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.

My Pregnancy with Undiagnosed Chronic Illnesses

My daughter will be 5 in January, so it has been quite a while since I was pregnant. Still, even with this much time removed from the experience, reflecting on it is admittedly difficult. I might be missing a fact here or there, but remember I am just trying my best to recall hard moments from the past that I mostly blocked out. I wouldn’t even be attempting to share them, except for I feel passionate about being a voice for the chronically ill community, especially chronically ill mothers. My pregnancy story is an essential first part of my chronically ill parenting journey.

Pregnancy was a very hard time for me physically. I was not yet diagnosed with Chiari Malformation, Generalized Hypermobility Syndrome, or Postural Tachycardia. So I thought I would have a normal, healthy pregnancy. My mom LOVED being pregnant, with both me and my younger sister.

I decided to take a pregnancy test because I was SO SICK. I vomited basically straight for an entire week, which is super fun when you’re trying to move into your 1st apartment with your brand new husband.

We went to the store for some groceries after first moving in. After beelining for the store bathroom to vomit once again (so glamorous; I am way too familiar with too many toilets in too many different bathrooms), I decided to buy a pregnancy test, just to be safe. Both my husband and I were sure it would be negative.

Welp.

I took one. It immediately turned positive. Took the other. Same result. My eggo was preggo (Juno reference).

We took it in stride, and were excited to be new parents, despite it being a surprise. We announced to our families, who were super excited too (first grandbaby/niece or nephew!). We decided on a girl name (that we had actually decided on when we were just dating) and, after much deliberation, a boy name (which was much harder). We started buying tiny, gender neutral clothes (I got a job at a children’s consignment store during that time, very part time between grad school classes, so it was all very tempting!).

But despite all that joy, I continued to be so, so sick: my entire pregnancy.

The throwing up was initially the worst. I threw up from “morning sickness” multiple times everyday through about 30 weeks, when the morning sickness seemed to subside but was replaced by awful acid reflux that still caused me to throw up multiple times a day. I didn’t get a break until a bit after I’d given birth.

Around 13 weeks, I had extreme cramping and bright red blood. I rushed to the Emergency Room, and after being observed for several hours and having an ultrasound, they determined it was a “threatened abortion”: scary words! Basically, it could have been a near-miss with losing the baby, though they couldn’t be sure. They put me on modified bedrest for several weeks until my OB cleared me.

I ended up in the hospital again with awful back pain and contractions. This time I was admitted. They monitored me, ran more tests, and gave me my first series of shots to stop early labor. This was the first of 3 times I would end up in the hospital for suspected early labor and have to receive those shots.

I was put on modified bedrest again all through winter break, so basically the entire month of December and almost two weeks into January, until I reached 37 weeks. I remember laying on my apartment floor a lot on a sleeping bag, groaning in agony as prodromal labor contractions rippled through.

At 37 weeks, I was finally allowed to move around some: difficult to do when I was in the amount of pain I was in. But ultrasounds and tests showed that S was growing well, that none of my pain or illness seemed to be effecting her in any way, and likely if she came out at any moment that time forward she would be a healthy full-term infant who wouldn’t need a NICU stay (important, because our small city hospital didn’t have a NICU so she would have to be airlifted to a large hospital in Columbus with a NICU).

So when I got that 37 weeks cleared, I tried my best to walk as much as I could, which is the advice my doctor themself gave me: “walk that baby out of you.” It was so weird from working so hard to keep her in to actually wanting her out.

Part of me felt guilty for how urgently I wanted to give birth once I got the 37 week ok to be off bed rest. I heard a lot of (not specifically to me, but in society) “let them cook as long as you can,” “the baby will come when the time is right,” “your body knows best.”

But here’s the thing: through my entire pregnancy, I felt as if my body did not know best. It made me feel violently nauseous everyday, and expelled most things I attempted to eat. It was in so much pain I struggled to sleep, pretty much the entire pregnancy through. And with the “threatened abortion” on my mind, I felt like it didn’t know much about being pregnant, either. Of course, it wasn’t my fault any of these things were happening, but it had definitely ruined any trust I had in my body.

I had been having prodromal labor contractions. Prodromal labor is actual labor, different than Braxton-Hicks, and the contractions can be very painful. But they are barely productive, which is why it took weeks for me to go from a 2.5 to a 3.5 in dilation.

I walked for about two days as much as I could: which admittedly was not much. I had to take many breaks to lean on things, and at least one to throw up. It felt like a marathon just to walk around my apartment complex. I would walk a bit, then return to writhing on my apartment floor. It was all very glamorous.

The day after that, by midafternoon, my stomach literally felt hard. My doctor was out that day, but instructed that if it continued feeling like that into the evening.

When I got to the hospital, I was about 3.5 cm dilated…I’d been very slowly progressing from a 2.5 for weeks. They monitored me for a while, and I was having contractions (the same contractions I’d been having for weeks!), but they were unproductive, so they sent me home after a few hours of monitoring: but the triage nurse said she wouldn’t be surprised if she saw me again very soon.

I had a follow up appointment with my doctor the next day. She confirmed everything that L&D had said, and also that she believed I would probably be in productive labor very soon.

Well, both my doctor and triage ended up being right. The day after my appointment, two days after triage, after a day of walking as much as I could stand (so like around my apartment building and a parking lot’s length), the contractions started feeling different, more intense. I stayed home as long as I could tolerate: I took a bath, I was able to fall asleep, but I was awakened by the most painful series of contractions I’d had yet. My mother in law knew my screams meant it was time to go (she ended up visiting that day anyway: fortuitous timing), so she, my husband and I all drove to the hospital (and over a ridiculous number of speedbumps at my apartment complex, each one causing me to yelp in great pain).

When I reached the hospital and got up to triage, I was still only at a 3.8, but after about half an hour of walking the hallway I was over four cm dialated, the amount that it took for my hospital to admit me. It was officially go time.

Compared to the 37.5 previous weeks I was pregnant, the sixteen-ish hours I was in active labor were surprisingly OK. I had planned to have an all natural birth and to not have an epidural, mostly because that was what my mom did. But after laboring in the shower for a while, the doctor offered me a shot of medication to help the pain go away some so I could sleep (I don’t remember despite my best efforts what they said they were giving me, but it was likely Demerol). They did warn me that the second dose often wasn’t as effective.

I was able to sleep through the night until about 9 in the morning. My labor plateaued at 6.5 cm, so my doctor came in and broke my water. That’s when the contractions kicked it up into high gear. They gave me a 2nd shot, but it didn’t do anything. I finally agreed on the epidural.

The surgeon came fairly quickly and I got my epidural, and looked forward to the pain relief. It hadn’t kicked in yet about 10 minutes later when my doctor came to check on me. To her shock, and mine, I was somehow already over 9.5 cm dilated. It was time to push.

The epidural did not end up helping at all. Pushing was excruciating, and after one push, I yelled that I couldn’t do it. My doctor laughed, told me it was too late and her head was already out, and told me to push again. After two pushes, she was out like a cannonball. Compared to the rest of my pregnancy journey, I got off easy with pushing.

The next few minutes, while they stitched up my second degree tear, are blurry, but I do remember holding her for the first time after that and crying. She was mine, my baby. And after all that work, she was utterly, totally perfect (even though her face was bruised and her nose was smushed in, making her initially look a little like Voldemort).

I am so glad that from all of it, I had my daughter. The journey to give birth wasn’t easy, and my health has presented many problems since as well. But I wouldn’t trade it for the world. On one hand, I know it is important for me to be truthful about the painful journey it took to have my daughter, and the daily pain I’ve been in since.

But on the other hand, motherhood, with all the growing pains and the learning curves and the difficulties, has been a beautiful gift. I love being my daughter’s mom, and I love the creative, inquisitive, scientific four year old (who has looked nothing like Voldemort since she was a day or so old) she has become. Every time I threw up, every hospital trip…it all led to the moments I get now, the relaxing evening spent laying in bed together as she draws and we talk about everything under the sun. It all led to this.

Welcome to My Parenting Journey

Hello loyal readers! As I attempt to write in this space more regularly, I have decided to write more about being a parent: specifically, about being a chronically ill/disabled parent to a (so far) very healthy, active child.

I admittedly have not written much about parenting here. I have one parenting related post, about what I would tell my chronically ill self before pregnancy, which was also posted on The Mighty. But I’ve never deeply delved into writing about the greatest current reality of my life, which is being a chronically ill working mother.

The reason I am starting to write about these realities is because I feel like my stories could add an important voice (a chronically ill, disabled voice) to the multitude of writings about parenting. I know many wonderful parents who live with chronic illness and disability, but posts focusing on that are largely absent from most parenting blogs.

I’m not much of a photographer, and I rarely share photos of my daughter on my blog, so these posts will be textual, more than anything. If you’re not a fan of this style, I encourage you to read another parenting blogger: there are so many great ones! But writing is how I best express myself.

I also will risk sounding one-note on this blog, as most of my posts will center around chronic illness parenting and its many different dimensions. This is because I know many wonderful parenting bloggers who write about a whole lot of different parenting issues, but chronic illness parenting is my specific experience, and the one that tends to be under-represented amoung parenting blogs.

So a little more about me, my family, and my context to blogging.

My husband and I are both 27, and have been married a little over five years, together for eight. We got married right after we graduated college, and right before starting graduate school. We wanted kids someday for sure, but we had a five year plan before we would talk about kids: we wanted to finish grad school, get established in our careers, and maybe buy a house first.

Well, that five year plan didn’t even last five weeks. Less than a month after our honeymoon, the day we moved into our first apartment together, I found out I was pregnant.

My daughter, S, is now 4 and a half (she’ll turn 5 in January and is already planning her LOL doll birthday party). She has been the greatest source of joy and adventure in our lives. She is a total fearless ball of energy and passion. Her current obsessions are art projects, dinosaurs, and her dollhouse. Her overabundance of energy and inability to calm her body are the #1 thing that get her in trouble these days. She is also very smart and inquisitive, and we truly have great conversations.

However, despite S being our greatest blessing and never wanting to change our lives’ trajectory for the world, pregnancy came with some unique challenges centered around my health that never let up.

I’ve never been completely healthy. I’ve had migraines since elementary school and ovarian cysts since 8th grade, along with a series of other symptoms that all make sense in hindsight.

But pregnancy was definitely the sickest I’d ever been up to that point. I threw up multiple times every day, from six weeks until after I delivered. I was in the hospital multiple times: I had a threatened miscarriage at 13 weeks and almost lost her, and she tried to come early 4 times before she arrived at 37.5 weeks. I had severe back pain and was on bedrest much of the time.

I hoped delivering would bring relief, but unfortunately, it was just the beginning. Breastfeeding was extremely painful. My chronic cysts flared up like never before. I had the worst migraines of my life.

By the end of 2016, I was diagnosed with a number of incurable lifelong conditions, a number that continues to grow. I have Chiari Malformation, which is a brain condition, Generalized Hypermobility Spectrum Disorder, Postural Tachycardia, lots of allergies, chronic ovarian cysts, abdominal migraines, and probably some I’m forgetting. I sometimes need to use a wheelchair for my hypermobility pain and my tachycardia, especially at places like the zoo. I take many medications every day.

I am thankful to also be able to continue working, which I know is a privilege for a chronically ill person, but is also incredibly trying at times. I try my best to strike a balance. I have my Masters of Divinity in Youth and Young Adult Development, and work in after school programming, a field I love. I am starting at a new school and moving three hours away from our current location in a few weeks, so everything is really a whirlwind right now, especially with trying to keep my pain in check.

In the next few months as I delve into writing about parenting, I plan to focus on quite a few topics, most of them related to illness and disability and how it relates to parenting. These topics will include:

  • Balancing career, parenting, and chronic illness
  • Parenting while in graduate school
  • Making time for creativity as a mom with chronic illness
  • Moving with a kid and a chronic illness
  • My pregnancy with undiagnosed chronic illness
  • Privilege, chronic illness, and parenting
  • Planning a family vacation with chronic illness
  • My daily chronic illness parenting routine
  • My only child and my chronic illness
  • Planning with a child and chronic illness

I am excited to have the chance to write about my parenting journey, and hopefully to be a voice for and to speak to other parents that face similar challenges. And even if you don’t face chronic illness issues alongside your parenting, I hope I’m able to be a representative for the many that do.