Our little trooper

Andrew was amazing today.  From the second he arrived at Children's, he has very cautious.  He wouldn't play with the toys in the playroom.  He wouldn't wave or smile at anyone, which is very unlike him.  And he insisted on being held all morning.  But he let them do everything they needed.  He sat still for vitals, helped with taking off his clothes and changing into the gown and sat on the operating room table like a big boy to go to sleep.  He cried for only about 5 or 10 seconds before falling fast asleep. 

When we saw him in recovery, he was sleeping peacefully and it took him a little while to wake up.

Once he was awake, he was not very happy.  His tummy obviously hurt and he had a TON of gas.  He insisted on Mommy holding him but would thrash out of my arms trying to get comfortable.  Two fentanyl (pain medicine) doses later, he was a little better and agreed to drinking some juice.  Once we proved that he could come off the oxygen, tolerate some liquids and have decent pain control, we were able to leave.  It took about 3 hours.  We did meet with Dr. Dabari during this time and he told us that everything looked fine with the scope.  We won't have any real answers though until the biopsy results come back next week.

Nana and Paige were at home waiting for him and he perked right up when he got there.  Of course he had a recovery present and enjoyed tearing the paper off to see what was inside!

Within no time, he was outside, running up and down the sidewalk with his new bubble lawn mower!

Although Andrew's procedure was fairly easy and uneventful, Paige added some excitement to our day.  She came home from daycare early two days ago with a fever and had been rather irritable. She was pulling on her ears and complaining to us about them constantly and we were convinced that was the culprit.  Nana took her to ENT this morning while we were with Andrew for another ear check and they actually looked okay - definitely better than last week.  BUT they did notice that her tonsils had quite a bit of pus on them and much to all of our surprise, her strep culture was positive! Poor baby had a real fever by the time she was home and has been spiking to 103 all evening despite constant tylenol and motrin. We're just hoping she'll feel better tomorrow.

Even with her sore throat and fever, she couldn't be left out from the mowing fun!

Of course, we found out about Paige when Andrew was already under anesthesia, so this made us nervous about his recovery.  We called our pediatrician on our way home and they wanted to see him this afternoon for a rapid strep.  Luckily, his was negative because we didn't want to put him on an antibiotic course with his irritated gut.  We'll keep a close eye on him though.

I think the kid's favorite part of this experience and Andrew's 36 hours of clears was their first popsicle experience.

Of course he insisted on wearing his hat:)

Paige LOVED the idea of it and holding it herself but she is still undecided about the actual taste:)

Thanks for all the calls, emails and texts today!  It means a lot to know that so many of you were thinking about us!

Updates

Life is busy!  They are into EVERYTHING and moving EVERYWHERE.  We constantly have bumps and bruises from running too fast, banging into things, and of course, temper tantrums where we like to bang our heads on the floor.  Well, that's mostly Paige. And that's the fun new stage we're in! But most of the time, they are so fun and we are thoroughly enjoying this new, interactive age.  They are understanding more, saying more and doing more each day.  It's crazy how fast they change!

Paige in disguise at her cousin Nick's spy birthday party!

Our cutie - 18 months

Chit chatting on his "blackberry"

Our little flirt:)

All shopped out!

The best part about Costco - frozen yogurt!

Paige went back to ENT last Thursday for her tube follow-up appointment.  It wasn't exactly what we were hoping for though... She had fluid in both ears, although the right had more and was pretty badly infected.  So aggravating.  I thought we were getting tubes to avoid fluid and infection!  They told us that this isn't too uncommon and that now the tubes give us access to remove the fluid.  So we did.  And Paige was amazing. She sat perfectly still with tears welding in her eyes and let them suction out both ears.  Yet again, she made me so proud:)  We are now going to do another week of antibiotic drops and then we'll return for another ENT visit.  No point in checking her hearing since there was more fluid, so that will have to wait until the infection and fluid clears.

Andrew went back to the pediatrician for a final weight check Thursday, as well, before his procedure.  He had gained a couple ounces...but we still aren't quite where we were in October.  So, we go forward.  Endoscopy, colonoscopy and biopsy will happen this Thursday, May 10.  We were so hoping for enough weight gain and improvement that this wouldn't have to happen, but such is life.  The horrible part is that he has to begin a four day bowel cleanse tomorrow and then will only be able to have clear liquids for 36 HOURS before the procedure.  Wednesday is going to miserable for our poor, hungry, little guy.  Thank goodness Nana is here to help watch him this week.  We couldn't possibly send him to daycare with runny poops...not to mention that he would have to watch the other kids eat on Wednesday without being offered any!  We've got lots of popsicles, jello and pedialyte and are just hoping to keep him distracted with fun things!

Thanks, Nana, for coming to help!

I'll be sure to post an update after Thursday - we should get some preliminary results right away from the pictures, although biospy results will take at least a week to come back.  Wish us luck!

"Perfect Paige"

We all laugh about how we have our "wild ginger tank" - that would be Andrew:)  And then "perfect Paige."  Andrew is so fun, full of life and always on the go.  He is constantly running away from you and laughing and then comes back with his mouth wide open for a "kiss."  He does have a fiery side though with quite the Irish, red headed temper! Paige will wait her turn to do things, sit still when needed and entertains herself nicely.  She has always eaten well, always slept through the night, and is overall a really easy baby.  Hence, their nicknames:)

Paige lived up to her reputation on Friday and she was awesome for her ear tubes.  She was in a great mood despite being woken up at 5:15am to get ready and leave.  She flirted with people in the waiting room and made many friends.  She even convinced one of the receptionists to give her presents off her desk!  She got into a gown with no problem, took the oral meds like they were candy and laughed when Mommy put on the scrubs, surgical cap and mask to go into the OR with her.  As we entered the operating room, I told her that we were going "night night" and she waved to all the doctors and nurses and said "night night" to each of them.  She then willingly laid on the operating room table and let them put her mask on. She blinked a couple times and peacefully went to sleep.  They had warned me when going in (and I knew) that the kids usually fight and it isn't a "pretty sight" watching them go under.  Well, Paige proved them all wrong.  I was so impressed by her and so proud:)

She wasn't too happy waking up on the other end, but that was to be expected.  She screamed in the recovery room nonstop and refused to take anything.  But we weren't surprised - it was filled with bays of other screaming babies!  Luckily, our nurse didn't insist that she eat and let us go. She was fine the second her got in the car and fell fast asleep for the car ride home.  When we got home, she drained a bottle, ate breakfast and played like nothing had happened.

In her gown and ready to go!

Sleeping peacefully on the way home:)

Surgery presents are a must!

And the paper is still almost as much fun as what's inside:)

Thanks, Nana and Papa!

Feeding her new dolly in her new high chair!

And giving herself a bite, too:)

Pushing her dolly in the new tricycle and acting like nothing ever happened!

Of course Andrew couldn't be left out - his "Paige's surgery present":)

Hiding in the tunnel with his new Sesame Street singing microphone!

Thanks for all the calls, notes, and emails. It means a lot to know that so many people are thinking of us!

Good Luck to Paige!

Last Friday, we had our big developmental assessment at Georgetown.  It was close to 4 painful hours and it involved lots of cooperation from the kids.  They were actually awesome.  They showed off and surprised us all with how much they actually know and can do!  For fine and gross motor, they both scored somewhere between their adjusted age (16 months taking into account their prematurity) and their chronologic age (from their birthday).  Andrew lagged a bit more in fine motor and Paige in gross motor.  They both scored around 16 months for expressive language (talking) and closer to 18 months for receptive language (understanding us).  We pretty much knew this already - they both follow directions beautifully and truly understand pretty much everything we tell them.  They aren't saying very many words though - Paige is saying around 6 words consistently and Andrew is saying about 2.  The place where they surprised us was the cognitive category - they scored at 21 months!! They shocked us putting together puzzles with multiple shapes, placing things in orders, and following advanced directions.  I guess we need to challenge them more at home!  Monday is our Fairfax County follow-up assessment, so we'll use this information as a guide to help make decisions about ongoing support.

Tomorrow is Paige's ear tube procedure.  The process for preparing for this has been insane!  At first, I thought the process was really efficient - they sent me to an online registration site to fill out our demographics, insurance info and clinical history. BUT since then, I must have talked to 5 different people from that surgical center "verifying" the information I put in!  What a waste of time and staff!  We also had to go do a clearance visit with the pediatrician yesterday.  You'd think she was having open heart surgery with what we've had to go through!:)  Anyway, the procedure is at 7:40 tomorrow morning and we have to be there at 6:30.  This means we have to leave the house by 5:45 and Andrew can't be dropped at daycare until 7:00am.  The surgical center is super strict and doesn't allow siblings, yet wants both parents in the car for the drive home so someone can sit in the back with her to make sure she's not too sleepy and floppy and doesn't get sick. So this means that Jack's mom has to come over to our house at 5:30 so she can watch Andrew and then drop him a daycare!  Thanks so much to Grandma!  I'm sure it will be quick and easy but I'll post a quick update tomorrow!

A few fun pictures from Nana and Papa's visit last weekend and our time at the park:

Our pretty girl banging on the slide!

Andrew loving the swing!

Getting a push from Papa!

Andrew's first ride!

Their first ice cream cones! And Andrew's new "smile"

Paige's cone and her crazy hair!

And our cool dude rockin' to the beat on his Sesame Street radio!

Easter Weekend

We had a wonderful Easter weekend which started out with a trip to the Reston Petting Zoo!  Grandma, Uncle Josh, and cousin Katie came with us and the kids LOVED it!

Greeted in line by a ferret!

We fed baby lambs bottles!

And Andrew loved to give the goats first fulls of food:)

There were lots of hungry animals!

Our little lamb:)

There was an Easter Egg Hunt!

But Andrew preferred to take eggs out of his basket instead of putting them in...

Katie and Paige

The Easter bunny was very generous this year...and so were other relatives that sent us awesome Easter packages!

Easter baskets!

This was the first holiday that they really seemed to understand!

Paige clapped for all her presents:)

And Andrew screamed with excitement!

Cute pajamas

Bunny pancakes

The cutest little bunny boy

Look Mama!

Being shy in the big girl chair at dinner

Yummy cake!

Our little bunnies:)

Happy Easter!

(lots more pics in the Picasa album!)

Medical Updates

What a mess.  Literally! Paige started throwing up last Thursday night.  Everywhere. And continued until yesterday.  She would throw up at night, be cranky and sometimes sick again in the morning and would then improve in the afternoon, tolerate food and play.  We would think she was better and then she'd repeat this performance starting around midnight again.  It was very odd.  And it came at the worst time possible - Mommy's first trip away when Daddy was alone!  Poor Daddy.  But he did an awesome job managing these two alone for 2 1/2 days.

Since yesterday was day 5, I decided to take her to the pediatrician.  They were slightly alarmed at the duration of her vomiting and the fact that it was only occuring when she was laying down.  The pediatrician recommended a head CT scan and we decided that she had 48 hours to improve or that was the next step.  We were really hoping this wouldn't be necessary, especially since it requires sedation at her age.  Luckily, we finally had a vomit free night last night. And we've hopefully escaped that test.  She is definitely feeling a little better but is still not our normal, easy Paige.

Andrew finally got to see the gastroenterologist today.  Jack took the day off to bring him in and Nana (thank goodness for her!) came up to help and stay with Paige.  We talked to Dr. Darbari for a while and reviewed Andrew's test results.  His sweat test was negative, preliminary tests for Celiac Disease were negative and fecal fat repeat was more normal.  All good.  But leaving us again without answers.  We weighed him at their office and compared to the last time we was there in January.  He dropped again on their scale and confirmed his weight loss/lack of gain issue.  Dr. Darbari feels that its time to do an endoscopy/colonscopy to take some pictures and get some biopsies.  Their wait time for this to be done is likely 4-6 weeks.  So we wait.  Again. For the scheduler to call us and give us a procedure date.  It will require general anesthesia but will hopefully be a same day procedure. 

It seems like our lives are consumed by doctor appointments and medical issues lately.  Every Friday for the next six weeks, we have medical appointments - developmental assessments and county evaluations, ENT visits, pediatrician visits, Paige's ear tube surgery with pre and postop visits, Andrew's endoscopy/biopsies, gastroenterology followup, and weight checks.

We really thought we'd be done with all the medical issues by now.  It is a bit frustrating that our lives are still so wrapped around their health.  We are just hoping that all this attention now will find any problems so that we can address them early.  So until Andrew's procedure, we will focus on bulking him up by sneaking in lots of extra calories - butter, sugar, eggs and extra cheese added to everything.  High calorie milk shakes.  Fatty foods.  Dr. Darbari told us today "there is no such thing as bad fat with weight loss.  Give him Krispy Kreme!" Wouldn't we all love to have his problem?!?  Here's to our "Tank" gaining his fat belly back:)

Ring Around the Rosie

17 Months and we're finally starting to play together!  Their favorite dance is "Ring Around the Rosie" and we do it about a dozen times a day.  This may not be a favorite for very long though...we sing it in swim class and DUNK THEM at "we all fall down!"