How Pumping Helped Me Cope With My Child's NICU Stay and CHD

Two years and eight months, well over 2200 hours of actual time… that’s how long I exclusively pumped for my son.

I didn’t start with a certain end point, I just kept going until it seemed like the right time to stop. I didn’t do it because I enjoyed it (I didn’t), or because “I hate formula” (I don’t) or because it helped me loose weight (it didn’t). I did it because I could and I didn’t know what else to do.

You see, my son was born quite sick with a complex congenital heart defect at 35 weeks via a very complicated cesarean-hysterectomy. We both were critical. It was a very painful and difficult birth and recovery, both physically and emotionally — for both of us. My new son was in the NICU fighting for his life. I was bedridden and helpless, so I pumped my heart out, it’s what I did. It was a way to direct my anxiety and panic into something with a purpose.

And I just kept pumping.

I pumped while he was transferred to the children’s hospital, as his health declined after his birth. I pumped in the following weeks and months at his bedside when he was too fragile to hold. Then I pumped once he finally made it home with a feeding tube. Eventually, I learned to pump on the way to therapy and doctor appointments, even across the country for second opinions. I just kept pumping as there was always a reason: cold and flu seasons, additional diagnosis, two open-heart surgeries, weaning off of the feeding tube and countless sedations for procedures and testings.

Every time I thought I would stop I just had to keep going — for him. I’m not a doctor, therapist, expert, nutritionist or surgeon, he has and needs all of those things. I am his mother and this, this I could do. I had to do it. I was up bleary-eyed and emotional in the middle of the night regardless, so why not pump, too? In surgery waiting rooms I could stand up and declare, “I have to go pump!” instead of staring into space and spiraling within my own thoughts about what was happening down the hall. I pumped then washed and sanitized parts with an authority and rigid routine. It gave me a purpose, direction. I meticulously measured output, consumed or frozen, to the milliliter. Why? Because this was one thing I could control when I felt completely powerless, unable to help my own son.

I pumped for so long because it became ingrained into my routine, it really didn’t seem so hard anymore (most of the time). I pumped through weddings and funerals, parties and holidays, concerts and sporting events, in airports and taxis, training for and running a marathon. I would pump in front of friends, family and strangers. I didn’t care, I pumped everywhere and anywhere I needed to.

And now, I am done. My son decided the time was finally right, he no longer takes a bottle and refuses any and all milk from a cup. There is no reason to pump any longer. His medical journey is very, very far from over. I do dread our next hospital visit. There will be no milk to give him during times of fasting and while coming out of anesthesia. What will I do in surgery waiting rooms? I don’t even want to think about potential weight loss or cold and flu season. It is time though, I will have to find a new way to ground myself while fighting with and for him, every day.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

A group of friends talking over lunch.

The Kind of People You Need on Your Congenital Heart Disease Journey

There are times in congenital heart disease (CHD) world when you have appointment after appointment, test after test, question after question (and many are not answered) – and you just start to keep these things to yourself. It’s not because you don’t care to share it with friends and family, and even immediate family sometimes, [...]

The Healing Power of Animals

Like most children, when I was young all I wanted was a puppy or a kitten. A small, cuddly, fluffy little soul that was all mine to love and adore as much as I wanted. With already two dogs in my family, and my mom’s allergies to cats, my pleading for a kitten didn’t seem [...]

To the Man Who Loves My Warrior Heart

I never thought I’d find someone who would love my warrior heart like you do. Thank you for listening intently to my surgery stories and for offering me comfort and understanding to the best of your abilities. Thank you for being concerned for my health and for taking the time to make sure I’m not [...]

Lessons I've Learned Since Becoming a Heart Warrior's Mama

Life hasn’t been the same since I became a heart mom to my 6-month-old daughter, Nylah. As I navigate through her triumphs and setbacks, I find myself increasingly more grateful for every moment I share with my children and I notice that overall, my own heart feels a lot more than it did before. At Nylah’s delicate age, she [...]