Tea Party

Claire has had a good weekend.  She got to spend it with Granny and Aunt Amanda while Mommy and Daddy were at a Young Farmer and Rancher Conference.  They could hardly wait to get home to see Claire!

The doctor switched Claire's formula on Friday to a more broken down formula, so we are hoping this will help her.  She is still smiling a lot and it's so sweet!  She has even begun to grow out of a FEW of her newborn outfits, but not many.  But it's progress!

Her incision is healing nicely from her liver surgery.  We also go back to the pediatrician this week for her 4 month check up and shots.

Granny Mary made Claire a beautiful tea set as you see below.  We cannot wait to use it! 

I also broke out my nice camera today.  Some of you know how much I love pictures and photography.  But through this whole thing, I have not hardly taken any pictures with my nice camera.  It's just too big to carry around at the hospital and when at home, I just forget.  So I saw some beautiful sleeping shots today and took a few of our princess!

We have heard that Eliza may go to "camp" this week.  Claire took her trip to the zoo, and Eliza decided she wants to go to camp.  So we are praying that camp opens this week just for Eliza!

Love,

The Scott Family

incision from liver surgery

Claire's tea set

Sleeping Beauty

perfection

Quick update

Sorry for no posting sooner!  It's busy in our household! 

Claire's appointments went well.  We go back in 2 weeks to see the cardiologist again and meet the cardiac surgeon.  The doctor said when Claire gets to be around 5 kilos, she will have her surgery.  This is about 11 lbs.  She was 8 lbs 14 oz on Wednesday.  So heart surgery could be sooner than we thought (maybe in next 4 weeks).

The liver surgeon called and the ultrasound looked good of Claire's liver.  You can't see the big cyst which is good.  This means it has not closed up and has not reaccumulated.  It is draining like it is supposed to.  They did still see that medium cyst that she wasn't sure if she cut or not.  So it's still there and the others on the left lobe are too.  But she said they are stable and we will go back in 6 weeks for another US unless things change.

We also stopped by ICN and got to see some of our favorite people including nurses, doctors, and friends.  All in all it was a good visit!

We are not getting much sleep.  The pediatrician is changing Claire's formula today so we will see!

Will update in more detail later if possible!!

Love,

The Scott Family

assembling the stoller - "snap!"

EEG

Echo of heart

SMILES

LOVE THIS FACE

Amanda and Colby with Claire

Fuzz, Sarah, and Claire

Adorable handmade outfit from Mrs. Eller

Smiles and prayers

Claire has started smiling - intentionally!  It's the best thing ever when we are talking to her and she busts out a huge laughing-type smile!  Just for us!  WE LOVE IT!!!!!  It makes all those sleepless nights seem like nothing. 

Also, Claire goes tomorrow to Duke for a cardiology check up and an ultrasound of her liver.  Please keep her in your prayers that all goes great tomorrow and that her heart and liver look good.  We may not know the results from the US tomorrow, but hopefully soon. 

Love,

The Scott Family

John Deere green.......or maybe pink

Most of you who know us know that we love John Deere things.  With Trent being a farmer, everything is John Deere from the tractors under the shelter to the decorations in our house.  Hey - even my garter at our wedding was specially made with John Deere material!! 

So why would you think that Claire would not join in on this John Deere love?  Of course, her Daddy is feeding it all to her.  On the day she came home from Duke, he had been out and bought her this little pink John Deere blanket with a tractor on it.  Claire also got a John Deere rattle from her cousins Connor and Anna.  She had already received a John Deere onesie before she was born from a friend at work.  Trent couldn't stand it so he went back to the John Deere dealership and bought Claire a corn shape teething ring even though she won't need that for a while. 

Then Trent went to a farm show last week and came home with a little pink fleece John Deere jacket, a pink John Deere onesie, and pink John Deere socks with sheep on them for Claire.  I mean, I never knew Trent would love anything other than John Deere green and yellow.  Now he's searching for John Deere pink too!  Claire loves all of her John Deere paraphernalia.  It's in her blood just like her Daddy.  Just one more thing in which Claire and Trent are identical. 

I haven't been able to take Claire out to get a picture of her on one of Trent's tractors.  It's just too cold for that little baby to be outside at all.  But hopefully this spring or summer we will get the chance! 

One more thing - most of you who know us too know that we have lots of deer heads on our living room walls.  We don't even notice them anymore, but when others come by, they are shocked.  The other night when we brought Claire home from Duke, the deer heads were the one thing she was focusing on.  Every single one of them.  It's now one of her favorite things to look at in the living room.  I am not sure which one is her favorite yet....  She is a true, blue Jones County girl for sure!

Love,

The Scott Family

note the matching John Deere coats on Trent and Claire....

my blanket, rattle, and teether

La Princessa and her Fairy God Mother

Once apon a time, there was this little girl named La Princessa.  She was born in a far away land called Duke.  It was a strange and scary time, but on day 2 of her life, this special woman appeared.  La Princessa decided this woman would be her Fairy God Mother.  The Fairy God Mother had special powers.  She could wave her magic wand and make good things happen like letting mommy and daddy hold La Princessa at the very beginning. 

As time went by, La Princessa grew to love her Fairy God Mother very much.  They would have fun together - especially on days when it snowed in Duke Land and mommy and daddy couldn't get there to see La Princessa.  They would play dress up and put bows in La Princessa's hair!  The Fairy God Mother would even take pictures of La Princessa and send them to her mommy and daddy so they could see how much fun they were having. 

The Fairy God Mother took care of La Princessa.  Even tried to get her to go to her homeland before the holidays or before 2011.  But La Princessa just wasn't ready to go yet.  She was enjoying playing at Duke Land so much with all of her fairy tale friends. 

But time passed by, and La Princessa was ready to make her trip to her homeland.  It had been 99 days and she had been told of this place where she would live the rest of her life.  Her Fairy God Mother often told her how no one lived at Duke Land - not even La Princessa. 

So La Princessa decided this homeland place sounded magical as well and fun!  She knew she would terribly miss her fairy tale friends that she had spent so much time with.  She had come to love all of them in their own special ways.  One fairy tale friend is still at Duke Land and La Princessa misses her much.  But La Princessa and her BFF shared so many special secrets, they are now sisters. 

La Princessa decided on a whim that it was time to go!  She made mommy and auntie pack up her things in a whirlwind and hit the road to this new and special place.  She had already made plans to make trips back to Duke Land to visit her friends.  But La Princessa was surprised when her Fairy God Mother took a trip to her homeland this week!  The Fairy God Mother brought along her sister and showered La Princessa with love and gifts.  La Princessa knew that all was now right with the world.....

A week ago....

A week ago today, we were totally surprised that Claire was being discharged from the hospital to come home.  It seems like it's been a month ago.  We are really enjoying having her home.  She has been spending time with her Granny Mary and Grandma Neat-Neat while they help us get a routine down pat.  We have been really enjoying the homecooked meals that friends have been sending our way.  It sure helps since Trent is getting geared up for a busy farming season and I am trying to get back in the work groove myself.  Not having to come home and stand over the stove to cook dinner gives us a little extra time to spend as a family together. 

We haven't been as diligent about taking pictures lately.  Sorry about that.  Our house has turned into a child's playroom with a pack-n-play, vibrating chair, baskets full of diapers, clothes, and blankets, boppy pillows, bassinets, etc.  You might not even be able to tell if the toys downstairs are Claire's or the dog's.  But we are having fun!  Fuzz still continues to love his new little sister and she loves him the same. 

Eliza's surgery is scheduled today for 2 pm, so we will be saying some prayers for her.  Also, Claire Elizabeth is working on getting her feeds down pat so she can go home.  So we will be saying some eating prayers for her! 

Love,

The Scott Family

PS - Grandma Neat-Neat caught Claire rolling onto her side this morning!  She is growing so fast!

Good news

We received a call from the surgeon last night that she had the pathology reports back on the tissue she sent off from Claire's liver cysts.  Fortunately, the results stated that the cysts that they sent samples from are the mesenchymal hamartomas and are benign.  Yay!  Of course, they didn't take tissue from ALL 5 or so cysts, so they can't promise anything about the others.  But it's a good sign. 

This hopefully means that Claire can continue to grow, have her heart surgery repair in a few months, then go back later to have the big liver surgery.  We hope to have an ultrasound of her abdomen done next week when we go back to Duke for a cardiology check up.  That way the surgeon can see what the cysts are doing and if anything is changing with them.  If they still look the same (which we pray they do - or either have disappeared!), we will just continue to watch.  If they have changed, I am not sure what the course of action will be. 

Also, Eliza's surgery is tomorrow to reverse her ostomy (I am not sure that is the correct medical term to use).  This will reattach her intestines together so that her food can stay in her body and be absorbed to help her grow.  For the majority of her life, she has had a bag attached to her tiny body that collects the food that would normally flow through the intestines and create her stool.  Her surgery is scheduled for late tomorrow afternoon, so please say some prayers for Eliza and her family!  Claire misses Eliza terribly - we hope to stop by next week while at Duke to see them, but unfortunately, Claire will not be allowed to go back to see Eliza.  Children under 3 cannot go back in the ICN/TCN. 

We are also hoping for a fun visit this Friday from one of our favorite nurses!  We hope it works out so she can check on Claire and make sure we are doing a good job! 

Love,

The Scott Family

Home Sweet Home

Wow - it's been a busy few days since we brought Clarie home.  As Amanda said in the previous post, we were not expecting on Thursday for them to discharge Claire.  Everyone had gone back home for a few days so thank God for Aunt Manda!  She came right on to the hospital and helped us get checked out and drove us all the way home.  We sure appreciated that! 

It's strange now not having to call the hospital to ask how Clarie is doing.  Or have my cell phone attached to me at all times in case Duke calls.  I know it's strange for Julie and James not to have someone living in their house.  We are so grateful to them for being so unselfish and allowing us to use their home as our own for 3 months.  It would haven't been the same.  It was so nice to know we had somewhere to go and if I wanted to talk about the day I could.  And if I didn't, then I didn't have to and they understood.  I know all of them will miss having such close access to Claire, but they will just have to come home more often now! :)

It seems like we had to somewhat start over with Claire's schedule.  The nurses had her on a good 3-4 hour feeding schedule which she is still on.  But the sleeping schedule is all different.  I am not sure if it's the change in environment, the fact that she must have a tummy type bug, or what.  But if you think about it, for all of Claire's life, she slept in a room with several other babies who cried.  In a room with doctors and nurses in and out at all times.  A room that was constantly lit up with lights.  A room that had monitors beeping constantly.  Now she's in a quiet room with darkness.  So we have had to play her CD player all night, sleep with the tv going all night, sleep with a night light on and also the bathroom light on.  Maybe she will get used to it soon!

We have had just a few family visitors since Claire's been home. The doctors advised us no visitors except close family.  It's just not worth the risk of Claire getting sick.  It's different for preemie babies.  And especially babies with medical conditions like Claire.  They can't afford to get sick.  We are not sure where she got the fever from yesterday, but at the doctor today, they said her blood work looked good.  So her body is just getting adjusted to being in the outside world! 

So many people have been so nice to fix us suppers a few nights.  It is wonderful while trying to adjust not having to worry about cooking supper.  You may be thinking "well the baby is almost 3 1/2 months old!  You should be adjusted by now!"  But life outside of Duke University Hospital is much different.  It's somewhat like we just came home with a brand new baby.  We handled her during the day at Duke, but never at night.  So that's a huge adjustment.  And getting used to not having 24 hour a day nursing and medical advice and watch is tough when we have been so used to it. 

So Claire had her first visit to her pediatrician today.  She had her appointment set up for tomorrow, but with the fever they wanted to see her today too.  So we have to also go back tomorrow!  I am beginning to wonder if the doctor's office is going to become the place Claire likes to go!  I doubt it though if they have to keep sticking her with needles! 

As you have noticed, we haven't been able to update the blog as much as we could since being home.  So forgive us and know that we will do it as often as possible! 

Oh, and I keep forgetting to give y'all links to Claire's friends websites.  They also have blogs and since many of y'all have also been praying for them, I thought you might like to read their blogs.

Eliza's blog is http://heatherandglenn.blogspot.com/

Claire Elizabeth's blog is http://prayersforclaire.blogspot.com/

Remi's website is http://www.caringbridge.org/visit/remisophiaklausner

I am not sure of any of her other friends' blogs or websites. 

Thanks again for the continued prayers!  Enjoy the pictures!

Love,

The Scott Family

PS - by the way, Claire weighed 7 lbs 15 oz today and was 19 3/4 inches long!  She started out at 3 lbs 2 oz and 16 3/4 inches long.

One amazing and memorable trip to the Zoo!!

After a pretty normal morning in the TCN waiting for the doctors to round, Rebecca was telling me that Claire may go home soon.  In both of our heads, I think we convinced ourselves that soon would be Friday.  Little did we know, the doctors had a different plan for us.  During rounds that morning, they told us she was being discharged and would be ready to go in about an hour.  Wow; we both jumped for joy and were so excited about this big day planned.  We had to load up the car, sign some papers, feed and bathe Claire, then we would be on our way out!  They joking said they wanted to get her our before she hit 100 days.  Claire has been at Duke for 99 days as of yesterday.  That is really hard to believe.  Rebecca then remembered…she didn’t have to car seat installed in the car.  Fortunately after driving all around Durham, we were able to find someone to install the car seat and give Rebecca a little lesson.  

Once we got back to the hospital, Claire had many of her favorite visitors come to see her.  One of her favorite nurses stopped by the hospital for a quick hug and kiss to wish Rebecca and Claire good luck!  Her other favorite nurse was Claire’s nurse this past week and fortunately this Thursday.  She was so helpful in helping us get everything together, give us plenty of advice, and helping Rebecca get ready to take Claire home.  Claire was also so fortunate to have her favorite doctor stop by for a quick visit on her lunch break.  She was so surprised Claire had done so well during her surgery and happy that she was able to go home.  Claire had to say goodbye to her favorite BFF which was a very sad moment.  They had been together since the beginning of Claire’s journey at the ICN.  Hopefully she will be able to head home soon too and get to have some play dates with Claire in the future!  It was very sad to say good bye to all our favorite staff at the hospital for they have done a great job in getting us to this moment!    

The trip home was actually a pretty easy and peaceful ride.  Claire did wonderful in her car seat.  We only had to stop twice to feed and change her which was pretty good.  She never once got fussy or cried.  (She knew she was heading home to see her loving family).  It really didn’t hit us that we were heading back home until we rode by the sign at Rhems UMC.  That was when we felt that we were home for good!  When we pulled up in the drive way, Trent and Grandma Neat Neat were anxiously waiting at the back door to come out and welcome Mommy and Claire home!  That was a very awesome moment to see Mommy and Daddy carrying baby Claire into her new home; a new chapter has now begun.  Claire obviously adjusted well in her new home.  She loved the smells, the sights, the people who surrounded her, being a family again, her personal "How Now Brown Cow" vibrating chair, and much more.  We can not thank God enough for the moment we all experienced yesterday evening.  

As of right now, Rebecca and Trent are taking it easy and learning how to be parents at home and getting adjusted to having their sweet bundle of joy at their fingertips!  Right now, visitors to their home are very limited.  Being right smack dab in the middle of flu season, Rebecca and Trent need to keep Claire healthy.  They are both accepting phone calls throughout the day if you would like to call and check on Claire.  Until things change, they are asking to please call before heading down to their house to make sure it is a good time.  If you feel sick, been around anyone that is sick or has been, or think you may be getting sick; please don’t jeopardize Claire’s health and wait a few months to come visit her.

If you would like to help out, Anita and Sarah are both putting together a Meal Calendar.  We are hoping to get many people signed up to cook dinners for Rebecca and Trent.  If you are interested, please call Anita(224-9121) or Sarah(670-7474) to see the available dates.  They appreciate everything that everyone is and has done over the past 3 ½ months and will continue to do in the future.  They are all so excited to be a family again at home!! Whoohoo that sounds good! 

Love,

Aunt Amanda 

One of Claire's favorite nurses! 

Claire's BFF Eliza talking back and forth

Claire's favorite Doctor

Last bottle at Duke before heading home

The Scott Family at Home with Claire

Aunt Amanda and Claire 

One of Claire's favorite nurses 

Claire has gone wireless!!! 

BFF's saying good bye!

First diaper change outside of Duke

In the car seat

enjoying her ride 

Scooter isn't so sure

Aunt Julie giving me lots of love

Her "How Now Brown Cow" 

Family enjoying Claire 

Family at Claire's side

Mommy, Daddy, and Claire 

packed and ready!