Saturday, November 19, 2011

GI Update: The Good, The Bad, and The Mommy

We left Dr. Liacouras several weeks ago with a mandate to stop feeding our son.  This is, at the same time, easier and more difficult than you might imagine.


Easier, because he's little.  He can't really sneak food, he can't beg us to let him have food, he gets what he's given.  End of story.  Except that it isn't.  He's not under my watchful eye all day.  We now have to worry about him being "accidentally fed" at school.  Don't laugh, I'm not joking.  I wish I were...  Aidan is prone to quietly scooting around on the floor, hoovering up other kids' leftovers.  And if we think it's hard now, it's only going to get worse when he transitions up to the next classroom.  Kids sit places and eat things at specified times.  Kids that aren't my kid.  My kid will sit - I don't know - in the corner by himself?  Licking walls?  Can't worry about that now. 

The good:
- Tom's insurance came through with 43 cans of Neocate.  (Because life is lifey, Aidan prefers Elecare.  Tough crackers, kid.  Tough foodless crackers.).  It only took two weeks of worrying and wondering where his next bottle would come from, but we won't have that particular worry for a couple of months.  This is especially amazing since most insurances won't cover any formula at all, even when there's a serious medical need.  UHC apparently recognizes the seriousness of the FTT diagnosis, and we now have formula galore.  For now.
- Aidan has stopped fighting his prilosec.  It may taste nasty (anything compounded with sodium bicarb would be pretty foul) but he's really lowered his standards and now he (usually) takes it like a man.  I'm pretty sure his taste buds have died.  During yesterday's barium swallow, he was given a 2oz bottle of barium and we were told he needed to ingest about half an ounce.  He gulped down all 2oz and cried when there wasn't more.

The bad:
- Our boy won't drink.  His MO is to wait until he's STARVING, and then drink just enough not to be starving anymore.  He needs 900-1100 calories every day.  We are fighting just to get 500 into him.  And our bar (and expectations) has fallen so low that if we do get 500 calories in, we consider it an enormous win.  It's usually closer to 400.  How will he ever grow?



The ugly:
- Mommy.  I'm the ugly.  I'm worried about him and angry about everything and mean to everyone.  Everyone's helpful suggestions infuriate me (No, I can't forcefeed him every meal via medicine dropper.  No, I can't flavor it with all of the food he's not allowed to consume.)


Everything everyone says makes me angrier.  "My son was always small, and now he's 6' tall."  Oh, okay.  I'm sure this is fine then.  I mean, as long as it worked out for you.  "My daughter's a picky eater too.  I understand."  No, sorry, you don't.  He's not a picky eater.  He's prohibited from eating.  This isn't the same thing.  Not even close.


I am part of a group of 250+ moms of children exactly Aidan's age.  I find myself drifting further and further away because I have less in common with them with each passing day. 
  • A handful of them are pregnant again, already.  Many of them are actively trying to conceive.  The thought of having another baby who could have the same (or worse!) problems fills me with dread.  I love my son dearly, but I am 100% certain that I do not want to do this again.
  • Normal daily discussion often centers around food.  Not only do I have nothing to add to this conversation, but I'm also angry and jealous about everything they say.  There are lots of "I have a picky eater" complaints.  I want to physically shake some understanding in to those mothers.  I would give anything for a picky eater.  Because a picky eater is still an eater.  I know this will come in time, but the "right now" is so hard.
  • When "what's for lunch?" isn't on the menu, there's a lot of conversation about developmental milestones.  Of course there is, 250 parent of kids born within weeks of one another are absolutely biologically required to compare notes.  But again, I have nothing to add.  Because of the months of time Aidan spent in food/reflux-induced pain, his development really slowed down between 6 and 10 months.  Aidan is gross motor delayed and speech delayed.  Not a ton, but enough.  His peers at daycare are passing him by, and it's so, so hard to watch.  It's even harder to read "my baby doesn't do enough tricks!" threads.  No, he doesn't clap.  He won't wave.  He won't give you a high five, blow you kisses, or tell you he's soooo big.  But boy can he contort his body to avoid the pain of acid reflux.

So if you haven't guessed, the hardest part is definitely staying positive.  Recognizing what he's great at, where the good news lies, and how to celebrate all of the amazing things about him.  I need to do more of this, I know.

Sunday, November 13, 2011

Here's how it all went down...

We've had a long week.  I've spent a lot of time thinking and wondering and trying to figure out how everything went so wrong so quickly.  I'm getting ahead of myself though.

For the past week or so, we've been struggling to get enough formula into Aidan.  It doesn't taste great, he's not old enough for flavor packets, and it's starting to seem like he's associating eating with misery.  Eating isn't interesting or fun, so he's disinterested.  The new MO is to wait until he's starving, then eat just enough not to be starving any longer.  He needs to consume 900-1100 calories/day, and we struggle to get 500 into him.

(enter pure speculation)

On Monday, we believe that Aidan accidentally ate at school.  I know, I said "accidentally ate."  My kid is notorious for scooting around on the floor while others are eating and licking up their crumbs.  And "crumbs" in an infant room can be a pretty substantial meal - on any given day, cheerios flow freely and pancakes, waffles, scrambled egg yolks, toast, and cheese are never in short supply.

(not so speculative)

Tuesday brought misery, screaming, and more misery.  Even his teachers commented that they hadn't seen him so miserable in weeks.

Wednesday, more screaming, more misery and I thought I should have his ears checked.  Because, you know, it's an easy fix.  So an hour after bedtime, we sat in the pediatrician's waiting room, wishing for ANYONE to be on late duty other than Dr. B.  But no, of course not.

Dr. B is kind of a an enormous jerk.  He disapproves of the way we are proceeding with the GI (he recommended one GI.  We went with another.).  He disapproves of feeding tubes (which we'd like to avoid but will certainly do if we need to.).  It was a very negative visit in general, but he diagnosed an early ear infection and prescribed antibiotics.

Straight to Rite Aid at 8:30 at night to fill the Rx, where the careless pharmacist mislabeled his bottle.  Thanks to some mom-vigilance, Aidan wasn't double-dosed.  Thanks a lot though, Rite Aid.  Wednesday night was screaming, screaming, and more screaming.  Refusing bottles, but screaming until he passed out.

Thursday morning brings more of the same.  He won't eat.  Won't even open his mouth.  And everyone says that when he's hungry, he'll eat.  Only, he doesn't.  Not at school.  Not at home.  Not at all.

By Friday, he's getting dehydrated.  No wet diapers.  No energy to do anything but cry himself to sleep.  I have to do something.

90 minutes we wait for the GI.  The GI, who barely looks at him, doesn't examine him, and pronounces him "fine."  He orders up an Upper GI and a Scope, and says we'll "deal with feeding" later.  He's not worried.

I just about lost my mind.  I somehow found myself in the parking lot of the Pediatrician's office, waiting for them to open from lunch.  When they did, I brought my screaming, whimpering, hungry boy in and refused to leave without help.

Two hours later, we were finally in with our very favorite nurse practitioner.  She determined pretty quickly that it was the amox that was causing the food refusal.  Specifically, the red dye in the amox.  It seems pretty obvious now that I"m reading it, but let me assure you, it wasn't super obvious to us.  Probably because it came on the heels of what we believe was an accidental fooding.

We discontinued the amox immediately, and within about 12h, he took a bottle.  12 more hours and he was happy, eating, and enjoying life again.

This week, we hope to regain the half pound that he lost last week.  We also need to get his Failure to Thrive labs done (another story for another post), and schedule his Upper GI and Scope.

Monday, November 7, 2011

Things I'd love to tell you

It's been so long since I've posted a real update, and there are a slew of things I'd love to tell you.

- Things on the medical front are wonderful - we had a few little bumps in the road, but Aidan is on track and doing wonderfully.
- Because of our medical speedbumps, I've had to give up nursing - but it's been a wonderful and freeing thing.  I enjoyed the time I was able to breastfeed, but it's come to a reasonable and logical conclusion.
- My mental health has never been better - with things going so right, I can't help but be deliriously happy :)
- I've been surrounding myself with good friends who keep me grounded, sane, and laughing.
- I totally don't even notice the arthritis anymore.

I would *love* to tell you all of those things and more.  I'd really love to.  But that's not reality - not even a funhouse mirror "kinda sorta" approximation of reality.

The reality is, things aren't going well.  As a human adult/wife/mom, I am falling apart.

As you probably already know, we are really struggling with Aidan medically.  He's been taken off food and put onto Rx formula.  Feeding is a nightmare that really requires its own post.  Suffice it to say, for now, that he's barely eating and is only getting about half of the minimum caloric intake he needs.  Nothing we try is helping, and we've tried pretty much everything.

Because of our medical mishaps, I've had to stop nursing.  It's painful (yes, still), and it makes me miserable.  This is not how I wanted this to end.  I miss it, a lot, and even though it's wonderful to see him so much happier, I am feeling worse and worse about not nursing.  I feel like he doesn't need me anymore.  I know how stupid that sounds, but there you go.

I'm miserable.  I love my husband and son but I hate my life.  I don't want to blog or take pictures or make memories, because I don't want to remember this time.

I've been pushing all of my friends away.  Most people don't understand or know what to say.  And I don't feel like a good enough person to listen to other people's problems right now.

And I'm still in awful pain, all the time, unless I'm on meds.  I'm 27.  It's really just not fair.

Sunday, November 6, 2011

HM4HB

Packing you up, all snug and ready to travel.  I don't want you to be too warm.  I want you to get where you're going, because you can do some good there!

I'm talking, of course, about the last of my pumped, frozen milk.

After getting the crushing (I'm not being sarcastic.  I have tears in my eyes as I write this.) news that my own baby can no longer nurse or drink my pumped milk, I immediately resolved that what was left would NOT go to waste.  I asked around and ultimately posted on Philadelphia's Human Milk 4 Human Babies (HM4HB) facebook page.  A quick blurb letting potential milk needers know where I live, how much I've got, and that I'm eager to find someone who can benefit from my stash.

I almost immediately got a response from a young mother hoping to have my milk for her baby girl.  The baby was born a bit smaller than Aidan, but was diagnosed with IUGR and was having growth problems as an outside baby.  Some tiny (imagined?) thing nagged at me though.  I found myself picking apart her story.  She friended me on facebook and I was suspicious of everything about her.  No recent pictures of the baby.  Link to a blog that hadn't been updated in a long, long time.  All of this screams "stressed mom of high-needs baby", but it just didn't feel like the right fit.

A few clicks around the site brought me to Anya.  Surgeries have prevented her from producing milk for her sweet little boy, Tommy.  Tommy is so tiny and so new, and I'm so, so happy to help him thrive, even in a teeny tiny way.

I'll be honest, it really made me wish I was still pumping and storing and had more to offer.

Wednesday, October 26, 2011

How to fail a hearing test (and drive your mommy over the edge in the process)

Hearing Test day finally arrived and we really weren't too worried.  Aidan has been off food for over a week and the improvement in all of our day-to-day lives is profound.  Aidan is gaining weight (7oz in 9 days - which is ENORMOUS for him), starting to explore sounds that aren't ear-splitting screams, and we are hopeful that he will start making progress on his motor delay.  Now that the screaming has subsided and the babbling has begun, we aren't concerned about his hearing anymore.  He hears.  Of course he hears.

Unless, of course, he... doesn't?

Without further ado, Aidan has some thoughts on how to fail a hearing test while pushing his mommy over the edge in the process.  His thoughts, I swear.

1. Feign alertness early in the day.  This takes some planning ahead, but it's important.  You absolutely must ensure that daycare does NOT put you down for a nap before your mommy comes to get you.

2. Lose your mind in the car.  If you have successfully avoided your morning nap, this one will handle itself, really.  If you do this properly, your mommy will probably get very confused and park at the wrong building.  You'll be late, your mommy will be frazzled, and the receptionists will be surly.

3. Decide you're hungry and you just cannot wait.  Even if you've just eaten.  Even if mommy can hear your lunch sloshing around in your tummy.  Doesn't matter.  Eat.  Slowly.

4. By now, your mommy will have gotten you in for the test.  That's okay - you can sit still  for a few minutes.  Look precious and adorable and let the nice doctor do her thing.  This should convince everyone that this is going to go well. Fools.

5. You will be taken into a funny little room.  The doctor will go away and talk to you from wherever she is.  Try really hard to play with mommy even though the doctor told mommy not to play with you.  It won't work, but this is key in the quest to push her over the edge.

6. It's okay to look at the spot that the noises come from.  It's even better to look wildly around the room as though the sounds are coming from everywhere.  It's even better to pretend you don't hear anything at all, but oh look, isn't this invisible speck of nothing on the highchair tray interesting?

7. Stand your ground.  You might be tempted to cooperate.  Please don't.  Mommy likes when you drive her crazy, I promise.


So that's more or less how our trip went.  Aidan definitely hears speech and speech-level tones, but he either cannot hear the other three tones, or cannot be bothered to respond to them.  My suspicion is that he's just not interested enough to respond, but ultimately, we won't know until after his next test in early December.

Always something, bug.  Always something.

Monday, October 17, 2011

Our boy? He brings the drama.


The fact of the matter is that our son isn’t growing.  He’s such a beautiful boy – and smart, and funny, and silly.  And we know that he’s small – but don’t good things come in small packages?  The pediatrician is “let’s keep an eye on this” concerned – certainly not “Danger, Will Robinson!” concerned.  So we take comfort in knowing that they do this for a living – if they’re not worried, we shouldn’t be either.  Right?

The thing is, we’ve known for some time that he’s not developing quite right.  Other babies happily chatter away while our boy is silent.  Totally silent unless, of course, he’s screaming.  And scream he does, at the top of his lungs, and we’ve begun to worry that he will damage his hearing.  Other babies are scooting and crawling and exploring.  Our boy would prefer to stand.  But he laughs, and he’ll initiate and sustain eye contact, and he’s so clever – no one is concerned.  Every baby’s different, right?

As he nears his 9 month birthday, frustration is mounting.  He has seen the allergist, who assures us that he’s fine.  No anaphylaxis, no worries!  Try re-introducing everything!  But the list of things he can’t tolerate grows ever-longer (Bananas.  Soy.  Milk.  Eggs.)  We can no longer figure out what’s a new reaction and what’s a “there’s too much crap in my body” reaction.  He’s seen the pediatrician, who assures us that he’s developing well.  But he continues to fall behind his peer group at school.  We’ve had enough.  Someone needs to help him. 

So at 9.5 months, he is evaluated by Early Intervention.  They listen, and they observe, they play with him, and they talk with us.  After a few hours, we finally feel that someone is seeing our son – not the happy, curious, “Hey it’s a new place, look how distracted and quiet I am” boy that the pediatrician sees.  The boy that lives at our house, the one that struggles to eat and refuses to bend his limbs and waist.  The one who cries miserable tears for hours because he is hurting and no one is fixing it.  The boy who throws up most of what he eats and has reflux so severe that he must think we’ve been feeding him fire.  They saw *that* boy.  And they want to help.

The report comes.  His fine motor skills are perfect.  His cognitive development is wonderful.  That boy is *sharp*.  He’s displaying a lot of skills in the 11m+ range.  But he is verbally delayed.  And he’s quite gross motor delayed.  And, they tell us, if we can’t get his food/reflux problems under control, he will continue to fall even further behind.  That’s enough to light a fire under us.  Someone HAS TO help.

Physical therapy for his torticollis (which is so far down the list of things that we’re trying to handle, I’m glad someone else thinks it’s important enough to address.).  Occupational therapy for his motor delay and verbal delay.  Feeding therapy.  And please, find someone to help with food.

Half a week later finds us snuggled into the car at 6:15am, heading to CHOP.  (Have I mentioned how fortunate we are to live so near to so many wonderful doctors?  Very.  That’s how fortunate we are.)  We see a brusque and busy but very smart doctor who wants to go through everything all over again.  I’ve told this story so many times to so many doctors, I’m not sure I can tell it again.  But I do, because maybe this time it will help.  Maybe I know something that will help them figure out what to do.  So I tell it all again, and this guy listens.  He listens to the whole thing, and here’s where it gets exciting – he knows what to do.

So, yes, he has reflux, and we will be moving on to a third reflux medicine in hopes that it helps.  (That last one?  The one we filled five days ago and paid $110 for? Can’t use that, it has milk protein.  Dummies.)  Fingers crossed that Prilosec brings him some relief.  But reflux is a drop in Aidan’s misery bucket right now.  This is where our other doctors have fallen short.  They have gotten so hung up on treating reflux that they haven’t bothered to look at anything else.  This new doctor?  Not so easily sidetracked.

He has (and I quote) “something terrible happening with food.”  The doctor believes he has some serious nontraditional food allergies (which we’ve suspected from the beginning) that are causing him not to process food very well.  They think that his allergic reaction is internal inflammation, which causes him to be in fairly constant pain (I’d scream too) and prevents him from taking what he needs from the food he does eat, hence the poor (no) growth.  We don’t know at this point what he’s allergic to – could be one thing, could be everything.  We just don’t know.

We will be discontinuing the prevacid and starting prilosec.  From there, our path forward is to remove all food from his diet.  All.  Everything.  No crackers, no rice puffies, no yummy yammies.  Nada.  For now, solid food will be replaced by a purely liquid diet consisting primarily of elemental formula (we will try Elecare and Neocate and see which he prefers).  We are allowed to attempt to continue nursing in addition to the formula for two weeks, but if he hasn’t made significant growth progress in that time, he will be put on formula alone.  Formula that is $40/can, and a can is a 2 day supply. 

He will be seen at CHOP every two weeks, and in 6 weeks we will regroup to figure out what to do next.  Our hope is that he begins to grow, and that we can talk soon about re-introducing food and moving away from formula.

So that's the story.  That's why I haven't updated - it's not too exciting to post the same growth stats every single month.  I promised myself today, as I drove my silly monkey back from CHOP, that I wouldn't forget to post the happy things - even when we're not feeling upbeat or happy.
Please note:
- I do not want to hear that you "don't see what the problem is" - However often it is that you see him, you don't live with him, and you don't know.  I appreciate your faith in his absolute perfection, but please trust that we're doing the absolute best we can for him and we aren't subjecting him to all of this because we enjoy it.

- I do not want to hear how your friend's kid didn't speak until age 6, and she's fine, so delay-shmelay.  If your friends didn't get their nonverbal six-year-old some help, they are negligent.  We would prefer not to be negligent.  Just a silly little thing we decided at some point, I suppose.

- I don't want to hear how much worse it could be, and how lucky he is.  These are our problems, and they're pretty huge and soul-crushing to us right now.  Let us feel the way we feel, please.  It's normal and healthy.

- This is a rare one for me, so mark your calendars.  I'm sorry.  I don't apologize unless I mean it, and today, I do.  I'm sorry for being snippy and short and dismissive.  This is a lot for us to wrap our heads around, and to put it simply, I'm cranky.

We will be okay.  I know we will.  We are looking into some different ways to get sample cans from doctors offices and the manufacturer.  We are looking into whether or how to get insurance to cover it.  I have no idea how we're going to find time to take him to CHOP every other week, or do PT/OT in our house every week, but we will figure it out.  There's always a way.

Monday, September 12, 2011

The very worst day…



It’s Monday.  Mondays are, in our life, the very worst day.  Our weekends are so busy and crazy and fun that we don’t have time to think about the upcoming week at all.  My baby and I have two whole days to fall in love with each other all over again.  Two days of hugs and kisses and silly faces and no bottles and no breastpumps .    But then we wake up, and somehow it’s Monday.  The world’s still happening and we have to rejoin it.

And Mondays are so, so hard.  There are so many Monday-specific tasks.  Daycare needs clean clothes and bibs and sheets and blankies.  Snacks and mealplans and reports of how we felt all weekend.  Liquid gold needs to come from the house to the car to the office (people call breastmilk “Liquid Gold?”  Oh.  I meant Diet Coke.).  And work is no calmer - extra-long meetings and plans for a busy, busy week.

Sometimes, life throws a wrench into an already difficult process.  Sometimes, like Today.  Today was Miss Aurora’s first day back from Maternity leave.  And that means it was Aidan’s first day being dropped off with her.   She called him “Ryan” when we arrived, and I knew it wasn’t going to be pretty.

For starters, she’s a stranger.  She reached for Aidan as she told me that she’s visited to play before, so everything would be fine.  Aidan wasn’t buying it.  No familiar face to giggle a “good morning” to.  No comforting arms to offer a hug, no predictable hands to wipe away tears.  And it isn’t that Miss Aurora isn’t wonderful.  I’m sure she is!  But a new face on a Monday is just too much for little llama.  Llama llama misses mama!

I think the hardest part is that his teachers have their own lives on Saturdays and Sundays.  Two entire days to forget all of the terrifying, important things that make Aidan’s day-to-day life happen.  And when it’s someone new, the stress begins all over again.

What if they’ve forgotten how important it is to check him for fever.  Do they remember that he needs Tylenol immediately if he’s feverish?  Has someone told the new teachers that he needs to be watched during mealtimes?  He sits so close to the other babies that he can easily grab their food – what if he grabs something he shouldn’t have?  Will they remember to give him his Benadryl if he gets hives?  Will they think to put his eczema cream on if he’s itchy? 

Here’s to Tuesday.  It’s always easier on Tuesday.

Monday, August 29, 2011

Stolen Moments

Stolen Moments.  Or, not stolen exactly.  Given?  A gift from the otherwise hideous wench, Irene.  Repayment for taking our power, fermenting our food, and ruining precious ounces of breastmilk.

In a terrible, horrible, no good, very bad twist - Irene also absconded with power at work.  Four frustrating hours spent on the road and far too many frustrating hours wasted on hold with Verizon.  Without getting too far into it, I'll just say that it was stressful, and I know others had it worse.

Still, all of that means that I got a few moments back.  Moments that would normally be spent sitting in traffic, hoping against hope that I can get home faster than those blue-gray eyes can close on the sunset.  I got some of those back, and I spent them picking my sweet boy up from school.  His face lit up when he saw me - it's so, so rarely me - and those chubby little meathooks found their usual place (one hand - shirt.  other hand - ear.) in no time.

It's moments like this that I live for.  Little moments, promised elsewhere but unexpectedly reclaimed and given to the person who deserves them most.  One day I'm sure I'll want my moments to myself.  A pedicure, a margarita, a childless hour at the gym.  But today's not that day - and my suspicion is that tomorrow isn't, either.


Stop reading here if happy posts are your thing.


You didn't stop reading?  Can't say I didn't warn you...


I'm struggling.  I'm struggling a lot, actually.  Mothering a newborn? Doable.  Returning to work and leaving my 11 week old son with strangers?  Done and Done.  But right around the time of Aidan's half birthday, things changed.  Lots of things changed, in fact.

1. Daddy's job changed.  Last year, Tom worked for a Cyber School and was able to stay home with Aidan 3 days per week.  This meant 2 days of daycare, but I could handle that, because that's still FIVE days of parental care every week.  This year, Tom still works for that Cyber School, but his schedule has changed in such a way that he is no longer able to care for Aidan while working.  We knew this might happen, but it's been very difficult anyway.  Finding a new daycare was difficult.  Affording a new daycare was even more difficult.  Can't anything ever be easy?

2. New Daycare.  Aidan started at his first daycare when he was 11 weeks old.  I worked so close by that I could easily visit him every day at lunch, and he was only there twice a week anyway.  It was ideal, except that as he grew, they continued to treat him like an 11 week old.  When it became clear that my curious, inquisitive 5 month old was still being left to entertain himself in the swing all day, we knew things needed to change.  As we wrestled with what to do, #3 happened.  See below.

3. Mommy lost her job.  I have spent most of my career at Fiberlink, so the layoff was a tough pill to swallow.  At first, anyway.  The first day was baffling and scary and overwhelming.  The next day was better.  And the day after that, it sunk in that I could take my time looking for a job.  I could stay home with my little boy.  It's what I've always wanted!  Suck it, daycare!  Nobody loves him like I do!

Aidan and I had a really, really awesome month together.  Then, we all went on a vacation to Disney World.  Life rocks, right?  Right??  Then #4 happened.

4. Mommy gets a new job.  I said I wasn't looking for one yet, and I wasn't.  I was going to stay home with little bug until fall.  Maybe winter.  But I was open to the right opportunity magically appearing and smacking me over the head.  I mean, come on.  That doesn't actually happen, does it?

Yeah it does.  It all immediately felt like a fit.  The job, the company, the work, the people.  It felt good and comfortable.  And now?  6 weeks later?  Still good.  Still comfortable.  Ramping up and learning what makes this place tick and how to tick with it.  Sounds great, right?  Except.  Except, except, except. Here's where it gets tricky.  Because I like this place, I like my job, I like my colleagues, I'm feeling positive about my professional future.  Except...

This place is located on the freaking moon.

 I'm being dramatic of course, because it isn't actually on the moon, it's just in Bala Cynwyd.  But some days, I honestly think it might as well be the moon.

#4 has brought me to my new normal.  Six weeks in, I guess I really do have to embrace it as the new normal.  We are up before 6 so that we can leave the house before 7 so that I can get to work between 8 and 9.  If any of this doesn't happen according to plan, if I'm so much as 15 minutes behind, I will be late for work (which starts at 9).  The traffic I sit in every morning  makes me question my sanity and my life choices.  At least once every morning, I swear that I am never doing this again.  And then I'm at work, and it's busy, and I don't find the time to pump, and I'm not pumping enough for Aidan, so I will have to trade precious sleep for an extra pumping session.  I've added a pumping session at 7:30.  Yes, this means I pump while I drive into work.  Not my finest half hour, to be sure.

At 5:30, it's a mad dash for the car.  No time for errands, and I hope we don't need groceries, because I've got to hurry up.  These 15 miles will take me an hour, at least.  If I am fortunate enough to get home by 6:30, I am rewarded with a sleepy smile from a boy desperate to get into my shirt.  And I get to see Aidan, too.  (ha...).  On those lucky nights, we spend half an hour playing and feeding and maybe enjoying bathtime.  Then it's bedtime for monkey, and mommy's got to get busy.  Dinner to make, dishes to wash, bottles to clean, pump parts to sterilize, milk to freeze, school bags to pack, laundry to do, house to clean, and sleep to fight while pumping.  And suddenly, it's midnight.  Have I seen my husband today?  Did I shower?  How is it midnight??


Things will get better.  I know they will.  We'll find a routine, and hopefully it won't be as grueling as this one.  And until then, I'll keep living for the little moments that are unexpectedly given back.  Like this moment right here.  I used it on this blog post.

Thursday, August 18, 2011

The thing that really did send us to the ER


A tiny, hot hand is curled around my finger.  The other is desperately clutching a damp muslin security blanket.  I remember buying that blanket, long before Little Bug was born.  I never envisioned that he’d be holding it while he was this sick, and I was this scared.  I think to myself that it’s probably time to wash Mister Blanky, but Bug has it in a death grip and it’s giving him some small comfort, so I’m happy to let him keep it.

It’s funny how much personality is packed into 16lb 7oz of boy.  We spend most of our time dealing with Monkeypants, a wild, cheerful, silly little thing that blows raspberries and laughs with his whole entire body.  And then there’s our Baby Bug.  Bug comes out when he is sad, or scared, or not feeling well.  He burrows into my chest and makes himself as small as possible, all while making the saddest sounds imaginable.  And the faces – oh, the faces.  But we’ll get to those.  All in good time.

This week, Daddy is away for work, and it’s just Mommy and Monkey.  Best buds.  Monday evening finds us singing silly songs and taking silly pictures (do you know what it looks like when a monkey outgrows a size 2 diaper?)


Bedtime comes at the usual time, 7pm, and Monkey and Mommy coo at each other over one last tummyful of milk.  Then Monkey stretches, yawns, and tries to roll onto his side.  It’s sleepy time.

Fast forward 90 minutes.  I’ve done dishes and packed schoolbags, and am just sitting down to a lovely homemade flatbread pizza.  There’s a blood-curdling scream over the baby monitor, but the mama in me would have heard that little voice even if I had been on the moon.  This is not our usual “but mama, I don’t *want* to be in bed” cry.  Something is wrong.  

I head to his room, wondering what has managed to go wrong now.  Is there a little foot stuck between the bars of the crib?  Has Mister Blanky been tragically lost in some far-flung corner of the crib?  Is it another of the ever-present night-terrors that plague my household?  When I reach him, it’s immediately clear that something is wrong.  This isn’t my Monkey at all.  This is my sad, scared, hurting Little Bug.

I pick him up and hug him – normally a no-no in our Ferber-friendly household.  His tiny body is hot – hotter than should be possible in our generously air-conditioned apartment – and I wonder to myself if we’ve finally come across our first fever.  The ridiculousness of that thought won’t really strike me until later.  For now, I’m just thinking that we’ve made it to another milestone.  Sick baby?  Check.

A quick check with our trusty Temporal Artery Thermometer reveals that he is feverish.  103.  Nasty and uncomfortable, for sure, but nothing too scary.  Nothing Tylenol won’t fix, right?  I lay him down in bed while I dig up some infant Tylenol, and when I return, he has thrown up.  It’s everywhere, and he’s miserable.  I mop things up as best I can while holding him, trying to comfort him, and hoping I don’t go deaf.  The volume in this household is unfathomable.  He takes the Tylenol well – he has always enjoyed the taste – and I walk him around the house bouncing him gently, just the way he likes.  It isn’t helping.  He’s still screaming, and he’s so, so hot.  His temperature is edging upward and he’s too sick even to care that I’ve gotten out the dreaded rectal thermometer.  103.6.  

And then it happens.  I’m holding him, and we’re walking, and he’s crying, and suddenly it all stops.  His body goes rigid.  His head shoots back and his body starts to shake violently.  He’s not responsive, his eyes have rolled back in his head, and I have never seen anything even half as terrifying.  And as quickly as it started, it’s over.  30 seconds of terror, replaced by an even sadder, sicker baby.  He’s still crying, and I am desperate to reach the doctor.

I lay him in bed – he’s safe in bed, right? – and call the pediatrician’s answering service.  It takes me several tries to get through and it’s almost ten agonizing minutes before I can get back to my baby.  When I do get to his crib, he’s asleep.  Peacefully asleep, it seems.    Do I let him sleep?  Do I take him to the hospital?  When will his doctor call me back??  A quick phone call to Daddy makes the decision for me – we’re going to the hospital.  I’d rather overreact a hundred times than underreact once.

Bug sleeps for another ten minutes while I pack a diaper bag, but wakes himself up screaming and reaching for me.  Why is the hospital so far?  And why isn’t Daddy here?

It’s a tense drive, but I manage to calmly talk with the doctor, Daddy, and even some very supportive friends on the way.  It helps to pass the time.  Bug seems better when we get there, but I’m not going home now.  


After a couple of hours of constant screaming and hysteria (and Aidan wasn’t happy either!), we are ready to be discharged.  Maybe he had a seizure.  Or maybe he was just very, very angry.  Sometimes very, very angry children hold their breath.  Dr. Condescending (Sorry, Physician’s Assistant Condescending… let’s not give titles where titles are undue) feels that he has likely had a temper tantrum.

I can’t think.  I can’t ask questions.  I will be so disappointed in myself later, but now I am just clinging to my sweaty, screaming child and needing to get him home.  And I do.  I take him home, pumped full of Motrin and zofran, and rock him to sleep.  I haven’t rocked him to sleep since he was – well, okay, I haven’t rocked him to sleep ever.  So I’m not the nurturing type…  

The morning brings no relief – we head out to the doctor’s office and await further lecturing on my infant’s temper tantrum.  I’ll never forget that visit though.  We are taken right back and greeted by Gail, who clearly remembers us and knows what we went through last night.  She’s as nonplussed as I am by the ER’s diagnosis and feels that, given our family history, febrile seizure is the more likely culprit.  We talk about how to make him comfortable, what to watch out for, and how long to keep him out of school.  And we talk about the ever-present specter that is the “Food Allergy” – she assures me that our upcoming allergist visit is with the best.  She promises that it gets better, and easier, and that in time I might come to enjoy feeding my son.  I am hopeful that the dread that I feel when I hear the word “food” will begin to lessen over time, but that’s another story for another day.

There are two solid days of misery.   


Aidan can do nothing but cry and wrap himself around me.  I can do nothing but hold him and pretend my heart isn’t breaking right alongside his.  And finally, we are where we started.  It is Wednesday night.  A tiny, hot hand is curled around my finger.  The other is desperately clutching a damp muslin security blanket.  I know that he’s not going to daycare tomorrow but I’m eternally grateful that Daddy can stay home with him.  I hate leaving him, but I need to work.  He’s in good, strong, capable hands with Daddy.

Morning comes.  He’s better.  He’s beginning to smile.  

I go to work and think of him every spare moment I have.  6:30, I walk through the door.  I hear giggles.  I hear chatter.  My Monkey is back.

Wednesday, July 6, 2011

Wordless Wednesday - A half birthday party for a very big boy!

Totally breaking the "wordless" rules, but I can't help myself.  We had a lovely half birthday party for Aidan.  Two of his besties came over (Teddy and Phinney), Auntie Megan was here, and there were new toys galore.

Happy Half, Aidey!










Tuesday, June 21, 2011

Tasty Tuesday

We've had bread.  We've had cucumbers.  Now we've had bananas and melon.  Bread is still his greatest love, but how cute is he reaching for his melon sticks?


Monday, June 20, 2011

Must-Have Monday

This week's must-have is a silly little $5 teether called Razbaby.  We have the red one, but given how much Aidan adores it, it might be time to splurge on the blue one too.  Backups are important!

I love it because it's easy to clean and fits on his Booginhead Pacigrip so it never hits the floor.

Aidan loves it because it's got lots of different strange textures (the raspberry part, the leaves, the vine) that feel awesome on his sore little gums.

Total strangers love it because, well, it's a raspberry-shaped pacifier, and how often do you see those?


Sunday, June 19, 2011

Mommy is Thrifty

Because so many of us are into this sort of thing, I thought I'd post about my adventures in couponing.  Living in a tiny Norristown apartment, we emphatically do NOT have the room for the hoarder-esque stockpiles proudly showcased on Extreme Couponing.  Nor do I have the desire to possess 74 boxes of a brand of cereal that we don't eat.

Still, there's so much to save even when you remain fairly brand-loyal and only buy what you fairly immediately need.

How and where to coupon is partly a regional thing, but here's what I do:
- I get coupons from the weekly inserts (Red Plum and SmartSource) from my local Sunday paper.  I signed up for Sunday-only delivery for $1 per week.  What I obtain in coupons more than pays for this, for sure!
- I print coupons online
- I match these manufacturer's coupons to store sales and store coupons with the help of sites like KrazyCouponLady
- I shop primarily at Rite Aid, Walgreens, and CVS (there is one of each within 2 minute of my apartment) but also at Target and Walmart.
- My main savings are on health & beauty and household items, but I definitely also clip and save at the grocery stores!

Anyway, this morning's fun included stops at Rite Aid, CVS, Walgreens, and Target.  I am a master list-maker and shopping-trip-planner, so each stop was really, really quick and the boys stayed in the car.

Rite Aid:
The merch: 2 big bags of combos, 4 tubes of Colgate toothpaste, 2 tubs of Pampers baby wipes
Total product value: $27.52 plus tax
Total paid out of pocket (minus coupons): $13.44
Total +UP rewards/coupons received (valid for next visit): $14.96

Net earnings of $1.52.  You make this too easy, Rite Aid!


CVS:
The merch: 2 Secret clinical strength deodorants, 1 bag of Hershey's Bliss chocolate
Total Product Value: $24.77 plus tax
Total paid out of pocket: $17.69
Total ExtraCare Bucks (valid for next visit) $5.99

It's instances like these where if I wasn't brand-loyal and very specific on what I want, I could save a ton more.  Secret Clinical Strength runs upwards of $8 or $9 full price.  Even with a sale and a coupon, it's expensive deodorant.  But it's what I use, and my personal opinion is that a deal's only a deal if it's for something that I want.

Net spend of $11.70.  I can live with that. 


Target:
The merch: 2 bags of knorr pasta sides, a cucumber, a banana (the cucumber and the banana are lunch for Aidan.  Not actually on the shopping list.), 4 boxes of q-tips
Product Value: $16.65
Total paid out of pocket: $10.71
Total GC rewards received: $5

Net spend of $5.71. 


Walgreens:
The Merch: a container of lysol wipes, 4 bottles of soda, 2 boxes of cereal.
Product Value: $17.11

Paid out of pocket: $5.83
Total RR received (valid next trip) $1

Net spend of $4.83.