Thursday, March 31, 2011

A day of pros and cons

Yesterday we took Claire back to Duke for some check ups and tests.  Needless to say the day was full of pros and full of cons.  The easiest way I know to write this post is by comparison posts.  So here we go:

#1 PRO:  Claire did GREAT on the ride up to Duke yesterday!  She slept from home to Julie's house, played with Aunt Julie and her animals, then rode nicely up to Duke. 
#1 CON:  It rained horribly on the drive up to Duke. 

#2 PRO:  When we walked into the lobby of the Children's Health Center, we saw one of Claire's NICU friends, Elizabeth and her family!  We haven't seen them since we left in January.  Elizabeth was there for some check ups and tests too! 
#2 CON:  No really con to this!  :)


#3 PRO:  We were called back quickly and were told we could go ahead and have the echo and ultrasound done together so we didn't have to go upstairs and then back downstairs for appointments.  We were thinking this would get us out of there earlier.  Claire did great for the echo, just wiggled a lot. 
#3 CON:  We ended up being at Duke for 5 hours.  Claire wouldn't be still for the echo so it took longer than normal.  They wanted to sedate her but I had just fed her.  So the next one she has in 6 weeks, she will have to be sedated.  At this echo, I had to hold a light wand thingy up for her to try to keep her occupied, but failed miserably.


#4 PRO:  We don't think they saw any leakage between the bovine patch they put in during heart surgery.
#4 CON:  The cardiologist DID say they think she has some left pulmonary stenosis that may have to be fixed.  Of course in my normal state, when someone tells me something "bad" I freeze up and tune out.  So I was unprepared to ask, "why?  when?  how?"  etc.  Of course, I didn't think of all of my many questions until we were on I-40 going home.  I tried calling her office and left a message and also emailed her late last night, but have not heard anything back.  We thought we were past the heart issues.  Why one more?  Why was it not fixed in her surgery?  Is it something that just happened?  Or has it been this way the whole time?  The procedure to fix it would be like inserting a balloon in the artery to "dilate" it.  How will this be done?  When?  I know she said it wouldn't require another open heart surgery.  Thank God.  I know she said it was past the part of the artery that the surgeon fixed.  It seems to be after the artery forks and one side goes to the right lung and the other side goes to the left lung.  So somewhere between the part of the artery that was fixed in her surgery and her left lung.  What side effects do I need to watch out for?  She said just eating habit changes.  Geez - that could be anything!  We are so dumbfounded once again.  I slept with my teeth clenched together all night.  S.T.R.E.S.S.

#5 PRO:  Claire slept through pretty much her entire ultrasound of her liver.  She did great!  She woke up for the ultrasound of her groin to look for the hernias, but just laid there contently. 
#5 CON:  The large cyst was measuring bigger.  I could tell from the measurements on the screen.  I think 2 weeks ago, it was measuring around 6x5x6 or something.  Now it's measuring 8x7x6 or close to that.  The small cysts seem to be still about 1 cm by 1 cm.  The big cyst on the right lobe and one small one on the left lobe are considered "complex" meaning they are made up of both fluid and solid structures.  We were unable to see the surgeon yesterday, so I have put a call into her to see if she can call and let me know what she thinks about the cysts and the current plan.  Also they did find 2 hernias on either side of Claire's groin.  They seemed small, but what do I know about inguinal hernias?!  Not much!  So this is something else I need to ask the surgeon since she would be the one that would fix them. 



#6 PRO:  Our FAVORITE doctor, Dr. Rachel, came by on her day off to visit with Claire!  We just love her!  She was waiting on us once the ultrasound was done!  She hung out with us and went to her cardiology appointment with us.  She even went with me and Claire during the EKG.  Dr. Rachel brought Claire the cutest pink puppy that is so soft!  I know Claire will love it.  I do!  We were able to sit and visit while waiting.  It was so nice.  We sure miss Dr. Rachel.  She is an excellent doctor.  Did I say that we love her?!  She also gave us some EXCELLENT news!!!!  Her fiance will be staying and working at Duke, so she will now be applying to do her fellowship at Duke.  What does this mean for us?  Well, she is going to be a pediatric cardiologist.  Yes!  So Claire can be her patient forever!!!  YAY!!!!!!!!!!!!!!!   This totally made our day!!!!!!  Dr. Rachel also told us about one of the cardiologist that Claire had seen and that she was also a geneticist.  That is good since we are now considering taking Claire to a geneticist.  Someone who is already familiar with Claire.  Shew!
#5 CON:  There is no con to this one!





#6 PRO:  By the time we got onto the Durham Freeway, Claire was asleep in the car.  She slept the entire ride home!!!  Even when we stopped at a drive through!   Usually her eyes pop open when the car stops at a stoplight.  She was so exhausted from the day that she was just out.  She even slept last night from 7:30 pm to 5 am!  Go Claire!!!
#6 CON:  It rained the whole way home too. 

*One more addition I forgot:

#7 PRO:  Claire has many nicknames:  Claire Bear, Claire Rose, Sugar Bear (pronounced "sugah"), just plain "Sugah", Sweet Girl, etc.  Usually the way I address her the majority of the time is "hey, sugah bear! with about 25 syllables in it.  She loves it.
#7 CON:  Claire does not know her real name.  Trent is about the only one who calls her by "Claire" as he just loves that name.  Our child will grow up not knowing her real name if I have much to do with it.  I need to work on that and start calling her Claire every now and then....

So that's the kind of day it was.  Up an down.  Back on the roller coaster.  We are so proud of Claire and how she did yesterday.  She is growing up so fast.  Now it's just sit and wait for the doctors to call us back.  I am a patient person, but it's very hard to wait. 

Love,

The Scott Family

Monday, March 28, 2011

First time rolling over

Claire is getting stronger and stronger each day!  Yesterday evening, we were working on our PT and I was teaching Claire how to roll from her back to her side to her belly.  She is getting better at balancing on her side, but not rolling on over to her belly.  So I rolled her to her belly for her.  Claire has gotten where she can really push her head up during tummy time.  Her little arms and head are really strong!  So I ran to take a picture of her pushing up.  I started praising her for doing that and the next thing I know, she had pushed herself over and rolled onto her back!  We tried again, but it just made her mad.  Once was enough for the day. 


before rolling over

after rolling over


We had a nice quiet weekend and got our broccoli planted on the farm and then hung around the house due to the weather.  I am starting to add the rice cereal back to Claire's formula in hopes it will keep her full during the night and maybe we can cut out the midnight feeding eventually.  We will see how it works! 

Also, not sure if I have shared this story or not on the blog.  I know some of you have heard it.  But the weekend before I went into labor, Trent and I participated in several activities including my brother and dad's birthday party, a children's consignment sale, and a farm tour on someone else's farm.  It was September 25-26 so I was just 6 months pregnant.  This was the weekend before I went to the doctor on Monday and had gained 10 lbs in 8 days (after I had only gained a total of 15 lbs in 6 months). 

Well, at the consignment sale I knew I felt bad and out of breath.  I had to sit down several times while browsing children's and maternity items.  Then I left and went to the birthday party.  I was so uncomfortable and after eating, basically wallered on my parents' couch in an effort to get comfortable.  I remember my family making remarks about how I looked like I felt really bad.  And I did.  My dad had taken pictures of us and one in particular of me showing off my belly that day.  We thought the pictures had been lost, but I found them on his computer this morning.  I have been searching for it because I wanted to see really how big I was. 

The next day, we went to the farm tour and I helped register people as they arrived.  I had SEVERAL people ask when I was due.  When I told them December 22nd, they just looked at me with a crazy look and said "wow, you look like you are due tomorrow!!"  I was appalled to say the least!  People, especially complete strangers. should NOT tell a pregnant woman that she looks like she is due any day now when she's just told you she has 3 more months to go!  I thought "geez, I know I don't look THAT pregnant, do I?!"

Well, you know the rest of the story of how 3 days later I was in pre-term labor.  Guess those people were right, huh?  I WAS due any day now, just not supposed to be!  Seriously, my belly felt like it doubled that weekend.  So I have really wanted to see those pictures from the birthday party for a while.  It's the last ones that were taken while I was pregnant except for the really great ones of me in the hospital in a hospital gown :(.  (We do have one of me a few hours before Claire was born since it was our 8 year anniversary, but that one is not going on the blog!!)

So here it is.  I guess after looking at it, I can see why people thought I was more than 6 months pregnant.  I carried Claire very low the entire pregnancy as you can tell.  Also, I notice how swayed my back looks in this picture.  No wonder I had severe back pain!  It's really kind of weird to even remember being pregnant.  Glad I have the pictures and especially CLAIRE to remember it by!




Wednesday, March 23, 2011

3 months old - adjusted age

Yesterday, Claire was technically 3 months old.  Like we have said in earlier posts, with preemies, the doctors go by their corrected age (the age they should be based on their due dates) as far as determining their developmental skills and what they should be doing at that age.  So even though Claire is really 5 1/2 months old, she is technically only 3 months old. 

So I thought I would make a post about the things she is doing at 3 months old adjusted age.  I have seen on some other blogs where each month a mom posts what their child is doing.  I haven't really done that so far, but I am going to do it for today at least! 

Claire is very, very alert and attentive.  She is chewing her hands non-stop and drooling everywhere (wondering if some teeth are on the way).  She makes great eye contact with people.  It is really special each night as she is going to sleep, she stares me in the eyes for several minutes as if to make sure everything is ok.  Then she drifts off to sleep.  I L.O.V.E. it.  She also does this "scratching" thing I guess as a comfort thing when going to sleep.  She scratches her fingers on my hand or face.  It's cute except when her nails need to be cut.... And I don't cut her nails - my mom has to.  I am too scared I will cut her. 

Claire is very talkative.  She loves to mimic our sounds and she listens very intently.  She has started making very loud throaty sounds recently.  Claire smiles ALL the time and it is so darn cute!  She is beginning to laugh a little - it sounds more like a gasp of air, but we are pretty sure it's the beginning of a laugh. 

She has great head control and turns her head side to side easily.  She holds her head pretty steady when we hold her upright (no more bobble head).  Claire's bedtime is around 7 pm and she usually sleeps until around 3 am.  Normally she will go back to sleep after eating at 3 am but not this morning.....

Claire used to love her baths.  Then after her heart surgery, she HATED them.  Screaming fits galore.  I think it was because she had to go back into using that net thing that kept her from being submerged in the water because she couldn't get her incision under water.  Now that she's back in the tub, she loves it.  We sing "splish splash" each night and she kicks and hits the water.   Last night she did it so much, she splashed a lot of the water out of her tub! 

Claire weighed 11 lbs 7 oz last night and is eating anywhere from 5-6 ounces at each feeding (which is usually 3-4 hours during the day and 8-9 hours at night).  She is obsessed with her red heart balloon that Grandma Neat-Neat got her for Valentine's Day.  It is still inflated in her room! 

We have started taking Claire on stroller rides and she seems to like that.  She also likes to lay on the couch with her Daddy and they talk back and forth to each other a lot.  They also like to watch TV together.  She loves to watch TV.  I think it's all of the colors and faces.  I have to be honest - we haven't been reading much to Claire.  By the time we get home from work, it's time for her bath, for her to eat, and for her bedtime.  So we just take full advantage of spending time with Claire by talking to her and holding her.  Maybe we will work the books in soon. 

Claire likes music.  She has from the very beginning in the NICU when they brought a CD player in and put it in her crib.  She still listens to her lullabies most every night.  Claire also recognizes her family.  And she also recognizes a doctor. 

Her incisions are healing wonderfully.  The one from her first liver surgery is fading away.  The incision from her heart surgery is smooth now and getting lighter. 

Claire is still very determined and has a strong personality.  She lets you know when she's happy and when she's not.  She is pretty impatient when she is ready to eat.  I wish I could design a bottle warmer that worked in like 5 seconds because she doesn't give us much warning! 

We are so excited to see Claire start to grow and change each day.  She is one special person in our lives.  She is a miracle baby. 

Love,
The Scott Family

Monday, March 21, 2011

March of Dimes and a t-shirt design contest

I have always heard of the March of Dimes.  I even walked in a March for Babies event almost 10 years ago with Beth "just for the fun of it" and not really thinking twice about the fact that what the MOD stands for could affect me and my family.  But it has.  And as always, I like to support things that mean a lot to me.  So I am planning to walk again this year in the March for Babies event on May 7, 2011 in Morehead City

I have created a team for Claire called "Team Claire Rose" (go figure!  I tried Team Claire but that was already taken).  Right now I am the only team member, but I am hoping that a few of you will want to join me! 

You can either donate to our team or join our team by going to the following web pages:

http://www.marchforbabies.org/team/t1546466

http://www.marchforbabies.org/clairescott

As I read on the MOD website, they raise money to help fund research for preventing premature births and birth defects.  Both of these things are issues that we have dealt with this past year and are still dealing with.  It is so important for doctors to be able to do research on premature births and birth defects and preventing them to help save lives.  I have no idea how much money has been used to help make NICUs better places, enable the NICU to have better equipment, allowing doctors to know how to best treat preemies and/or babies with birth defects like Claire's. 

This is what their website says about how the money raised helps with birth defects and premature births:

Preventing and treating birth defects

Each year in the United States, more than 120,000 babies are born with a birth defect. They are the leading cause of infant deaths. There are thousands of different birth defects, affecting the structure or function of every part of the human body. The March of Dimes provides grants to researchers, with the goal of understanding the causes of birth defects and developing new ways to prevent and treat them. Currently, about 70 percent of the causes of birth defects are unknown.
The processes of development
Some March of Dimes grantees are studying basic biological processes of development. This important research should improve our understanding of how genes and other factors direct the transformation from a single cell into a complete being. A more advanced look at the process of development will help reveal what can go wrong along the way. Others are conducting clinical studies aimed at finding ways to prevent or treat specific birth defects.
Genetic causes
Genetics has long been a main theme of March of Dimes research. Grantees have discovered genes that cause or contribute to a number of common birth defects, including fragile X syndrome, cleft lip and palate, and heart defects. These discoveries pave the way for treatments and preventions for these birth defects.
 

Preventing premature birth and its consequences

Premature birth is a complex problem with no single solution. More than half a million babies are born prematurely each year in the United States. In up to 40 percent of cases, the cause is unknown. March of Dimes researchers are seeking the causes of prematurity as a step toward developing effective ways to prevent it.
Prematurity research initiative
In 2005, the March of Dimes began the Prematurity Research Initiative (PRI), which funds innovative research into the causes of prematurity. More than $15 million has been awarded to 43 grantees over the past 6 years. Some PRI grantees are exploring how genetics or a combination of genetic and environmental factors may influence a woman’s chances of going into labor prematurely. Others are examining how infections may trigger early labor. One of every three premature births can be attributed an infection in a woman’s uterus, which may have presented with no symptoms.
Treating preterm labor
PRI grantees also are exploring new ways to treat preterm labor. Some are studying how the body normally suppresses uterine contractions until a baby reaches full term, so that new drugs can be developed to prevent or stop preterm labor.
Saving preemies’ lives
In addition to PRI support, the March of Dimes funds prematurity research through its national research program. Grantees are improving the care of premature babies by developing new ways to help prevent or treat common complications of prematurity. For example, researchers helped develop surfactant treatment, which has saved tens of thousands of premature babies with breathing problems.


So please join Team Claire Rose and at the same time help babies like Claire!!!


And as an added bonus, there is a contest involved!  I am calling all of you talented (or non-talented) people out there to help us design a t-shirt for our team!!!  As a Meredith College graduate, you fellow Angels out there know we have to have a t-shirt made for everything!  It can be anything you want that would help people learn about Claire's experience or just something that represents Claire.  Adults, children, classrooms, friends, etc. can participate!  We want the shirts to be something special.  So if you are interested, please send your design to rebeccascott333@yahoo.com no later than April 18th (this will give us time to get the shirts made).  We will then choose a winner from all of the designs and have our t-shirts made for our team.  We will post the winning design on our blog too and the winner will get a t-shirt!


(Let us know if you join our team and your t-shirt size.)


If you have any questions, just let us know!  We are so excited about participating in this walk!!!

Love,
The Scott Family

Friday, March 18, 2011

Our lucky little leprechaun

Claire had her SICC appointment yesterday on St. Patrick's Day.  We were concerned that it was going to be a really long day for Claire since we had to leave home around 6 am to be at Duke by her 10 am appointment.  But the ride up to Duke was great and she slept the whole time.  We even stopped off for a pit stop at Aunt Julie and Uncle James' house as usual and got to visit with Aunt Julie and their animals. 

Once we got to Duke, we met up with our 2 favorite nurses!  Claire had on her outfit from Uncle Phillip and Aunt Brandy with a little bit of green on it in one of the flowers.  But nurse Marie didn't think that was enough so she had the perfect little St. Patrick's Day outfit for Claire ready and waiting.  Nurse Susannah brought Claire her blanket back that we accidentally left when we were discharged from the NICU back in January.  Thank God we had Susannah who recognized the special blanket and took it home for safe keeping .

As you can see, Claire was totally excited to see her favorite nurses!  Only thing missing was Dr. Rachel!  Even Aunt Amanda joined in on the fun yesterday!  Any chance she gets to see her Claire, she will find us!


Our favorite nurses!





Claire weighed approximately 11 lbs 8 oz yesterday and was 21.7" long.  She met with the neonatologists and they were impressed at how well Claire was doing since leaving the NICU and after her heart surgery.  They were a little concerned about the small hernias that Claire has in her bowels, so they plan to add on an ultrasound of them when she goes back for her liver ultrasound at the end of the month.   The fellow thought she felt them but the attending didn't think he felt the hernias.  So we will see. 

Claire then met with the physical therapist.  Claire really likes her!  They did some exercises and Claire did really well!  The PT showed us several different activities and exercises to do to work with Claire's muscles.  In most preemies, their muscles on the back of their bodies are stronger than the muscles on the front of their bodies.  This is caused by several factors - 1.  preemies do not get the extra weeks to stay balled up and curled up in their momma's belly.  So their curling muscles don't get much work before they are born.  2.  When preemies are born, they are kept in the hospital for so long and mainly lay flat on their backs.  This strengthens those back muscles more since they are flat on their backs and not curled in a fetal position.  3.  Claire has had 2 surgeries that affect the front of her body.  So she has not been able to practice tummy time as much as she should.  So we need to work with Claire's front muscles to help her further down the road with motor skills and sitting.  But we don't have to have any in-home therapies at this point!  We can just work with Claire at home ourselves.  They will do a more in depth exam when we go back in 3 months to as this will be the time they can see if Claire has any delays developing. 
Doing patty cake for part of PT.

Practicing tummy time on Momma.  Great head control!

Ok, I just couldn't choose which picture below I liked best, so you get both! 


We were done by around noon so we headed to the Duke bookstore so Aunt Amanda could get some things before she starts her new job at Duke in a few weeks.  Claire saw lots of neat Duke things she wanted, but they are all still too big for her.  We then headed over to the Chick-fil-A that's in the Duke Clinics for some lunch.  I was very nervous to take Claire in there because it's kind of like a cafeteria area.  But we found a little corner off to ourselves and I covered Claire up with her car seat shades while she napped. 

Then came the dreaded ride home.  I was so nervous since Claire had only had 1 morning nap and a very short 20 minute nap at lunch.  We made it to Julie's ok but once we got there, she started screaming.  I figured she was just so overtired.  So we got back in the car figuring she would totally fall asleep in a minute once the car started going.  But she didn't.  So Granny suggested I pull out the DVD player from Great Grandpa and Great Mimi with the Barney disk. 

I had seen Claire watch Barney on TV once and she seemed to like it.  About 30 minutes into the movie, she was still watching it intently.  Not a sleepy eye anywhere.  Claire ended up watching the entire 1 hour video!  And LOVED it!  So that got us to Kinston.  Yes, where the ABC Store is located (my mom now calls it the All 'Bout Claire Store).  But we passed it and kept going.  I started feeding her while she was riding in her seat thinking she'd get a little milk then pass out, but she didn't.  She kept eating and did really well!  She started getting a little antsy when we got to Tuscarora, but that was it.  We made it home without incident!!!!

Watching my Barney DVD!

Home Sweet Home

Claire did great!  It must have either been the lucky 4 leaf clover outfit with leprechaun socks, or the fact that she got her special blanket back yesterday, or that Aunt Amanda may have whispered in her ear to be good.  Not sure - but we won't question it!  She slept from 7:30 pm to 3:30 am, ate and then went back to sleep until I had to wake her at 7 am this morning to go to work.  She is talking a lot now and making lots of sounds.  When she was talking to Trent the other day, we swore she said "da da" once!  She says something that sounds like "hey" a lot.  I wouldn't doubt if that's her first word since we say hey to her all the time.  She's also chewing her hands and fingers all the time and drooling a lot.  Wonder if there are some teeth coming soon???

We have a 2 week vacation from any Duke appointments so we are thankful.  We are looking forward to the great weather this weekend and hope we can go for a stroll or two.  Thanks for all the prayers for a good day yesterday!  They worked as always!!!!

Love,
The Scott Family

Tuesday, March 15, 2011

Jump Rope for Claire's Heart

Last week, some of Mrs. Davis' P.E. students at A.H. Bangert Elementary participated in the American Heart Association's Jump Rope for Heart.  I believe they have done this for years, but this year it was especially meaningful to our family.  Not only the fact that these young students were jumping rope for their own heart health, they were also jumping rope for children like Claire.  It is a fundraiser where the kids raise money by jumping rope and the money goes to help the American Heart Association and children with heart issues. 

What made it even more special this year was that a sweet girl decided that she would jump in honor of Claire.  I wish I would have known ahead of time and I would have posted this earlier so people could root her on!  But I just can't express what it means to know that Claire has such an impact on others already that a child who has never met Claire would want to do that for her. 

So a message from Claire - "Thank you A.H. Bangert students for jumping for your heart health and mine!  And a special thanks to Maggie for jumping in my honor!!"

Love,

The Scott Family

SICC

Claire will be visiting Duke again this week for her first Special Infant Care Clinic (SICC) appointment.  Since Claire was a NICU baby, she will be followed up by the SICC where she will get to see a neonatologist (hopefully one who saw her while in the NICU) and will get a complete medical and neurological examination.  She will probably also be evaluated by a pediatric physical therapist.  That way if they think Claire has any developmental issues from being a preemie, they can set things up for her to help her.  

I have been told that these appointments last up to 4 hours which can be very draining on a baby.  Especially one that is having to travel 3 hours there and then another 3 hours home all in one day.  We are praying her visit goes well and that everything checks out perfectly! 

Today is Claire's last day of lasix and I am so glad.  She had done really well recovering from her heart surgery.  I weighed her again the other night and she weighed 11 lbs 4.5 oz.  She had a meltdown again last night when we got home, so no weight or bath last night!  I am hoping these crying spells will go away as quickly as they appeared.  Now that we know that she is not hurting or hungry or anything and that she is just crying and mad, then it makes it better for me.  When I didn't know, I was so flustered trying to figure out what I was doing wrong.  But now we expect each day between 4-7 pm that Claire will break out in screams for about 30 minutes and pitch a fit.  So we just walk around with her, talk to her, look in the mirror at how silly we look, etc.  It's funny - when Trent talks to her during her crying jag, she listens and gets quiet.  Me, on the other hand, she pays no attention to.  I  hope we are not starting a habit here already with listening to Daddy and not Mommy....

So wish us luck this week for a great appointment!  And pray these crying spells start to go away! :)

Love,

The Scott Family

Monday, March 14, 2011

"Hi, I am Rebecca and I am a heart mama"*

*for this post, I will use "mama" instead of "momma" which I usually use :)

I became a heart mama on August 25, 2010.  This was the day we found out that Claire had Tetralogy of Fallot.  I became an official heart mama on October 6, 2010 - the day Claire was born. 

I had never heard the term "heart mama" or "heart babies" used to classify us as a group.  A group of alike people and families that are joined by one common thread - our child/children are born with heart defects.  Whether it be Tetralogy of Fallot or some other heart defect, we are all connected by this similarity. 

When we found out Claire had TOF, I wanted to Google it so bad to see what it was.  But I was highly warned not to Google it and not to read anything online about it.   So I had family and friends basically look it up and then just send us links that were "good" to read. 

We didn't really have a long time after Claire's diagnosis before she was born to look for other people who were dealing with the same thing.  And then after Claire's birth, I didn't really have time to look for other families dealing with the same thing due to being so consumed with Claire and what has been going on with her. 

So recently I have been needing to find other mom's that are going through similar situations with their babies and their hearts.  So I started searching and searching online and finally found a few blogs online written by mom's with babies with heart defects.  I am so glad to finally find these other blogs that I can connect to and say "wow - I guess I am not crazy for feeling the way I did that day when such and such happened!"  Even though each child is different, there are so many things that are alike between us moms and the gamut of emotions we feel each day whether at home or in the hospital.  The blogs have also help me realize that the gut instinct that all of us feel about our heart babies is always right.  No matter what. 

So in these blogs, I found that we have earned the honor of being called "heart mamas" and I love that.  We all have that connection with our heart babies.  Trent and I are so proud to be the parents of our heart baby.  There aren't really any blogs out there that I've seen about a "heart daddy" but that's definitely what Trent is! 

I am very proud to wear my heart mama badge of honor proudly on my shirt directly over my own heart. 

Love,


The Scott Family


PS - here are a few links to other heart mama blogs that I have connected to:

http://preciousmason.blogspot.com/

http://www.heartmamablog.com/

http://rebekahgraceellis.blogspot.com/

http://chdbabies.blogspot.com/ (this site also has a lot of CHD terms and research)

Saturday, March 12, 2011

The next best thing

Recently a lot of people have been really asking to see Claire.  They just can't wait!  And honestly, we just can't wait to be able to take her out in "public" for every one to see!  But we still have to be very cautious with Claire.  It's only been 2 1/2 weeks since she had her open heart surgery.  She still has an upcoming surgery in a few months.  It is still cold and flu season. 

So we are limited to where we take her.  Usually it's just to the doctors office, Duke, Granny and Big Daddy's house, or Grandma Neat-Neat's house.  So I figured I would try to get a cute video with my camera to post so you can see how active Claire is.  I guess a video of her is the next best thing to seeing her in person???

She was of course talking up a storm and as soon as I got my camera out, she stopped.  I think she's camera shy.  She just stares so seriously at the camera whenever I take it out.  No matter how funny or silly we act, she just stares at it.  Then as soon as I take it away, she smiles, talks, or does something cute.  So this is basically the 7th video I tried to take of her so she is just staring at the camera and then starts to get mad because she is tired of being videoed at this point!  Hope you enjoy!

Love,

The Scott Family

video


After much trying, I was able to finally get Claire to talk a little and even give you a little laugh!  Enjoy

video

Friday, March 11, 2011

Birthday Ticker

You will notice at the very bottom of the blog page that I have added one of the birthday tickers for Clarie.  Of course, I had to use the one with hearts on it for her as well as the baby in the pea pod since we grow them on our farm.  The thing I really like about this one is that is for premature babies.  So it gives her actual age and then her corrected age.  The corrected age is something we will have to keep up with until she is about 2 years old.  Her corrected age is based on her due date.  So even though Claire is 5 months old, she's really only 2 1/2 months old.  So developmentally she should be doing the things of a 2 1/2 month old even though she's twice as old.  It's very, very confusing. 

So I thought this ticker would help me and every one else to know where Claire should be based on her corrected age and not her actual age.  I will be glad when we don't have to keep up with 2 different ages and we can just go by her actual birthdate. 

Claire is doing well and getting back into her routine which is great.  It's been a long week for me because I have finally started back to work pretty much full time.  So getting caught up plus getting used to the work week again has worn me out!  We are hoping for a nice quiet weekend around our house. 

I weighed Claire tonight at home and she weighed 5110 grams!  Which for us is awesome because she is FINALLY off of the weight chart that we were given in the NICU 5 months ago.  I am not sure what 5110 grams equates to in pounds and ounces yet, but I know it's over 11 lbs since that's what the weight chart goes up to.  So she is growing!! 

I couldn't get her to smile in the picture below but thought the little dog outfit was just too cute not to post!




I also found a blog today of another Tetralogy of Fallot baby about the same age as Claire.  I have been searching for other TOF blogs to read to relate to and haven't found very many.  The one I read today is uncanny how similar things are (but different at the same time).  I will post more on that later!

Love,


The Scott Family

Wednesday, March 9, 2011

Teachable Moment

I totally understand that by posting things on the Internet is pretty much asking for criticism or advice or comments.  Totally understand.  So this morning when I read an email from a friend, I was not offended by her advice or comments.  I expect to receive these things.  But what the email was about really hit home for me.  Thoughts that ran through my head were "am I a bad mom?" or "what if something would have happened?" and "please God forgive me!" 

As I explained to her, I am a "little picture person" meaning I don't see the big picture most of the time.  You can probably see that from a lot of my blogs.  Thank God I have Trent who is a big picture person that helps me through all of my little picture moments! 

But this big picture moment was brought to me by a friend today.  The last two times we have carried Claire to Duke, we have had to drive home the last 30 minutes without her in the car seat due to her screaming and crying uncontrollably.  I am totally not a mom who likes to let her child cry - especially after all that she has been through.  I usually jump pretty quick when she cries.  So to have her cry so badly, it breaks my heart.  And I guess it clouds my judgment as well.  I should never have her in the car without properly being in a car seat.

I am also one of those people who knows how my luck is, but also thinks that crazy things will not happen to me.  You would think after the past year I would have realized by now that I should never say never.  So when it was brought to my attention that terrible accidents happen when babies are not in the car seat that can kill them or leave them seriously injured, it really hit me hard.  Yes, I know way back when, kids never rode in car seats "and we all survived!"  But when it's my responsibility to take the best care I can of Claire and protect her to the best of my ability, putting her safely in her car seat is best.

So, from now on, if you see us sitting at the ABC Store on Hwy 70 for hours at a time, or hear/see me walking around with a screaming baby around town in a parking lot, just know that I am waiting it out.  I will just have to sit there as long as it takes.  I am using this as a teachable moment not only for myself, but for others.  Thank God nothing terrible happened the 2 times that I did it.  But I am good at learning from my mistakes - lesson learned. 

Love,

The Scott Family

Tuesday, March 8, 2011

Driving me to drink

Not literally - so don't worry! 

Claire had a good visit today at Duke.  It was her 1 week check up after being discharged.  She did great until she realized she was back at the hospital and then she cried and cried.  It took Granny holding her to calm her down.  And it also took me, Granny, and the ECG technician all singing "Twinkle Twinkle Little Star" in awful unison.  What a sight! 

Claire finally calmed down and did great getting her blood drawn surprisingly.  I asked if they would also run a liver panel while they were drawing blood, so they did and it turned out good.  Claire also had a chest x-ray to check for fluid around her heart and in her lungs and that came back good as well.  She actually seems to like the x-ray each time because she gets to lay in this really nice foam bed thing that snuggles her.  I need one of those. 

I also pointed out to the NP that Claire's belly was looking more distended than normal.  Especially on the right side, and she agreed.  So they ordered a liver ultrasound today and we got that done while we were there.  I don't know the results of it yet.  But I noticed one of the fluid filled cysts was measuring around 5 cm x 5 cm or so.  I think that's bigger than it was, but I don't have those measurments.  I need to get those from the last 3 ultrasounds so I can compare. 

We shopped at the Duke bookstore and bought some Duke t-shirts and then headed to Aunt Julie and Uncle James' for our pit stop on the way home.  Claire did great getting there and enjoyed playing with their cats and the new dog, Bernie. 

Then came the dreaded ride home again.  After last time, I was very nervous.   But she settled down and went to sleep in Clayton.  She was sleeping pretty hard, so I decided I would take a nap to while Granny drove us home.  Then out of the blue while we were passing Baron and the Beef in Kinston, Claire let out startling screams!  Here we go - it was around 5:15 pm.  Her screaming hours are between 4 pm and 6 pm each day.  We are thinking it's a touch of colic. 

So just like last time, we pulled off at the ABC Store in Kinston.  These people are going to think that we are crazy bringing a screaming baby to the ABC Store each time we have a Duke trip!  This time I had to get out of the car and walk her around to try to calm her down.  So instead of giving Claire a stiff drink from the ABC store, we pulled out the Gripe Water and tried to get her to swallow some.  She did swallow a few drops between screams and began to calm down.  We don't know if it was the Gripe Water working or if she was beginning to come down from the colic cries.  Either way, she felt better.  And then we had to break the law - again.  I had to hold her all the way back home again.  I am seeing a pattern here......  So not only did we hang out at the ABC Store, we also broke the law today.  Again.  But y'all just don't know how loud this little baby can scream!  Ask the people pumping gas at the store!

So Claire is spending the night with Granny, Big Daddy, and Aunt Amanda tonight so she can get some rest and so we can get some rest.  We are waiting for the liver surgeon to call us about Claire's liver ultrasound and let us know what she thinks. 

On another note, we saw on Facebook that Claire Elizabeth was back at Duke today for a stem cell reinfusion and had had several seizures yesterday.  So they stopped by her neurologist's office to let him see Claire Elizabeth and he admitted her to the ER to get a CT scan and see what's going on.  So please keep her and her family in your prayers.  Also Eliza is home but is struggling with severe reflux and feeding issues.  So please keep them in your prayers as well. 

PS - Claire weighed 10 lbs 11 oz today!  YAY!

Love,

The Scott Family

Claire and me in the Carolina Hurricanes hallway near radiology
awesome wall murals
waiting for my appointments
in the Children's Health Center
tired after all of my tests - check out my big girl Bugs Bunny Band-Aid :)

Sunday, March 6, 2011

Happy 5 Month Birthday Claire!

Claire is 5 months old today!  Wow!  It's so hard to believe it.  These past 5 months have flown by.  We are planning to take it easy today and just hang out at home.  Currently me, Claire, and the dog are in the bed and Claire and the dog are both snoring as they are snuggled together.  Too cute! 

Enjoy the pictures below from this weekend and today!

Love,

The Scott Family

Claire with her Great Mimi and Great Grandpa

"cheeeese"

5 months old today

"I'm such a happy girl!"

snoozing with the dog

Friday, March 4, 2011

A few firsts

Claire had to go to the pediatrician today and get her synagis shot.  That was not fun for her.  But they said she weighed 10 lbs 6 oz and was 21 and 3/4 inches long (I think).  She didn't panic as much as I thought she would, but she did not like it!   It was about lunch time when we left and I thought I could run to Chick-fil-A drive through and pick up some lunch.  She would be perfectly fine when I would drive, but as soon as I would stop, she would cry.  So I thought we might make it to get lunch, but that didn't work out.  So I had to pull out of line.  Then I thought maybe I could make it to Bojangles and she would be asleep and I could go through that line.  But that didn't work either.  Oh well.  I think she was telling me she wanted to eat somewhere else....

We decided since it was such a nice day that we would ride out to my work and visit.  This was a big step for us since this was really Claire's first "visit" to anywhere other than the doctors office, Duke, or our family.  I have to be honest, I was very nervous.  But I am glad we visited.  Claire got to see Cathy again, and also got to meet Susan, Krystal, Craig, Sherry, Murray, and Debbie (we missed you Amanda!).  Susan literally rubbed my belly every day at work while I was pregnant and talked to Claire.  So it was neat for them to "reunite".  We just visited and I held Claire.  I wish we could have passed her around, but with her recent surgery, I thought passing her around may be too much and make her sore.  So maybe next time!

We then stopped by Trent's shop and visited him for a while.  Claire has been by the shop before but I have never taken her into the shop.  She loved it and fell asleep in there while watching her Daddy.  We then left and hit up Chick-fil-A again since she was asleep.  It worked that time. The weather was just too nice to sit inside so we rode to Granny and Big Daddy's house and went for a walk around the block there.  I would have walked her down our road but I felt it would be too bumpy and too much movement for her little chest incision.  We had a nice walk.  It was strange walking around my old neighborhood.  It brought back so many memories of riding our bikes down those roads, looking for sharks teeth at the stop signs, or walking to friends' houses.  Now I am pushing our child down these roads.  Neat!

On the way home we stopped by Grandma Neat Neat's house to play.  She gave Claire a gift today - it was Trent's NCSU jacket when he was a baby.  It is too cute!  She also gave me a picture of Trent wearing it.  It is so uncanny how much Claire looks like Trent.  I love it! 

Then we rode back over to the shop and looked at Trent's tractors.  We even went into the greenhouse where it was warm and hung out.  

So today was full of firsts for Claire - a visit to work, several visits to the shop, her first walk around the block, and her first visit in the greenhouse.  We hope this is this is just the beginning of many firsts for Claire!

Love,

The Scott Family

Claire and Grandma Neat Neat

my new bonnet

looking cute in pink!

sleeping in the greenhouse and growing with the plants

Wednesday, March 2, 2011

Desperate times call for desperate measures

While Claire was recovering at Duke, she had some special vistors.  I have mentioned some but have not mentioned the others.  They include Mr. and Mrs. Griffin and Claire and Melissa.  Melissa was my college roommate.  Last time she planned to come visit Claire was like the day before she was discharged from the NICU.  She came yesterday and Claire was discharged a few hours later.   I have decided that the next time Claire is admitted to Duke that Melissa needs to plan to come see her very soon so we can get discharged!  :)

I have also decided that our almost 5 month old is smart.  She recognizes things and associates things.  For example, she had been poked so many times in her arm that when I took her hand to wash it the other day, she broke down and screamed so terribly.  She thought I was going to poke her.  Even when the doctors would walk in to check on Claire, she would be perfectly fine.  She would see them and scream like a holy terror.  It was so bad!  She has learned that being at Duke equals pain most of the time and she is scared.  I could see it in her eyes.  It was so sad. 

So needless to say, after open heart surgery and a week in the hospital being poked and examined with no sleep, our little girl had enough.  Yesterday when we were leaving Duke she started being fussy.  I had to wait in the outpatient pharmacy to pick up some meds for her and thought it wouldn't take long.  I was wrong.  So I had to call Amanda to come pick her up as she was waiting for us to meet her so we could go home.  So she picked up Claire to ride her around and soothe her while I waited for the meds. 

When Amanda came back by to pick me up, Claire was screaming in the back seat.  Amanda said every time she drove, Claire hushed and when she stopped at the light, Claire screamed.  This is what overtired looks like I guess for a baby.  So we finally got her calmed down and asleep until we got to Julie's house about 45 minutes later.  She was happy there and good to go - or so I thought. 

My mom had met us there to drive me and Claire home.  We put her in the car around 4 pm and didn't get home until 7 pm - a trip that normally takes 1.5 hours took 3 hours.  Claire screamed and screamed unconsolably about 95% of the drive home.  We stopped at several locations along Hwy 70 including a butcher shop and a gas station.  Finally at the gas station in Dover we decided there was nothing that was going to make Claire happy except for me to hold her.  If I tried putting her back in her car seat, she would start screaming again.  This is NOT like our child!  But I knew she just wanted to be held and comforted.  It had been a long week for a little baby (and her family).  So as Claire and I were in the back seat both crying, my mom suggested I just hold her as we drove home.  Yes, we broke the law.  But as the title states, desperate times call for desperate measures.  I am 100% sure we would still be sitting in the gas station parking lot right now if we had not done this.

So she slept in my arms the rest of the ride home and had a good night once home.  Big Daddy met us at home and carried her around and she was perfectly fine.  Grandma Neat Neat, who had heard her screaming on the phone, said she wouldn't have believed me if she hadn't heard it for herself since Claire was like a totally different baby since being home.  CRAZY. 

So today she has been a little fussy and clingy, but who wouldn't be after what she's been through.  So I have held her most of the day and now Neat-Neat is holding her upstairs so I can get some things done around the house.  I hope to give her a bath tonight to wash that hospital smell off of her and maybe she will forget it for a while.  I guess until we go back next week..... :/

Below are some pictures of the screaming Claire and the happy Claire at home.  There are also some pictures of the sign that met us on the way home.  The sign is at the church Trent grew up at in Rhems on Hwy 17 and is a sign in memory of Claire's Granddaddy.  It was a relief to see the welcome home sign once again yesterday evening.  The pictures are not the best since I took them with my phone. 


Love,

The Scott Family

before getting home

after getting home


We are home...again!

Claire was discharged yesterday and we are now home again!  Thank God!  We are trying to get adjusted again but we are so glad to be back home.  Thank you for all of the continued prayers.  We would not have made it through without them.  We now are in recovery mode and hopefully Claire will be ready to start making appearances in the coming weeks!  It's still cold and flu season, so we have to be very careful.  But we are so glad that we are 2/3 of the way through her surgeries.  Two down, one to go. 

PS - the other night at the hospital, Claire weighed 10 lbs 7.5 oz!!!!  She wore her first 0-3 month outfit last night.  It's still too big, but the newborn size is very snug!

Love,

The Scott Family