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I Wanted to Breastfeed…

August 1-7 is World Breastfeeding Week; and Des Moines Moms Blog is joining people in more than 170 countries in the celebration. We are pleased to bring you a series of posts this week on the topic of breastfeeding, each one coming from a different perspective. If you are just tuning in, be sure to check out the other posts in this series here.

There are so many choices when becoming a mom: sleeping arrangements, schedules, health practices, etc. Feeding was one of the easiest decisions for me. Before my first son arrived, I knew wholeheartedly that I wanted to breastfeed. It was never even a thought in my mind to choose otherwise. But babies often have a way of changing our perfect plans.

My first son was born with severe health complications. I held him for only a second before nurses started breathing treatments and whisked him away to the NICU. Despite my son’s admittance into the NICU, I pumped and fell asleep that first night with the reassurance that I would soon be able to nurse him. Staff reassured me he would recover; it would just take some time and intervention.  However, my son’s health soon drastically deteriorated. In only a few hours, his health turned from bad to worse to critical. For the first couple months, my son was simply too ill and weak to nurse or bottle feed. All of his energy was being used to heal. As a result, he was fed through a temporary NG feeding tube (tubing which runs through the nose, down the espohagus and into the stomach).

As our son slowly grew stronger, I thought we might progress with breastfeeding. I was devastated when he was subsequently diagnosed with Pierre Robin Sequence (PRS). PRS is a series of craniofacial anomalies which make it difficult for babies not only to latch and feed, but also to breathe. When an infant struggles to breathe, it’s almost impossible to coordinate the suck reflex.  I was crushed to discover my son was physically unable to feed himself from breast or bottle. Thus, a permanent feeding tube was placed in his stomach.

Cuddling with daddy while being tube fed.

My perfect dream (blissful breastfeeding) and my less than perfect dream (bottle feeding my expressed milk) were both destroyed and I was left with sterile, foreign medical equipment to feed my baby. People may disagree on breastfeeding and formula feeding, but at least they understand it. Tube feeding is a whole different beast. I felt lost and guilty, but I did the only thing I knew how to do- I made the best of the situation. Even if my son couldn’t receive my milk orally, I decided I would continue to pump so he could receive my milk through his feeding tube. It was still within my power to give my son the best nutrition I could provide. I pumped 5-10 times a day for his first 13 months.

On top of needing a permanent feeding tube, my son also developed severe reflux. He would scream violently during feeding time and would then throw up ½ to 2/3 of my milk. I tried everything to relieve him. I tried different feeding positions, less volume with more frequent feedings, longer feeding times, supplements to help with digestion, removing every major food allergen from my diet, reflux prescriptions, chiropractic care, etc. Nothing helped. His episodes were so bad we had to supplement with formula to help him grow and stay hydrated. (Unfortunately, at that time I didn’t know about donor milk; but even if I had, I’m not sure that we would have even been able to secure enough milk since he was constantly refluxing and I daily needed something immediate on hand to maintain his nutrition and hydration.) I didn’t want to supplement with formula, but it was needed. Of course, he didn’t respond any better to the formula, but at least I had more supply to continue to provide him with some nutrition. Eventually, my son needed surgery to prevent him from refluxing because he progressed to the point of keeping next to nothing down, and the situation was becoming dangerous to his health.

At first, I really despised our situation because it was difficult for feeding to be anywhere close to a positive experience. My son’s debilitating reflux made feedings excruciatingly painful for him. I was disappointed having to supplement with formula. I was weary of constantly being hooked up to a pumping machine. And I craved the sweet tenderness of being able to feed my child instead of using sterile medical equipment. Eventually, I realized I had done the best I could in our situation.

When life doesn’t go as planned and we don’t get our first choice, our second choice, or even our third choice in a matter, we have to look at it from a different perspective. “This isn’t how things were supposed to go, but what am I able to do for my child given the situation?” Sure, my son and I didn’t have a typical bonding experience. I wasn’t able to nurse him. I wasn’t able to bottle feed him. But I was able to pump for him. Feeding was painful for him. But I was able to hold him tight and comfort him when he was refluxing. My milk just wasn’t enough for him. But I was able to help him grow by supplementing and finding the necessary medical help. I believe my son knows I love him based on how I responded to our atypical, trying, and certainly less than ideal circumstances. It was a privilege for me to do what I could to help him!

I’m hoping that I will be able to breastfeed any future children. I breastfed my second son and loved it! Breastfeeding is beautiful and ideally best. But lovingly meeting your child’s most basic needs the best you can in a less than perfect situation is even more beautiful.

I would love to hear how you were able to lovingly provide for your infant’s feeding needs in a situation that wasn’t ideal. It’s especially important to encourage moms who want to but are unable to bring their babies to breast.

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6 Responses to I Wanted to Breastfeed…

  1. Julie
    Julie August 5, 2013 at 9:22 am #

    Thank you so much for sharing your story!!
    The following sentences brought tears to my eyes.
    I wasn’t able to bottle feed him. But I was able to pump for him. Feeding was painful for him. But I was able to hold him tight and comfort him when he was refluxing. My milk just wasn’t enough for him. But I was able to help him grow by supplementing and finding the necessary medical help.

  2. Angela
    Angela August 5, 2013 at 9:38 am #

    I’m with Julie. Those sentences were beautiful, and they brought tears to my eyes.

    Thanks for being willing to stir up the emotions that must have come with writing this post. Great job, Amber.

  3. kristin williams August 5, 2013 at 11:55 am #

    Great post! I’m crying.

  4. Jodi August 5, 2013 at 4:09 pm #

    Thanks for sharing friend. I know you continue to do everything daily to feed and care both of your boys. You are an amazing mom. Nursing my first born wasn’t easy either and was a constant battle. My friends kept saying oh it so easy to just feed them put them back to sleep or nurse them on the go. I never experienced that with my first. Thanks.

  5. Abigail August 5, 2013 at 5:38 pm #

    Thank you so much for sharing…my heart goes out to you! I’ve also had a very rough journey with breastfeeding, though not nearly what you have faced. My little guy has a high palate so is unable to suck hard enough to get much from the breast. I have had to pump full time and use an SNS – and bottles when in public, as the SNS is far too much of a hassle to use out of the house. I am so, so thankful for the chance to nurse him at the breast as much as I have, even with the huge time commitment of pumping and the hassle of the SNS. We have made it to 8 months so far, he is healthy and strong, and though keeping my supply up has been a challenge we only had to use formula for less than a week. Thank God!

    • Amber August 6, 2013 at 8:47 pm #

      Alicia, thanks for sharing a little of your story too! My son also has a high palate (part of his craniofacial anamolies)! I understand your position- those high palates are tricky, especially since there really isn’t anything to be done medically to help “fix” a high palate. I am so glad you have been able to find a system that still allows your son to benefit from your milk. That is awesome!! Hang in there and keep pumping if you are able to do so. I had to pump a lot to keep my supply up (pumping just doesn’t bring in as much milk as a good latch). I would get so tired of being hooked up to a machine that I would try to treat myself especially if my son was asleep and I was pumping. I used it as my time to call friends or watch a TV show. You are doing a great job Alicia!

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