Raising a Newborn Amidst Multiple Undiagnosed Chronic Illnesses

Disclaimer: this post ended up focusing on my (failed) breastfeeding journey more than anything else. If you avoid feeding posts, avoid this one. Also, I have absolutely nothing against breastfeeding and I hope readers who love it and have a successful time breastfeeding their babies know this is not at all a slight on them. I just am sharing my own story: which is intrinsically linked to my chronic illnesses and the whole-body and intense nerve pain it causes.

My last blog post was a look back on my pregnancy with multiple undiagnosed chronic illnesses. Looking back and reflecting proved to be a powerful thing for me. I’ve never written about it before, and am surprised how much I remember.

The next piece of my past I’m reflecting on, both for my benefit and for awareness for the chronically ill parenting community, is the period right after my daughter S (now 4.5) was born. This part is blurrier than my pregnancy, so I’ll do my best to recount what I can.

I am not a baby person. I’m not even sure I’ve held a baby since S was that little. Now, I love kids, have a Masters with a specialization in youth and young adult development, and have worked professionally with kids for nearly a decade in many different settings, from a preschool teacher to a before and after school professional. Working with three year olds, elementary schoolers, and middle schoolers are my niches. Babies, on the other hand? Not my strong suit.

I heard a lot before S was born that it’s different when it’s your own kid, and that definitely proved to be true. I loved S immediately, and I took to being her mom fairly easily. But that didn’t change that the newborn period was the hardest stage of her life so far, and I’m thankful not to go back to it.

The number one thing that made the newborn period hard for me was breastfeeding (that and my undiagnosed chronic illnesses: which themselves were the number one thing that made breastfeeding hard).

When I think back to the four-ish months in which I breastfed, the number one thing I remember is pain.

The pain started shortly after I came home from the hospital, my milk came in, and I was severely engorged. The pain was literally as bad as the active labor I’d just experienced a few days earlier (pain tends to be the common thread in most of my life experience). I remember crying in pain while stuffing cabbage leaves in my pain, and sobbing in the shower as I ran water on them, desperate for anything that would ease the pain.

That pain stopped after a few days, but it was just the beginning of a very painful breastfeeding journey. Everytime she fed, I hurt. Her latch was confirmed correct by multiple lactation specialists, but it didn’t matter. Pain seared through me from the second she latched, throuth the entire time she fed, and afterwards. It hurt even worse when I pumped. Any contact hurt.

The breast pump, which I was using correctly, hurt so much that I switched to a manual on the two days a week I went to my graduate school classes. This really hurt my supply. I went from building a pretty decent supply, through tear-inducing sessions with the electric pump, to feeding her every single drop and still not having enough.

My school didn’t have a designated pumping space, and I didn’t know nearly enough to know that I could ask for one, so I pumped in a single stall bathroom in the basement, because it was the only bathroom where I could have total quiet.

Clusterfeeding days were the absolute worst. She would want to eat nearly all day, so I had no break from the pain. I’d be alone while my husband was in class all day, and I used up my freezer supply, so I couldn’t switch to a bottle. I would just sit there, sobbing in pain as she ate.

The pain I experienced definitely affected both my early relationship with my daughter and my mental health and self-esteem. I felt so inadequate for struggling so much to provide for one of her most basic needs. I felt broken for being in so much pain while feeding. I had heard that breastfeeding shouldn’t hurt so many times. Once again, just like in pregnancy, I felt like my body was failing me.

I would later learn the pain was caused by my general pain conditions: Generalized Hypermobility Spectrum Disorder and secondary fibromyalgia. My body wasn’t failing me; it just doesn’t produce normal, healthy collagen. My defective collagen and overactive nerves cause a lot of pain, and breastfeeding triggered it.

One weekend we were visiting family. S was about two months old. She was crying because she was hungry. My supply had dropped and I couldn’t provide enough to satiate her. I was crying because of feelings of inadequacy and the physical pain. That was the night I started supplementing with formula. It was a total game changer. I felt more connected to my daughter, and had much better self-esteem.

When S was about 4 months old, I ended up in the emergency room with several very painful burst ovarian cysts. I was told there that the medication they gave me made it unsafe to breastfeed. This turned out to not be true, but I had already stopped for several days by the time I found that out. I probably could have restarted, but a wave of relief had already washed over me. The newborn period dramatically improved, for both of us, when we started full-time bottle feeding. I have had many difficult times in parenting since then, and I’m sure I will have plenty more, but I look back on that time and am thankful for the decisions I made, and happy for the wonderful 4.5 year old I have today: and relieved that the baby days are very much behind us.

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