Last week I learned something really important about gratitude. I thought I was learning to practice gratitude, but as it turns out, I wasn't really connected to just how grateful that I, (and all of us), should be for things we take for granted every single day. Take breathing, for example. Each day and each night, we breathe. As we dream, wake, grumble through our early mornings, go to work, come home, exercise, party, fight, make up, eat, sleep, and do it all again, we breathe.
This simple act became so salient, so complicated, and so important, when my 21 month old went into respiratory distress on Monday night. He could not breathe. HE COULD NOT BREATHE. As a mother, watching your helpless, frightened, and confused toddler struggling to take a breath, you realize that everything you thought you wanted, everything you thought you were grateful for, pales in comparison to that simple, life-sustaining act we do without even thinking about. I'll start at the beginning of this experience.
Thursday: Jax and I had such a fun time at the Lomita Train Museum with my Dad. The small, gated place was perfect for Jax to run around without me being paranoid that he could escape or get hurt. The weather was gorgeous and sunny. Jax ran all around, saying cute things like, "Twain! Bwack Twain!" He got to climb the ladder and explore the locomotive and caboose. We had a great time. That night, he slept so well that I thought my days as a Rooster Club Mom were numbered.
Friday: Jax woke up after a 10-hour stretch of sleep. He felt a little warm, and I heard a sneeze or two. Oh well, I thought. The sniffles. No worries. All kids get the sniffles. I had even begun to subscribe to a termie momma mantra that I had been hearing a lot lately: "All kids get sick. I don't keep my kids from germs, what's the point?" Basically, I had started to convince myself that a few germs were a good thing. We were over that preemie mom fear of germs, hospitals, RSV, and other scary things. Jax was nearly two years old, after all. (Boy, was I ever wrong!)
Friday afternoon: I had given Jax two doses of Tylenol before I finally took his temperature. To MH's dismay, I had to do this rectally. It was 102. I felt my heart rate spike, but I stayed relatively calm. This was the highest fever Jax had ever had, and I had already dosed him with meds twice. Time to call the pedi, and cancel our playdate with a good friend. We ended up at the pedi by 4pm, and we were diagnosed with a double ear infection.
By the time I got out of that office, and to my drive-thru pharmacy in town, it was nearly 6:30pm. The pharmacy f-ed up, and I was desperately trying to maintain my zen as I drove around the block repeatedly, waiting for them to fill my Rx. Jax was cranky, sick, and feverish in the car, and I didn't want to expose him to CVS. Isn't that the point of a drive-thru pharmacy?! They claimed my pedi never faxed them our Rx (which was a blatant lie; I stood there as she did it). I realized I hadn't eaten since breakfast, and that I was starving.
I treated myself to a Coke and some Jack in the Crack tacos as we circled the pharmacy. I knew the drill. Whenever Jax got sick, he woke several times a night and needed me to hold him. I knew it would be a long, long night, and that Coke would be necessary. (Reminder: MH works nights and is gone from 4pm-3am nightly, so there is really no reprieve. Plus, as all Mamas know, when your sick baby wakes up in the middle of the night crying, he wants YOU!).
By the time we got home with our handy dandy amoxicillin, it was almost 7:30pm. I rushed the baby through dinner and attempted to administer the meds. Apparently, that med tastes like crap. Jax fought, cried, and began coughing and spluttering every time I came near him with the syringe. I tried everything I could think of, and ended up forcing the meds down my poor son's throat, only to have him spit half of it back in my face. Exhausted, I prayed he had ingested enough of it to work, and he went down to sleep. That night, he was up 4 or 5 times, and I was in and out of his room. I finally put him in my own bed (where he has NEVER slept), only to have the coughing and congested snoring keep me awake until he sat up asking for milk around 5:30am.
Saturday: I feel pretty good considering I only got about 2 hours of sleep. Jackson seems a little cranky. I try to administer the meds, and now, thanks to the handy dandy syringe, he now refuses Motrin, Tylenol, and his antibiotics. He runs away screaming at the sight of the plastic dropper. I force a dose, and he chokes, splutters, coughs and stares at me like, "Why mommy?" My heart starts to break. I have this nagging little feeling that something is seriously wrong, but I tell myself it is just that old anxiety stemming from the circumstances of his birth and first year that I need to let go of. I tell myself it's just a cold. All kids get sick. Not everything is a medical emergency. The voice persists and I shove it down into my guts, ignoring it.
By Monday, I insist to myself, everything will be back to normal. Saturday passes slowly. I try to rest during Jax's nap, but the intermittent coughing from the baby's room disturbs my nap...and his. He wakes up cranky, and refuses to eat. At this point, we are almost exclusively back on bottles. This night is a little worse than the last one, with more waking up and more running back and forth trying to settle Jax to sleep. I force a dose of Motrin while he is hardly awake around 1:00am, and amazingly I get it down him.
Sunday: Thanks to the Motrin I think, Jax has slept for a few hours, but wakes up at 5:00am crying. I have heard him rustling around and moaning all night. I worry his ears hurt and curse myself for being incompetent and being unable to administer meds to my toddler son. (How is he stronger than me?!) I send my husband out to get every type of juice, pudding, ice cream and popsicle to mix the meds in, to no avail. The day passes in a frustrating haze of exhaustion and mounting worry. Jax goes down to bed easily, but within 30 minutes, he is coughing and sitting up crying. He proceeds to do this every 30-45 minutes until 6:00am. I am a wreck, running back and forth to his room, and I finally prop him up next to me. His breathing sounds labored, and he is coughing intermittently, but I am convinced it is just a cold. What else could it be? All kids get sick. I toy with taking him to urgent care, but I am so so tired.
Monday: At 5:00am, Jax coughs himself awake. He coughs so hard I can see that he can't even take a breath. He panics, and starts crying, which makes the coughing worse. I grab my keys and race to his doctor, where they give him a breathing treatment. He hates it, and the loud noise of the nebulizer ain't helping. He struggles, and coughs even more. He is still running a temperature, but amazingly, his ear infection seems to be gone. Thank god, the pedi pulls the antibiotic, which is good because apparently, even though I am a highly trained early childhood specialist and behaviorist, I am unable to administer meds to my toddler son. We are sent home on breathing treatments. Jax seems ok until I put him down for bed that night. That's when all hell breaks loose.
Monday night: Jax is coughing so hard, and so often, I can't even count to three between the heavy, deep convulsions that wrack his body. I try another breathing treatment and quickly determine it isn't doing jack. I feel the anxiety bubble up and paint my neck red. I call my MIL who lives a few minutes away and she agrees to meet me at the ER. I tell Jax that it's ok, and mommy will help him. I throw on my shoes, grab my bag, and turn the 7 minute drive to the hospital into a 4 minute race. I hear Jax struggling to breathe the whole way. Oh God.
I fly into a parking space, grab the baby and force myself to stay calm for his sake. It's ok honey, I tell him. I know you are having trouble breathing and the people here will help you. I try to smile at him and I notice he is blue around his mouth. I can hear my own heartbeat and a roaring in my ears as I dash into the ER. The waiting room is full of people. I beeline it to the window and the person there immediately takes notice. He's turning blue, he can't breathe, I yell.
It's like no one else is there but us. The other people are just fuzzy shadows in the background as the admitting clerk yells for a triage nurse, stat. We are rushed back into the triage room and a very calm male nurse begins taking Jax's vitals. This pisses the baby off more, which makes his breathing even more labored. I feel the panic start to overcome me and my voice breaks as I try to explain what has been happening. We try to get an oxygen read on Jax and it stops at 68, which can't possibly be accurate. Then, it bumps to 86, which is low enough to make me start having palpitations. The nurse unzips Jax's car jammies and I can see his chest and abdomen literally sucking in as he struggles for air.
We are taken to a bed separated from another bed by a hanging sheet and they start us on oxygen. A doctor comes and orders a bunch of tests and an IV. I am oddly calm, it is as though I am not really there as I question the doctor. Scary words float around my head, like "Reactive Airway Disease," "Pneumonia," and "Respiratory Distress."
I am sitting on the gurney holding my son as we are wheeled to the x-ray room. I find the mental space to worry about radiation damage. Then, I see the contraption they want to use to get the x-ray. Has anyone ever x-rayed a toddler's chest? The device they use is barbaric. It looks like a plastic mold of a child, with a front and back. Below this is a wooden rack with holes for the child's legs. I am told to stand Jax up in this thing, and they close him into it with his little arms pinned painfully above his head. WTF?! He says, Mama! He starts wailing piteously. I tell the guys they have approximately 3 seconds to get their picture before I rip my son out of that thing. They know I mean business and they literally trip over each other rushing to the press the button.
Jax is now hysterical, and coughing like crazy. I try to calm him and fight tears myself as someone else comes to take his blood. We count to ten several times and he stops struggling. When they are finally done, he gasps, "yay.." in a heartbreaking little voice. Yay. I did a good job, mommy, he seems to say. I cuddle him fiercely, wipe away my own tears, and vow to buy him every damn gaga tuck toy in existence once we are home.
It is now midnight. Someone comes to insert an IV and I kick them out. Give the kid a break dammit. The doctor is summoned to chastise me for refusing treatment. I listen again as to why an IV is necessary. I check Jax's diaper, and realize he hasn't peed in 8 hours. He is getting dehydrated. I agree to allow the IV, knowing my husband is going to flip out when he sees it. My husband is at work, and since we are on one income right now, he can't just walk off the job. MH would have freaked big time and probably would have taken out the x-ray tech, so I tell him to come by on his break, not to worry, and that we should be home before he gets off at 3:00am. In the midst of this, my parents and MIL have arrived, and just their presence helps.
My husband visits on his break and Jax is doing better after the steroid and breathing treatment. I am certain we will be home soon. I send MH back to work, and my parents (man, can they ever party), stay to keep us company. We watch some Thomas and Jax starts to fall asleep in my lap.
A respiratory therapist shows up next, and he is nice, with kind eyes. Jax is given an oral steroid, which thankfully he swallows, probably because he is so exhausted he doesn't have the strength to resist. Now, the RT blows a bunch of stuff in his face, which seems to worsen the coughing and desats on the monitor. For any non-preemie parents, desats are when one's oxygen plummets, and it is scary as all hell to see verification of this occurring as the monitor flashes red and begins to sound an alarm. I hold Jax through this procedure and it is the longest ten minutes of my life. Until the nasal swab. Jax needs an RSV test. I question this too. I am aware that RSV can be deadly to young, early-term preemies and even term babies. But, Jax is almost 2! How could RSV be causing this?
I had pictured a nice soft q-tip gently scraping Jax's nose without even waking him, so I am horrified when I see the giant red tube and collection container. The RT explains that a squirt of saline must be administered high into Jax's nose to get the sample. We hold him down and it takes 3 adults to get a tiny bit of mucous. At this point, I am DONE. I tell the RT that he better have enough to test, because no one is doing anything else to my son tonight. He swirls the material in the container and comments that he has a little and it looks cloudy. This sounds ominous.
The doctor returns to tell me the chest x-ray is clear but that because Jax requires oxygen and breathing treatments, he needs to be admitted overnight. Of course the hospital we are at does not have a children's unit. An ambulance is called to transfer us to Miller's Children's Hospital, in the next town. I groan. This is all starting to sound quite serious. All kids get sick, I think, stifling a maniacal laugh. I text MH and then we wait for the ambulance to arrive. The IV is placed, and it takes two grown men and me to restrain the baby and get in in.
3:30am: Two EMTs show up with a gurney and we strap Jax's car seat to it. He wakes up during these proceedings and I force a bright smile onto my face.
"Wow! Jackson we get to ride in an ambulance!" We wheel the baby outside and he perks up when he sees the ambulance.
"Ambal-ence!" He says excitedly. "Fire Tuck!"
The EMT assures me that all kids fall asleep immediately when riding in the ambulance. I should have bet him ten bucks to the contrary, because he's shaking his head in disbelief when we roll up to the hospital and Jax says, "Yay! Ambal-lence!"
"Can't believe it, he's the first one to ever stay awake," he says partly to himself. Ha! Hasn't he heard of the Rooster Club?!
We are admitted and we make up the chair-beds. The crib looks like a jail cell with its metal sliding sides. I worry for a moment thinking that Jax will never want to lie in this unfamiliar contraption. But, I force myself to smile again and ask him if he is ready for night night. I had the sense to grab his blanky on the way out of the house and he cuddles it to him and says in a tiny, exhausted voice, "Night night? Yay." Amazingly, he falls asleep immediately. Even the head Rooster can't stay up for 24 hours! (At this point I am breaking my Rooster Club record, and when it is all said and done, my longest stretch of being awake will exceed 33 hours).
Now, we settle in to wait for the doctor. He tells me is it rare for a child this age to be hospitalized with RSV, but that in Jax's case he has developed bronchiolitis. Treatment is breathing treatments every four hours, and steroids every 12. Vitals will be taken every 4 hours. Blah, blah, blah. I think I talked to him but things started to glaze over. I send my party animal parents home. MH arrives and he is pissed as he stares at poor Jax, clad in his hospital gown and diaper, in his baby jail cell.
MH has some old, gnarly memories of this hospital. He used to come here as a child to see his sister, and it clearly traumatized him. Now, he gets to see his son in the same place. Jax begins coughing and he desats. I am delirious but adrenaline I did not know I still had courses through me and I put Jax over my shoulder, trying to find a position that will ease his suffering. He is exhausted, from the nonstop coughing and struggling to breathe. His little ribs contract hard as he gasps for air.
I am a machine, a patting, soothing, machine whose mind has thankfully turned off. Every 30 minutes, I pull Jax up into my arms to help him through the coughing fits and the wheezing, the gasping, the fear. A sob escapes me. Then, MH asks me if Jax is going to die.
"No!" I hiss fiercely. "Don't you ever say that again! Pull yourself together!"
Then, I pull the thin hospital blanket over my head and cry silent tears as Jax labors next to me. How long can he endure this? How long can I?
Tuesday: It is a haze of coughing, desats, breathing treatments, and trying to rest in between. It is a nonstop revolving door or staff coming in and out. Family visits and brings food that I can't seem to stomach. We had two or three severe spells where Jax coughed so hard and so long, that I started crying for someone to help him as his little body convulsed. Then, he would say, "yay" in a barely audible voice as he fell back on my shoulder, too exhausted to move, waiting for the next bronchospasm to hit. There was nothing we could do, but try to force more steroids down his throat, and watch, and hold him, and wait. At some point, Jax pulls his IV out and I don't even notice until the nurse points out the blood dripping all over him, and me.
Blood dripping is an interesting omen. I realize at this point that I am 5 days late. I agonize over the possibility of having to go through all of this with another child and I know I just can't do this again. I lose it, and MH gets me a test, which thankfully is negative. I spend the night wide awake anyway, thinking about the wine I drank two weeks ago, and trying to recall where I stored the baby swing. Every few hours, someone comes in, turns on the floodlights, and disrupts my poor son's sleep with breathing treatments, medication, and taking his vitals until MH is ready to beat someone to a pulp.
Wednesday: Jax's oxygen has remained stable. He is eating a little. A nurse comes in and tells me he must be pretty strong because most kids admitted in his shape are there for a week. Our doctor has told her Jax will be going home this afternoon. My husband is overjoyed. We wait for hours until the doctor shows up. Release, sweet release!
On the way home, we grab huge frappucinos and put Jax to bed. Then, I sterilize EVERYTHING. All the toys. All the clothes. Everything that has touched the hospital. I shower for the first time in days. I try to rest but I am so amped up, listening to the rattle in Jax's chest as he breathes. He sleeps in my bed because I am too scared to have him away from me. He seems to need to be in contact with me too. he sleeps cuddled against me for the first time, and I picture our souls and auras entwining, mine feeding his love and strength, and health. Air goes in, I think. Air goes in.
We head to the pedi the next day, and she expresses great sympathy about our ordeal. I even see tears in her eyes. She tells us to continue the steroids and breathing treatments until the following Monday. Then comes the kicker: We are on house arrest for a month. Jax's immune system is compromised and getting sick again would be big trouble. I feel like I have regressed back to our early preemie days, when no one could visit. I realize I had been trying to convince myself that we were just like everyone else. I was trying so hard to ignore that little voice that never steers me wrong. Don't worry about the germs, not everything is a medical emergency, I told myself. Now, I feel like the wind has been taken out of my sails.
Jax is back to being skin and bones. He won't eat, and I feel the familiar anxiety about his weight and his failure to thrive designation return full force. I had just started to let these worries go. Will we ever be "normal"? I fall into a little depression. I lie awake blowing my nose and sneezing, because I now have RSV. I cry a little. Then, I realize that Jax is sleeping peacefully for the first time in a week. He can breathe. Oh, thank God, he can breathe.
We have so many things to be grateful for, but sometimes we forget about the most important ones. We can breathe. We can see. We can hear, and feel, and taste. We can talk, and laugh, and decide what happens to us. I am grateful, so so grateful, for so many things...
I am grateful that my son can breathe.
I am grateful for our medical insurance.
I am grateful for my parents, in-laws, and MH.
I am grateful for my friends, and everyone who sent positive vibes during this experience.
I am grateful that I am not at work, because truly, I am needed more at home.
I am grateful to be alive, healthy, and supported by so many.
I am grateful that my son can breathe....