Updates

Life has been busy, and it's been a while since we've posted.  And I feel an overwhelming dread that there are just too many things I want to say and not enough time.  So I will paraphrase.

- Cupcake continues to do well, and is still growing and healthy.  Lately, she's been having some poop issues, which makes me think she might have more food aversions than we previously thought.  Related to MCAD?  Probably not, but worth keeping an eye on.

- We're between doctors, which I hate, but we moved twice in the last 3 months, which meant that her 12 month check up was with a doctor that we'll never see again.  Actually, we were willing to have her 15 month check up there, but apparently this doctor moved and left the practice.  The rest of the practice is too far for us to attend and meet a whole new doctor, so we're on a search for a new general pediatrician.  I don't like this, but it is what it is.

- We are also between Metabolic Specialists, which I like even less.  But we moved from Brooklyn in October, and the new specialist didn't have any available appointments until January, so in the meantime we have our emergency protocol letter and both doctors have told us to count them as the main resource.  Hopefully nothing will happen, and this will be remembered as just another snafu in our health coverage.

- Health coverage.  I seriously think nothing in my life will be as frustrating as trying to figure out the US health care system.  We've been royally f*cked one too many times, and we haven't even needed ER services yet.  At least it's all settled now.  Nate has a job, which provides full comprehensive coverage, and the last three months of COBRA, dealing with CHIP, and looking for private coverage will be but a terrible nightmare that happened some time in 2011.

-  I'm working again.  *Finally*  And even though it's only part-time right now, it's enough to afford to send Cupcake to daycare for a few days a week.  I'm looking forward to this, and I think she'll really enjoy the social interactions as well.   However, finding adequate daycare is a herculean task unto itself.  Is this just a standard issue in parenting, or am I being extra vigilant because of her MCAD?  I'll never know, I guess, this child is all I know on being a mom.

- We've been seeing a lot more family and it's great.  Lots more babysitting, and interactions with grandparents and aunts/uncles.  Cupcake loves the attention, and Nate and I are getting a much needed break.  I feel the light at the end of the tunnel in achieving more balance in my life.  Maybe I'll even start doing yoga again to regain my zen-ness.  Who know, stranger things have happened.

On moving

So here we are, halfway moved.  I say halfway because we haven't found full time employment yet, which we need in order to rent our own place.  So in the meantime we're staying with my parents.  It's been 5 days so far, and though we seem to be getting in each others space a bit, I think we're gonna be fine.   I hope.  I really, really hope.

So now we have to deal with finding jobs, getting our own place as soon as possible.  And most dauntingly, dealing with a less than desirable health insurance situation. I'm most worried about getting Cupcake a pediatrician, a new metabolic team, and keeping her happy as we deal with all these changes.

More to follow

Life changes - we're moving

I've been neglecting this blog, but it's with good reason.  We are moving across the country in a month, and this is all happening so suddenly that it's hard for me to catch my bearings.

Going back "home" is something we'd had in the back of our heads since Cupcake was about 3 months old, but it was more abstract.  As in, wouldn't it be nice is we had grandparents nearby.... let's deal with that later.   But then our crazypants landlord decided to not renew our month-to-month lease and basically gave us less than a 60 day notice to leave the apartment.  Which.... is legal but kinda wrong.  It came out of nowhere, and we still don't know why she's doing it.  In fact, she's avoided us since she sent the letter, and yes, she lives right below us.  It's a stressful situation to say the least.

So here we are, going back to Texas.  Trying to figure out how to pack up our lives and move them, get new jobs, and do all this while keeping our almost one year old sane.  Or maybe just keeping us sane, she'll be okay.  We are also super excited to live near family again.  Cupcake's grandparents want to babysit, and take her out, and give us a break.  Maybe we'll get a few nights of sleep here and there?

This also means we'll have to get a new metabolic doctor, which stresses me because I really feel we got 'in a groove with our current doctor.  I fear our new doctor might be stricter, or treat Cupcake's MCAD as something scary and debilitating, which is not an attitude that works for me. Oh well, we'll figure all this out when we get there.  It's not gonna stop the move from happening.  We HAVE to leave our apartment, and Nate has put in his two weeks.

As Martin Lawrence said in the climax of Bad Boys II, "$hit just got real'.

Sleep Chronicles

It's been a busy last few weeks, both in Cupcake's life and in ours.  The main issue with Cupcake is a bizarro sleep regression that I'm having a hard time dealing with.  Please forgive the dangling preposition, my mommy brain isn't functioning very well.  Sleep deprivation is a b-ch.

Life before baby

Life after baby

 I also seem unable to organize my thoughts into a standard essay-style blog entry, so maybe I'll just try to touch the highlights of what's going on with us.

- We tried a form of modified sleep training.  Basically, my arms gave out and I just couldn't rock her anymore for as long as she needed.  The new plan was to rock her for 5 - 10 minutes (which seems reasonable, since she is, after all, a baby), then set he down on her crib.  At this point, if she cries, just sing to her and pat her and reassure her that I'm there.  She cried, and wailed, and looked very angry, but never more than 15-20 minutes.  I would stay in the room with her, not wanting the issue of sleeping of her own to get confused with separation anxiety. 

It worked, I admit.  Hearing her cry felt terrible, but she would fall asleep, and stay asleep for an hour.  Then proceeded to be in a wonderful mood the rest of the day.  I had feared that she'd hate me for doing this to her, but a baby's short term memory is bliss.  Mostly, I felt like I had no choice, since I couldn't rock her.

- I'm not sure how I feel about crying to sleep, even though we had to do it.  It seemed to me that Cupcake started waking up from naps mid cry, as opposed to the cooing she used to do.  Am I projecting?  Probably.  Reminds me of Dr Horrible's Sing Along Blog, when Captain Hammer is frozen mid song, and when he unfreezes he finished the note where he left off.  Yes, I just compared my 10 month old's napping pattern to Dr. Horrible, what of it?  In any case, even though my arms were finally getting rest, I wasn't fully convinced that this was the best approach for us.  A week and half later, she was still crying 10 minutes per nap.  Is that normal?  Shouldn't she be happily self soothing by now?

- She's learned to stand on her crib.  She's known how to pull up for long time, but she finally figured out how to go from laying down to sitting, and from there the rest is easy.  So now, I can't even let her cry as an option, because as soon as I put her down on the crib, she immediately sits and stands.  It's so quick, I could blink and I'd miss it.

Which leaves me with some options, rock her to sleep until she's really good and zonked out.  Which.... no, this is what got us in this predicament.  My arms can't rock a 22 lb baby.  Not gonna happen.   Or I could take her out to nap on the stroller.  Or I could just leave her to cry and figure it out for herself.

I've tried to let her fuss it out, and it's just not working.  She cried, gets completely red and snot nosed, and just doesn't let down.  At what point do I throw in the towel?  So far I'm stopping the torture after 20 minutes, I just assume she wasn't tired and we can try for a nap again later.

- Have I mentioned that she's just kinda not sleeping during the day but stays in a great mood?  She looks exhausted, will fall asleep within 30 seconds of me rocking her, and wakes as soon as I put her on the crib.  But once I pick her up she's all smiles, plays well on her own, and largely shows no signs of being tired or overtired.  I'm trying to remind myself that at this age many babies only need one nap, so as long as she gets one nap in there, it's all good.  She'll fall asleep when she's tired enough, right?

- The sleep training has had one awesomely positive side effect.  Cupcake now sleeps on her stroller again.  After a 5 month stroller strike, she now will happily zonk out in her umbrella stroller, her neck bending to utterly uncomfortable looking positions.   Freedom.   I can now leave the house without worrying about coming back home for naps or risk total breakdown while out.  Is it related to the sleep training, or simply a developmental phase?

- Could she possibly be transitioning to one nap?  And if so, she's gone from 3 naps to 1 in a matter of weeks.  Not sure how to handle this.

- Now with the the crib standing, she's back to waking up 4+ times a night.  We'd managed to cut it to 2, by letting her fuss it out for a few nights.  We're regressing.  And the worse thing is that Cupcake seems to be sitting up in her sleep, and then her body wakes her up.  None of us, baby included, are happy with this situation, but are at a loss on what to do.  The night we let her sort it out herself, she just cried while standing for a half hour.  I was so exhausted I let her, but we share a room, so this just wont work.  Should we set up an air mattress in the living room?  Would that work better?

I'm having a some tough weeks, where I feel like I'm doing it all wrong.  She doesn't sleep well, and it feels like a direct reflection of my love and parenting abilities.  It's hard to convince me otherwise. 

We had Roseola

So one pediatric appointment, a Metabolic appointment, a scary fever, sleepless nights, and lots of fussiness later, we have confirmation: Cupcake has/had Roseola.

This is what our regular pediatrician suspected from the beginning, but we wouldn't know for sure until she got the tell tale rash.  By yesterday her fever was gone, and this morning she woke up with a gentle red covering on her skin.  I've never been so glad to see a weird rash, because now it means that it's over.  Done.  Fever broke, the rash should not be painful, and she's no longer contagious.  We can go back to our regular programming.

Though we did learn a lot from the experience.  Cupcake actually started refusing food for a whole day, going so far as to violently swat away anything we'd try to offer her. This was new for us, and left us at a loss of what to do.  Somehow she managed to eat some snacks here and there and drink a bit of breast milk at just the right times, so we avoided any type of crisis, metabolic or otherwise.  Even non FaOD children need to eat and hydrate if they're feverish.    

I will go into more detail about our metabolic appointment, as that deserves its own post, and our new found frustrations and opinions about L-carnitine (in short, we're not fans of carnitine at the moment).  In the meantime, we will rejoice that Cupcake did not have Coxsackie, a virus that still terrifies me and is probably lurking in the playground shadows.

Swimming pool

Yesterday, as a father's day treat,  we took Cupcake to the pool for the very first time.   It's summer time, and the weather is great, but since  the local school aren't on summer break yet, the public pools aren't open .  So instead we went to a nearby indoor pool that offers open family swim Sunday afternoons.

I'm glad we went the indoor route first, because we didn't have to worry about sunburns, or Cupcake getting cold from the breeze after getting out of the water.

Our initial goal was to be there for 15 minutes, figuring Cupcake might hate it, but since we had to pay to get in, we should try to stay as long as possible.  No issue, she LOVES the water.

When  we first put her in (there's no wading pool, so this is all us holding her on the 4 ft end), she made a strange face, seemingly confused at the concept of being inside such a big bathtub.  But within minutes, seeing that both mom and dad were there with her, she warmed up to the concept. She started splashing, moving her legs, and smiling.  Big wide smiles as she looked at all the other kids playing in the pool.  I'm so glad we went, she had a wonderful time.  Didn't put her face in the water, or anything too ambitious, we just wanted to make her familiar with water.  I want her to enjoy being in the pool and the ocean.

In the end, we stayed for 35 minutes, much longer than anticipated.  And when we got back home, she zonked out for a nap within minutes.  What a great way to tire out an 8 month old baby. I expect we'll be going back many Sunday afternoons in the future.

Standing up

I am relieved that at 8 months, Cupcake is already standing on her own.  She pulls herself up, and then lets go of the raining and balances on her own two feet.  I mean, I don't really care if she's standing or still sitting from a holistic level (really, what's the hurry to walk, where does a baby have to go?).  But rather, if she's strong and shows lots of muscle control, they probably won't need to do full blood work at her next metabolic appointment.  At our 6 month appointment, our doctors decided drawing blood wouldn't be necessary because she could sit so well.  I'm hoping the next appointment goes similarly.  I just don't like my little baby girl getting blood drawn.  It's necessary, and I support preventative medicine, but it still makes me sad.

So far it seems MCAD has been kind to us.  One of the side effects we were warned about is decreased muscle development.  It seems it's not uncommon for kids with an FOD to have problems with their physical development.  So far, we haven't had any issues with delayed muscle control/strength.  Au contraire, Cupcake seems to be standing and reaching for things way ahead of schedule.   And for that I'm grateful.

Here a little secret, and I hope I don't ruin my good Karma by sharing it.  On New Year's eve, we played a game where you would write a wish on a piece of paper, then at midnight we all threw our wishes into the bonfire.  The usual superstitious shenanigans, and aren't those the best part of New Year celebrations?  I wished for no metabolic crisis.  At the time, Cupcake was only 3 months old, and we were terrified of what her diagnosis would mean for us during her first year.  I'm glad I made the wish; so far it seems to be working.  Maybe she would have been asymptomatic this far regardless, but the wish really stuck with me.  I wished with all my might that she be healthy, and that we would have the wisdom to prevent a crisis by feeding her.  I wished wonderful things for all the people that advocate for mandatory screening.

I know she could still get the stomach flu and need an ER intervention.  But with every passing month I feel more in control.  Our doctors said the first year could be the toughest, and I'm glad we're 3/4 of the way through.

Eating solids

Among the things I'm grateful for:  Cupcake loooves eating food.  If you're gonna have an FaOD child, where your doctors instructions are pretty much "make sure they're eating", it sure helps to have a kid that takes so well to food.

It's not anything we've done, I'm afraid, she just likes putting things in her mouth and swallowing them.  Our current routine is that I breastfeed her when she wakes up from sleeping (roughly 9:30, 12:30, 4, 7, 9:30), and twice a day, about an hour after she's had her milk, I give her solids.  We're going with the idea that under one years old, food = fun, and she isn't really getting nutritional value from the food.

And it is fun.  It's amazing seeing her taste things, make faces of curiosity when we introduce new foods, sometimes she even grabs her own spoon and puts it in her mouth.  When we are out and she sees us get out her plate and a banana, she gets super excited and eager for her food.  Where does it come from?  How does she know so well what food entails?

We started her when she was about 5 1/2 months old, and at the time we'd have about one meal a day, and at that only a few spoonfuls.  She wasn't 6 months yet, but she was just soooo curious about everything that went into our plates and mouths, it seemed only fair.   By now she has two meals a day, of about 4 oz each.  I guess she could eat more, but I'm taking it easy.  Sometimes she doesn't even finish her 4oz, and other times it seems that it's not enough.  It changes per day, probably in direct relation to how much she's been jumping on her exersaucer.

So far she loves bananas (and she can eat an whole one, where in her stomach does that even fit?), apple sauce, pears, apple slices, her favorite by far is sweet potatoes (I can mix them with anything to introduce a new food), butternut squash, carrots, yellow squash, peas, parsnips, and she'll tolerate brown rice when it's mixed with a vegetable.  She also tried spinach (mixed with apple sauce, she loved it), but it seemed to not agree with her digestive system.  Ditto for yogurt, which gave her explosive diapers, and I don't really enjoy cleaning doodoo from onesies, so I don't think she'll be eating yogurt for a while.  We tried avocado a month ago and she didn't like it.  Time to try it again....

I make all her food, and so far it's been very easy.  A couple of times a week, while I'm making our dinner, I'll steam or boil a veggie for her, and them I'll mash/blend/food mill it.  Then I freeze it in ice cube trays and store it in zip lock bags.  When it's time for her to eat, I just warm them up in the microwave.  Too simple right?  I was expecting to put more effort into making her food, and I'm happy to report that this is simple stuff. 

So far, Cupcake  hasn't had a single jar of food, which I'm pretty proud of.

She'll be 8 month next week, and we're ready now for the next stage.  Some chicken, maybe beef, and more grains?  Chunkier purees?  Her food is pretty chunky as it is, so I'm not sure how to proceed next.   Suggestions?

Letter to my baby: 7 Months

Dear Cupcake,

I can't believe you're already 7 months old!  For some reason, this age feels "old".  You're now an established baby, who sits, grabs things, rolls, laughs and is the perfect age to appear in toilet paper commercials.  It feels very strange to see you as this little girl, as opposed to the blobby baby you were just 4 months ago.

You're eating food now, and you love it.  Besides avocados, which you refused to eat, you've taken great to everything else.  I make all your food, and you eat as if your stomach was a bottomless pit.  Seriously, where does it go?  You're also getting really smart at figuring out where the food is, I think you recognize your plate, spoon and bib.  Also, you seem to take it in stride when we feed you outside or anywhere that's not your high chair.  Last weekend you ate while we were at an outdoor cafe, and as soon as you saw the banana and your plate, you seemed to know what was up.  And then you finished the whole banana.  I like to think it's because you're super smart, but I might just be a tad biased.

You are also very adventurous.  If life were up to you, you'd probably live it all upside down.  Unfortunately, we have to sit you up once in a while.  You also love going to the swings.  How do I know this?  You laugh the entire time the swing is moving.  Last week we also tried taking you down the slide while you were on my legs, and you LOVED it.  Maybe you've taken after you mom, who loves roller coasters?  Only time will tell.

The weather is getting nice now, and we are going on play dates in the park.  The outdoors seems to agree with you.  You'll stay out for a long time entertained looking at people and chewing on your toys.  You are no longer fussy at play dates or seem wary of other babies.  As long as we are outside, you'll happily play alongside them, and even grab your toys back if one of your friends tries to "borrow" them.  I know you should share, but at this point I'm just happy that you recognize a toy and lean forward to grab it back.  Sharing will come later.  Don't worry, we will parent you.

You see your dad a lot more in daylight, now that the days are getting longer.  You get so happy when he arrives home from work.  You smile and your feet begin to kick.  Then you spend the rest of the evening being held by him.  You like it and he does too, and it's giving him huge biceps.  Also, this is the best time for him to flip you upside down and make you do the kinds of acrobatics your mom is not quite ready for.

Things are good, Cupcake.   We love you sooo much, and you continue to grow, smile and be healthy, which is what we want for you.  You're just such fun now that you babble, try to stand, and play.  Sometimes I feel like the Grinch, whose heart grew three sizes in one day.  Except I've always liked Christmas, so don't worry about that.

You have no idea what summer is, but I have a feeling you're gonna really enjoy it. Get ready.

With lots of love,

Your Mom

Sleep regression

I'm at the end of my rope.  I just can't be an effective night-time parent.  From everything I've heard of how motherhood changes you, I guess I was expecting that my body would go through some chemical adjustment that would let me be sleep deprived but still functional.

No such luck.  I still struggle at night, and if I don't get 7 hours of sleep I'm an emotional mess.  When I was pregnant we were aware of these issues.  Nate is a total superhero who can function on 4 hours of sleep, then go to work, come home and fix all the door hinges and still have energy to listen to me go on about my day.  So before Cupcake came into this world we agreed that he would be on night duty, while I was in day duty.  At the time we imagined him resettling cupcake a couple of times a night and maybe giving her bottled breast milk.  Meanwhile I could sleep and not get migraines. 

Then reality hit.  Cupcake needed to feed around the clock, so I was just breastfeeding her around the clock.  And because I was feeding so often, I couldn't really get enough pumped reserves, which meant I wasn't getting a break at night.  And so on, and so on.  All of the sudden our nighttime plan wasn't really working.

Before I ever thought of having children, I remember talking to a couple of women with babies who said that after giving birth your relationship to sleep changes.  You no longer *need* as much sleep, your needs just shift naturally.

This is not biologically true, in my experience.  I still need sleep to function as a sane productive person.  And after almost 7 months of getting up during the night no matter what, my body is giving up.  It's done.  Finito.

Last night Cupcake woke up and cried for about an hour and a half.  We have no idea what was actually wrong with her.  Teething?  Growth spurt?  Allergies?  Cold?  Gassy?  Digestive issues?  Separation anxiety?  She'd cry, and our usual system of patting her wouldn't work, so Nate would pick her up, and she'd calm down, then the second he'd try to lay her down on her crib she would start the crying again.

After 45 minutes of this he also gave up (I had thrown in the towel a long time ago and told him I was fine with just letting her cry).  And we did what I swore I'd never do, attempt to let my baby cry herself to sleep.  We were there, next to her, and Nate had his hand on her chest, but still.... I can't believe I was ok with it.  I was just sooooo tired.

She whined and moaned for about 20 minutes, then it looked like she was going to sleep, then she started to cry loudly, went back to sort of sleeping and then she started screaming hysterically at about the 35 minute mark.  And my husband is much more sensitive than I am, because he just couldn't take it.  I ended up feeding her at that point and she zonked out (and stayed asleep for over 4 hours!).  Too little too late though.  And I honestly don't think feeding her at the beginning would have helped, she'd just eaten an hour and half before, she wouldn't have been hungry at the beginning.  After the hour and half, then yes, totally legitimately  hungry.

I don't know what to do.  I don't want to keep co-sleeping.  I was happy with it before, but now she likes to stick her hand in my mouth as she drifts off to sleep and it just hurts. The crib next to our bed was working, but now she doesn't seem to be ok with it.   I don't have the stamina to get up at night, but I don't agree philosophically with CIO as a means to self sooth.  I'm at an impasse.

This little 18 lb princess is kicking my a$$.  Though she didn't seem happy with last night's fiasco either, at least she had the decency to wake up cranky and not well rested.  I know, I know, it wasn't pleasant to deal with her in that mood, but I think I would have been really annoyed if after such a horrible night she was all smiles as if this was the most natural thing in the world.  The fact that she didn't enjoy it either gives me hope that this is not the "new normal."

I have faith that at some point this will all sort itself naturally.  After all, my parents never sleep trained me, and at some point I learned to sleep through the night.  And I've never met a teenager that needs to be rocked to bed, so it does stop.  Just... when?  How much longer will this go on?

Why I'm OK with MCADD - ammended

I tried to write a few days ago about coming to terms with the MCADD diagnosis, and it came out wrong.  I'm not a writer, so sometimes I share whatever is in my head and don't realize until days later how much like a jackass I sound.  You live, you learn.

I'm not glad Cupcake has MCADD, I'm so glad and thankful that she was diagnosed.  Thanks to that we will be able to hopefully have a healthy life, with minimal hospital visits, and keeping her disorder under control through careful food monitoring.  Because we know about it, she will be able to avoid fasting and hopefully lead a perfectly normal life, free of medical interventions, physical disabilities, and developmental delays. We want this to be but one of the many things that describes her.

I struggle a lot with how to deal with her diagnosis.  And I've reached a zen point where I am good with it.  Of course I wish she was completely healthy, free of genetic deficiencies.  But I'm realizing more and more that everyone has something wrong with them.  It could be MCAD, it could be allergies, chemical imbalances, weak immune systems, asthma, you name it.  Going through all this, specially the initial doctors appointments, has been a learning experience that's made me appreciate many things I used to take for granted.

It would be nicer if my internal realization didn't come at the expense of my child having a life long medical issue.  I am aware of that.  But nevertheless I am humbled by this situation, and thankful that I'm going through the process.  I think it's part of not believing in God, it makes me struggle sometimes with how I word my internal narrative into recognizable terms.

Today's musing

There's a tenuous five minute period, when the baby falls asleep on her crib, I take my hand off her chest (she likes to hold my hand to fall asleep), I gently step back to leave the room, slowly humming softer.  During this window, if someone drops a pin two blocks away, she will hear it.

Once this magical time is over, a marching band can be tuning up outside her window and she will sleep through it.

How does that work?

Can I leave my baby with a sitter

Since Cupcake is now almost 7 months, my defenses are relaxing enough to leave her with others for care.  Not that I've actually done it yet, but it's the intention that counts.

Now, before we all go crazy and assume I've had this child attached to my hip for the last 6 months (after having her attached to my stomach via umbilical cord, no less), I have to make a caveat that my parents have stayed with her several times.  Every time my mother has visited, Nate and I have taken the opportunity to go out as a couple.  When we've gone back home, we've left Cupcake with them while we grabbed dinner/ caught a movie/ etc.

So we've actually done pretty good for ourselves in terms of having frequent "date nights".  Of course my parents don't live in the same state as us, so although we've left cupcake with them on several occasions, it's still something associated with visits and travel.

But now I'm debating finding a drop-in daycare place to leave Cupcake an afternoon per week or so.  I have some licensing exams to take, and I would like to get them done before returning to work.  I don't know how long it will take until I go back into the work world; might be 6 more months, maybe another year, or more depending on when we have another kid.  Nevertheless, when the kid(s) eventually go to preschool there will be no reason for me to be home all day, and at that point I would like to be done with all my 7 exams to be a licensed professional. 

Of course I have trepidations.  I'm convinced that Cupcake will freak out, since she's largely a shy little girl who needs to be in constant contact with me when we go to social events, be they adult gatherings or mom&baby play-dates.   So I worry that if I leave her with someone else, there will be screaming tears.  And though I understand that a bit of crying never killed anyone, I think it would really hurt me.  In my sensitive little heart.

I need a bit of a break though.  I'm running myself thin trying to keep up with baby, house, marriage, self, and now adding the abstract concept of my career.  But will I actually trust my Cupcake with a total stranger?

I have no family nearby, so cousins, aunts and grandmas aren't an option.  And I'm a bit weary of one-on-one nannies that I don't "know", because really, what will they be doing at my house while I'm not there?  Maybe I need to have someone come over and take cupcake out to the playground while I stay home and study.  My neighborhood is full of nannies, how did everyone else figure it out?

Why I'm ok with Cupcake having MCADD

I am strangely thankful that my child has MCADD.

It's a weird thing to say, but I think without this diagnosis I would not be as appreciative of all the positive things about my baby.  As I sit there frustrated some nights because Cupcake has woken up a fourth time to nurse, I can stop and be happy that I can hold her and nurse her.  I know that not everyone can do that, and I'm grateful for every moment I can spend wit her (yes, even those in the middle of the night).

Getting this diagnosis has exposed us to a world of families dealing with rare diseases, most of them much more debilitating and symptomatic than MCAD.  It's scary what's out there, and people cope with it the best they can.  Before MCADD was included in the New Born Screening, it had up to a 25% mortality rate, and was to blame for some SIDS cases.  Reading about all the parents who have lost a child is a sobering moment, and my heart goes out to them.

If Cupcake hadn't been diagnosed at birth, I couldn't possibly appreciate just how lucky we are to have a healthy child.  I marvel at the fact that she responds to me, that we don't need daily medications, that her future physical and mental development is not compromised, that she's not in current pain.  These are things that I would have taken for granted if she didn't have MCAD disorder. 

I know I complain about her sleeping habits, her foul smelling poops, her crankiness when I'm trying to get things done.  And I understand that being frustrated about these petty issues is a luxury.

Sometimes, when I look at how well she's doing, I am overcome with gratitude to all the people that fought (and are still fighting) for mandatory newborn screenings.  We've kept her from going into fasting, and are extra attentive during bouts of illness, and I'm not sure if we would have been so cautious had we not known about her condition.  She's going to be just fine, thanks to all those who paved the way.  I hope, as she gets older and I have more flexibility on my schedule, to give time and energy to the cause as well.

Teeth

Dear Cupcake,

I know it must be painful.  The mere idea of having a jagged tooth literally break through your gums sounds horrifying.  And because of this, I know you're not being  obnoxious on purpose.

Seriously, when a baby gets a tooth, the whole family suffers.  We were all up several times a night to sooth you.  We rocked you and sang, and nursed you when you'd start crying as if you were in pain and still looked half asleep.  Should we have let you sort it out yourself? I don't know, but seeing that we can see the bump in your gum, I think we're just going to indulge you as you go through this process.

I hope it ends soon.  I love you and want you to feel right again, but this is exhausting.  We can't have too many more night like this.  Or else soon we're going to stop being receptive to your cries, and none of us want that.

We're so happy you have a tooth and are working on another.  Really, we are.  I know you had little control over it, but I can't help but feel proud of how well you're growing.  I just wish it would get here, you know, faster, and without so much fuss.

There's only so much Motrin we can give you before it just gets ridiculous.  So we've decided that a bit of painkillers at night are probably good for you too (I really think you're happier when you sleep well at night), and during the day I'll just tough it out.  During the day we can play and distract you.  We'll be fine.

Just please, don't be one of those babies that is teething for three months straight.  We'll love you matter what, but I really want to like you the whole time too.

Love,  Mama

First words

Cupcake keeps on babbling.  She now says something to the effect of Ma ma ma ma ma ma ma, which I usually interpret as her being hungry. 

She also will say Agua, the Spanish word for water. 

Also, as a good Arrested Development fan, she'll say to herself Bob Loblaw's Law Blog.

And finally, our other favorite word she keeps saying... Abba.  At this I feel compelled to serenade her with my best rendition of Dancing Queen.  Thus far this does not impress her.

Diapers and solids

I might be having second thoughts about this whole "solids" business.  I mean, Cupcake is obviously ready and she looooooves having her food, but the diapers are the scariest thing I've ever seen.  I swear she will never eat banana again for the rest of her life, or at least until she's potty trained and in high school.

Today she ate carrots, hopefully it'll agree better with her stomach.  We also got apples, avocados, and a sweet potato.  I'm incredibly excited to try them, mostly because she seems to enjoy food so much.  Obviously other parents have survived diapers, but how?  How can I deal with 2 more years of this?  

She also had a couple of blowouts our her back.  Maybe it's time to move to a bigger size?  She's currently using size 3s, and she weighs almost 18 lbs, but I've always heard that if you're having blowouts, its best to go up a size.  Then again, I feel like I'm fighting a losing battle, that I'm asking for the impossible. She'll go through a phase of explosive poops, then her digestive system will re-stabilize and then life will go back to normal again.  Or at least I hope our laundry will be slightly more... poop free.  It has to be.  I don't see 1 year-olds having every outfit washed because they keep pooping on them.  Or is this another of those dark secrets no one tells you about, like sleep regression and nail scratching.

Letter to my baby: 6 months

Dear Cupcake,

You are 6 months old today, and I am amazed at how much you've grown and how we can't even remember what life was like before you made us a family.  Seriously, how did we spend our evenings?  It feels like we always gave you carrots, played with you, and did your night time routine.  Its so nice.

You're getting really big, and according to your pediatrician, you are still on the 95+ % for height.  Since a couple of days ago, you can sit by yourself for long periods of time.  Today you spent long stretches sitting on your activity gym playing with your toys.  I couldn't be prouder of how strong your muscles are.  You like rolling over from your back to your belly, but you haven't figured out how to roll back.  Why is that?  Specially since you don't really enjoy tummy time that much.  It's a curious thing.

We think you are teething, because you were waking up a lot a few nights ago.  Mama & Dad are tired, little one, so please be nice to us. Then last night you slept wonderful, only waking for your scheduled feeds, so who knows what's going on with your biological clock.  I've even acquired a bunch of sleep books from friends to help you sleep better.  Do you need them?  I just want you to be getting the rest that you need to grow and be happy.

You have started eating some solid foods.  So far you really like bananas, though I am terrified of what they are doing to your diapers.  In the next few days we are going to embrace solids full throttle, so get ready for lots of fun tastes and textures.

Recently, you have also discovered our faces, and we keep getting poked and prodded by your adorable fingers.  Do you know that you are super strong?  I am amazed how hard you can pull hair, or scratch my nose.  Your nails also grow incredibly fast, it must be a good sign.  Maybe your got my fingernails after all, and you'll enjoy an adulthood of super strong unbreakable nails.

Last weekend we took you to play on the swings for the first time.  You had so much fun, and I hope this is the beginning of lots of trips to the play ground.   I can't wait to take you to the Zoo, so you'll finally get what all these animals and sounds are about.  Or the botanical gardens, or Times Square, or the beach.

For your half birthday, we got your a gift.  You now have a Sophie Giraffe.  Please don't think we are cliches, it just looked so cute at the store, and we wanted to give you something special.  Because we love you sooooo soooo much.  You have no idea.  You probably think it's totally normal to be part of our family.  But before you were born, we weren't a full family yet.  We are still getting used to it.  There are mornings when I wake up and I stare at you and your dad sleeping next to each other and I'm so happy you came into our lives.

Keep growing, my little cupcake.  Life is wonderful, and I'm so glad you are getting to enjoy it.

Love,

Mom

What do you do with a crying baby in a car?

Yesterday we had a strange crying incident at the grocery store. Cupcake was getting fussy near the end of the shopping session, making tired nooses, sounding like she was *about* to start crying.   That's not the strange part, btw, that's just a baby getting tired of being out for errands all afternoon.

The crazy part was once we got her in the car seat, thinking she'd finally relax and let the car lull her to sleep.   Oh, we were so naive.   Apparently, what she wanted was to scream and cry uncontrollably.   I'm not usually so utterly defeated by my own child, but there was NOTHING I could do to distract her. My songs, rhymes, and sleep-shushes fell on deaf ears.   She just kept crying.  And have you ever been trapped in a car with a hysterical baby?  Exactly.  

I felt so helpless.  I knew in my heart of hearts that there was nothing actually wrong with her - she wasn't hungry, in pain or had a dirty diaper.   She just looked tired.   Actually, I suspect that we finally learned today what true over tiredness looks like. (The books talk about it, but I swear I thought being over tired was just parents being dramatic, which wouldn't be the craziest assumption ever.  My apologies.)

Eventually I had no choice but to give up and cry along side her. After a few more blocks of this Nate and I switched places.  I drove us the rest of the way home and he finally managed to distract her, though briefly, with a rattle.  It was sooooo exhausting.   We got home, got her out of the car seat, and I rocked for not even two minutes and she was OUT. (Nate, mean while, was his usual rock star self and unloaded the groceries, carried our stuff and parked the car)  On a side note, we had to aspirate her nose, which was probably a huge factor in her frustration.


Blegh, not fun.


On the positive side note, we now KNOW that we're not cut out for CIO (Cry It Out) as a valid form of sleep training.  I'd always suspected that letting a baby cry just didn't "jive" with our temperament, but now we have confirmed it.  


Granted, proper CIO involves making sure all your baby's basic needs are met, and then letting them cry in a controlled environment while you cover you ears in the other room.  But my heart broke for Cupcake screaming in the car, tears flowing freely down her red cheeks.  It stressed me to no end.  Sure, letting her cry for 30 minutes might get her to fall asleep at night on her own, but I just don't think I'd be able to sleep knowing that she had cried so much.  Call me sappy, but I would just have bad dreams of Cupcake being in a crisis and me not being there to help her.  Nate is right there with me, so we're a unified front.   And what's good is a sleeping baby if you can't catch a wink yourself?


Well, glad at least we got that part of our parenting philosophy figured out.

Joining a Mom group

I remember a time before I joined the neighborhood parent group.  Those dark days when I thought it might be silly to join an email list-serve (that, and our group actually charges a nominal joining fee).

What was I thinking?

I honestly don't know how we would have survived the last 4 months without our mom group.  I say four months because we had help from family the first month of Cupcake's life.  And I was still recovering from the c-section and getting my bearings with this whole parenting thing, so I was in no condition to socialize anyway.  Since we joined we are now part of a community, we interact with other moms and babies, we exchange parenting advice, we laugh and cry together, and mostly, it's an excuse to get out of the house.  It's a reference point.  I joke to Nate that those are my work meetings, and them my co-workers.  It makes sense if you see parenting as a job (though underpaid, under-appreciated, and much more rewarding), so these outings are part of the social interaction would happen at every office.

Not that I'm preaching, but every new mom (specially those that aren't back at work) should join a mom group.  Yes, I thought it might be silly too.  But then I realized that when I first moved to NYC, I joined a volleyball team with the intention of making new friends through a common interest.  And I made some wonderful friends there.  So really, why shouldn't I join a group where we had the new-parent aspect in common.

Now our schedules are full.  Mondays it's one coffee shop,Tuesdays another, Wednesdays play-dates at rotating houses, Thursday's free, and Fridays a nearby cafe.  There have even been brunch outings on the weekends.  These outings fill our days and add a sense of structure to our week.  And all this through the worst of winter, so I can't wait to see how active we'll be now that the weather is getting nicer.