoshana Koch (MN) is the mother of Luca, born at 26 weeks weighing only 1 lb. 13 oz., due to unexplained PPROM. After 151 days in the NICU, Luca came home with a tracheotomy, ventilator dependent, G-Tube dependent, and 24-hour home care nursing. Shoshana pumped and was able to exclusively breastfeed her son for several months, a dream she held even in the grief of his untimely birth. Today, he is a trach-free, healthy, energetic toddler! Shoshana is a clinical social worker starting a private practice so that she may still attend to Luca’s needs while reclaiming her career life. Shoshana chronicle’s her son’s life, and other personal musings, in a blog called Early Light .

Comments

  1. What an incredible story of determination, commitment, and empowerment. Thank you for sharing!

  2. Amazing, Shoshana! Your determination is inspiring. Thanks for sharing!

  3. Thank you for sharing your story. I have a happy and healthy 8 year old who was born at 31 weeks. While reading your story, I felt like I was right back there with you, 1 am, 3 am, 5am that first week of leaving my baby in the hospital…I cried at night when I woke and no one was there to tell me we would get through it. I pumped exclusively for 4 weeks and he began to nurse on his own, our hospital stay was 47 days.

    Breastfeeding is such a HUGE commitment for moms and babies. Breastfeeding a preemie is a completely different HUGE commitment. I am a breast feeding peer mentor at my son’s former NICU and meet lots of moms facing the same challenges and work hard to encourage moms to hang in there! This is a great story to share with them!

  4. Your fierce determination was crucial to Luca’s healing, and now your experience can give hope and resources to moms in similar situations. Thank you for sharing your journey.

  5. I ppromd at 14 weeks, was on home bedrest for 10 weeks, in hospital one day, then cord prolapse and emergency c section. My Benjamin was born weighing 1lb, 10oz. He was the sickest baby in the NICU for quite a while. I had five other normal births, and breastfed all my babies. I, like you, pumped and pumped…I felt it was the one tangible thing I could do for him. Pump and cry….many days it seems like that’s all I did! He was on ventilators for 9 1/2 weeks. He didn’t have the stamina to nurse for full feeds in the NICU, so we came home with a gtube. But, I was determined, and God blessed us. I never used the gtube again after the first week home. He’s now a happy, strong little 9 month old (5adjusted). And I would go through the hours and hours of pumping, clogged ducts, thrush, soreness and pain all over again for the joy of getting to snuggle and nurse him now!

  6. Awesome story. You totally summed up all 3 of my N.I.C.U experiences. I pumped exclusively for 3 months with the 1st, he never latched, and had breast milk for 6 mos. 2nd breastfed until 15mos. And newest one almost exclusively pumping due to overactive production. Definitely gives you the feeling of control when you have none. Thanks for sharing!

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