A Lupus Flare and a Teething Baby.

For the first five months, my baby has been an easygoing, dream baby.  He has slept 12 hours straight through the night almost every night since he was six weeks old.  In fact, he slept so well that from week eight to 12 my husband had to wake him up at night to ensure he consumed enough milk overall (a newborn shouldn’t sleep for more than around four hours without eating).

He is one of the happiest and sweetest babies I’ve known.  At two months old, he drifted off for naps throughout the day with ease.  At three months, he would play on the floor by himself for hours.  At four months, he relished exploring the outdoors with us.

But then at five months something terrible happened to my dream baby: teeth.

 

A Lupus Flare and a Teething Baby.

It’s noon on a Monday and the entire morning has been a blur.  Baby Meena was so hungry this morning but barely drank anything.  He seems to be in pain.  I am having a lupus flare and my brain and body are both seriously out of sorts.

Where is his teether?  I found it.  He drops it.  I give it back to him.  As long as he has the teether he is okay.

 

 

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A post shared by Ava Meena (@mymeenalife) on Oct 25, 2018 at 8:02am PDT

 

He drops it again.  I hand it back again.  Hopefully soon he will be able to pick it back up himself.  But he’s too frantic when he loses it.  We repeat this process over and over again until it’s time for his morning nap.  But he is nearly inconsolable.  We cuddle on the couch but it’s not enough to soothe him.  I quickly clean my hands and then rub his gums until he exhausts himself into sleep.

Stuck on the couch, I text my sister in law.  Is this normal teething?  Should we go to the doctor?  She says it sounds normal.

Forty-five minutes later my morning coffee dictates a trip to the bathroom.  He wakes the moment I shift my weight and the crying starts again.  So much crying.  I decide it’s time for infant Tylenol.  I sit him in his boppy pillow and hope for the best as I get the meds out.  Thankfully he doesn’t spit it out immediately like he did yesterday.

I have to leave him alone for a few moments to make something to eat.  He is crying so loud I can’t think.  Why am I in the kitchen?  Food.  What food am I eating for lunch?  I can’t remember.  Oh, sausage.  It’s not in the pantry.  Of course.  It’s in the fridge.  I manage to get it into the oven with the proper cooking settings.

My brain fog is getting worse.  And I can’t think when he is crying.  Is it time for him to eat again?  I have no idea.  Thank goodness I use a tracking app for his food intake.  It’s hard to tell hunger signs from teething signs.  I check the app.  It’s been three hours, he is probably hungry.  What am I doing?  Getting a bottle.  Right.  A cold one, maybe it will help numb his irritated gums.

I’ve never had to withstand crying like this before.  I’ve had a little dream baby.  A happy and chill little one.  I have always been grateful for that.  When I have a hard day because of my illness it’s almost like he knows and does his best for me.  But I’ve never flared on his more difficult days.  And there’s not before been a difficult day like this.  This day is beyond tough for him.  Perhaps his worst day – aside from the two times he’s received vaccination shots.  But those were momentary discomforts.  This pain goes on and on.  Which I can empathize with.  But he can’t comprehend the reason for his pain, or know that it won’t last forever.  No wonder he is so upset.

 

 

The teether isn’t good enough.  Only rubbing his gums with my fingers provides adequate relief.  But I can’t.  My fingers are swollen and painful from my lupus arthritis.

This morning I tried everything I could think of to comfort and distract him, but my ability to help him is rapidly diminishing.

It probably isn’t as bad as it seems in the moment.  Or perhaps it only seems this bad because my lupus is acting up.  Or maybe my lupus is acting up because of the stress of my baby’s cries over the past few days.  I don’t have enough brain power to contemplate any further.

Dad Meena calls.  Our baby loves hearing his voice and stops crying.  Dad agrees to buy a special teething pacifier during his lunch break.  Bless him.  We hang up.  The crying resumes.

The crying feels like a physical assault.  At moments I cry with him, as I am sad for him but also at wit’s end myself.  I wonder how parents of colicky babies have already endured this for months by the time they have a five month old.  Previously, my baby has never been inconsolable for more than a few minutes – usually at bedtime.  I can’t help but wonder if it’s an act of mercy and grace that my baby doesn’t typically cry in this manner.  This behavior would wear me down greatly, even if I wasn’t so impacted by lupus.

I have to remember not to clench my teeth when he cries.  It will make my chronic muscle pain much worse if I become tense.  I take my breakthrough pain medicine.  I know I won’t get a chance to do my physical therapy routine today.  I use my neck heating pad for a small bit of relief as I try to comfort him.  I want to take a second dose of breakthrough meds an hour later but I can’t risk being impaired when I’m alone with him.

I play with him.  Foot kisses.  Jumping.  Looking in a mirror.  Swinging.  I laugh, he laughs.  Hand kisses.  Flying.  Pretend running.  He is very happy when distracted.  A wall of fatigue hits me.  My joints hurt all over.  My elbow joints can no longer support his 14 lb. weight.  We have to end play time.  He is desolate again.

He yells.  I yell with him.  He thinks that is hilarious.  It is funny – for a moment.  But he’s being so loud.  I can’t think.  I can’t watch tv, either, which is one of the best ways for me to take my mind off my pain, when he is yelling so loudly.

I will remain sane.  I repeat.  I will remain sane.  I can do this.

Normally he would sleep in his crib for his nap.  But today he needs the warm comfort of his mother and also I can’t carry him up the stairs.  Letting him wiggle and cry on my lap while I offer him a comforting hand is all I am able to do right now.  He finally sleeps, until my next bathroom break and my unsuccessful attempt at a sleep transfer.

My pain medication has made me nauseous.  Eating a snack is a difficult chore that I must complete.  I can’t let my energy reserves run too low.  When did basic needs become so unreachable?

I’ve reached a full mental block.  A combination of lupus brain fog, pain, and fatigue.  I can do nothing but hold on and let my baby know I’m here for him even though I’m incapable of comforting him beyond cuddles.  I feel like a zombie.

If it wasn’t for lupus, we could go for a walk.  Or I could rock him for longer.  If it wasn’t for lupus I could take all kinds of measures to ease my baby’s teething pain.  But I have lupus.  And I can’t.

My bird comes to play with us.  It’s a great distraction for Baby Meena and he loves to look at the bird.  Thank you, Koopa.

 

 

My mother in law is free to watch him the day after tomorrow.  I hope I can make it that long without inducing a full blown flare.  Tomorrow I will start a round of prednisone (I can’t take prednisone this late in the day or it will give me insomnia).  Even though I was never able to breastfeed, I now rely on several medications that are contraindicated for breastfeeding just to be physically capable of caring for my baby.  I would have had to stop now if I had ever successfully started.

I am so grateful I’ve finished all my work assignments for the month.  Taking care of a teething baby is consuming me.

I give him sweet potatoes.  He loves them.  He is so happy for a while.  He plays in his crib and takes a nap alone.  I feel like I’ve surfaced for a much needed breath of air.  But he only sleeps for half an hour.

I Google.  How long does teething go on for?  (A long time.)  What are the best remedies?  (Cold teethers and rubbing the gums usually.)  Is teething the only culprit?  (Probably, he has no fever.)  His cheeks are red, is that normal?  (Yes.  It happens because of inflammation in the gums.)  I want to know everything so that I can make sure he is as okay as he can possibly be.  The answers on the screen blur in front of my tired eyes.

Can I make it through this while adequately caring for myself and my baby?  I am doing my best, but I wish my best was better.  I feel like my baby deserves more than I am capable of giving at times.  And while that isn’t an unusual sentiment for a new mom, it can be a true worry for a mom with a chronic illness.

Motherhood is overwhelming.  With lupus, motherhood can actually be physically impossible at times.  My husband and I have a code word for when I am too sick to care for him and he must come right away.  He can’t travel out of town without a backup person to help me.

 

 

I have never been able to stay up with my baby through the night without inducing a flare.  My husband has taken every single night shift since day three with Baby Meena.

Now it’s 5pm.  My husband is coming home.  He is my life boat.  The hours of my day have been lost to a sea of baby tears.  I have managed to keep my head above water, somehow, until he makes it here to rescue me.

Rescue seems to have a negative connotation.  I don’t want my baby to ever think he is a burden.  Rather, it is lupus that makes this a burden too heavy for me to carry at times.

Not all days are like this.  In my (fortunate) case, few days are as hard as this one has been.  There are days where my baby and I laugh together until we cry tears of joy and our hearts are so full we can barely stand it.  In the morning I rush to greet him and in the evening I’m sad to say goodnight.

 

 

(In fact, in the days since I wrote this post, things have gotten easier.  I started a round of prednisone, got a lot of help from my in-laws, and the worst of this teething episode seems to be over.)

But I have to acknowledge and prepare for the worst days.  The phrase “it takes a village” does not adequately cover our situation.  Sometimes I have to call on my family, my friends, grocery delivery services, and my doctors to help me make it through.

Having a baby with lupus is possible for many.  But there are phases, like teething, that may present the most challenging moments you have ever faced.  To every mom, and especially every mom with a chronic illness – Godspeed, good luck, and my whole heart goes out to you.

 

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