Not what I expected

Claire went to Duke yesterday for a follow up visit with SICC (Special Infant Care Clinic) and for a liver ultrasound.  The day did not go any way as I expected it to go at all. 

Her first appointment at SICC was at 11 am - right at her nap time.  When I scheduled this appointment 6 months ago, her nap times were 9 am and like 2 pm.  So it would have been perfect timing between naps.  But now she is on a different schedule.  So I was worried that she would not "perform" well at her developmental testing visit.  But for some reason, Claire fell asleep on the car ride up to Durham and got a short nap between 9-9:30 am.  It was just enough to keep her energized. 

We didn't have to stop on the ride up and made it all the way to Duke peacefully.  Once we made it to the 3rd floor to check in Claire was running wild everywhere.  Getting that energy out from the 3 hour car ride.  It makes it so much easier that she can walk now so when we get to the hospital, she can run free and it makes her feel better.  I chased her all over the place as I was trying to fill out the questionnaire. 

She kept running up to the check in desk and showing off her Duke ICN Alumni tshirt and Duke socks from Aunt Amanda.  She was sporting her Duke gear yesterday!  Just need a Duke hair bow next! 

Claire weighed 27.8 lbs at this visit and was about 32" long.  We spent an hour with the pshychologist (I think that's what she is) doing the standardized developmental testing again like last time.  Claire did great. It's hard for 20 month old (but really an 18 month old) to sit in a small room for an hour doing developmental testing.  And it's hard for a momma not to be in "teaching mode" as I am not supposed to say anything or do anything to help her figure out the puzzles, etc. 

After the doctor tallied up her scores, she said Claire was overall average for an 18 month old (remember they base everything off of her corrected age as if she would have been born on her due date).  Language is her strength this time and she called Claire a "social butterfly."  Her social skills are "off the charts!"  She said Claire was more interested in being social than figuring out how things work or how things fit together.  Which is amazing as I was so worried for so long on Claire's social skills since she had to be sheltered so much early on in her life.  So she has put language first and put cognitive skill learning on the back burner for now.  The doctor said babies do that - work on one thing at a time to master that before they go back to working on other things.  My main concern was that they were going to shun the fact that she still drinks mostly from a bottle.  But no one seemed to even act like they noticed that yesterday. 

The psychologist said that we needed to work on puzzles, shape sorters, pegs, and pretend play with Claire.  I am not really worried about all of that.  I think she will figure those things out when she is ready.  It's hard with standardized testing because really not all kids are a like.  I understand why they have to use it, but sometimes I think it can be a little overboard. 

The psychologist also predicted that Claire will be a shampoo model one day since her hair is so beautiful.  I think everyone we saw yesterday commented on how they LOVED Claire's curls. 

We are also supposed to work on letting Claire do most of the work when climbing stairs instead of helping her so much.  That will help build her muscles and her confidence in climbing. 

The neonatologist that we got to see yesterday was Dr. Seigel.  Dr. Seigel has literally been with us since the beginning.  He was the one who came to my L&D room while I was out of it on mag sulfate to explain to us how the NICU worked, how Claire's delivery would work, and everything about having a preemie baby.  He was so nice then and is still so nice.  He was also Claire's neonatologist fellow for most of her stay at Duke ICN.  So when we found out we were getting to see him yesterday, we were happy!  And we were even more happy when he came in and gave Claire her "SICC graduation" gift!  YES - Claire has graduated from SICC and will not have to ever go back to those appointments!!!!  So Dr. Seigel was with us from the beginning and then got to see Claire graduate.  Kind of neat! 

It's somewhat bittersweet.  But it means she is growing and developing just like she should.  And she hardly cried when he used his stethoscope to listen to her.  Shocker.  Read more on that below. 

Claire's ultrasound wasn't scheduled until 3 pm so we ran to the bagel place at the hospital, grabbed some lunch, and headed back to CHC to ask/beg to fit us in earlier so we could hit the road.  While we waited, Claire and I checked out the huge fish tank and she also played with some toys. 

Fortunately, they were able to fit is in earlier!  So we headed to the US room. It's dark in there and as soon as we got in there, Claire started whining.  I was nervous about her freaking out again like she did last time.  Claire's cardiologist had suggested when she came back for her echo next year to bring her favorite DVD and sometimes that helps distract them. So I thought we would try it out this time with the ultrasound. 

We brought her favorite Elmo DVD, popped it into their tv, and she was happy.  Seriously, she laid back on me, watched Elmo and didn't even hardly make a peep.  TOTAL opposite of last time.  The tech got good pictures and we were done in no time.  I am not sure if she saw anything or not, but I anxiously await a call from the surgeon letting us know the findings.  I noticed the tech focused a lot on her common bile duct but not sure if that means anything or not.  We will also see the pediatric hepatologist in 2 weeks for the first time to see what she says about it. 

So we headed to the car and rode the whole way home without a fuss.  Seriously, this day could not have gone any better (for a day at Duke).  We are so proud of Claire.  She is growing up and understanding more and more that not all doctor visits are bad.  It was such a relief. 

Claire got a book that they were giving away in CHC yesterday (see below).  Also, she got the cute bug chunky puzzle as her graduation gift from SICC. 

I am not sure if it was the Duke ICN Alumni tshirt or the lucky Duke socks from Aunt Amanda that helped us through the day.  But this may be our new attire to all doctor appointments.........

And I am also not sure that Claire's new doctor kit isn't already helping. She has carried her stethoscope around for several days and we have been pretending and listening to her heart.  So when Dr. Seigel used his stethoscope on Claire yesterday, she didn't freak out as bad.  And she actually held it and "helped" him listen.  So we will continue to play with the kit especially around doctor visit times!!!! 

Thank you for all of the prayers for a good visit yesterday.  Please continue to pray that the ultrasound looks perfect!!!

Love,

The Scott Family