Saturday, December 31, 2011

Breaking the Cardinal Rule {and Duke eye appointment}

Well, I did it.  I waved the white flag of surrender on Tuesday.  I broke the Cardinal Rule of parenting a child with health issues. 

Let me back up to the beginning of the story. 

Tuesday, like all days that we travel to Duke, was rainy.  My mom was supposed to drive me and Claire like normal, but called and was not feeling well.  So I called the eye clinic to see when we could reschedule - 5 months out.  So I said never mind because my dad had volunteered to drive us.  Oh, I guess he just had no idea what he was in for with a Duke check up!  :)

So I should have known the way the day started out that it would be somewhat crazy.  The trip up and back was not bad at all except for the rain.  So that was good.  I had emailed Eliza's mom a few weeks ago to see what the eye appointments were all about.  I wanted to be prepared.  If it was going to be anything like the eye check ups in the ICN, I was going to need some strong anxiety medicine myself. 

Claire was cleared of any ROP (Retinopothy of Prematurity) before she left the ICN last year.  But they like to do a 1 year check up on preemies because they can have many eye issues.  Also they wanted to check her for the strabismus (lazy eye) that the neonatologists thought she might have from a visit a few months ago. 

Anyways, Eliza's mom warned me that the visits could be very long.  But that they did not use those metal eye clamps that they have to use in ICN.  Thank God for both me AND Claire!  So I was prepared with snacks, milk, juice, and books.  But I guess I was just unprepared for the wait with a 14 - almost 15 - month old. 

The appointment was at 2:45 pm and we didn't get out of there until around 5:00.  We saw several different doctors and were back and forth from the exam rooms to the waiting rooms about 4 times.  Claire freaked out as soon as we went into the first exam room.  She hated all of the toys they tried to distract her with.  She cried, flailed her arms, turned her head, and closed her eyes as they tried to hold things in front of her eyes to check them.  I honestly have no idea how they even were able to examine her eye balls instead of her eye lids or the back of her head.

Finally, I had to hold her in my lap, hold her arms down, and also hold her face still by holding her chin and cheeks.  And this girl HATES to be held down or confined any little bit.  Suffice to say it was a battle. 

As we waited for what seemed like FOR.EV.ER in the waiting rooms and exams rooms, I finally gave up to Claire's strong will.  She wanted to get down.  The books I brought were not entertaining enough.  So I gave in. 

I broke the Cardinal Rule.

I am confessing my sins:

- I let Claire crawl on the carpeted floor of the waiting and exam rooms.  All over the floor.
- I let her chew the rubber on the bottom of her shoes.  Even after she threw them on the floor repeatedly.
- I let her play with the waiting room toys without wiping or spraying them down.
- I let her play with the exam room toys without wiping or spraying them down. 
- I even let her put Mr. Potato Head's face in her mouth and chew it in the exam room toy box.
- I reused her bottle after she drank milk and filled it with juice for her to drink without washing or sterilizing.
- I used the fold out changing table in the bathroom (although Claire seems to have a very, very intense fear of these things and I am not sure why.  She shakes, screams, her face turns red, and her eyes get huge!)
- I gave Claire toys that had been thrown on the floor and not wiped off.
- I let her crawl on the couches in the waiting room and even put her mouth on the couch once. 

And while I am at it, I envy those mothers who do not care about any of those things listed above.  And I also envy those who can run marathons. 

There.  I said it.  I confessed my sins of breaking THE rule.  But I promise to do better next time.  Or at least try to.  The older Claire gets, the harder it is to keep her confined to her stroller or to my lap while waiting what seemed like days at the doctor's office.  I kind of justified it by saying "Well, at least these kids are here just for eye exams.  It's not like they have been sick and that's why they are at doctor."  Wishful thinking???

On the good side, I did meet another mother in the waiting room who was there with her FOUR children, with 3 of who were having eye exams.  We started talking and the 3 children were triplets who were born at 25 weeks at Duke.  They were 7 years old now and doing well.  She said they had been there before at the eye clinic and had to wait 5 hours.  So then I didn't feel so bad for myself.  Her girls stayed in Duke's ICN for 120 days and her son was there for 9 months.  It was nice to talk to another mother in the same sort of situation and it helped pass the time! 

And on an even better note, Claire's eye exams turned out great!  No need for glasses, no sign of ROP or any damage from prematurity or oxygen use, and no strabismus!  The doctor said she thought it was just the wide bridge of Claire's nose that made it look like lazy eye sometimes, which is kind of what we were thinking as I posted about "pseudostrabismus" a while back.  So Claire doesn't have to go back to the eye doctor until she is 3 years old, and then 5 years old.  And if everything looks good then, she will not have to go back.  The doctor did see a few astigmatisms in Claire's eyes, but said they were no big deal.  I have those too. 

So all in all, it was a good outcome so I cannot complain TOO much.  But they really do need to get that wait time under control for a pediatric eye center.  But when you want the best care, you will wait all day long. 

The Scott Family

PS - no pictures from the visit.  I was too busy chasing Claire around the floor!

Friday, December 30, 2011

Christmas 2011

We had a great Christmas this year!   We were so glad to all be home and have Claire home.  Santa came to visit our house since Claire had been such a good girl all year.  Her favorite toy was the Rocking Elmo that Santa brought her!  She also got a beanbag chair and grocery cart from Santa.  I started out the day good by taking lots of pictures, but by the end of the day, we were so tired, I forgot! 

Claire set out her cookies for Santa and her letter that she "wrote" to him on Christmas Eve.  We dressed her in her cute Christmas pajamas and off to sleep she went!  When she woke up Christmas morning, she was so excited to see what was under the tree.  I think Trent and I were almost more excited!  We opened presents at home then headed to Trent's grandparents to cook and eat the traditional breakfast and open presents.  Then we headed back home and opened presents with Grandma Neat Neat.  Claire got a red wagon so we went out for a short ride.  By then, it was time to head to Granny and Big Daddy's house to eat again and open presents with my side of the family.  It was a whirlwind over there but lots of fun!  This is where I failed to take any pictures.  I had hoped to get some good family pictures on Christmas day, but that didn't happen either.  We were all just exhausted! 

Below are some pictures from Christmas Eve and Christmas day!  Enjoy!

Christmas Eve - getting ready for Santa!

Santa's letter and cookies ready on the stove.  The towel hanging on the oven door has "Merry Christmas" on it with Claire's hand prints for 2011!

Letter to Santa, cookies for Santa that Claire made on the plate she made, with a "Milk for Santa" mug that was Trent's as a child. 

Letter to Santa

Santa came!

Claire's stocking with hair bows attached to Santa's hat

Santa ate the cookies and even left some crumbs!


opening presents

Photograph Courtesy of Trent

Getting some refreshments sitting on my new beanbag chair after opening presents

More Elmo?!?!

"I love my new wagon!"

Hanging with the big dogs at Granny and Big Daddy's

Reading the National Geographic maps with Daddy

Best Christmas Present EVER!

The Scott Family

Tuesday, December 27, 2011

Where does the time go?

I remember the night Trent and I rode out to Books A Million so I could buy the book "What to Expect When You're Expecting."  I was so excited!  No one knew we were pregnant yet, so I had to be very careful I didn't run into someone in the store.  The cashier asked who I was buying the book for and it felt weird to say "me"! 

I got about 2/3 of the way through that book before Claire was born.  I read it faithfully and almost daily to see what size Claire was, what she would be doing in my belly, etc.  I didn't make it past the 6th month chapter since she was born early.  And this is the book I so naively referred to while giving birth when I told the doctors that I didn't know how to push or what to do since I hadn't gotten that far yet in my book.  Yes, I think those were my exact words.  Geez. 

Then I got "The First Year" book.  It's been a good book to follow up with, but it's been hard for me to keep on track with it.  Basically because of having to read about Claire's REAL age and also her ADJUSTED age.  So I am on 2 chapters at once in this book all the time.  And I often refer back to the First Aid and CPR chapter to refresh my memory.  I think both this book and the previous book had good information in it about birth defects and prematurity and other things we have had to unexpectedly have to deal with.  I never knew I would need those chapters, but they have come in handy!

So the other night I went to pull out my "First Year" book to check up on Claire's progress and realized that I needed to upgrade to the "Toddler Years" book!  Seriously!  Toddler years????  This starts out at 13 months in this book.  I didn't get a chance to read any since Claire had other plans to play.  She doesn't like it when I try to read and not pay her attention.  ;)  So I will try to see if Claire is on track according to the book sometime soon! 

All of these books have been really great!  Don't get me wrong - I know you cannot compare every child to what a book says.  Trust me, I know first hand.  But it does help to know kind of what she should be doing or working on doing.  It gives me a guide of some sorts.  Claire is definitely not a "by-the-book" child!  But I do recommend these books for new parents.  They have been very helpful and interesting!  I just can't believe we are on the toddler book now!!!!

The Scott Family

PS - A Christmas post will come soon!

Saturday, December 24, 2011

Take me for a ride on your big green tractor

Trent asked Claire and I to ride with him while he was mowing cotton stalks the other day.  Claire was asleep when we got there and slept for over half of the ride!  The tractor noises and bumping and turning never even bothered her.  She's such a natural.  (Ignore my quadruple chin in the picture).

When Claire finally woke up, she was all smiles!  She kept clapping, smiling, and talking the whole time.  She would reach over and tap Trent on the shoulder to get him to look at her. 

We rode with him until it was time to head home to fix supper.  She (and I) absolutely loved our time together.  Riding together in the tractor is something Trent and I used to do when we first started dating almost 16 years ago.  It was very special to me for our little family of three to now share in the experience.  There is nothing more fun and relaxing then riding in a big tractor in the middle of no where in the quiet together. 

By the end of the ride, Claire wanted to either drive with the steering wheel or get down and crawl on the floor of the tractor so we had to go.  I told Trent that I could already tell Claire would be spending lots of days riding with him in the future! 

The Scott Family

Friday, December 23, 2011

The only present we need under the tree

This is the only present we need under our tree this year!

Also, here is the finished version of Claire's plate we made at Accidental Artist last weekend.

The Scott Family

Thursday, December 22, 2011

Happy 1 Year Corrected Age Birthday!

Today is Claire's 1 year adjusted/corrected age birthday!  Meaning if she had been born on her due date, she would be 1 year old today!  This is the age the doctors go by when checking her development until she is 2 years old. 

On her 1 year adjusted age birthday, Claire is doing lots of things.  She is still cruising a lot but not yet walking on her own.  She can tell you what a dog says, a cow says, and what a duck says and she recognizes them in pictures.  Claire is eating probably about 80-90% "real" foods instead of baby foods and just supplementing with baby food when nothing else satisfies her.  She is still drinking from a bottle and not interested at all in a sippy cup.  Claire loves books and would rather read/play with a book than any other toys (besides Elmo).  Claire can say "Elmo" and recognizes him on tv.  When Wheel of Fortune comes on she loves it!  And when the audience claps, she claps along with them.  Claire still loves bath time and is still very happy in the mornings when she wakes up.  But she is still not on an all night sleeping schedule as she still wakes up usually at least once a night.  She is not a fan of shoes like her momma and would rather not wear any.  Her hair gets curlier every day and she seems to grow an inch every time I turn around.  Claire loves all kinds of animals and being outside.  She babbles a lot and acts like she is reading books to herself.  Claire loves to ride on the tractor with her daddy.  I could go on and on.........

December 22, 2010 was my due date last year.  It's weird to think that there was that much time that passed from Claire's birthday to the time she was due.  Last year it was just a blur.  But this year, to think about the time span from when we celebrated her first birthday to now is a long time. 

Eleven weeks early.  Seventy eight days early.  Almost three months early.  And to look at her now, you would never even know the fight this little girl has had to go through.  It amazes me that at such a point of weakness, Claire was as strong or stronger than anyone I know.  So new to the world; unprepared.  Yet, in the midst of it all, she prevailed.  God prevailed in her.  So even if she didn't have those 11 more weeks, or 78 more days, or almost 3 more months to grow and prepare her little body for life outside the womb, we are pretty proud of how quickly she adapted and took hold of her life and made the best of it. 

And while I think back, I realize, that "due dates" are guesstimates.  They are the days that the doctors think the baby should be due.  But in our case, I know that God knew Claire had to be born when she was to survive.  The cyst in her liver would have crushed all of her vital organs, including her heart, if she had not been born when she was.  October 6, 2010 WAS her due date.  God's due date for our baby.  Claire had to be born early to survive I believe.  I have read so many articles about the liver cysts where babies don't make it because the cyst crushes everything.  Thank God my body knew Claire had to get out to take care of her body. 

So I believe it was a blessing in disguise. Plus we got 11 more weeks, 78 more days, and almost 3 months more to spend with our sweet baby than we would have if she was born on her due date!  :)

The Scott Family

Wednesday, December 21, 2011

Home movies

Here are 2 videos of Claire saying Elmo and also making her favorite animal sounds.  Enjoy!

The Scott Family

Tuesday, December 20, 2011

Camera Hog

Remember when Claire had the "camera stare"?  When every time I got out the camera to take a picture of her doing something cute, she would have this blank stare on her face?  Well, now she is a camera hog!  Every time she notices I have the camera out to take a picture or video, she crawls really fast over to me and has to stick her face right up in the camera and try to grab it from me! 

She was reading her favorite book, "Where is Baby's Pumpkin?" last night and it was so cute.  So I got the camera out and here's what happened!

The Scott Family

Monday, December 19, 2011

First pony ride

Saturday, we braved the cold weather to head to Jack's 2nd birthday party.  He had a farm animal themed party, hence a petting zoo and pony rides.  As Claire and I walked towards the animals, she started mooing at them!  There weren't any cows out there, but she had the right idea!  I took her over to sit on one of the ponys and the guy said he could walk us around.  I was hesitant at first, but she seemed ok just sitting on the pony.  So off we went!  And she loved it!  She was a natural on the miniature pony!  It was so much fun!  Claire also had fun playing with a few friends that she had not met yet - Mallory and Mason.  We didn't get to stay for the cake and ice cream because it was nap time and also time to visit Aunt Amanda.  But we had a great time!

The Scott Family

Friday, December 16, 2011

Friendly neighbors

Well, we don't technically have "neighbors" at our house, but my parents do.  And their neighbors are really, really thoughtful.  When I stopped to pick Claire up yesterday, my mom told me to look out the back windows of their house into their back yard.  My parents have a big back yard so I had no idea what to look for.  But way in the back where the yard meets the neighbors yard, was a blow up Santa.  Not just any blow up Santa!  He was on an airplane with a moving propeller!  He also had a landing strip out in front of him with flashing red and green lights. 

What was so different about this Santa is that he was in the neighbors back yard where no one could see him.  You can't ride by their house and see their hard work of putting the decorations out and lining up the lights for Santa's landing strip.  No - this neighbor did all of this work and put this Santa out there JUST FOR CLAIRE!!!!!  How nice is that?!?!  He wanted it to face my parent's house so Claire could look out and see him.  It is so thoughtful, I just don't know how to say thank you. 

We walked over to see Santa and Claire wasn't sure what to think of him, but I think she liked it.  She would have liked it better if I would have let her down on the ground to play with everything!

The kind things people do for you will always stick in your heart. 

The Scott Family

Thursday, December 15, 2011

Christmas miracles

The liver surgeon called today to let us know what she read on the ultrasound from last week.  Her exact words were (I wrote them down) "The ultrasound looks great!  There is no evidence of any cysts of lesions on Claire's liver.  It looks the same as the last ultrasound.  We will just continue to do ultrasounds every 6 months for a while then if everything looks normal, go to once a year.  Her liver growth looks good/appropriate and she has plenty of liver tissue."

It's still hard to believe.  My mind makes me want to think, "wellll, she moved and screamed the whole time so maybe you just didn't see the cyst very well."  Note: on her echo report, she was noted as being "an uncooperative patient."  But at the same time, I really want to believe in this miracle. 

Thank you for all of the prayers for our sweet child. 

The Scott Family

A picture is worth a thousand words

This picture may not look like much, but to our family, it means so much.  This Christmas, we have all 3 stockings hung by our chimney with care.  Last year, there were no stockings hung at home.  Claire's stocking (the one in the middle) was hung on her crib in Duke's ICN last year.  So for us, this picture marks a special time in our lives.  Something more than words can describe. 

The Scott Family

Tuesday, December 13, 2011

Stepping out of the roles society has planned

This was the passage that was read this past Sunday at our church for the lighting of the 3rd Advent candle:

"And Mary said, 'My soul magnifies the Lord, and my spirit rejoices in God my Savior, for he has looked with favor on the lowliness of his servant.  Surely, from now on all generations will call me blessed; for the Mighty One has done great things for me, and holy is his name.'" (Luke 1:46-49).

Today we remember Mary, innocent and powerful, sacred and scared, worried and waiting as the Savior of all grows in her womb.  She sings boldly when she might be meek; she bears her role in history with the confidence of a warrior; she is the beginning of a mighty revolution as the proud are brought down and the lowly lifted up. 

Today we give thanks for the Marys among us, who step out of the roles society has planned; unintended pioneers determined to do as God asks; fearless and fearfully stepping out in faith, and beckoning us to do the same.

On this third Sunday of Advent, we light this candle as a symbol of Mary, mother of God, bearer of the Way.

As we read along with this passage in church, it really hit me.  Mary was so much like I was when pregnant with Claire.  Don't get me wrong - I am NOT saying I am anything comparable to Mary, Jesus' mother!  But Mary was given a task and a path by God that she had not planned.  She was scared and meek, yet she "stepped out" of the role society had planned for her and graciously accepted the plan God had for her.  She stepped out in her faith and trusted God.  Imagine the fear Mary felt when God chose her, a young teenager, to take on the task of being Jesus' mother.  Back then there was no Internet or blogs where you could easily Google what was going on with you or your child to read about it or find support from other mothers who have travelled this journey.  Imagine that feeling of being alone.  I can't imagine. 

I believe that as mothers, we all may feel that way somewhat.  But as a mother of a premature child that was born with heart defects and liver disease, it hits home a little more.  I am not the first mother to be scared.  To worry about God's plan for my family and our unborn child. I am not the first mother who probably always thought she would have healthy children with no worries to find out just the opposite.  I am not the first mother to "sing boldly when I might be meek" or to "bear my role with the confidence of a warrior" when dealing with the extreme fears we dealt with for Claire. 

I am an "unintended pioneer determined to do as God asks."  UNINTENDED.  Well, maybe unintended on my behalf but I believe God intends for certain things to happen to certain people.  I have "fearfully stepped out in faith" and have beckoned others to do the same.  I have asked, begged, and pleaded for prayers for Claire.  I have heard stories from so many people of how her life has strengthened their faith in God as they watched miracles unfold.   I believe all of you other preemie moms, heart moms, liver moms, congenital diaphragmatic hernia moms, intrauterine growth restriction moms, etc. know how Mary felt.  And we should learn from her and how she fearlessly and fearfully trusted in her God, stepping out in her faith, knowing He had a bigger plan for her life than she could have ever dreamed. 

So Mary was the first of us moms that was dealt a hand with her child that could not be explained.  She may have been the first, but definitely not the last.  There are many moms who have been given a different path than expected and there are many more to come.  But if we know and trust God and his plan for us and our children, we should all be ok. 

Although Mary was innocent, scared, worried, waiting, meek, and fearful, she was also powerful, sacred, bold, fearless, and a warrior.  She stepped out of her comfort zone and the role that society had planned for her to embrace a much bigger role.  One that God had created just for her.  So on the days that I sit and wonder "why us?" or "why Claire?" I can now relate to Mary and know that God's plan is much better than any plan we ever thought of.  I feel fortunate that God has created a special path for our family - one that I never even dreamed of - that includes such a special sweet baby girl.  I wouldn't trade it for the world. 

The Scott Family

PS - Just so you know (in case something doesn't make sense), I do not proofread my posts.  And usually, I just type as the words come into my head.  So if something doesn't make complete sense, I apologize.  Sometimes my emotions get the best of my ideas, or my mind works a lot faster than my fingers can type. :)

Monday, December 12, 2011

It's beginning to look a lot like Christmas!

Well, it's getting there.  We had a busy, fun weekend with Christmas festivities and getting our Christmas tree.  This is a long post with LOTS of pictures, so I am warning you in advance!  ;)

First, here are a few pictures Beth took of us at Breakfast with Santa a few weekends ago.  Wow, we have a lot of kids! 

Here is Claire in her Duke ICN shirt.  We cooked a bunch of cookies and dropped off last week for the Duke ICN families.  We hope they enjoyed them!

Friday night, we attended the very first every Christmas on Main Street in Pollocksville.  It was an awesome event for the community of Pollocksville!  There was everything from old home tours to fire on the water to face painting to food to Santa.  Trent is chief of Pollocksville Volunteer Fire Department and they served BBQ at the community building with a small bluegrass band playing.  It was a lot of fun! 

We decided it was warm enough to stroll down the street to see Santa at the local arcade.  We ran into Izzie there!

As you can see below, Claire wasn't scared of Santa.  She just kind of stared at him and checked him out.  So that's good! 

We really had fun and I think everyone else did too.  I hope this is something they continue each year and that it grows! 

Saturday, we ran down to Accidental Artist to make a cookie plate for Santa. 

I will post a picture of the finished product when we get it back this week!

Here is Claire showing off in her own little Santa hat that Granny bought her.

Sunday after church and lunch, we decided it was time to try to find our Christmas tree.  We all loaded up in Trent's truck (Claire for the first time).  It was a task to get that car seat to fit in the extended cab of his truck!  But we all made it!  She liked riding in there because she could see out better than she can in my car.  As soon as we headed out of the driveway, Alan Jackson's song, "Let it be Christmas" came on the radio.  So fitting!

 We drove across town to Moore Christmas Tree Farm where we have been cutting our Christmas trees for the past several years.  They give you a pole to take out with you so you know the height of the tree.  Claire though it was funny!

We got to ride on a trailer hooked to a tractor to go get our tree from the field.  This was the highlight of Claire's day!  She LOVES to ride on tractors!  I declared we would be having a hay ride at Claire's next birthday party!  :)

Here is our tree!  It's a Carolina Sapphire and it was about 8 feet tall.  Here we are while the owner cuts the tree down for us. 

Back on the trailer ride again!  Yay!

Grandma Neat Neat found her a tree too!

Claire told this blow up Santa what she wanted for Christmas too as she rubbed his beard.  We walked around, played, and took pictures while they got the trees ready to load onto our truck. 

The nice people over at Moore Christmas Tree Farm also gave Claire some Magic Reindeer Feed to sprinkle on the lawn to lure Santa's reindeer to our house. 

We got the tree up but not decorated yet.  Well I did put the ornaments Claire made this year on the tree and our little white dog ornament we got at Breakfast with Santa. 

Here are a few pictures from Granny's camera from the past few weeks in getting ready for Christmas. 

Claire is singing into the "Merry-Okie" microphone.  It's a microphone that plays Christmas music, but also when you talk or sing into it, it changes your voice to sound like an elf! 

Claire and Granny painted us some really cute Christmas ornaments a few weeks ago.  These are the ones already hanging on our tree!  Claire did a great job paining them!  They are so special. 

And here she is modeling a Santa hat a Granny and Big Daddy's.  She is getting in the Christmas spirit! 

So as you can see, we are trying to get ready for Santa and for Christmas!  This Christmas will be so much different than last year.  We are so happy to just be at home with our family this year.  We didn't even have a tree last year since Claire was not home.  So we made up for it this year with a Chevy Chase Christmas tree that is HUGE!  Now I just have to decorate it......

The Scott Family

PS - Another Christmas miracle - baby Parker is home with his family!!!  Thank you for praying for them!