Memorial Day Weekend Staycation

We stayed home this Memorial Day weekend and it was nice!  First of all, it was nice to have a day off of work that we weren't travelling to Duke.  Trent had to work most of the weekend, but it was just nice being around.  Claire and I spent most of the weekend around the house playing and trying to occupy her time.  She is in between being an infant and being able to crawl and move on her own.  She tries hard to get down when you are holding her like she wants to run!  But she just can't figure out crawling just yet.  We are continuing to work on tummy time.  We have had to start and stop tummy time so many times due to her surgeries, so she's not very fond of it.  But we will keep trying!

The other day Claire was really watching us when we drank out of a cup and starting reaching for it.  Trent gave her one and she would put it to her mouth like she was trying to mimic us.  So I decided to give her a sippy cup so she could start practicing drinking out of it and holding it.  Claire did really good with it! 

We have added the rice cereal back to her formula at night and that has helped a lot with Claire sleeping better during the night.  Now it's usually just getting up once at night.  Last night she slept from 8 pm to 5:45 am!!!  YAY!!!!!! 

For our Memorial Day weekend, Claire visited with Granny, Big Daddy, and Aunt Julie, and Grandma Neat Neat.  We helped Trent clean out the pool and hopefully it will be ready to swim in soon!  I bought Claire a float this weekend and my mom bought her a new bathing suit and hat!  I also made sure to pick up some 100 SPF baby sun screen for Claire since we have to be so careful not to let her scars get sun.  We rode up to the shop and visited Trent while he was working on the tractor.  Claire has now graduated to the umbrella stroller (the travel system stroller is for babies she says).  So it's much easier to take her out and stroll her around and she LOVES it.  We tried sitting in the exersaucer again, but the seat is just so big, she is not comfortable for long even with blankets stuffed around her.  She did find the little roller thing on it and continued to roll it around for a while and listen to the noise.  I also dressed her in red, white, and blue yesterday!!  It was too cute!

I actually cooked supper last night for the first time in a loooooong time!  I had to prepare everything during Claire's naps and then put it all on the stove and in the oven at her bath time.  It worked out ok.  I put Claire's high chair together this weekend thinking she would like to sit with us at the table and allow Trent and I to actually eat a meal together.  But that didn't work.  Claire is ok if she can see you and you are looking at her, but if you walk away or walk out of the room, she gets upset.  We are going to have to work on the separation anxiety.  :)  But she gets it honest because I hate to be alone too!

Anyways, here are some pictures from the weekend! 

Love,
The Scott Family

Look alike?

Since before Claire was even born, I thought she looked just like Trent.  In the 4D ultrasound, I could just tell.  It was like a Trent mini-me. After Claire was born, it confirmed to me that she was a Trent mini-me.  She looked just like him!  Or so I thought anyway.  I only had maybe 1-2 people ever tell me that she looked like me and I think they were just saying that to be nice.  I had always said if our children looked as cute as Trent did as a child then I would be perfectly satisfied!  So I am!

But lately, I have had more and more people telling me that Claire looks like me and looks exactly like I did at this age.  I honestly did not even think so at all!  Until my mom pulled out my baby book this weekend.  I found several pictures that it was almost scary how similar we look.  But at the same time, I still see a lot of Trent in Claire.  So it's weird. 

Anyways, for fun, I scanned in some pictures of me so you can see what you think!  I didn't have any baby pictures of Trent that I could scan in last night.  If I get some I will post them too. 

This is me with my Granny Rose and Big Daddy (hence Claire's middle name and also the name Claire will call my dad).  This is Thanksgiving 1979 so I was 4 months old. 

This is me and my dad and I think their dog named Diamond.  The back of the picture says I am 12 weeks. 

I am 10 weeks here.  This is my "camera stare" like Claire!

11 weeks old

14 weeks old

5 months old with Granny Rose

8 months old

6 months old

Love,

The Scott Family

Happy Birthday Grandma Neat-Neat!

Today is Grandma Neat-Neat's birthday!  We celebrated yesterday with a cookout and cake and ice cream.  Claire did pretty good at the party.  She was a little clingy, but did let Mimi hold her some.  We are now starting to work on getting Claire out in groups of people so she can get used to others. 

Happy Birthday Grandma Neat-Neat! 

We had a busy weekend!  Saturday Claire and I went to visit Great Granny Maxine and Great Granddaddy.  We were also able to visit with Claire's cousin Caba for the first time and her parents.  It was a great visit!  Caba decided that Claire was "tiny"!  She is right!  Saturday night, Trent and I were able to have a date night and go out to eat.  It was very much appreciated just for me not having to scarf down my meal in a hurry. 

My cousin Sam, his daughter Caba, me, and Claire

Sunday was the birthday party for Grandma Neat Neat and then we played in the bumbo chair with Fuzz. 



Claire and Fuzz played ball like this for a while on Saturday!  She is really paying him a lot of attention now.  She even scratched his head, pulled his ear, and pulled his collar this weekend.  When Fuzz runs in the room, she whips her head around and follows him! 


And this is how I found Claire asleep.  She has been crossing her legs/feet like this since we have been home from her liver surgery.  It must be comfortable!  It sure is cute!

Also, her steri-strips all came off of her incision.  It looks like it's healing well!  Here is a picture of both of her incisions.  I hope they fade away quickly! 

So all in all, we had a really good weekend!  Now that the weather is nice, we are going to start attempting to get Claire out more.  A little at a time.  It's scary for us since we have had to be so careful about having Claire around anyone.  We will still be very careful with her and making sure not to take her around anyone sick for a while.  I know she has to build up her immune system soon though!  But it's only been 2 weeks since a major surgery. 

By the way, people have been telling me lately that Claire looks just like me when I was a baby.  I didn't really believe it until my mom showed me my baby book this morning!  Wow!  I will try to scan some comparison pictures in soon!

Love,

The Scott Family

March of Dimes t-shirts

We have 2 left over t-shirts from the March of Dimes walk this year.  They are white t-shirts and on the front it says "Team Claire Rose, May 7, 2011" with a heart.  On the back is the March of Dimes logo with Claire's foot prints across the back.  We have a large and an extra large.  If you want one, please email me at rebeccascott333@yahoo.com with which one you want and how to get it to you.  I will send them to the first ones who ask for them!  I hate for them to go to waste!

Love,
The Scott Family


***update***  The t-shirts have all found homes!  Thanks!!

Steel Magnolia

Steel Magnolia (from Urban Dictionary):  A southern woman who is strong and independent yet very feminine.


Recently while Claire was at Duke recovering from her liver surgery, I went to my sister's apartment for a few hours just to get out of the hospital and take a break/nap.  I sat outside on her patio and noticed a beautiful magnolia tree at the corner of her patio.  I starting thinking about how I loved magnolia trees (my mom used to say it's because I didn't have to rake up all of their leaves!).  And then I started thinking of how Claire is the exact definition of a Steel Magnolia.  This child is beautiful in every way, yet she is the most strong and determined person I know.  I hope she continues to stay that way for the next 100 years! 

To start out like this:

And to already be like this:

I think she's definitely a steel magnolia! 

On another note, she can be quite the little ham!  Hence the following photo.  It makes me laugh every time I look at it!  :)

The next photos are a before and after surgery of Claire's belly.  It was hard to try to get the same position, but you can tell her stomach looks much slimmer.  The pictures do not do it justice.  She has a normal baby belly now!!!

before

after



Have a great Friday!

Love,
The Scott Family

Taking things for granted

My mind has been spinning the past few days with so much going on.  Emotions are everywhere.  Of course you read about Christian and losing his battle on Monday.  Then we received news yesterday that Korah, the little 13 month old that was waiting for a heart transplant (and that we blogged about here), had lost her battle on Tuesday. We were shocked as when we left Korah about a week and a half ago, she looked great.  She was on the floor playing and having nurses read books to her and nodding her head at everyone.  I am not exactly sure what happened but it is just extremely sad.  I honestly can't even figure out how her parents are dealing with it.  Please keep the Darak family in your thoughts and prayers. 

Claire had a cardiology check up yesterday and the doctor said everything looked pretty good.  Of course, she still has some narrowing of her artery below the valve and her valve leaks.  These are things that can stay this way for a long time or could change and have to have something done.  Usually the valve thing is what has to be repaired in her late teens or early twenties.  This is what is causing the murmur that Claire still has.  The cardiologist did say that Claire's heart surgeon did an excellent job for Claire's case.  Perfect repair for her - not too aggressive, but not to passive.  He doesn't want to see her back for another 3 months!  That's progress! 

We happened to run into Claire's liver surgeon on the way out.  Claire gave her lots of smiles!  We don't see her again until 3 months too, so that is good. 

So as we are so happy that Claire is starting to get good reports at her doctor visits, we are just devastated at the losses that these other heart families have experienced this week.  It has really made me take a step back and realize that I am SO happy that I have a baby that keeps me up all hours of the night.  I don't care if I ever sleep again, as long as I have Claire.  If the laundry piles up on the couch and the recliner (as it is now!) then it will just have to wait.  I am rocking our baby a few minutes longer each night.  If the dishes pile up in the sink, they will just have to sit there.  I am reading a book to Claire.  If I don't make it to every event that we are invited too, people will just have to understand.  I am too busy singing (way out of tune) "Jesus Loves Me" to Claire. 

Sometimes we are all guilty of taking things for granted.  I am totally guilty of it.  I know since we found out about all of Claire's conditions while pregnant that I had always taken for granted that we would have healthy children.  Why wouldn't we?  But when you stop and think about it, it's amazing that there are as many healthy children out there as there is the way every little organ and body part has to form.  And then when I start feeling sorry for myself or Claire for having to go through what she has been through, I stop and think about Christian and Korah and realize that Claire has it really good!   We shouldn't complain at all. 

I have learned to treat Claire as the ultimate gift from God.  And one day when I meet my maker, He will want to know what I did with that gift.  I want to be able to show him that this gift meant more to me than anything else in the entire world because it came from Him.  I mean - how else would you treat something that God gave specifically to you?  I would think with the most extreme care and love possible.  God chose Trent and I to be Claire's parents and it's such an honor.  I didn't realize He had that much faith in me!  She is truly a miracle and a blessing to so many.  So are everyone else's children.  God thinks long and hard before giving gifts just like we do for Christmas or a birthday party.  And think about how you feel when you give someone the perfect gift - one you specifically chose just for them. 

So take time to stop and smell the roses.  Be appreciative of your life and your gifts.  Don't take things for granted - even the small things.  You can't turn back time and sometimes time is the best gift you can give to your children.  You never know when you won't be able to just pick them up and squeeze them and tell them how much you love them. 

So by special request, here are a few pictures of our gift that I took yesterday.  Note I lugged out the nice camera to take good quality pictures of Claire today.  I am not taking for granted that I can do it some other day when I already have the camera out for something else.  I am doing it now. 

Love,

The Scott Family

Prayers needed

Prayers are needed today for 2 of Claire's friends: 

Super Dude is having his surgery today to repair his abdominal wall.  He was born with CDH - congenital diaphragmatic hernia and is now about 2 1/2 years old. Pray for a great surgery, comfort for him and his family, and a speedy recovery!  We should have planned Claire and his surgery together so we would have someone there to talk to!    ***update***  Super Dude's surgery was cancelled this morning!

Also, please say prayers for a little boy named Christian.  He passed away this today and was only a few months old.  Although we never got the chance to meet him, his mom and I had planned on getting Christian and Claire together soon.  They go to my parents church and my mom told me about him a few months ago because he also was born with a congenital heart defect.  Not the same as Claire's but similar.  Christian's mom and I have been talking back and forth and supporting each other as heart momma's do.  They were coming to see Claire at Duke last week since he was supposed to be in Raleigh for an appointment, but he came down with pneumonia and they canceled his appointment.  So we were never able to meet this sweet angel.  It just totally breaks my heart for this family. 

Claire has been running a low grade fever this weekend.  Not sure if it's due to the surgery, maybe starting to teeth, or what.  So please pray it goes away quickly! 

Thanks in advance!!
Love,
The Scott Family

A little weary

Claire had quite a busy night last night.  She was up almost every 2 hours.  I am not thinking that she is hurting each time.  But maybe just having anxiety thinking she is alone.  It's hard to tell if she's in pain from the surgery, if she is hungry, if she has gas (she's had a lot since the surgery), or if she's scared.  Either way, she is very clingy and wants to be held all the time. 

So Trent and I were up most of the night last night.  My plan was to nap today when Claire napped but that hasn't happened either.  And you know that when 2 people in 2 days have told you that you look bad, then you must be looking pretty bad!  I am thinking that I need to find the time somewhere to go get that pedicure that I got a gift certificate for last July before it expires.  I should also go get that facial that I got a gift certificate for almost 2 years ago.  That might help!  Even just a night out to eat with Trent would be nice, but we haven't done that in a while.  As you can see, I don't get much time to go and get these kind of things done since I am still holding on to the gift certificates.  The hard thing is that not just anyone can keep Claire.  She is high maintenance, especially just after having surgery.  And I always hate to ask the same people over and over to watch her.  So the gift certificates may have to wait some more and people may just have to deal with my overly tired, worn down, stressed out appearance.  I will go ahead and apologize to you for it!  ;)  But the good thing about it is that we are enjoying every second with our little miracle.  We are making the best of each situation and just being together is what matters the most.  I wouldn't change it for the world. 

Please say a few prayers for Claire's friend Super Dude who will be having his abdominal wall repair surgery on Monday.  Claire knows exactly how he is going to feel! 

Also, today was the much anticipated NICU reunion at Duke.  We were so looking forward to going and finally getting all of the girls together out of the NICU.  But it would have just been way too much on Claire to drive up and back today.  We are already going to have to do that this coming week for her cardiology check up.  So we are sorry we missed seeing our friends and nurses today!  Hopefully everyone had a good time and took some pictures for us so we can see how everyone has grown!

Love,
The Scott Family

March of Dimes - March for Babies May 7, 2011

Team Claire Rose walked on May 7, 2011 at the March of Dimes March for Babies in Morehead City.  Unfortunately due to Claire's surgery, half of the team was unable to go and walk.  But the other half made up for it! 

Our team goal was $500 but we ended up raising $1,090!!!!  That is awesome!!!  We also had the t-shirt contest.  We only had 2 entries so we used both to create the shirts.  On the front is a heart put together with puzzle pieces since Claire's heart had been put back together.  It also had a yellow ribbon on it to symbolize liver disease awareness.  On the back was the March of Dimes logo with Claire's actual foot prints "walking" across the back.  These were her foot prints done just minutes after her birth. 

We are so thankful to everyone who joined the team, raised money, donated money, raised awareness, and walked.  We feel so loved by all of you.  Claire is determined to be at the walk next year! 

Below are some pictures that team members took of the day.  Looks like the weather was perfect!  Claire's BFF Izzie was even there along with Claire's cousins Connor and Anna and another team member's son, Jake (who was also a preemie).  So Team Claire Rose consisted of adults and kids!  How fun was that?!? 

Thank you for all that you did!!!!  We love you!!!!!

Now for a Claire update - Claire is doing well today.  She slept ok last night but still seems sore and not feeling well.  I hope she gets some more rest today at Granny's.  We are glad to be home!

Love,
The Scott Family

Home Sweet Home Again

We are home!  Claire did great on the ride home and we only had to stop once.  She is resting now in her swing and seems happy to finally be out of the hospital.  Thank you again for all of your continued prayers!  She is still sore but is closer to getting back to her old self - all except for the grunting part.  We don't miss that!

Love,
The Scott Family

Long night, good day

Last night was a very, very long night.  It was just me and Claire in her hospital room after 9:30 pm.  She went to sleep in the bouncy chair and I thought we were in for some good sleep.  But at 11 pm on the dot, she woke up crying and upset.  So I changed her diaper, asked the nurse for some pain medicine, and tried to feed her.  In the middle of feeding Claire, they had to get her weight.  So she was even more upset with me after that.  I kept trying to feed her knowing that the way we would get home quicker is for her to be eating well.  I went to burp her and as I did, she vomited all that she had eaten (and felt like more) all over me. 

This made her even more upset and sore.  The nurse decided to give her some Zofran for the nausea.  I knew it was my fault for moving her all around to quickly after eating.  But I feared they would take it as a set back.  Instead they just increased her IV fluids and told me to just feed her what she wanted when she wanted instead of trying to get her to eat her normal amount.  This seemed to work the rest of the night as she didn't vomit anymore. 

But the AC in our room didn't work yesterday and all last night.  It would be like 80 degrees if we shut our door.  Maintenance came to try to fix it, but couldn't.  So we were sweating in our room.  We had to leave the door open to be able to get some cool air.  This wouldn't have been so bad but our room is directly across from the ice machine (you'd be surprised how many people need ice all during the night!), the hall bathroom, the linen closet for the floor, and the pyxis system (the medical cabinet with all of the medical supplies).  So whenever one of these things were in use, we were awake.  So total we probably slept a total of 3-4 hours.  Not enough. 

So as the morning went on, Claire ate more and they have said they were going to take her off the IV fluids but they have not done it yet.  They have also discontinued her oxycodone and decreased her Tylenol.  The hope is that we can go home tomorrow.  We are working on trying to convince them to take the drainage tube out tonight.  It's just draining out all around the site and onto Claire's diaper and our clothes.  It's red and sore.  It doesn't seem to be even draining into the actual tubing.  But on the floor, things don't get done like they do in the ICU.  So we are STILL waiting. 

Claire has been having good diapers today and actually played in her bouncy seat some like at home.  So that's a good thing.  She has been able to get some good naps today, so I hope that means a good night.  We also got our AC fixed in the room, so maybe we will sleep better without being hot.  Claire's blood pressure has also been a little high today.  I am attributing this to being uncomfortable and tired. 

They weighed Claire last night and she had lost about 1 pound since the pre-op day.  I figured she would lose at least a pound with all the liver fluid and and liver tissue that they removed.  So she's back down to about 13 lbs.  Claire still seems sore and cries a lot.   But we think she would feel much better if we could just get home.  I know it will be a LONG and trying ride home in the car.  But if we can just get there, maybe she will feel better in her own room, home, and crib. 

Thank you for all of the continued prayers and concerns.  We are truly grateful for each and every one.  

Love,
The Scott Family