Update: 17 months

I haven't been updating this blog, and I fear that I'm kinda done with it.  I no longer need it, since MCAD isn't defining Cupcake's life the way I feared it would.  Our life situation has changed, with moving, I'm going back to work, etc.   Though I want to throw out the occasional update, because I've noticed people who google MCADD end up here, so I want to put out good vibes on the Internet.

Cupcake is now 17 months and she's walking, climbing, and starting to talk.  She plays with crayons, blocks and looooves reading books. Also, her latest obsession is babying her stuffed animals, she holds them, tries to feed them and walks them on her doll stroller.  It melts my heart.

She's also doing great health-wise.  At her 15 month check-up, she was at the 98% percentile for height, and over the charts for weight.  Because of that, we have been officially switched to low-fat (2%) dairy products.  We talked with our nutritionist, and we are on a heart-healthy diet, but  without any major restrictions beyond that.

Nutrition-wise, we have a little foodie.  Cupcake will try all sorts of new foods, and seems to have few texture problems.  Risottos, fish, soups, chicken, veggies, grilled meals, sandwiches, fruits, tacos, Thai, etc, she'll eat all of it.  Great for us, since we can cook one meal for the whole family.  We still stick by the old staples that she loves for snacks and lunch: bananas, blueberries, oranges, low-fat Greek yogurt, pita bread, turkey sandwiches on whole-wheat bread, cooked carrots, peas and bell peppers, chicken.  But she's cool when we want to try something else for dinner.  She's getting more opinionated about not wanting to sit on her high chair, but we're letting table manners slide.  It's more important that she eat a proper diet and develop varied taste buds.

On the breastfeeding front, we weaned at 16 months !  It was easier and harder than I was expecting, though one thing is for sure, it was the best thing for our family.  Cupcake now drinks cow's milk from a bottle.  We weren't able to transition her to a sippy cup, and thinking more about it, with her feeding requirements, we need her to still take a bottle at night.

We are still not taking L-carnitine.  Cupcake hated the taste (would violently reject it), and we had decided with our previous doctor to only take it when she was sick.  We've moved and have a new specialist in Texas, and on our first appointment he did full blood work.  Her numbers came out good (though she still has the genetic mutation for MCAD), so we concluded that she doesn't need any carnitine supplements.

We've made it 17 months without any ER visits or metabolic crises.  Luckily, Cupcake seems to have a tough immune system, and has managed to stay away from major illnesses.  To this day she's never had the stomach flu, RSV, or coxsackie, and for that, we're very grateful.  We take her out everywhere.  She's been in the NY subway several times, and goes to her fair share or playdates, library story times, grocery stores, etc.   We even took her abroad (more on that later).  We haven't done anything particular to protect her from germs, and we've been lucky that she's responded well.

Last month, we had our first ear infection.  Went to the doctor, who prescribed antibiotics, and commended us for catching it so early.  Nice.  She was on antibiotics for 10 days, and it was uneventful.  Her medicine tasted like bubble gum and she loved it; she'd even ask for more.   During this time, she didn't develop any major fevers, or have any appetite problems, so her MCAD was a non-issue.  Thank Dog.

Also, we have started part-time daycare.  The goal is to have her go full time eventually, but baby steps.  My main concern was how seriously they would take her feeding requirements (since MCAD sounds made up when you try to explain it, doesn't it?), and though the daycare was very accommodating and understanding, it took a few tries for all of us to be on the same page.  I had the daycare menu approved by our nutritionist.  The next issue is that in the toddler classroom, they expect kids to self feed.  Cupcake has been refusing to, so they have to spoon feed her.   I'm hoping she'll get the hang  of self-feeding soon, but currently our main concern is that she eat regularly.  It's one of those MCAD concessions, I guess.  We also send a banana daily in her bag in case she doesn't like the menu.  So far, they've had to give it to her a few times.

It's been quite a transition. Cucpake cried the first couple of weeks during drop-off   It broke my heart, but I knew it was a good place (I had personal references and just got a good vibe from the teachers). By now, 6 weeks into it, she's fine when we arrive, and is well rested and happy when I pick her up.  This decision has been good for our family, and she's learning new skills and socializing very well.   She's had a couple of colds and the aforementioned ear infection since she started, but that seems to be par with the course.

Her current sleep arrangement is a full-sized futon mattress in her bedroom floor, Montessori style.  This way, we can lay down next to her to help her fall asleep without braking our backs.  It's an in-between to co-sleeping. At night, we transitioned slowly to less feedings by gradually adding water to her bottles.  Cupcake has been cleared to go 8 hours at night without food, so we give her only water if she wakes before the 8 hour mark.  After the 8 hour mark, we give her some milk diluted with water.  The theory is that the water satisfies the sleep association and thirst, while slowly retraining the body's hunger cues.  I think this is why she STTNs some nights, but who knows for sure? 

When she's sick, we go ahead and give her some milk in her nighttime bottles, just to be on the safe side.

One last thing, Cupcake went on her first international trip to a South America!  The flight was exhausting (toddlers don't like staying on their seat), but she did very well during the actual stay.  We were visiting family, so we had lots of extra hands to keep her entertained and active.  Our concern was food, as lots of people get food poisoning when visiting South American countries.  It's just a fact, no judgment here.   We were extra careful to keep her away from uncooked foods, and poor Cupcake missed out on amazing tropical fruit and fresh fish.   Instead, she ate lots of chicken soups, cooked veggies, mostly homemade stuff, and what do you know, she never got sick.  I was still breastfeeding her then, so we knew that no matter what she'd have a calorie source at hand.  I'm really glad we were nursing, as there were many times we found ourselves with weird schedules because of all the family obligations, and I was able to keep her fed every 3 hours, no matter where we were (house, beach, park, car, etc).

Ok, this was way longer than I intended, but its been a while. 

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 having a constant snacker

I've made a great discovery these last few weeks that hopefully should help us deal with the days better.  Turns out that Cupcake is much more of a snacker than I ever imagined, and needs less naps.

In fact, it seems that half the time she looked tired and I thought she needed to nap, she was actually hungry.  I began to realize that she was tired but not actually going to sleep, and if I gave her food/breast milk, she'd perk right up.

So we've been doing a new experiment.  Cupcake is down to two naps, at noon and at 5 pm.  If she seems to be tired earlier than that, I try to feed her first.  If she's still tired after getting the blood sugar rush, then she's probably having a sleepy day.

It's a curious thing, and probably related to her MCAD.  When she's hungry, and her blood sugar goes down, she seems to crash more than other babies.  She whine, gets cranky, tired, rubs her eyes, is pretty much insufferable.   But once I give her food her entire demeanor changes.  She smiles, the color comes back to her face (I hadn't even noticed she was looking pale!), her energy comes back, and her entire demeanor improves.  It's such a change, and pretty remarkable.

It makes me wonder how many times I've tried to put her down for naps and she fought them, when she was actually only hungry.

Does your kid need to snack constantly?  Could it be FOD related, or is it just common infant behavior?  What are easy healthy snack ideas?

Ambivalent feelings about L-Carnitine supplements

So I'm gonna start off by saying that I'm not a fan of supplements, whatever their form.  I don't take vitamins, and I was reluctant to even give Cupcake vitamin D drops (in the end I was spotty about remembering).  I also don't give her iron supplements, choosing instead to make sure I'm feeding her meats/spinach/legumes.   This might make me a terrible, mom, but I'm cool with it.  :)

So when our doctor told us to give Cupcake daily L-Carnitine for her MCAD Deficiency, I was dubious.  But hey, I'll follow doctors orders if they're necessary.

Cupcake's New Born Screening numbers were very alarming.  So much so, that the Metabolic doctors recommended that we give her the highest dosage of L-Carnitine for her weight, which I believe was 2 ml per day.  Since we were new to the whole FaOD world, we did as instructed, and it was a colossal failure.  She would scream every time we gave her the drops, which was twice a day, and we would all dread them.  Still, if that's what's necessary, I figured we should toughen up.  I believe in modern medicine.

At our follow up appointment one week later we asked the doctor if the Carnitine was strictly necessary.  By this point, Cupcake's new labs were in, and her levels were much more stable.  She still had MCAD (I'd been hoping for a false positive, but no such luck), but the situation wasn't as dramatic.  And since Carnitine is controversial anyway, we made the decision together, with our doctor's approval, to only give it to her when she got sick. 

Our doctors trust us.  We had by that point shown them our anal retentive tendencies of tracking all her feedings and diapers, so I think they felt confident that we'd be able to make the call if anything was amiss with Cupcake.  Each case is different, of course, but I was more comfortable with giving medication only when absolutely necessary rather than as a precaution.

For her next two colds, we gave her L-carnitine from a syringe, and all was fine.  I doubt she liked it, but it was a non issue.

Then we had the recent Roseola fever scare.  When her fever spiked at over 102, we called the Metabolic Center, and they informed us that our new L-Carnitine dosage was 5 ml, two times a day.  That night, after she was done breastfeeding one side, we tried to put the syringe in her mouth and administer the meds.  Forcefully, I might add, since she was refusing it.  And then all h*ll broke loose. 

Firstly, she swatted the meds away, which seems like a normal reaction.  But afterwards, she started refusing all food and liquid.  I just don't think she trusted us anymore, after we had pried her mouth open to put nasty medication in her mouth. (And L-Carnitine smells nasty, I can't even imagine the aftertaste it must have)  Every time I tried to breast feed, she would scream and swat the boob away.  Luckily, she was okay with bottles of formula, and we were able to persuade her to have a couple of ounces.

For two days, she refused almost all food.  And this baby has one of the healthiest appetites I've even known.  It was probably the fever taking away her appetite, but it's too much of a coincidence that all this happened right after the Carnitine.  I think the two issues are related.

So we didn't give L-Carnitine to her again.  It seemed that our best shot to have her eat again would be to not freak her out with forced medicine.  Eventually she started eating, and her fever broke at just about the time we were to see the Metabolic specialist.

We discussed with our metabolic doctor what to do about the L-Carnitine next time she got sick.  And we all agreed that it's more important to have Cupcake eat real food (calories!) than take the medical supplement.  Her advice was to mix it with something to mask the taste, and she specifically recommended Hawaiian punch as something that has hides nasty medication flavors  I vowed right then and there to never judge another mother again if I see them feeding their babies nasty unnatural foods.  You never know the whole story...

So we'll be taking a break from Carnitine unless the Hawaiian punch business works out.  I understand that L-Carnitine supplementation has worked wonders for other children with metabolic conditions.  But in our case, we'll be playing it by ear for a while.

On weaning

Man, I think I'm gonna have to make an appointment with our Metabolic doctor soon, because Cupcake is showing sings of weaning.   At the ripe old age of 9 months.  

I'm having very conflicted feelings about this, which I'm sure it's normal.

Currently we nurse at 9 am (wake up time). 12:30 or1pm, 4pm, 7pm and 9:30pm (bedtime), 12:30 pm, (dream feed)  4:30 ish (if she only wakes up once a night, which... riiiight... it's the best case scenario).

(As an aside, I'd like to share that technically, Cupcake can go longer between feeds - we're at 8 hours overnight- and doesn't metabolically need the midnight feed.  But we do it anyway, because otherwise she'd wake up at 2am, just as I am reaching my own REM sleep.  We have to work together, child.   But even though medically she could sleep longer, she seems to still get hungry during the night, after about 5 hours.  You can't convince me that MCAD is unrelated to to appetite.  I was told that the only issue with her MCAD is to feed her, so if she's hungry, homegirl is getting milk.  Hopefully this will sort itself out as she gets older.)

Aside over.  

So we've been having lots of trouble with the bedtime feed.   Cupcake is tired, fussy, and my letdown is super slow at the end of the day.  Also, and this might be the biggest factor, she usually has dinner with us at about 8 pm.  I'm beginning to think that milk at 7, solids at 8, and then again milk at 9:30... maybe not such a good idea.  By the time bedtime comes along she's probably not that hungry.  She'll usually eat, but more and more often she likes to be at the boob, but gets frustrated after a few minutes.  We go on with the routine and read books instead, and she doesn't seem too upset about it.  Seriously, sometimes she skips her bedtime milk,  which I thought was supposed to be the sacred one.

I'm thinking of combining the 4 pm and 7 pm nursing sessions.   As it is, the 4 pm is a complicated one too.  The way her naps work, I end up combining her 4 pm milk with her solid lunch sometimes.  And as we are usually out at the park at this time, she doesn't seem to interested in breastfeeding.   So maybe I'll just do one nursing session at about 5:30 or 6 pm, so that by the time bedtime comes along she'll actually hungry.

We'll see.  I'm hoping that in response to this adjusted feeding schedule, her naps will reorganize as well, and she'll go into two longer naps, instead of the current three.

Next week there's a La Leche League meeting.  I'll be curious what they have to say about it.  I'm fine with weaning.  Though I love breastfeeding, I'm not particularly interested in extended nursing.  I mean, if Cupcake has a hard time letting go, I'll keep giving her the boob as long as needed, but I have a feeling that won't be THAT long.  She likes real food way too much.

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?

New Schedule

I'm trying to figure out a new schedule for Cupcake, and I'm still hesitant to try it out.  I'm not sure why.  

She's fine, we're fine, let's not rock the boat, right?  Except that now she's sleeping longer naps (finally!  hour long naps!), and because of solids we need longer time between feeds.  I'm trying to not interfere with her breast milk intake, so I'm not feeding her food less than an hour before she's due to nurse.  This, of course, presents it's own set of logistical problems, because she'll oversleep, or we have plans out of the house, etc etc.  If my entire life was only about her food and sleep we'd be fine, but as I've discussed a couple of days ago, I need some other distractions in my life. 

Thankfully, her MCAD hasn't presented itself in a dramatic way, so we can be a bit more flexible now with her feeds.  We can go 6 hours without food, which gives a gigantic leeway throughout the day, and it's a bit overwhelming to have such freedom.  I'm realizing now that many of our early schedule/parental decisions were based on her medical condition.  I'm also realizing that we set up a day schedule about 5 months ago and haven't updated it too drastically.   It's time.

For starters, she's waking up earlier now.  Her nighttime sleep is now about 10pm - 9 am.(not straight through).   I'm thinking of going 3.5 hours between daytime feeds instead of every 3 hours, and I'm hoping that the extra half hour will give us more breathing room between nursing sessions.

I'm also torn because I always wanted to be one of those attachment parents who feed on demand (it's the best for milk supply, right?), but when we got the MCAD diagnosis we had to change our plans.  Not that you can't feed on demand with an FOD, but the practical implications were too much for me.  In order to make sure she wasn't going longer than 3 hours throughout the day (we'd been told 3 -4 hours, and we decided with our metabolic doctor to do 3 during the day and 4 at night), I would have to keep track of every time she was eating.  It was so stressful to have to worry of when she ate last, where the notebook was, had it been too long, not long enough, finally I just decided to set up a schedule and stick to it.  It was the best decision we could have made.  We had regular nursing sessions, I knew what to expect, and I wasn't constantly concerned that she would go into fasting mode.  However, now that she's 7 months old I can actually feed on demand, since the threat of fasting isn't as imminent, but I fear that I won't recognize her hunger signs and I'd be overwhelmed by deciphering is she's hungry, tired, bored, achy, etc.

So.... I'm gonna run through some options and see if they logistically work.

9 am wake up ... 9:30 milk  ... 10:30 food ... 10:45-11:00 am nap (wake up at noon?)  ... 1pm milk ... 2pm food  ...  2:30 nap (wake up at 3:30?) ... 4:30 milk  ...6 pm nap (wake at 7pm?) mmmm... usually she nurses at 9:30, but that would be 4.5 hours from her last session, and though that's acceptable by MCAD standards, I don't think it's gonna work for for her.     

9am wake up ....  Milk between 9 am - 10 am based on hunger cues  ... 10:30 am food  ... 11:00am nap (wake up 12?)  1:00 milk  1:30 food   2:30 nap (wake up 3:30?)  nurse 5 pm  6 pm nap 8:30 milk? .... won't work, it's not her bedtime.

I'm gonna try working back from her bedtime.

9:30-10  pm last milk.....   7 pm milk   6 - 7 pm last nap.  3:30 pm milk  nap 2:30-3 pm   12 noon milk  9-10 food.... this looks all scrambled, but to put it in order:

wake up: 9 ish.   

Milk: 9-9:30am   

Nap: 11 - 12  

Milk: 12 noon   

Food: 1 pm   

Nap: 2:30-3:30pm   

Milk: 3:30pm   

Food: 4 pm  

Nap: 6-7 pm  

Milk: 7 pm  

Food Snack: 8:30pm    

Last Milk Feed: 9:45pm

Bed: 10 pm

Dream Feed Milk: 12midnight

Milk: 6am

I realize that the 6 hour span between midnight and 6 am is a bit of a joke at the moment, but that's what we're aiming for.  Let's give this slightly modified schedule a try... since it's based on the natural schedule she seems to be taking.  We shall see how it works.

To supplement with formula, or not? That is the question

I've been having some serious thoughts of adding formula to Cupcake's diet.  Which is difficult for me, because I've been staunchly against it. The La Leche League people really did a number on me.

The thing is, a few days ago she had her first bottle of formula ever, and the world didn't collapse like I expected it to. I've run out of pumped reserves.  I'm at a loss.  My milk supply has stabilized to the point that the only times I have extra milk to spare is in the middle of the night.  So a couple of nights per week, I get up after Cupcake's 2 am and 6 am feeds and pump the other side.  Not a sustainable system, I know.

We've managed to only consume what I was storing until the last migraine.  (I should share at this point that my migraine medication is not compatible with breastfeeding.  So for 12 hours, I have to give Cupcake bottles, while I pump-n-dump.)  So the other day, when I was feeling like doodoo and had to take my meds, we had no choice but to give Cupcake some of the emergency formula we had stashed around. 

To my utter surprise, I was okay with this decision.  I think it's because I made it to to 6 months exclusively breastfeeding.  And a pat in the back to me, it was no easy task.  I am so glad we struggled through it, as it's been an incredibly rewarding experience.  At this point the weaning process has already started, because she's exploring solids.  So while I want to keep breastfeeding for a year, the idea of giving her formula here and there doesn't feel as tragic. 

Lo and behold, Cupcake took it with no problem.  I'm lucky that if  I'm gonna have an FOD child, at least she's one of those kids that seems to eat whatever is in front of her.  And heartily.  Formula, bottled breast milk, mashed bananas, pureed veggies, they are all good. 

So now I'm at the weird place where I'm wondering if we should start giving her a bottle of formula for her 3 am feed. It would be easier for all of us to just give her a dream-feed bottle while she's still in her crib. (Yes, her oral hygiene be damn*d, at this point we have more important metabolic things to worry about.)  And it would take some of the pressure away from me, as Nate could give her milk half the nights.

I struggle with this, because I know that giving formula on a regular basis can affect my milk supply.   And I love breastfeeding.  I really do.  I cherish being able to provide for my own kid, and feel very lucky that we were successful with it.  What if I end up compromising my supply?  What if she ends up weaning to formula against my wishes?

I don't want to sabotage my breastfeeding.  I also need a break. Then again, it's only a few more months until she's drinking cow's milk, so maybe I should just tough it out for 5 more months.  I have a feeling that I'm going to go back and forth with this, and by the time I make a decision, it'll be almost the 1 year mark and it will be a non-issue.  Or so I hope, at least.

6 month MCADD appointment

I'm not a fan of doctors offices, in particular with specialists that tend to overreact and make my life dramatic.  But I couldn't be happier with Cupcake's metabolic team at Mt Sinai, though.  They are easy going, warm, and very reassuring. 

Cupcake is 6 months now, and she went for her mid-year appointment.  She's doing great!  No metabolic crisis so far (which we don't know if it's because she's asymptomatic, or because we've been diligent with her feedings; in either case, yay!!).  She weighs almost 18 lbs, and is tall for her age.  Which is unrelated to MCADD, but it's reassuring to know that she's growing rapidly.  Then the doctor played with Cupcake a bit, to get a sense if she could respond, babble, sit on her own, had a good grip, etc.  And of course she can do all those things!  So to our immense relief, they decided they didn't need blood samples.  Cupcake is hitting her physical milestones well, and is fat and growing, so there's no point in getting a metabolic breakdown at this point.

Also, we've been cleared to have her go 5 HOURS without feeding.  And another hour every month until we hit the 8 hour mark.  Our doctors here don't feel comfortable having her go longer than 8 hours until she's about two, mostly because her initial C8/C10 numbers as a newborn were really high (or was it low? whatever it was, it was not the desired amount, lol).  So now we have the luxury of sleeping one whole hour longer, and a baby that probably will not cooperate.  Whatever, I'm just excited to join the throng of parents that can complain about normal night wakings. And isn't 5-6 hours technically considered sleeping through the night?  Music to my ears.

The older cupcake gets, the less MCADD scares me.  She's 6 months now, she's eating solids and still breastfeeding wonderfully.  Her body is strong, and she's getting more and more antibodies as she's exposed to the world.  She's up to date with her vaccines.  She'll have stronger defenses to fight disease.  I know that with an FOD you're never out of the woods, but as she gets bigger and older it feels much more manageable.  My heart goes out to all my fellow mamas that had to take their weeks-old babies to the ER.  It must be very scary and you have my utmost admiration.

So now we are diving into solid foods, and our doctor told us not stress over it too much.  Keep nursing Cupcake at our normal times, and she will naturally take less milk as she eats more food.  It's easy during the day, when we can observe if anything is different.  The danger is at night, when we wouldn't notice if she's lethargic because she's sleeping, and we are too tired.  We were even told to not worry about her diet too much at this point, since she'll still be nursing and getting all her proteins from me.  We'll go back to see them in 3-4 months, once Cupcake starts taking protein and her eating habits shift to solid food.  At that point, we'll meet with a nutritionist to give us some tips.  But even then, it seems that as long as she's not fasting, MCADD doesn't require a strict diet.  Just make sure it's low fat, but that's what ALL of us should be eating anyway.

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.

Fun with solids

Cupcake has been starting slowly on solids for about a week now.  She's just so into it!  Since she was about 4 months old, she would stare at us as we ate and reach out for our food, so we'd give her little tasters, a carrot to play with, let her gnaw on pita bread or something similar.  But it was very sporadic and just for fun.

Now, once she got over her cold, we decided that she was overdue to try actually eating.  Our plan was to try to feed her some carrots, see if she'd like it, and take it from there.  We actually expected her to be interested in the concept of food, but not it's actual delivery.  We weren't going to force solids on her, she'd start when she was ready.

I steamed some baby carrots, and then ground them with a little manual grinder we bought just for this.  And fed it to her with a baby spoon.

The first spoonful she kinda made a face, put the food in her mouth, and then slowly spit it out.  No biggie, we let her play with the spoon, it was all good.  We were having our own dinner at the table too.  I tried giving her some again, and she just looked so happy, so expectant.  And after a couple of times she totally got the swallowing business down, and kept opening her mouth for more.  She'd eat, grab the spoon and put it in her mouth.   So awesome!

We fed her carrots for three days, she did great, and then last night, while I went out for a birthday dinner, Nate gave her some mashed banana. From the smells and surprises coming out of her diaper this morning, she really enjoyed and fully ate the piece of banana.

I'm so excited about my little girl growing, and embracing food, but this diaper?  It might have been the most horrifying thing I've ever seen come out of a butt.  I hear it only gets better !!  And I'm so excited by how happy she looks when she eats that I'm okay with the future poops.