Wednesday, December 15, 2010

Second MCAD appointment

Today we had Cupcake's second appointment with the Genetic and Metabolic Center.  It's an ordeal to get there.  Mt Sinai is on the Upper East Side, and we are in Brooklyn, so it's quite a cab ride to get there.  We probably could take the subway, but with the cold front we are having, a two month old baby, and the stress that it gives me to go to a geneticist, it's better to just pay up.  That way we are all happy.

The appointment was the nicest one yet.  No one was worried, everything is fine, yet it was important to go.  The doctor wants Cupcake to go for a check-up every 2 -3 months during her first year.  They want to observe her and take blood samples to make sure things are going okay at a metabolic level.  It feels a bit frustrating to have to do this whole trek again, have more blood samples, and pay all this money, but in the grand scheme of how much babies cost, its fine.  At least we are on top of the situation.  And every time I begin to feel like this is a made-up disorder designed to make people pay lots for health treatment, I remind myself that babies and children have actually died from this.  It's a sobering thought.  And if maybe my headache of giving lots of blood samples means that they can study the disorder better, then good.  Hopefully, by the time she is in her 20's and thinking of having kids of her own, this "disorder" will be a thing of the past, like one of those allergies that feel so commonplace now.

So, some conclusion from the appointment:

- Cupcake is an adorably chubby baby, weighing an awesome 13 lbs.  But she's also really tall, so she's very proportional

- She's a champion eater, and gaining just right, so we shouldn't change a thing.  What we are doing regarding her feedings is working great.

- We still need to keep her on the 3 -4 hour feeding schedule, even though she's gaining weight so well.  Adding more time will have to do with her organs maturing, not with how heavy she is.  I was really hoping for a different answer.

- There is a possibility that Nate might actually have this too, considering that he was diagnosed as hypoglycemic when he was younger.  In fact, there are adults with MCAD who don't find out until their child gets diagnosed.  This doesn't mean that MCAD isn't serious, just that these adults were lucky and never had a major illness interfere with their feedings.  In fact, the doctor said that it would probably give us peace of mind if Nate tested positive, since it would show that one can lead a perfectly healthy life while being MCAD positive

- Her blood counts were all over the place last appointment because newborns fluctuate a lot.  It doesn't have to mean anything dramatic.  But yes, she definitely has MCAD.

- She's very healthy, and is hitting all her milestones with no problems.  Yay!!


Thursday, December 9, 2010

Overnight feeds

Last night I overslept and ended up feeding Cupcake at 3:15 am instead of 2:30.  Her previous meal was at 10:30 pm, so at that point it had been closer to 5 hours between meals.  The doctors told us to not wait any more than 4 hours.  This is not the first time this happens.

I have an alarm, but in all honesty, its easy to snooze while still in deep slumber.  I've tried putting it in different places, but somehow, my arm manages to move on its own and turn it off.  Or maybe I set the alarm wrong.  Who knows, at 3:15 in the morning its hard to think about things rationally.  I do know that as soon as I saw the time I woke up fast in a fright.  I definitely don't want Cupcake to go into metabolic shock, and even though we have a 6 hour window, this was too close for comfort.  I put her to my boob and she ate, calm, as if nothing was happening.

I hate the middle of the night feeds.  Hate them with a passion.  Hate them because Cupcake seems perfectly happy to sleep through them.  Hate them because she probably would be sleeping 6 hours straight if it wasn't for me trying to dream feed her.  Hate them because its been about 9 weeks since I get more than 3.5 hours of sleep straight.  Hate them because Cupcake has been spitting up a lot, so I need to keep her head elevated for about 10 minutes after feeding, which means that for ten minutes, Nate is asleep, Cupcake is asleep, and I'm the only fool needing to keep some semblance of wakefulness.  Hate them because of what they represent with her MCAD.  Hate that I can't aspire to a full night sleep for a long time, even if my baby was more willing to.

Next week we have another appointment with her Metabolic doctor.  This is her first follow-up since she was diagnosed with MCAD some 6-7 weeks ago.  Hopefully they will see that she is gaining lots of weight and is in the high percentile for her age, and adjust her feedings accordingly, or give us some reassuring new regarding her dietary needs.

Meanwhile, I feel extreme guilt for hating her 2 am feed.  What kind of mother am I?  I have been given the means to keep her healthy and free of MCAD symptoms, and the only drawback is that I have to suffer in my sleep for a few months.  Shouldn't I be doing it more willingly?

Wednesday, December 8, 2010

Vaccines - 2 months

We went yesterday for her 2 month check up, where Cupcake also got her two month shots.   I am a big vaccine supporter, and fully believe that everyone should be vaccinated (its herd immunity, after all), but it broke my heart to have her hurt with the needle.  She was so happy in the doctor's office, smiling at the nurses, and then *prick*, it all went down the drain.

She was fussy all afternoon, crying uncontrollably as though something was really hurting.  It probably was, I can't imagine taking so many vaccines, have you body reacting to it, and not feel under the weather.  I gave her a dose of infant acetaminophen and it seemed to make her feel better.  Still, for the rest of the day she needed to be held in order to sleep.  So I had her in my arms for 5 straight hours.  Exhausting, sure, but she was feeling achy and I just wanted to make her feel better.  By the time Nate got home from work, I was exhausted, but Cupcake seemed to be over the fussiness.  She was even smiling and being chill again in the evening.

I was really nervous about the vaccine, because a common side effect is a low fever.   This would be harmless by all accounts (though very unpleasant for Cupcake), but it triggers my MCAD buzzer.  They told us at the Metabolic Clinic that we need to be extra vigilant if she has a fever, as this burns more calories and would affect her caloric intake.  So I just wanted to avoid any type of fever, whether caused by a vaccine or due to a genuine bacterial infection.  It bothers me greatly that the MCAD issue is always somewhere in the back of my mind.  It's exhausting to worry about it, specially since Cupcake has so far been completely asymptomatic.  Luckily, the vaccine only made her extra fussy and we didn't have to deal with the issue.

Still... my poor baby.

Sunday, December 5, 2010

Breastfeeding in the Subway

Today I breastfed Cupcake on a bench on the subway platform.  As we were halfway through the subway came, so I took her off the boob, and burped her as we got inside.  Then, once I found a seat, she kept eating.  It was a unique experience, to say the least.

If I'd had a choice, I wouldn't have done it there.  Too many people, too much movement, too much craziness.  However, we were with friends, and the way the schedule ended up working out, we walked around up to her feeding time.  I was concerned about it, but didn't know how to state that we needed to stop to feed her without feeling that I sounded like a lunatic.  Nate and I decided that the most reasonable thing would be to feed her in the subway, since we knew that we'd be in there for at least 1/2 hour.  It worked out.

Its one of the things that annoys me about MCAD and her feeding schedule.  I want to write an entire post on how her feedings work, actually.  But its weird to tell my friends that my adorable sleeping baby needs to be woken up to feed in the next 2o minute window or it could be bad for her health.  It sounds crazy even to me.

I struggle with how much to advocate for being inside somewhere to feed her, and how much to go with the flow and figuring that we'll get the feeding figured out.  I want to be flexible.  I don't want the MCAD schedule dictate how we live our lives, but at the same time, how can it not?

Thursday, December 2, 2010


About three days after our little cupcake came home from the Hospital, we got a phone call from Mt Sinai Medical Center (this, btw, was not our hospital).  My mother was staying with us to help with all the newborn stuff for a couple of weeks, and since I was taking a nap (finally), she let my cellphone ring for me to check the voicemail later.  This was fine, since most phone calls that I get are from  my husband anyway, who's only in his office 3o minutes away.

However, when I woke up, we realized that the phone call were from an unknown NY number.  It was the Metabolic and Genetic Center from Mt Sinai Hospital, and they had left 4 urgent messages to call them back.  They even left a text (clever people, really) to make sure I'd get in touch with them.   Well, this scared the bejeezus from me, because it's never a good thing to get urgent messages from doctors saying to call them back about your newborn screening.

When I finally got ahold of them (and at this point I was pretty frantic), a nice doctor told me that my little 8 day old cupcake had tested positive for MCAD.  His instructions were that the disorder could be deadly, and I needed to come see them straight away, and that I needed to feed her every three hours, even waking her up overnight.  He also told me to not google MCAD because it would only scare me more, as there are many tragic stories on the internet.  This last piece of advice was probably a bad one for me, as it only freaked me out more. I tend to not assume the worst on the internet, and would have probably looked for medical information rather than venture the forums of god-knew-where.

When Nate called later they told him the same thing. We were trying to avoid going, since I was still recovering from the c-section and had been told to avoid too much physical activity.

Nevertheless, there we were, the next day at the Metabolic and Genetic office.  My mom waited in the car for what we thought would be a 30 minute appointment.  It ended up taking 3 hours.  Most of the time was spent because they needed a pee sample from Cupcake, but its hard to get a newborn to pee on the actual bag as needed.  There were many foiled attempts of her peeing on the ground, outside the bag, pooping into it, etc.  In the meantime, they got a blood sample from her, and we met with doctors that explained the situation.

Basically, Medium chain acyl CoA dehydrogenase deficiency is a rare genetic disorder.  Rare as in not being common, genetic in that it's based on genes, and a disorder in that there's something wrong with her enzymes.  But seriously, I was furious with the doctors for freaking us out so much over something that is so treatable.   They really made us feel that there was something incredibly wrong with our baby, and I cried for days after the diagnosis.

Now, after the dust has settled, and after talking to my aunt who is also a doctor, I realize that this is just an annoying setback in her feeding style, but nothing to freak out over.

Basically, people with MCAD can't process fats into energy, which means that they cannot go into fasting mode, or their bodies will go into metabolic shock due to lack of energy.  If this happens, it can be tragic, there are risks of coma, brain damage, and even death.  However, should said person go into shock, they need to be taken to the ER immediately and given glucose via IV, no big deal.  And the way to avoid going into shock is refrain from fasting.  Plain and simple.

So for as long as Cupcake is a little baby, we need to feed her every 3 - 4 hours.  Technically, she'd be fine up to 6 hours without eating, but that would be riskier because it would depend on how much she ate, so we are doing a max of 4 hours to be on the safe side.  This means having to wake her up at night to feed, which is frustrating, but not tragic.  As she gets older, the time she can go between meals will be longer, and the only major dietary restriction is that she should have a low-fat diet.  Something that we all should be doing anyway, so hopefully this will inspire our family to eat more balanced.

Still, the prospect of MCAD scares me.  A lot.  We need to be extra vigilant if she has a fever or is throwing up, because that burns extra calories and will cause her to go into fasting quicker.  We need to be extra observant of her feeding schedule.  We can't trust her appetite to tell us if she really needs to eat or not.  I fear being one of those families that goes to the ER three times a year.  I fear for my little baby having to have IVs into her system to save her life.  I fear what this will mean as she gets older: will it affect her weight gain?  Her athletic ability?  Will she be irritable because she gets hungry?  What about her appetite?  Her ability to go camping?  Stay over at friends houses?  You name it, I've thought of it.

Still, based on everything I've read, it is a blessing that she was born in a state that tests for MCADD.  It is an incredibly treatable condition that can be deadly if mismanaged or not diagnosed.  Countless babies and children have died because they were not previously diagnosed.  My heart goes out to those parents, who had to endure such tragedies.  And I am eternally grateful that their efforts to expand newborn screenings meant that my Cupcake could be tested and receive adequate treatment.  I feel lucky, in many ways.

Bottle Feeding

Yesterday was the first day Cupcake drank from bottles all day long.  Before this we had given her the bottle a couple of time to get her used to it.  Actually, if we are to be completely honest, it was to get us used to the idea and figure out how she would take it.

I've been pumping in the mornings for a rainy day.  The time I had an ARE to take, or needed to recuperate at night.  Yesterday we finally needed them.

I started to get a really bad headache Tuesday afternoon.  I took some ibuprofen and kept at it, because I get headaches all the time, and this is just par with the course.  However, by the evening it still hadn't gone away.  Nate encouraged me to take something stronger, and I took my prescription of Acetaminophen with codeine, which my OB had given me for my migraines when pregnant, and is still safe when breastfeeding.

All night long I waited for it to work its magic, while continuing to feed Cupcake on her night nursing sessions.  Not pleasant when you have a bad headache.  Finally, during her 6 am feed, I was overcome with nausea and it was all I can do to not throw up on the baby.  I didn't even make it to the bathroom and ended up relieving myself in the kitchen sink.  ewwwww.  At that point it was official, I had a full-blown migraine and for all of our sanity I should take my strong prescription, Sumatriptan.

Sumatriptan, which usually goes by the name of Imitrex, is a super strong migraine pill that is most definitely not safe to take while breastfeeding.  The official recommendation by the APA is to take it only if absolutely necessary, and my doctor told me to wait 12 hours before breastfeeding again.  I know my OB was very hesitant to write me a prescription, but last time I saw him I'd just had another terrible migraine and I knew I needed full on medication or I wouldn't be able to take care of my baby.  When push comes to shove, I'd rather give Cupcake formula for a day and be able to be there for her.  In the end we didn't need formula because I had pumped enough milk over the previous weeks to feed her all day, and even had an extra one left.

Nate stayed home from work so he could take care of the baby while I slept and recuperated.  She did pretty good with the bottle.  No issues from her.  Though it broke my heart a little to have her sucking form a rubber nipple, it wasn't so bad. After all, she was with her daddy, and he was delighted to be able to feed her all day.

Pumping and Dumping all day was one of the most demoralizing things I've had to do.  I don't like pumping, specially in lieu of a feeding.  I have a very cheap and simple pump because I am planning on feeding her in person, and I have no scheduling conflicts to interfere with that.  So the pumping would be for a once in a blue moon need, like yesterday.  So I have a cheap pump that gets about 1.5 oz a day and I just accumulate them.  Yesterday though, I had to pump to relieve the engorgement, and that was a much more painful process.  I was never sure if I was getting all the milk out, and my boobs still felt full at the end of the day...  agh, here hoping to not have to do this again any time soon.

Sunday, November 28, 2010

and now with baby

Since I last wrote on this blog, lots of things have happened.  For starters, we got into the second trimester, then the third, then went into labor, delivered a baby, recovered, and am now enjoying a wonderful 7 week old baby girl.

I have a lot of things running through my head regarding motherhood, medical care, labor and the path to parenting.  I'm hoping this blog can once again serve as a sounding board for all things related to our little cupcake.

Wednesday, February 24, 2010

Doctor care

I'm debating whether to switch doctors, and its a very nerve-wracking process.  On one hand, I like our current doctor, he seemed nice, attentive, patient and had a good bedside manner.  On the other hand, there's a birthing center within a hospital in NYC, and I feel it would be terrible for me to not try that.  It just so happens that I'm not fully convinced with the other doctor we saw.  Was is that she wasn't ALL that nice, or was I just kinda tense and nervous to begin with?  I am not sure, and it's killing me as though it were the most important decision of my life.

I called the birthing center doctor and they said they take patients up to 20 weeks (that's safely in the second trimester, right?) which means I really have time to decide.

I don't know why it feels like such a big deal.  Nate and I laugh that someday we will look back on all this and wonder why we made such a big deal about our doctor.  After all, people have survived for generations with not the best care or bedside manner, and it becomes just a funny footnote on your personal story.  I just feel like I have a chance to do something good, and I want to make sure I do it right.

We are touring the birthing center/hospital tonight.  I hope it helps shed some answers to our questions.

Tuesday, February 23, 2010


Nate likes to talk to my belly.  He will kiss it and speak directly to it, saying "Cupcake, I hope you can hear me.  We love you sooooo much, you have no idea.  We can't wait to meet you."

I can't think of a more wonderful feeling than watching my husband be so overcome with happiness.

Saturday, February 20, 2010

Food and it's effects

It seems that I really can't eat like I used to.  Nate says I say this after every meal, but it's because I cannot stress it enough.  Food that used to be norm for me will now suddenly feel like I gorged on heavily spiced oils.

Wednesday I went out with my girlfriends to a French restaurant, and had a pretty harmless meal (braised short rib with a side of polenta and steamed veggies).  I felt fine while eating, all was good.   I'll get into the cheese debate in a minute.

I get home and I don't feel too hot, but I just figure that it's because it's kinda late and these days I tire easily.  But on Thursday I felt awful.  Sick to my stomach, feeling nauseous at the mere thought of food.  I managed to make myself eat a few saltines and ginger ale, but otherwise I spent the day bedridden, unable to eat, and fighting a constant headache.  My mom told me it was because sometimes foreign specialty cuisines can be heavily seasoned, in a way our stomachs aren't used to processing.  But I think that was a bunch of bull.  Case in point, Friday I was finally able to chew, so I made myself some steamed rice and veggies, and only seasoned it with salt.  And I still had nausea afterward.    It's like my body's food aversions are changing so fast I can't keep up with them.  Miracle of life, blah blah blah, I'm getting frustrated with feeling like I have a constant stomach ache.

I'm also concerned that all this might have happened because I had soft cheeses.  It was a French restaurant, and they had a wonderful special deal of a cheese tray if everyone got an entrĂ©e.  And I knew in the back of my head that I wasn't supposed to have unpasteurized cheeses, and that those were common in soft imported cheeses, but I really didn't feel like asking, and I wanted a couple of tastes of the brie.  So I ate it, small amounts, but there is a paranoid part of me that is scared that I did damage to our little cupcake and that's why I've been so sick the last few days.  The doctor said to be responsible with my diet but not go crazy, that the baby is stronger than we think, but I'm feeling incredibly self-conscious about everything I do.  Mostly because my appetite seems to be all out of whack.

Today I wanted a bagel with lox, and came to realize that smoked fish is on the Avoid list for pregnant women.  Grrr.... Im' getting very frustrated with all that I can't eat.

Friday, February 19, 2010


[caption id="" align="alignleft" width="300" caption="Cupcake only 6 weeks in the womb"][/caption]

Last Friday we had the first sonogram of the pregnancy.  And, oh my goodness, we hard the heartbeat!!!

We went to the NYU medical center, where everyone was very nice, and the nurse made us feel like she was truly sharing the moment with us (even though I'm sure she sees fetuses every 10 minutes).  Then she stuck some camera contraption up my "princess" and voila, there was an image on the overhead monitor.  Nate was there holding my hand, and both of us were looking in awe.  At a blob, in all honesty.  The nurse said the baby looked healthy, but I have no idea how she could tell what was what.  Experience, obviously.  She patiently showed us what each part was, and the outline of my active ovary, and the feeding sack (she called it its backpack).  All in all, it looked like a blob of mashed potatoes.  Mmmmm.... mashed potatoes.

And then,  she turned the audio and we heard the heartbeat.  Super fast, but oh so clear.  And I felt the tears coming out my eyes, and looked over and Nate was equally excited.  It's the most amazing feeling.  I think the pregnancy seemed like the abstract thing that was happening to me until  I heard its heart.  It's a little creature, living in my belly, and I couldn't feel happier about it.

Afterward we sent everyone in the family an image of the sonogram.  Our families are super excited.

Cupcake, you will be loved, no doubt about that.

Tuesday, February 16, 2010

Natural Births?

I seem to be having a major existential crisis regarding the options of totally drug free natural birth at a birthing center, and the more medically invasive hospital births.   Truth is, I'm just scared of cesarean sections.  That's the ultimate driving force behind all the internal debate.

I am also terrified beyond belief of the pain from ejecting a human being out of my delicate lady parts.  I go back and forth.

On one side, our bodies were designed for birthing, and there is nothing more natural than the miracle of life.  On the other hand, historically there was a high rate of infant and mother mortality and birth was an incredibly risky life threatening process.  So far be it from me to critique the advances of modern medicine.  Sure, they might remove us from the purity of the birthing experience, but at least we are alive to complain about it.

We were talking with Nate about whether to use a birthing center or hospital.  And he's decided that I'm the type of person who needs to be in a hospital.  If only because i need to have everything at my disposal to make the informed decision to reject it.  He knows me well, and a non-tense mama is a happier mama.

Thursday, February 11, 2010

Having a cold

So apparently if you get a cold while pregnant you can't take medicine.  No antibiotics, no over the counter stuff.  Which is totally understandable, and something I agree with, but I think I underestimated how demoralizing it is to know that drugs are not an option.  I feel trapped by my cold.  And weakened because of my nausea.  I need to eat, but I am unable to stomach things. Yet I know that if I don't eat I have no hope of fighting this mild illness.

It's a vicious cycle and I'm not happy about it.

I do wonder what it would be like if it wasn't 30 degrees outside with 10 inches of snow.  Maybe if it wasn't so cold I'd be more energetic, more likely to be outside getting some movement into my system.  This is why I'm so happy that my big belly months will be in the summer.  I can handle uncomfortable heat so much better than the cold.

Wednesday, February 10, 2010

Pregnancy Simptoms

So lets start by talking about what's going on in my body, shall we?  I am getting very conflicted messages.  On one end there's a prevalent attitude that "you're not sick, you're just pregnant."  Empowering words meant to remind us that as modern women, we are in control of our lives and our bodies and can still live out lives to the fullest.  You don't lose your independence and identity because you become a mother, rather, you become energized by it.

And then there's the part where I really don't feel very well.  Morning sickness, exhaustion, headaches, and the constant feeling of bloating are bringing me down big time.  Specially the tiredness.  It makes me feel like I have to drag myself everywhere, and now it seems I can't even play volleyball, my one social and athletic outlet.   And when I talk to my parents about this, they seem to agree that its normal to feel under the weather, that my body is going through lots of changes, and that the best thing to do is sleep and relax.

Wait, I thought I wasn't sick?  Make up your mind.

I'm waiting for the "glow".  It doesn't seem to be happening yet.  Or maybe I have it but since we haven't told anyone yet it's not as obvious.  They say morning sickness and its associated elements end after the first trimester.  We'll see how it goes.

Tuesday, February 9, 2010

Starting out

About two and a half weeks ago, we took a pregnancy test and realized, to our total joy and surprise, that we were pregnant. We decided to name the zygot cupcake. First of all, it sounds much more poetic than zygot or embryo, and also, Nate's nickname for Natalia is Babycakes, so it would seem fitting that a babycake would have a cupcake in its belly.

We decided to start a blog to document the scary, amazing, overwhelming, and crazy experience that is becoming parents. We hope to include here things we find out about pregnancy itself, and infant care, our feelings regarding the issues, our symptoms, and hopefully someday look back and remember how young and innocent we were then