Milestone Acheived

Tonight marks the very first night in almost two years that I have put Cameron to bed without being connected to a feeding pump.  I am so very pleased about this.  And even though it wasn't the BEST eating day, he did end it well by drinking 7 oz of whole milk with Carnation Instant Breakfast mixed in for some extra calories. 

This may be my only update for a few days.  My laptop is busted beyond repair and my replacement is on its way.  I can post from my phone but it's a pain, and to post from my husband's computer is like putting someone else's shoes on... Just weird.  Obviously I have more info about the boys and their progress to write about, so bear with me and I'll post as soon as I can.

What do we want? When do we want it?

What does Cameron want?  FOOD!  And when does he want it?  NOW!

I really need to up my cooking game.  It's not enough to make kid friendly foods, I now have to make them faster and with more variety.  And ALL of it has to be high calorie, which is a real problem because even though he's eating so well there's lots and lots of leftovers.  And I swear his grilled cheese that is made with real butter on both sides and extra butter in the pan, mayo on the inside and muenster cheese and a slice of ham tastes far better than my own low calorie version.  I might as well make one for each of us right?  This will be the year that I gain back all 70lbs of pregnancy weight I lost two years ago on a dairy/lactose free diet.  *sigh*

What does Cameron eat?  Here's the list:

Ham steak
Buttered noodles (prefers rotelle shaped pasta)
Alfredo sauce on curly shapped noodles
Macaroni & Cheese (both name brand and homemade)
Ravioli (small size, only cheese and spinach for now, working on meat)
Rice with flavoring (ie. chicken & broccoli rice, cheesy rice, fried rice)
Crunchy BBQ Ranch burrito from California Tortilla (no lettuce because it's cut in long shredded strips, no beans because Mommy doesn't like them)
Chicken nuggets (prefers the Tyson dino shaped nuggets but will eat any kind as long as they are soft)
Sloppy Joe sandwiches (smoosh the bread flat and cut into small bite sized squares about thumb size)
Artichoke Flan from Wegman's (Mommy loves this too.)
Cheese pizza
Mini quiches
Mini pancakes with syrup and butter
French fries
Sweet potato fries
Potato pancakes with veggies
Veggie sticks and disks (he's not discriminate against shape)
Cheese puffs and Smart Puffs
Skinny pretzel sticks (aka. kretzels)

Stove Top Stuffing (He was rolling his eyes back in his head in ecstasy tonight when he tried it.)
Steamed carrot slices
Steamed green beans
Steamed broccoli
Mild cheddar cheese
Some kind of white cheese at a birthday party, trying to figure out what it was
Diced peaches
Mandarin oranges in syrup
Diced pears (but he's not crazy about them)
Grapes
Raisins
Apple (must be cut up in small chunks without skin)
Banana
Kix cereal
Cocoa Pebbles cereal (must have what Daddy is having)
Cheerios
Nilla Wafers
Fig Neutons
Teddy Grahams (honey only)
Goldfish crackers
Ritz Crackers
Gerber freeze dried apple, banana, strawberry
Gerber fruit twist snacks (these are a fantastic chewing exercise for kids)
Cupcakes
Birthday cake
Chocolate chip cookies (but only the soft kind)
Brownies (no nuts)
Baked apples in cinamon
Yogurt
Some Greek yogurts
Scrambled egg with butter, heavy whipping creme and cheese
Toast with butter and sometimes with honey
Grilled cheese
Grilled diced ham & cheese (must be diced lunch meat because he can't pull the meat apart with his teeth yet)
Chicken & Stars soup
Entamen's Little Bite blueberry muffins
Hot Dogs
Vienna Sausages
Whole milk
Carnation Instant Breakfast
Apple & Eve juice in Punch, Berry, or Apple flavors watered down half & half
Water

I feel like I'm forgetting something on this list.  And I'm thrilled at the diversity of the foods Cameron eats too, I owe that to the wonderful conditioning that our feeding clinic at Mt. Washington has helped us achieve.  Now I'm in constant search for some new great foods to try with him that are simple and quick to make but have lots of bang for our buck in calories.  It's a bonus if it's a food I can easily make fresh in small quantities because I end up eating leftovers or throwing much of it out because he can't eat it all and Evan refuses to touch food to his teeth.

What are your toddler's favorite foods?

Santa Came to Town

Every year Santa comes to town for a pre-Christmas tour.  He hitches a ride on the back of an enormous red fire truck and he and all his volunteer fire department buddies drive through the neighborhood.  They have flashing lights, horns, sirens and candy canes galore.  And most importantly they have Santa lit up with a big spotlight, so even the tiniest Who in Whoville can't miss him from the cozyness of their front door.  It's a toss up for which is cooler when you are a two year old with a penchant for fire engines or any vehicle with flashing lights and sirens.  I hope that Santa doesn't mind that this year he was a bit overshadowed by his mode of transportation.

I mean, the Man in Red is awesome.  But Cameron and Evan don't really understand who he is.  He's just a very nice guy with a big white beard, wearing Cameron's second favorite color (the first is pink), and he has a funny laugh that Evan likes.  They don't know exactly who he is or what he does.  They don't get who the Elf on the Shelf is despite the fact that we keep reading his story to them.  And they don't even really understand what presents are.  But they know what a fire truck is and boy is it "super cool".

Mr. Claus stopped right in front of our house tonight.  Lights a flashing, sirens full steam.  You would have thought this might freak the boys out to be so close to all this commotion.  Evan was speechless, jaw slack and eyes big as saucers.  He pointed and quietly mouthed in a soft little voice uninteligable over the noise of the trucks, "Nee-nahs! Nee-nahs!"  (Nee-nah is what a fire truck says, so that's what the boys call them even though they know they are called fire trucks.)  Cameron was yammering away, "Look Mommy! Look Mommy! You see the fire trucks?  You see the am-beh-lance?  Hi Santa on fire truck! Hi fire truck!  I love nee-nah! Look at the nee-nah Mommy!"  The volunteer fire fighters would jump off the truck and run to each family in their yard and hand out candy canes.  We gave them our donations of non-perishable foods for their food drive too.  Then we watched them slowly drive down the street.  Thankfully it was chilly, but not cold and not windy at all so we were able to stand in our yard to watch as the trucks left our street entirely.

When it became evident that the trucks were leaving us behind and not coming back Evan melted down with some hysterical crying.  He bawled in Drew's arms, then when set down on the floor of the playroom he folded himself over crying more.  Eventually he settled down into a very overtired melancholy mood, not saying too much, but I know he was thinking about the experience.

For an hour after Santa and his caravan of flashing vehicles made their way out of sight Cameron was still going on, and on, and on, and on about the Nee-nahs.  He pulled out his favorite toy, the Fisher Price Little People fire truck, the fire man and a king from another Little People's set and reenacted what he saw and heard many times over.  

I'm already enjoying this holiday season through their eyes all over again.  When they are this little every year is a whole new experience.  I'm excited to see what they think of the Christmas tree when we finally put it up.  And hopefully they will have as pleasant an experience when they finally get to meet Santa up close again this year.  

How Things Are Said and Done

When something is upside down, be it a kid, a dog, or an inanimate object it is always referred to as "ups-sid down baby".

When someone falls, or pretends to fall, they ask me "Are you okay?" over and over and over and over until I repeat the question back. Often our toys have great crashes and the boys ask them this question until they are righted and doing whatever toys are made to do.

Telephone calls are always important and urgent.  "Hello? Yesth? Okay. Bye."  If it's Evan then the word hello is pronounced with a French accent, "Ahllo?" Sometimes it's Elmo or Poppop calling.  Occasionally Granny calls with urgent news, to which she gets hung up on promptly lest the phone self destruct in 5 seconds.

Both boys can say their full alphabet with occasional help.  Evan can count to 13 and Cameron to 11.  And they can count backwards from 5.  When counting down you must always say "Bwast Off!"

 Cameron:  "Oh boy! I can't wait."

Cameron:  "Oh, Cah-men drive de car? Nooooo?  Oh, okay, I'll try."

Cameron:  "Mommy, get de telephone? Oh-kaaaay, Cah-men get de telephone."  This is a diversionary tactic used during meals or nap time.

Cameron knows to say "Oh-kay, see you latter Cameron.  Bye-bye, hag (have) a nice day. See you soon, Cameron."  when he's leaving or the person visiting is leaving us.  And what he means is that you are to say these things to him, and he will repeat the words over and over until you say them.

Every morning Cameron wakes up and tells me something unintelligible that ALWAYS involves a helicopter.  I have no idea what he's telling me, but he always follows his discussion with "Mommy, you see a hec-a-topter?"

Evan:  "Ah yooh oh-kay?" is said whenever he perceives himself to be hurt, roughed up, or upset in any way.  Usually said at the same time as he folds himself over in half with forehead to feet or floor, face pouting.


Evan:  Tackling my legs from the side or behind, "Aw, I wuv yoo."

Evan now calls himself Ennan or Eh-than.  It seems both boys refer to themselves in the third person. 

This week the boys finally have accepted the fact that occasionally they have to hold hands, and that it can be fun.  It started with Evan trying to get Cameron to start a game of chase.  He grabs Cameron's hand and for a few seconds they walk side by side holding hands.  It makes my heart melt to see it, even if it's nano-brief.  And then the running and squealing begins.  Yesterday during a playdate with some other boys we played Ring Around The Rosie.  All the boys in the group are delayed in some way, the unanimous common delays of the group are language and sensory issues.  At this age kids will parallel play, which is playing side by side or near each other but not interacting directly with one another.  To break this barrier you have to get them to do physical things, so playing Ring Around the Rosie is perfect because they have to hold another person's hand, they have to understand that there are rules to the game (hold hands, spin as a group in a circle, let go at a designated point, fall down), and that it's fun and repetitive for ongoing play.  But to get sensory adverse kids to hold hands is difficult to put it mildly.  But for the first time, they finally got the concept that it's okay to hold hands.  This is a good sign that we are moving toward being stroller free.  If they can hold hands, then it's slightly less likely that I will have to run in two different directions at the same time.  Mommy is looking forward to that day.

The boys new favorite thing to do is play chase with each other.  No words are involved, though if there are any it's "I'm gonna git you."  Mostly it's Evan grabbing Cameron by the collar or hand and pulling him until Cameron knows that he's supposed to chase his brother, then the shrieks and peals of laughter follow.  And it usually ends up with someone walking into a wall or door or falling on the floor, and of course the tears.  After a minute of "Are yoo okay?" they are back at it going through the kitchen and around the living room and back through the kitchen over and over and over.

Video Messages from Santa

Image courtesy of tomhortonstalent.com

Video message directly from Santa to Cameron:
http://www.portablenorthpole.tv/watch/ylXX_-srymQKVSXJe7FXVg


Video message directly from Santa to Evan:
http://www.portablenorthpole.tv/watch/4XMkTkOu8ecmanzsb4_4ow

*Please note, Santa is VERY clear about his expectations for the boys this year.  Specifically Cameron is to be sure to eat all his veggies, and Evan should not be afraid to try new foods.  I know they can do it and that Santa and Daddy and I will be super proud of the boys as always. And to make sure that Evan and Cameron follow through with doing as Santa has asked, a special Elf representative by the name of Deeda will be present at all times to observe and give regular and factual progress reports to jolly old St. Nick.

Happy Belated Thanksgiving

We have so much to be thankful this year.  Most importantly that the boys are eating.  In whatever way they are comfortable, Cameron and Evan are eating.  Sometimes it's great, sometimes it's not so great, but they do eat.  And I could not be happier about this.

Today Is National Prematurity Awareness Day

This is me on March 15, 2008.  I was 26 weeks and 5 days pregnant with twins.  I was just barely in my third trimester.  I was not nearly as big as I should have been.  I was just told not one hour prior to this photo being taken that I would be admitted to the hospital for 24 hour monitoring for the duration of the pregnancy.  This is my only picture of me pregnant, I wish I had taken so many more.

Do I look scared to you?  No?  Not even a little?  Because I was terrified. 

And really the scared that I was was just the tip of the ice berg that had been building up and up and up and up from the moment we learned that we were having twins and that one of them was struggling with severe Intra Uterine Growth Restriction (IUGR) and might not make it.  And that his brother's condition was somewhat much better even though he too had significant IUGR but was absolutely certain to be high risk due to risks from prematurity.  That we had to chose to risk one to save the other or possibly risk losing both babies.  We counted the days, we were told to prepare as much as we could ahead of time.

I did the best I could to do as much as I could with preparing the nursery, trying to figure out the basic items we'd need for twins so that things were ready before I couldn't do them anymore.  How I loved being pregnant.  Even with the constant threat of losing one or both boys, the knowledge that we were likely to have preemies, I felt great.  It was just starting to feel real, just starting to feel huge and really full.  It was so wonderful.  The lava lamp bubbles I'd been feeling were now pretty solid actual kicks, but not strong enough that anyone touching my belly could feel.  I was not scared of having twins by this point.  I was terrified, and more terrified that they would not be healthy, not live.

Fifteen days later my amazing doctor asked me, "Are you ready to become a Mom? Because you need to deliver in the next forty-five minutes."  Become a mother of twins eleven weeks too soon.

And forty-five minutes later I delivered Cameron Andrew weighing 2lbs 15oz.  I got to hear him cry two teeny tiny little squeaks.  They had warned me I might not hear anything at all so we were instantly filled with pure joy.  My husband got to take this one picture and I could see Cameron, just barely, while laying on the operating table before they whisked him away.

And five minutes later, after much difficulty trying to reach and pull him out because of his size and positioning, Evan Alexander was born weighing 1lb 7oz.  I did not hear him cry.  I did not know if he was even alive for what seemed like several minutes.  He had gone into full reversal of blood flow in utero and his heart was in distress.  They rushed him past me for the quickest peek before rushing him to the NICU.  There was no chance to get a picture of him, I did not see much but a blur of a little bitty pink forehead and lots of tape and tubes and wires zoom past me.

I finally was able to see the boys after recovery four hours later.  I could not touch them for two more days. And when I could touch them I could only lay my finger tips on them gently because their skin was so thin it could bruise and tear.  I was finally able to hold Cameron two long days later and Evan three even longer days later though it was only for 15minutes. 

They lived in the level III NICU at Anne Arundel Medical Center Hospital for 67 and 68 days. Cameron came home on oxygen and a heart and lung monitor and weighed only 6lbs 4oz.  Evan came home with no tubes or wires but weighing only 3lbs 14oz.  Do you know how horrible it is to have someone ask if that's a real baby in the car seat?

It is because of advances in medical technology today that I have my boys. It is because there are talented strong souls who have chosen to dedicate their lives, their profession to saving the lives of infants and mothers.  It is because of our experience that I post today.  Before becoming pregnant I did not know, I could not appreciate what the word "Preemie" meant.  It was always just really tiny baby clothes.  Not a face or a name.  Just an extra small adorable baby. 

But real preemies are so much more.  They are fighters of the tiniest and strongest kind.  My preemies have faced several serious staff infections, dozens and dozens of IV's and blood tests, eye exams that are like something out of an alien abduction science fiction movie, being kept from being held by their mother because they were too tiny, too fragile to be touched and held.  They have been intubated and re-intubated, had their stomachs drained, fought off Necrotizing enterocolitis (NEC), fed TPN through an IV in their belly button instead of breastmilk by mouth. They've both stopped breathing and both have had their heart stop more than once because they were just too little to remember to breath and beat their little hearts with holes in them.   They both continue to fight a wicked battle for growth with feeding tubes causing sensory issues and oral aversions and a vicious case of reflux.  All of this due to their prematurity.  And this is a pretty "easy" story compared to many of their preemie peers who've experienced and survived much harder trials.

Today they look nothing like what you imagine a "Preemie" looks like.  They are catching up on all their developmental growth and abilities.  They are eating better and better every day.  And they are amazing fighters.  But it would not have been this way if we didn't have the wonderful medical technology and trained professionals to give these children a chance at the fight.

So when you see a local business asking for donations to the March of Dimes, please know that the face of what they do is not a cute little preemie sized onsie.  It's not a fat pudgy baby.  It's not the card cut out in the shape of a balloon with a space for the clerk to write your name in black marker.  It's not the itsy bitsy cute adorable micro preemie diapers that wouldn't fit a Cabbage Patch doll.

My hand, micro-preemie diaper, preemie diaper, size 3 diaper.

 It's the child and the families, the professionals and the specialized equipment who help them live and grow.

November 17, 2010 is the national Prematurity Awareness Day. March of Dimes at CMU is inviting you to wear purple on this day to support all of those who were born premature, and to fight for the prevention of prematurity.

Every year, more than half a million babies are born prematurely in the United States. The rate of premature birth has risen by 30 percent since 1981.

Premature birth is the leading cause of newborn death worldwide. Even babies born just a few weeks too soon can face serious health challenges and are at risk of lifelong disabilities. Premature birth costs society more than $26 billion a year.

We need to fight.  Because no baby should ever have to.  Please consider a charitable donation of your time, your money, your ear, your mind, or your voice.  Anything to help more babies around the world have the chances that my children were given would be appreciated.  Thank you.