Monday, November 29, 2010

Video Messages from Santa

Image courtesy of

Video message directly from Santa to Cameron:

Video message directly from Santa to Evan:

*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.

Wednesday, November 17, 2010

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.

Tuesday, November 16, 2010

That's The Very Last Time

That post yesterday will be the very last time I ever mention that either Cameron or Evan have not puked in however many days it might be.  Tonight just before bed while still messing around in the playroom Cameron started coughing and it continued into a vomit.  All he had in his stomach was a little bit of undigested noodles and carrots and juice but it was still a puke and we're not exactly sure what caused it.  He's had a runny nose today, some sneezing and coughing but nothing significant.  No fever either, so I can only assume reflux or a random gag triggered by something that went volcanic.  Either way, I'm not going to post when the boys have stopped puking ever again.  Because every time I do, within 24 hours they puke.  I've had enough puke, I'm so done with it.  We are the masters at puking, there are very few people who've ever dealt with more puke than us and they all read this blog.  For the record, you can just go ahead and assume that if we've removed the boys feeding tubes from their bellies that they don't reflux vomit any more.  And we'll never count pukes again.  M'kay?

Monday, November 15, 2010

Insatiably Sweet

Wonders never cease.  Last week was our first week hiatus from taking the Periactin.  We are supposed to do the Periactin four weeks and then take one week off so that their bodies don't build up too much of a tolerance to the medication.  It was a true test to see if the medicine is really getting them over an eating hurdle.  And I can officially say that for Cameron it has.  It's a miracle drug and works exactly like it's supposed to do, though I know for many kids it does nothing for them.

As you might have read in my earlier post, during last week there was a significant drop in the amount of volume of puree foods and liquids Cameron was willing to tolerate, but his interest in eating real food actually increased.  At Wegman's grocery store I got an egg and cheese and artichoke frittata (more of like an omelet than a frittata) and he ate 1/2 of that artichoke and all.  He also saw a banana on the kitchen counter and asked for it.  I gave him about a 2" whole, unmashed section of the banana and he ate it happily.  Pretty much he's just been munching non-stop for a whole week.

And this weekend, oh this weekend....  The boy is a bottomless pit!  Saturday we re-started our regiment of Periactin, but this time I only gave 2mls after breakfast around 9am.  Within an hour he was demanding food.  "Cameron, you hungry! Mommy, you hungry!  Cameron eat breakfast? Cameron eat snack?"  It's so beautiful to hear, even if it's repeated over and over and over and over in a increasingly faster and higher pitch.  He now easily consumes one full cup of diced peaches in syrup, his new favorite snack, which he calls "Sweet" not peaches.  He also eats about 1 cup of Veggie Sticks a day or more, up to 4 grapes cut in quarters at a sitting, a full serving of freeze dried apple chunks.  And every meal he not only eats 1/4 of some kind of grilled cheese sandwich or 1 to 2 full Sweedish meatballs, he also eats a full 6oz of a stage 3 puree plus up to 4oz of whole milk.  On Sunday I almost thought I was asleep and dreaming because in under 45minutes he consumed one FULL banana and demanded more.  (I drew the line at one full banana. Don't want to freak his system out more than it already has been.)  Then tonight he ate about 1 1/2 of meatballs, 1/2 serving of steamed green beans for which he demanded sight unseen until I put them on his plate, plus 5oz of milk and 5oz of a stage 3 puree.

I can not believe this kid is eating like a typical child.  I am flabbergasted at the suddenness of the change in his eating.  It is just plain WEIRD to be sitting at a meal with my husband feeding Evan and I don't have to do anything because Cameron is now self feeding everything but the purees.  I blinked and POOF! He's eating!  How did this happen??

For Evan, I think that if he were past the hurdle of touching food to his teeth, maybe if he were already nibbling foods on occasion, a good bit more interested in the food on MY plate, then I feel this medicine would definitely have him eating bigger bites and more quantity.  But as it is, he's hungrier and more willing to eat what I make him take on the spoon, so he's eating 4oz of stage 2 foods pretty well and consistently.  But he can not tolerate solids in his mouth beyond rolling one goldfish cracker around on his tongue until it's soggy and all the salt is gone.  He will take a piece of steak or a meatball speared on the end of a fork and suck on it but he will not eat it or nibble.  We play games to get him to touch food to his teeth, he enjoys the games and will play along but barely.  He definitely knows that it makes us happy to have food touch his teeth because he tells us he's doing it, he shows us and looks at us seeking approval and encouragement, which we try to give in spades.  He even tells us frequently, "Enan is eating."  I just wish I could figure out a way to make him comfortable to bite into foods just the teeniest tiniest bit, a tweezer sized pinch like Cameron started out doing.  Then I would know that he's on his way and we are not at a permanent stale mate.  I  have not given up, but it would be nice to see some improvement sooner rather than who knows when.

At least now I can put food in front of one kid and spoon feed another at the same time.  If you have never tried to feed two resistant toddlers at the same time, even two healthy no problem eaters that need to be fed by you at the same time then let me assure you, it is STRESSFUL.  We've been fighting this battle to get them to an acceptable weight and growth pattern, a healthy sleep pattern not interrupted by spontaneous vomit, a moderately normal approach to eating their entire lives.  I don't even know what it's like to have a normal life with toddlers, without always having to worry about this weight gain or that amount of vomit every two to four hours twenty-four hours a day.  To think that all of the sudden I have to actually come up with meal plans for Cameron so I always have foods for him to consume is just awesome and strange at the same time.  I carry food on my person at all times for that instant that someone has an inkling that they want some food to munch on.  I'm excited for the day that all of this clicks for Evan and he finds the pleasure and joy that Cameron has now found in food.  All I need to do now for Cameron is teach him to take medicines by mouth, which will be tricky but definitely doable.

We have our follow up with the GI doctor in 4 weeks to review weight gain and decide if it is time to wean the boys off of all formula as well as reflux medication.  I am hoping that Evan has a breakthrough coming and that we'll see great weight gain and that she'll cut his formula through the pump down to 150mls at night.  But he's still puking maybe once a week at night, so I am unsure that he will be ready for that step as it really depends on his being reflux free.

I am however certain that at his rate, I can probably take Cameron off his 1 hour a night 150mls bolus feeding before we ever go to that appointment.  And I'm certain that, because Cameron has not vomited at all in TWO MONTHS, I can begin to ween him off of his reflux medication, Prevacid, starting then too.  Then once he's off the Prevacid we will ween him off of the Periactin hunger medication and he will be a completely typical 2 year old toddler.  And then with enormous luck maybe we'll survive the winter without any illnesses that require we use the feeding tube for any reason, in which case we will remove his G tube completely.  Just in time for his birthday.

Edit: Just after I finished typing this I heard Cameron's pump beeping that it was done for the night.  When I went to go unplug him from the pump I discovered the poor thing snoring in a big puddle of his cold wet formula.  The medicine port had popped open somehow, yet again, after we'd plugged him in and double checked that the medicine port was closed.  So he didn't get all of his 150mls of formula tonight, I have no idea exactly how much he got.  But he was a good sport about our having to strip him and his bed down and remake it all over and put new jammies.  I will be so happy to see these feeding pumps go.

 Here are some pictures from our week... 

 Chillin with cousin Lucy.
 And cousin Timmy.
 And cousin Dillan.

 You know that old saying?  Some things....
 .... Never change.  (Above: cousin Timmy, Evan in pillows, and Uncle Chris. Below: Uncle Mike at the same age as Evan and Drew, aka Daddy.  Same house, same location in living room, slightly newer sofa.)
 Because we are superheros, we are practicing to fly like them too.

 Come on Mom! You can't catch us!

 A demonstration on teamwork.

The boys love to tell me that we are Shape Searchers.  They tell me when they see shapes.  Evan pointed out the octagon (or as he calls it "ohk-a-gone") and the rectangle ("rek-angle") on our walk back from the playground.

 This is as close as Evan will get to biting any solid food.
 And this is probably one of my favorite pictures of Evan.
 Cameron, do you like grilled cheese sandwiches?  Yes Mommy!
 Chewie, sneaking in to the playroom for his afternoon siesta, which happens to be at the same time as the boys' nap.
 Cameron is in the background shoving fists full of noodles in his mouth, while Evan is figuring out how to stab his meatball.
 Uh, you really want me to eat this banana?  (24hours later he ate a whole banana)

 Feeding a toddler should always be this simple.  Cameron's first full cup of diced peaches.
 Evan, who was not interested in the peaches decided to visit Chewie.
 This is Evan watching Cameron eat his peaches.
 And this is Cameron, finishing his peaches.
 The boys love to stop and smell the flowers, literally.  Sometimes we accidentally come away with a petal stuck to our lip or maybe leave behind a crushed bloom or two or four.  But we do love flowers.

 See the tongue sticking out on Evan.  This is his new thing.  The therapists told me months ago, back when Cameron was doing this too, that this is a good sign of a food tolerance development coming.  Evan has his tongue out all the time, especially when he's focusing really diligently on something.  I love it.
 By the way, this toy is a toddler magic wand.  It lights up and spins and vibrates and plays music all at the touch of one button. 

 It is also the perfect $9 toddler weapon.  We convinced the boys to put them back.
 Yay for a great visit with cousins Phillipe and Sasha!

 These are the faces of "get me out of this thing NOW".

 I love Homestead Gardens so much.
 Evan has keen eyes and often randomly shouts "A clue! A clue!"  Then runs to peer closely at what he thinks is the next clue to Blue's mystery.