Uninterrupted sleep

Uninterrupted sleep - what is that again?  Will we ever have a night of uninterrupted sleep ever again in our lives?  I don't think that once you become a parent that you ever sleep soundly ever again.  That's my conclusion. 

Although Claire has vastly improved on her nighttime sleeping habits, she still seems to wake herself up at least once a night (usually 2-3 times).  We don't have to go into her room and rock her back to sleep though.  She has gotten pretty good about soothing herself back to sleep.  So that is GREAT!  But everytime she wakes up, I wake up in anticipation of figuring out what is wrong and if she is going to be able to soothe herself back to sleep without our assistance. 

With these weird temperatures, it's stiffling some nights in her room and then freezing some nights.  So I think sometimes she wakes up either hot or cold.  I can usually sneak in her room and either turn the ceiling fan up or off and that seems to work. 

Or some nights, I Claire scoots herself all the way into the corner of her crib which means she scoots off of the sensor under her mattress that detects her breathing.  Yes, even at 20 months of age, we still use the Angel Care SIDS monitor (one of the BEST inventions E.V.E.R.).  I'm telling you, if we didn't have that SIDS monitor, I would just not sleep at all.  It's not just because Claire has health issues that I still use this monitor.  One reason we use it is because it was the closest thing to having the monitors on Claire like in the hospital so long.  I knew when she was in the hospital, she was hooked up to some sort of montior 24/7 so we always knew what was going on with her.  When we came home with nothing, the SIDS monitor was the closest thing.  It was great to have it. 

Secondly, I am just a freak about breathing.  If I ever babysat your child, rest assure that if they took a nap or went to sleep while I was babysitting, I sat over them and watched them to make sure they were breathing.  Seriously.  I guess it's just one of my fears.  So I would probably sit over Claire every night and make sure she was breathing if we didn't have the SIDS monitor.  I will probably use it until she goes off to college.  I just wish they made the sensor pad larger so it would cover more space under the mattress.  Hey - don't judge. 

So long story short, I have to go into her room and turn the monitor off when it starts beeping.  So that wakes us up.  Claire continues to sleep through that most of the time. 

And then I think as parents, you just don't ever really get into a deep sleep anymore as you are always trying to be aware of what is going on in your house and if everyone is ok.   And wake up constantly looking at the video monitor to make sure Claire is still in the crib, her foot is not stuck in the rungs, the blanket is not near her face, etc. 

So we probably never will know uninterruped sleep again, which is ok.  It's much better than having to wake up and stay up for an hour or 2 during the night.  Just know that when you see me and I look like I haven't had a good nights' sleep in a while, that is probably the case.  And you do not have to remind me that I look that way.  I already know. 

Love,
The Scott Family

Claire's new hang out spot

Claire has decided that she likes to just hang out in her car seat in my mom's car now.  She throws a fit to get in the car and then if you try to take her out, she throws another fit.  Not to go for a ride or anything.  She just wants to sit in the car.  So my mom is obliging (most of the time) and letting Claire just hang out in the car!  It's been cool the past few days so it's not been bad.  Just roll the windows down under the carport and read!

Love,
The Scott Family

New things around the house

Claire is literally growing up right before our eyes.  Sometimes I forget and still see her as a tiny infant.  And I sometimes seem to ignore the fact that as she gets bigger and older, she needs new things.  Don't get me wrong, Claire does not get a bunch of toys or lots of new things all of the time.  Just when she needs them.  We can't afford to buy something new every time we go to the store.  But it's kind of like she hit a growth spurt here recently and needed some "upgrades"! 

UPGRADE #1:  New seating arrangements

We noticed Claire was getting quite "stuffed" in her current high chair.  I don't know why, but the high chair we picked out is somewhat smaller than the one my mom has and the one Trent's mom has.  So Claire was fitting tightly in the high chair so we knew it was time to start looking for a booster seat.  I asked opinions on Facebook and got an overwhelming response on the Prince Lionheart booster seat.  So I ordered that one and installed it last week.  Claire seems to like it I think.  I just need to find a place mat that I can stick to the table some how so she doesn't fling the whole thing and her food off of the table.  One thing she doesn't like is that her view to the TV is now obstructed by me sitting beside her. 

UPGRADE #2:  New sprinkler arrangements

Then my mom found these cheap sprinklers at Big Lots and bought us one for our house.  Claire loves water and the sprinkler is so much fun.  I figured out she liked it when we had the hole in the water hose and she spent 30 minutes in that spraying water back on Memorial Day.  So we hooked our new sprinkler up Saturday and she played in it for a little while until she tripped and fell face first in the grass.  So much for that. 

UPGRADE #3:  New swimming arrangements

At my granddaddy's birthday party, Caba's mom, Brittany, told us about a "puddle jumper".  I had not heard of it and figured they probably didn't sell them around here (since they are from the Outer Banks, I figured they had specialty floats for kids there).  She explained they were 2 swimmies attached by a floatation thing that helped kids learn to swim and she suggested that since Claire loved water so much that she would probably benefit from having a puddle jumper float/swimmie thing.  Low and behold, as I was walking through the New Bern Walmart Friday, there were some puddle jumpers!  So I quickly grabbed one up with a ladybug theme for Claire.  There were not many left on the shelf.  I knew she wouldn't use her baby float from last year because it was to restrictive.  So I figured I would try this and see how she liked it.  (I was trying to take a picture of her and hold her all at the same time.  Kind of hard. And you can see the grass still on her face from the sprinkler incident).

Claire and I jumped in the pool.  I wasn't sure how long it would last because she had been somewhat fussy that afternoon.  But as soon as she hit the water, her attitude changed!  She was super excited!  I wish someone had been there to videotape her.  She was swimming like a little fish.  I supported her under her belly and she kicked her feet and paddled her arms just like she was swimming as we sang Elmo songs.  I tried to get out and take a break after 30 minutes, and she freaked out.  So we got back in and she swam another 30 minutes.  LOVED IT!  Below is my best attempt at a picture of us both in the water without dropping Claire or the camera.  hahahaha :)  Thank you Caba and Brittany for suggesting the puddle jumper!  It was a success!!!!  I highly recommend it.  Well worth the money even if she only used it for that one day. 

Hopefully since it is going to be 100 degrees this coming weekend, we can cool off again in our pool.  And I hope to have the video camera and my little camera ready if she has as good of a time again.  I think swimming lessons will be a breeze for this water baby. 

Love,

The Scott Family

Liver ultrasound results

Claire's liver ultrasound results were posted online today.  Although I haven't heard anything yet from the surgeon letting me know for sure that everything looks ok, from what I can read, it seems that Claire's liver looks normal with no cysts ("without definite focal hepatic lesions")!  Thank God!  Not sure about the normal size of a common bile duct or if Claire's is abnormal according to this.  Here are the official results below. 

Thank you for praying with us for good results (or at least I think I am reading that these are good results!)!

Love,
The Scott Family

US LIVER

Verified

Liver ultrasound dated June 19, 2012

Indication: 20-month-old female with history of mesenchymal hamartoma the

liver status post resection

Comparison: December 7, 2011 and CT scan dated April 13, 2011

Findings: Status post right hepatectomy without perihepatic fluid

collections seen. Remaining liver is normal in echotexture without

definite focal hepatic lesions. No intrahepatic or extrahepatic biliary

ductal dilatation. The common bile duct measures 1 mm in greatest

diameter. Gallbladder surgically absent.

Limited views of the right kidney reveal no pelvicaliectasis. The right

kidney measures 6.5 cm, within normal limits for age.

Impression:

Normal sonographic appearance of the remaining liver status post right

hepatectomy.

"O"

As you know, one of Claire's favorite TV shows to watch is Wheel of Fortune.  She has loved this show along with the nightly news since she was a small baby.  I think the colors on the wheel when it spins and the people clapping is what initially drew her to "The Wheel".  But now she interacts with the show in a new way.  Apparently, when the contestant calls out a letter, Claire thinks they should call out "O".  It is just so darn cute. 

And wouldn't you know it.  As soon as I cut the camera off, the next letter the lady called out was "O"!  She must have heard Claire yelling it at her!!  :)

Love,

The Scott Family

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

Father's Day 2012

Trent and Claire had fun on Father's Day as you can see from the picture below!  We enjoyed spoiling Daddy with home made deer sausage biscuits for breakfast and going to church together.  He also got to open his gift Claire made for him.  We went to Accidental Artist a few weekends ago and she helped make this grill platter for Trent.  Her foot print is the "steak" and her hand print is Trent's face and crown as he is "King of the Grill".  I have seen this platter in AA for a long time and have always wanted to make it. So it was a lot of fun!  My grill is slightly weird, but hey, it's the thought that counts.  We also enjoyed lunch at my parent's house and had spaghetti for my Dad since that is one of his favorite dishes. 

I am so glad that Trent is Claire's Da Da.  He loves her more than I think he ever thought he could love a child.  She brings a smile to his face every time he sees her.  He will actually let me take a picture of him when he is with Claire (which anyone who knows him knows he HATES pictures).  Claire is the apple of his eye and they have a special bond together.  And Claire loves him more than he will ever know as well.  The first thing out of her mouth almost every morning is "Da Da".  She just can't wait to see him every day! 

Being a Dad to a child who has been through so much like Claire has can really change your perception of life.  And I think she has done that to him. 

Love,

The Scott Family

PS - Pray that Claire has a great check up at Duke today!  She will be visiting SICC to check for development (based on her corrected age of about 18 months) and will also have a liver ultrasound to see how her liver is growing and if any new cysts have appeared. 

17 Years Together

Seventeen years ago today, Trent and I became a couple.  Before you think we are really old and stuff, we started dating when we were 14 and 15 years old.  I will let you guess who is the older one of us (but I am not older by much!).  I had always felt in my heart I would meet and know my soul mate immediately.  And that's kind of how it happened. 

I had actually "seen" Trent for the first time at a Babe Ruth baseball game and thought he was pretty cute.  But I realized that he already had a girlfriend so I kind of forgot about it.  But I did go home and write in my diary about him and how he just stood out to me.  We didn't meet or anything.  I just saw him out on the field. 

A few weeks later, I was spending the night with my best friend and she was going to the summer cotillion party.  So I went along with her.  I didn't really know anyone (you know, since I was a year or two older than most of the people there).  My friend wanted to dance with her boyfriend and I begged her not to leave me alone.  So she got her boyfriend's best friend to sit and talk to me.  And guess who that was - Trent.  We sat and talked and even danced a few times that night.  An instant connection. 

I can't remember if we talked after that or not much.  But a few weeks later, I attended the same best friend's 8th grade graduation (that really makes me feel old!) and since she and Trent were in the same class, I ran into him again.  We talked and he promised to call.  And he did. 

I went out of town for my cousins graduation soon after that and I remember when I got home that weekend, Trent called and asked me out (I don't know if they even call it that anymore??  I am really showing my age now....).  We started dating then and have been together ever since. 

If I think back over the past 17 years, it's hard to comprehend all of the things we have been able to experience together.  Good things and bad things.  We were together when I got my driver's license and we didn't have to rely on parents to drop us off anymore.  I picked him up after school pretty much his whole 9th grade year even though I went to school in another town.  We went to 4 proms together and have been through 4 graduations together.  Lots of ballgames, deer hunting, dance recitals, phone hours, etc.  Promise rings, engagement rings, and wedding rings together.  We have been through deaths together and now a birth together.  We have dealt with sadness and happiness, stress and excitement, good times and tough times.  We have built a house, a marriage, a business, and a family together.  We are parents together.  We make 99% of all decisions together.  We have just done so much TOGETHER in 17 years it's really hard to put it into words. 

The best thing we get to share together now is Claire.  What a blessing she is to us and obviously the best thing thing that has ever happened to us together. 

I have been so blessed to have Trent in my life.  I know he is my soul mate.  He puts up with me and has for 17 years (hey - he is about the only one who has never made a comment about my hair twirling habit....).  He does everything he can to make me happy and now Claire happy.  He is a great husband, best friend, and awesome father.  To say that I wouldn't know myself without him in my life would be an understatement.  He makes up half of my heart and Claire makes up the other half.  They are who I am. 

This picture is from 1995 right after we started dating.  Who knew that 17 years later, we would be where we are today.  Thank God for putting us together.  So we get to celebrate 2 anniversaries a  year - June 18th when we started dating and October 5th when we got married!  :)

Love,
The Scott Family

Fun in the sun/shade

Claire is enjoying her kiddie pool while we wait for our big pool to get warm enough.  She loves water and being outside.  So I lather on the 100 SPF sunscreen (especially on her scars) and we pack a duffle bag to head out in the back yard.  :)  It's our own private beach!  We can't wait for the big  pool to be swimmable.  Daddy has worked hard to get it ready. 

Love,

The Scott Family

Please also pray for Tricia today.  Her daughter was born at Duke a few years ago and is a Duke ICN Alumni.  You can read about Tricia at her husband's blog here:  http://cfhusband.blogspot.com/

Who's counting?

Claire's is!!!!

Claire has started counting.  She usually starts with three, then four, five, eight, and nine.  Today she added two, six, and seven in there.  It is so cute I smile everytime! 

As you hear in the video, she says three really loud (kind of like BEEEEE).  Then four is really sweet with a huge inflection (this number is the funniest).  Five is kind of just five.  Eight is usually as forceful as three.  And nine can either be just nine or can be ninenananana.  She says her numbers like this every single time.  I love it! 

She randomly breaks out counting kind of like she used to randomly break out in animal sounds.  She used to quack herself to sleep some nights.  Now she counts.  Maybe she is counting sheep.........

Love,

The Scott Family

Dr. Claire

One day last week when we got home, there was a package waiting.  I tried to remember if I had ordered something and just forgot about it.  But when I looked at the box, it was, of course, addressed to Claire. 

So after supper we sat down to open the package and much to our surprise was this awesome medical kit!  Right then I remembered when we last visted Dr. Rachel that she asked if Claire had a doctor's kit or not.  And when I read the note inside it said:

"For little Dr. Claire.  Hope this helps for our future checkups.  :) Love, Dr. Rachel"

Yay!  This means that eventually we will be seeing Dr. Rachel as Claire's doctor.  I told Trent that and he said I just had to tell Dr. Rachel that she was never allowed to leave Duke and that she always had to be Claire's doctor and not give her a choice.  So there.  ;)

Super excited!  I also wonder if her bear ("ba ba beaaaaaaar") will become her patient one day. 

Trying out all of my gear.  Taking my temperature.  Wearing my stethoscope. 

"Come here Momma and let me fix your boo boo with this bandaid!!!"

Well, at least she was super duper excited about the medical paraphanalia.  I hope we can play with it often before and after appointments to get her more comfortable with doctor appointments.  The child life specialist that we gave the books to last week also sent me some great information and suggestions on workin/playing with Claire to get her more comfortable with appointments too. 


Maybe she will be Dr. Claire one day.  Who knows?!?

Love,
The Scott Family

Cousins Caba and Claire

Claire and her cousin Caba had a great time playing together at their Great Granddaddy's 90th birthday party.  I could tell that these two could be partners in crime as they get older....

Their moms get along pretty great too, although I have no idea what kind of face I am making below.

Love,

The Scott Family

Party Pics

Here are some of the pictures from my Granddaddy's 90th party that I promised.....

Here is the birthday boy... 

Trent and Claire.... You can see the resemblance, right?

Robin, Ryland, Me, and Claire.... Two special, miracle heart babies... 

Caba helping Granddaddy blow out the candles....

Me, Claire, and Granddaddy....

Overview of all of the guests...

Trent, me, Claire, Granny and Granndaddy....

Amanda, Colby, Granny, Granddaddy, Uncle Jack...

James, Julie, Granny and Granddaddy...

Granny and Granddaddy with their 4 children - Larraine, Jerry (my Dad), Connie, and Georgia...

Granny and Granddaddy, my Dad, Uncle Jack (Granddaddy's brother)...