Wednesday: I’m hanging my four-and-a-half-month-old Owen’s cloth diapers on the line to dry and vaguely notice that there aren’t as many stained with that signature yellow, ‘breast milk poop’ stain. I chalk it up as changes. He must be getting older and pooping less. It’s a tiny blip in my day.
Thursday: I am suddenly engorged with milk, and I can’t figure out why. Nothing seems to have changed. Owen is still nursing. I call my oldest sister, but she isn’t home. I ask my niece to leave a message on their giant erase board: “Auntie Mel is engorged. Why now?!”
Friday: I’m holding Owen on my lap and then lifting him to the standing position. This is his latest thing that he loves to do. He stands for a second or two and then slumps down into a ball on my lap. Confused, I lift him to his feet again. This time, he slumps immediately. I’m curious but not alarmed.
Saturday: We wake up Saturday morning and find Owen’s cloth diaper from the night before is bone dry. This realization immediately sends a chill down my spine. His morning diapers are usually drenched. We change our plans to go to the Farmer’s Market and walk to Now Care instead.
I tell the doctor what I know: That I’ve been engorged. That his diaper was bone dry when he woke up. That there is something weird going on with his swallowing, like it hurts or bothers him. The doctor isn’t worried about his dry diaper and tells me that sometimes babies will go on a hunger strike when they’re teething. Maybe he’s just teething so not wanting to nurse as much. I believe in my heart that there is something really wrong, but I can’t pinpoint what it is. I ask him to test him for something. What is up with his swallowing? Please test him for Strep. The doctor clearly thinks this is ridiculous but does the test. It’s negative. He tells me to take him to Community Hospital if things are worrisome over the next few days.
As I check out at the front desk, the nurse jokes that no baby has ever died from a hunger strike. No baby has ever died from teething. I nervously laugh along with her but think it’s a really strange thing to say.
Saturday afternoon: I treat Owen for teething, because I want to help him in any way that I can. I give him teething tablets and continue to wonder and worry.
Sunday: I go for a walk with a friend. It’s a really hot day, and I’m carrying Owen in the Ergo. He seems more slumped down inside of it than normal. He just seems so not right, but it’s subtle. I’m sure I chatter on the entire time about my concerns to my friend, who offers teething advice. We stop at Bernice’s Bakery for a second and then head back home. The heat has me worried about Owen staying hydrated. We’re halfway across the Higgins bridge when Leigh realizes that we’ve left my beloved dog, Barley, tied up at Bernice’s. I can’t believe I’m this distracted, and I’m also really annoyed to have to backtrack when all I want to do is be home in my cool house with my baby.
Sunday late afternoon: I’m getting more and more worried about Owen. I need to get some things from the store, and I leave Owen home with Mark. I run into people we know, and I’m a mess. I tell them that there’s something wrong with Owen but we don’t know what, and that I’m really worried. I rush through the store and hurry home.
Sunday night: I stay up on the couch with Owen all night. I make it my duty to try and nurse him throughout the night. I slip off to sleep and dream that Mark has fallen into an icy pond. I’m just feet away from him but can’t reach him. I have to choose between helping him and risking my own life or staying safe on the edge of the pond. I wake with a start.
Monday morning: As Mark readies for work, I ask him if he really needs to go. It’s Monday, his busiest day of the week during his busiest time of the year managing a farm cooperative. He doesn’t have a back-up person. It’s just him. I cry as he leaves. It’s obvious that I’m more worried than he is. I’m a mom.
I call a friend to reach out. She asks what she can do, and I ask her to pick up some baby Motrin. She brings it by, checks in on us, isn’t alarmed. Another friend stops by. I look into her face to see if she’s worried after seeing him. She is concerned for us but doesn’t seem overly worried. Nothing is obvious or alarming.
We have friends working on our house. They’re hanging sheet rock in our mud room. I tell them that I’m really worried. I’m dying for someone to look at my baby, be alarmed and tell me what to do. Owen can’t hold up his head anymore. I put him down on the bed for a nap and do the dishes. I check on him a few times and realize that I’m checking on his breathing. I call my mom. “Just don’t let him get too weak,” she says. I go back into the bedroom, look at my baby and panic. I start calling everyone we know, asking for a ride to Now Care. I’m too stressed to drive us there alone. My friend Lindsay, who came earlier with the Motrin, comes to pick us up. She has two small kids, and I feel bad for putting her out. I leave a note for Mark. We mess with car seats and get Owen’s in the back seat. I sit on top of one of her kid’s seats, right beside Owen. I’m not leaving his side.
Monday evening: We get to Now Care, and they look inside his mouth. They see all of this white stuff on his tongue, which I know is the teething tablets that have built up, and they send us straight to the ER. I’ve been worried for days, but suddenly it feels like a true emergency.
We get to the ER. There are other people in the waiting room. The nurse who checks us in is blasé. She weighs Owen, and I am startled that he weighs a pound less. I mention this, and she says, “All scales are different. Why are you here?” I tell her that I’m worried that my baby is dehydrated. I wait my turn in the waiting room. Owen starts to whimper and cry in this really quiet, sad, pathetic way. It is heart-breaking, and I stare at everyone else in the waiting room with annoyance. They do not have emergencies. I vow that if I ever have an emergency again, I will call an ambulance. I’m sure that would get us seen right away.
Mark shows up and relieves Lindsay. We get called back to a room and wait for a doctor. Owen is still whimpering, and it sounds just awful. Finally, someone pokes in their head and says, “How old is he? Someone will be right in.”
Once the nurses come in, it feels like we’re getting somewhere. They set right to putting in an IV. It’s really hard for them, because he’s so dehydrated. It seems like it takes forever. I bow my head and pray over and over again that they can get it in. They get it. I feel amazingly relieved. I naively think (or hope) that this is all he needs. A bit of IV fluid, then we’ll find out what’s wrong, then we’ll go home. They check his diaper after a bit. No crystals in his pee. “Good,” they say.
The doctor on call arrives. She asks a ton of questions and is reaching to find an answer. She sees a canning jar sticking out of my diaper bag. “Did he have that?” “No,” I reply. “That’s just my juice.” She looks over the teething tablets with Belladonna in the ingredients and chastises me for giving them to my baby. She wonders about diphtheria due to the whiteness on his tongue and his lack of immunizations. I explain that I’m pretty sure it’s from the teething tablets. Owen is admitted to the hospital at midnight. Coincidentally, and quite remarkably, his insurance goes into effect at midnight. He had to be uninsured for one month in order to qualify. That month was June. Now it’s July.
Once in a hospital room, I realize how relieved I am to have handed my baby over to professionals. I don’t have to carry this burden alone anymore. I’m too emotionally exhausted to hover around them much. I disappear to the sidelines for a bit and wait for an answer. Because the doctor is wondering about diphtheria, everyone has to gown and mask up before entering the room and then throw it all in the trash before exiting. Every time. It is dramatic, to say the least. I know my baby doesn’t have diphtheria. I’m annoyed but whatever. At 2:30 in the morning, the doctor takes Mark and I aside and lectures us on the importance of immunizations. “Babies die at this age.” She leaves it at that. I hate her.
We wander out to the kid play area and lie down on the rug, bleary-eyed and helpless. There is nothing for us to do except stay out of the way. The silver lining to Owen’s sad condition is that he can’t cry. He is being poked and prodded by strangers, and he is not screaming bloody murder. Thank goodness. That would be so hard.
The night turns to morning, and there are still no answers. The hospitalist, Dr. Carter, comes on at 7 or so. She reviews his symptoms, talks to us and tells us right away that she thinks Owen has Infant Botulism from ingesting a dirt or dust particle containing the spore. She shows us a print-out of the signs and symptoms. I nod my head enthusiastically, “Yes, YES, this is what he has!!” We also find out that there won’t be any lasting effects. Utter relief fills the room. I want to hug her and kiss her.
Mark’s parents arrive, and they are crushed by the scene. Their sorrow and my joy are a strange mix, and I don’t really know how to deal with it. I’ve been there, and now I’m here. I want them to be here and hopeful with me. It takes time. I tell his mom how awful I feel that I didn’t get him help sooner. She is very encouraging, and tries to make me feel better. I’m very aware of how badly I now stink from the stress. The whole room must smell terrible.
The doctor is optimistic but also needs to rule out other possibilities. She orders a CT scan, some other things I don’t remember and a spinal tap. I have to sign the waiver for the tap. I don’t want to. Why do this, when I feel so certain that he has botulism? Dr. Carter seems like a smart and reasonable doctor. I sign it. I stay by Owen’s side during the other tests, but when it’s time for the spinal tap, I defer to Mark. They all head off to another room down the hall. I’m in the hallway, anxiously waiting for them to return, when they all come racing back into his room like a little pack. In the middle of the pack is Owen, and they are racing to stabilize him. I lose it. A mess of tears. It turns out that he is fine, but he turned ghostly white during the tap and looked like he was going to pass out.
From here on and for the next few days, he is in ICU. They take a stool sample, send it off to Utah. They order an Infant Botulism anti-toxin from California. It costs $45,000 and will be overnighted. The stool sample will be spun down and then injected into a mouse. If the mouse dies, it’s Infant Botulism. It is made clear to me that while he most likely has a diagnosis, ‘he’s not out of the woods yet.’ He might need to be ventilated if things go downhill before the anti-toxin arrives from California.
I sit upright in a chair with him that second night, holding him upright all night. He needs to be as upright as possible, since he’s lost the ability to swallow. “Infant botulism is a novel form of human botulism in which ingested spores of the bacterium Clostridium botulinum colonize and grow in the infant’s large intestine and produce botulinum neurotoxin in it. The action of the toxin in the body produces constipation, weakness (notably of gag, cry, suck and swallow), loss of muscle tone, and ultimately, flaccid (“limp”) paralysis. Affected infants have difficulty feeding and often, breathing. However, in the absence of complications, patients recover completely from the disease.” (www.infantbotulism.org)
The days blend into themselves. There is round-the-clock pumping. Owen slowly improves. When the nurse brings the anti-toxin into the room in the palm of her hand, we all make a mental note that it’s as if she’s carrying a Mercedes. I wonder how she feels, carrying something so expensive and important. My mom, my sister and my brother-in-law have all flown in from Illinois. My mom stays with me. My sister and her husband busy themselves by cleaning our house and washing everything inside of it. Our house has been undergoing renovations, and just days prior to Owen getting sick, we gutted our dining room. My mama instinct is certain that this is how he got sick.
In the eight days that Owen is hospitalized, I go outside one time. I don’t sleep. I’m so relieved that my baby is going to be alright, but I am tired down to my bones. We excitedly take him home (although he still has a feeding tube). I step inside our house, and my excitement instantly fades. I pump while workers walk through the house. Even with the cleaning, it is not homey. It is still getting renovated. There aren’t any nurses helping. We’re on our own. My family gives me permission to cry. I do.
For who knows how long, I walk around as a shell of a person. I engage with friends, but in my heart I feel utterly alone. No one can carry this exhaustion–this trauma–for me. It is just mine. I take Owen in for a check-up a week later. His doctor asks how I’m doing. I look at her. No one has asked me that. Why would they? I tell her I’m not well. I’m exhausted and a mess, and Mark and I have been fighting from the stress. She tells me that we should try to treat each other with grace and writes a ‘prescription’ for fish oil and vitamins. I feel a little bit better.
It will be a long time before I get over this. Babies are hard, sleep deprivation is hard and this has pushed it all to the limit. I don’t really move forward very well until I finally get some good sleep. It seems like that takes about two years.
Now, it’s been five years. I thought I was well past the emotions of that time. Until Owen got sick again. It wasn’t even remotely the same–he was mildly sick for 6 or 7 weeks with mycoplasma (walking pneumonia)–but when we finally realized what was wrong with him and sought treatment, it brought back some intense feelings and emotions. Why didn’t I get him help earlier? Hindsight really is 20/20. Thankfully, he is healthy and vibrant once again.
Parenting is by far the hardest thing that I will ever do. But it is also the luckiest thing, a thing that I will never take for granted.
I know your mom from art classes and church. She posted a link on fb. I was hanging onto your every word, felt like I was suffering through it with you. What a hard, hard thing to live through! You are a good mommy for Owen! Praying blessings on you and your family, Gloris