Monday, March 25, 2013

10 Long Hours

He did it.  He slept for 10 straight hours last night.  He was a bottomless pit all day yesterday, polishing off an entire slice of french toast for breakfast, a whole slice of pizza for lunch along with 1/4 of a breaded chicken breast and probably two full adult servings of butternut squash at dinner, in addition to other fruits, veggies and snacks throughout the day.  He ate graham crackers just before his bath at 7:30 and he drank 8 oz of whole milk at 7:45 as he was drifting off to dreamland.  It had been a busy day of playing with his big brother and building snow forts in the back yard, so we knew he was tired and we knew his belly was full.  Usually, he fusses a little when he's sleeping.  We'll hear him cry for 20 seconds and then he's quiet again.  Not last night.  We didn't hear a peep all night.  He was one tired little boy!    

I woke at 4:18 a.m. and did the math for how long he had been asleep -- 8.5 hours.  Then, I wracked my brain to try and remember if I had given him a bottle -- nope, I was sure that I had been in bed all night and hadn't sleep walked through a feeding.  Was he ok?  Should I go check on him?  Maybe I should go wake him and feed him...just in case?  I layed in bed awake for the next hour and fifteen minutes reciting the doctors words to myself over and over -- he can safely go for 10-12 hours without eating now, he'll be fine.  I fought the urge to go and wake him.  Trust.  Trust.  He's fine.  He's just sleeping. 

My husband's alarm went off at 5:30 a.m. and his first instinct was also to inquire about LB's night.  Did he really sleep all night?  Wait, how long has it been?  Do we need to go wake him up?  We did the math together and, realizing that it hadn't even been 10 hours yet, reassured ourselves together that he was fine.

Finally, at 5:55 a.m., he started to cry.  His cries are starting to be less crying and more calling out for me.  He was alternating between crying and yelling "ah-mah, ah-mah" (which I think is his way of asking for his mommy :-).  I went in and made him a 6 oz bottle of formula. It was probably the fastest, I've ever mixed up a bottle in my life.  As soon as the bottle hit his lips, he relaxed, sighed and settled back to sleep.  The bottle disappeared in an instant and he continued to sleep in my arms with his little head cradled against my shoulder.  It was a relief to know that he had eaten.  It was a relief to hold him in my arms.  This sleeping for 10 hours at a time thing is going to take some getting used to.

We would have woken him a little after 6:00 a.m., which is our usual work-day routine, but he woke up a little before that.  Even so, I think sleeping from 7:45 to 5:55 counts as sleeping through the night.  His first full night of sleep! 

Saturday, March 16, 2013

The New Normal...Without an Alarm Clock

As I mentioned in a recent blog post, I had a little bit of trepidation about no longer tracking LB’s feedings.  After our latest round of doctor’s appointments, all signs pointed to me needing to let go and just let him be a normal kid.  He can now have a normal kid day for meals – breakfast, morning snack, lunch, afternoon snack and dinner (kids already eat a lot don't they?) – without me writing anything down.  He can sleep for 10-12 hours at night without being woken up to eat. Granted, we still need to have a general idea that he is eating regularly throughout the day and we’ll still need to keep close tabs when he is ill, but we don’t have to track every morsel quite so closely on a day-to-day basis when he is well. 
Our older (not affected by MCADD) son had given up his middle-of-the-night nursing and was regularly sleeping through the night by the time he was about 6 months old.  Although it was only less than 3 years ago, the concept seems completely foreign to me now after parenting a child with MCADD.  “He can really sleep ALL NIGHT LONG?” I asked our metabolic specialists.  “Yes, he can safely go for 10-12 hours now,” they reassured me.  Wow, 10-12 hours is kind of like an eternity when your last year has consisted of gradual steps forward from feeding the baby every 2 hours, then every 3, then every 4…  Whatever will we do with this much sleep?!

This new philosophy on his feedings has been both terrifying and liberating.  Even though our trusty alarm clock doesn’t ring at 3:30 a.m. anymore, my internal alarm clock still does.  I still wake several times during the night with my first inclination being to look at the clock and figure out how long it has been since LB’s bedtime bottle.  Instead of springing out of bed to feed him, I now have to talk myself out of going in and feeding him just in case (which I am successful at doing about 95% of the time) or merely creeping into his room to check on him (which I am successful at doing about 50% of the time). 
It has only been a week since we stopped keeping track of his food intake in our notebook and stopped setting the alarm at night and I’m already sensing some differences.  To all outward appearances, I’m sure he’s just a normal toddler to everyone else, but knowing that I can hand him a sippy cup of milk without measuring how much is in it or calculating how much he drinks is a definite source of relaxation for me.  I'm starting to see LB as a regular kid instead of as a baby to be cared for with extreme precision and diligence.  In addition, I’m starting to see LB relish his overnight sleep.  He is still waking once per night (and I’m still feeding him when he wakes up), but he seems to be sleeping more restfully and waking up more happily with each passing day. 

Our plan forward is to let LB drop the middle-of-the-night feedings on his own.  If he wakes up, we’ll give him 4 oz of formula (which is quicker and easier to deal with in the middle of the night than having to run to the kitchen for milk). Our older son dropped his nighttime feedings on his own without crying it out and I’m confident that LB will do the same when he is ready.  It might take a while considering how artificial his overnight sleep schedule has been to date, but I know it will happen eventually.  It’s only been a week and I’m already seeing him rest more peacefully, so it might be sooner than we think, too.

Friday, March 15, 2013

A Year of Gratitude - Consumer Task Force Post

I am very proud to announce my first blog post as part of the Baby's First Test 2013 Consumer Task Force on Newborn Screening!  Please visit to read about how newborn screening saved my baby's life...and prompted me to become an advocate.

Wednesday, March 13, 2013

TIP - Hearty and Healthy Snacks for Bedtime or Anytime

As I mentioned, we got an excellent list of snacks from our metabolic clinic at LB’s last appointment.  These snacks were recommended by a dietician as a healthy way to keep filling and nutritious food in the system of someone with a metabolic disorder like MCADD.  As always, you should check with your doctors before feeding anything new to your little one…and you should only feed age-appropriate items.

A snack can be thought of as a little meal, rather than a treat.  Healthy, balanced snacks should include a source of protein and a source of carbohydrate. 

Example Proteins (can be fat free or low fat):
  • ¼ cup cottage cheese
  • 1 oz cheese
  • 4 oz low sugar/carbohydrate yogurt
  • 4 oz milk
  • 4 oz infant formula
  • ¼ cup beans
  • ¼ cup hummus
  • 1 slice lunch meat
  • 4 oz pudding (made with milk)
  • ½ egg or 1 egg white
  • 1 oz tofu
  • 1 Tablespoon peanut butter
  • ¼ cup nuts (non-sweetened, not honey roasted)

Example Carbohydrates:
  • 1/3 – ½ cup unsweetened cereal
  • ½ - 1 mini bagel
  • ½ banana
  • 1/3 cup oatmeal
  • 1/3 cup porridge
  • 3-5 whole wheat crackers
  • 2-3 rye crisps
  • ½ whole wheat pita bread
  • 1 slice whole grain bread
  • 2 graham cracker squares (not sugar or cinnamon)
Put it all together and you get some great snack ideas, especially for the much-needed bedtime snack:
  • Unsweetened cereal (like Cheerios) and milk
  • Unsweetened cereal and yogurt
  • Graham crackers and milk
  • Whole wheat crackers and cheese
  • 3 graham cracker squares with 1 tablespoon peanut butter
  • 1-2 slices low fat cheese and/or lunchmeat and 4-5 crackers
  • ½ sandwich (1 slice whole wheat bread with 2 tablespoons peanut butter or 1 slice deli meat and 1 slice cheese)
  • ½ English muffin with light cream cheese or peanut butter
  • Mini bagel with light cream cheese or peanut butter
  • Pizza bagel or pizza English muffin (1 tablespoon of tomato or pizza sauce and 1 oz low fat mozzarella cheese on half a bagel or English muffin, warmed or toasted)
  • Celery sticks and 2 tablespoons peanut butter
  • ¼ cup cottage cheese plus ½ cup pineapple or 2 pear halves or 2 peach halves
  • ½ small banana with 1 tablespoon peanut butter
  • Granola bar that contains fiber and protein
Happy snacking kiddos!

Sunday, March 10, 2013

Happy Birthday!

I woke up on LB's birthday as happy as could be. We made it! He's one year old! Hooray!! I was so excited and ready to celebrate, that I stopped at Panera on the way to work and bought a bag of bagels to put in the kitchen.

Once we got home, it was party time!

We went right into cake for fear of the sugar rush that might overtake the kids if we did cake after dinner (and immediately before bedtime)...
He dug right into his cake...

and the smashing started immediately...

He got some really cool presents...

including this nifty bat mobile!

Happy Birthday, Baby! We love you so much!!

Saturday, March 9, 2013

Metabolic Appointment

We just had our one-year appointment with the metabolic clinic and in many ways, it felt like a victory celebration.  I remember at our very first appointment, they told us that the first year would be the most difficult, but that LB would be more and more like a "normal" kid once he reached that milestone.  He would be able to go longer between meals as his body grew and matured.  He would be able to sleep through the night.  He would be able to eat on a more normal schedule (instead of every few hours around the clock). All of this is true now.  When he is ill, we still might need to wake and feed him, but when he is well, we were given the green light to let him sleep for 10-12 hours at night (provided he eats well during the day and has a hearty bedtime snack).

His metabolic specialists are not recommending any special diet for LB.  They did give us a great list of healthy bedtime snacks that I will post later, but other than that, we were told to feed him a normal, age-appropriate diet.  Apparently, they used to recommend a low fat diet for children with MCADD and refer them to a dietician, but they don't see a need to anymore. They said he could transition from formula to milk and didn't need to move into a toddler formula for any period of time beforehand. 

I have read a lot about children with MCADD being given cornstarch in milk as a way to maintain blood sugar, but when I asked about it, they also said it was unnecessary for LB.  They mentioned that cornstarch is often recommended for something called "brittle MCADD" where children with MCADD also have an on-going issue with low blood sugar.  LB doesn't seem to have any issues with blood sugar, so as long as he's eating normally, there wouldn't be a need to dose him up with cornstarch for a blood sugar boost.  We also, of course, still have the polycose in the cupboard which we can use to introduce additional sugar to his diet during times of illness.

They are doing some bloodwork to check his carnitine levels (which they do at every appointment) and they will let us know the results.  If it is low, we may need to supplement him with oral carnitine, which we already have on hand to use during times of illness.  We should know that within the next week.

Speaking of bloodwork, we finally got around to talking about my acylcarnitine profile results, too. Everyone in the family had a acylcarnitine profile performed shortly after LB's birth to confirm that no one else in the family has MCADD. My husband's bloodwork and our older son's bloodwork came back stone-cold normal. Mine came back with two abnormal results - an elevated C4 and C8. They told us that it wasn't MCADD, but I kept forgetting to ask at our other appointments and I was still curious what it might be (it just seems strange that such an unusual bloodwork panel would come back abnormal for someone who is seemingly healthy, but who has a child with MCADD). They surmised that it may be indicative of my carrier status, but that it wasn't anything to be concerned about. It definitely wasn't MCADD.

We spent quite a bit of time talking about genetics at this appointment, too.  The doctors inquired whether we were planning to have more children and at this point, we're just not sure.  We think we may be done, but there is what we keep referring to as "that nagging 1%" chance that we might try for #3.  They told us that there were a few options for pre-natal testing to diagnose MCADD.  We could opt to do in-vitro fertilization and select only the embryos that are not carriers of MCADD for implantation or we could conceive naturally and take our 1 in 4 chance that our next child would be affected by MCADD (and 2 in 4 chance they would be a carrier or 1 in 4 chance that they would be neither affected nor a carrier).  If we conceived naturally, we would be able to test for MCADD using an amniocentesis or we could wait until after birth to conduct a blood screening.  If we waited until after the baby was born, they would recommend that we feed formula and do the blood test immediately to make sure that the baby would be safe until we knew his/her MCADD status for sure.  We would not have to wait for the traditional newborn screening test results to find out, although the screening would still be conducted.

We also got the results of LB's DNA analysis.  They screened for only the common mutations and found that LB has one common mutation and one uncommon mutation that they were unable to locate within the bounds of the DNA mapping that they performed.  We would need to talk to our insurance company to discuss the cost of a full DNA analysis to find LB's other gene mutation and it could be pretty expensive.  Apparently, insurance companies tend to balk at paying for this level of testing since it doesn't change the course of treatment, so it would likely be a hefty out-of-pocket expense for us.  We agreed that we would not pursue the full DNA analysis at this time, but that maybe in 20 years when our kids might start thinking about kids of their own, they may choose to pursue that more extensive testing to determine 1) whether our oldest son is a carrier and if so, of which mutation and 2) what the uncommon mutation is for LB.  At that point, DNA mapping will probably be a whole lot less expensive, too.

In all, it was a great appointment.  It's always great to hear that your child is doing well and developing completely on schedule.  Considering how worried we were the first time we set foot in the metabolic clinic one year ago, this appointment was a breeze.  We'll only need to be seen every six months going forward (another benefit of LB getting bigger and out of the critical and worrisome first year).

Monday, March 4, 2013

My Baby is Growing Up

It has been an emotional few weeks.  Something about my baby turning one this week has my emotions in overdrive.  While I am thrilled beyond belief that LB is growing and blossoming into such an adorable and energetic little boy, a part of me is also a bit sad that he’s no longer the tiny, cuddly bundle that I brought home from the hospital not so long ago.  Like all parents will attest, babies grow into little boys far too quickly.  You blink and that cooing little cherub swaddled in a receiving blanket is now running through your kitchen wielding a light saber and rabble-rousing with the dog.  It doesn’t seem possible that it can happen so fast, but it does.

Shortly after LB was born, we learned that he had MCADD and maybe this is playing into my emotions over his first birthday, too.  As we were educated on his condition and the newborn screening system that had detected it and saved his life, I went through a period of time where I was consumed with gratitude.  In all honesty, I have yet to shake that overwhelming sense of thanks.  While every child is a joy and a blessing beyond words, LB truly gave us an extra reason to know that we had been blessed.  Every ounce of food that enters his body is a blessing and a source of joy because I know how essential it is to sustain his fragile metabolism and to keep him healthy.  Every single day that we have him is a blessing and a source of joy because he could so easily have been taken from us if not for that simple heel stick in the hospital that alerted us to his health condition.  It’s almost as if every milestone that he reaches is one more victory over his disorder and one more step forward in a journey that is still sometimes pretty scary... It definitely feels like I’m hyper-conscious of everything with LB because the alternative is always present in the back of my mind – we could have lost him – and that alternative would be utterly unbearable. 

With his older brother, I certainly don’t remember this milestone being so difficult.  Maybe this is because when our oldest son turned one, we were certain that we wanted to have more children and that, more than likely, there would be more first birthdays to celebrate.  With LB, we don’t have that certainty.  We might have another child, but we might not.  Maybe this will be the last time we celebrate a first birthday and that possibility has me clinging all the more tightly to every moment leading up to his big day.  I imagine this is also what has me clinging so tightly to all of his milestones to date and simultaneously cherishing and mourning and celebrating each one. 

I read something this week that helped me put words to all this conflict occurring in my mommy brain.  It’s been awhile since I dog-eared the page of a book because the prose struck a chord so close to my heart, but I definitely (digitally) dog-eared this passage in The Poisonwood Bible by Barbara Kingsolver:

…I took one deep breath for every step they took away from me.  That’s how it is with the firstborn, no matter what kind of mother you are – rich, poor, frazzled half to death or sweetly content.  A first child is your own best foot forward, and how you do cheer those little feet as they strike out.  You examine every turn of flesh for precocity, and crow it to the world.

But the last one: the baby who trails her scent like a flag of surrender through your life when there will be no coming after – oh that’s love by a different name.  She is the babe you hold in your arms for an hour after she’s gone to sleep.  If you put her down in the crib, she might wake up changed and fly away.  So instead you rock by the window, drinking the light from her skin, breathing her exhaled dreams.  Your heart bays to the double crescent moons of closed lashes on her cheeks.  She’s the one you can’t put down.

He’s my baby and as much as I want him to grow and thrive like his older brother, I also want him to just be my baby for as long as possible.  I don’t want him to grow up quite so fast as his older brother did.  My husband  keeps reminding me that even though he’s going to grow up, he’ll still always be my baby – just like his sister is the baby of his family and I’m the baby of my family.  That provides some measure of comfort and I’m hoping it will be enough to let me concentrate on the celebrating more than the moping every time I’m confronted with another milestone that reminds me that my baby is growing up so fast.  I definitely want to celebrate many more birthdays with him and I’m thankful that we can…let’s just not have those birthdays come too quickly.  I still want to snuggle my baby for a few more days.