Friday, September 30, 2011

One year ago September 30th

I don't remember much about a year ago today.  I was completely drugged up on magnesium sulfate to the point I couldn't see straight, was sick on my stomach, and couldn't even lift my arms and legs by myself.  I remember I couldn't read the doctors or nurses name tags so I had a hard time remembering their names and faces.  They had 2 faces because I was seeing double. 

I was so, so, so, so hot that day from the mag.  I am usually a cold natured person.  I have a space heater in my office at work that I run year round.  I wear long pants, socks, and long sleeves to work every day - year round.  I am ALWAYS cold.  Trent, on the other hand, is hot natured.  He is always hot.  But on this day a year ago, the roles were reversed.  I remember continually asking Trent and every one in the room, "are y'all hot?"  Trent would go over and turn the A/C down a little more.  One time I looked over and he had his long pants on, boots on, his work shirt, and his work coat on - and then he zipped the coat all the way up to his neck.  I knew then he was cold.  But I was still hot!  That mag sulfate may work great for stopping contractions but it is rough stuff.

My sisters and other family members were trying to cool me off with cold wet washcloths.  That wasn't enough.  They finally had to get a plastic bucket and fill it with ice cubes, soak the cloth in the ice water, and put the cloth on my face and neck with ice cubes still stuck to it.  That finally gave me a little relief. 

Sometime during the day, they did an ultrasound and realized that Claire's cyst was pressing on all of her vital organs and that was not good.  It was also pressing on her stomach and not allowing her to "swallow" the amniotic fluid.  So in turn, the amniotic fluid was just backing up in my belly causing contractions.  A lose, lose situation.  They couldn't figure out what was going on with my placenta. It was nothing they had ever seen before - at Duke mind you. 

So the doctor that I had seen on Sept. 3rd when we went for the 2nd opinion was thankfully working this day.  He knew my history.  I don't remember much of the conversation, but what I do remember was that he said we had to make a decision.  Either do an amniocentesis and draw fluid out of my belly AND also out of Claire's liver cyst and risk pre-term labor (which I was already in) OR do nothing and Claire and/or I would likely die.  I remember him saying that, but I don't really remember it registering. 

We were so blessed to have the BEST labor and delivery nurse ever that day - Tammy.  Our family was a mess.  She came in and said - "ask me any questions you want and I will answer honestly."  So we asked away.  She told us like it was.  Then everyone left Trent and I to make our decision.  We didn't really see that we had any choice.  We called the preacher and asked him to pray with us over the phone and that comforted us.  We told Tammy we were ready and wanted to do the amnio.

I asked Dr. Brancazio if they had ever done the liver cyst draining through amnio before. No - he hadn't.  I asked if it had been done at Duke before - no, it hadn't.  I thought Duke was the place where all the weird stuff was done!  He and another doctor went to research it for a while.  They came back and we got ready. 

He explained the risks that a needle would be going into Claire's body and they couldn't really control her movements inside my belly.  They could damage her or other organs accidentally.  He did explain that they would insert the needle through my belly and into Claire's liver first.  Then the needle would come out and a catheter would be left.  They would drain the cyst first, then pull the catheter out of Claire into the amniotic fluid, then drain the fluid from me. 

I remember them getting started, and all I wanted was ice.  I just looked at Trent the whole time and begged him for ice.  He would put ice chunks in my mouth.  My mouth was so dry and hot from the mag, I couldn't even swallow because my tongue would stick to my throat.  It was TERRIBLE! 

The procedure worked and they drew I think about 90 mLs of fluid from Claire's cyst and over a liter of fluid from me.  Trent said you could watch my belly basically shrink as they did it.  And you could see on the ultrasound machine that Claire's cyst walls were collapsing.  I am pretty sure this procedure saved both of our lives that day.  Like I said, I don't remember the severity of it, but have been told since then that it was a life or death situation for the both of us. 

Today, one year ago, my sisters started this blog.  Here is the very first post:

Thank you for following our journey for the past year!  All of the prayers have been more than we could have asked for. 

The Scott Family

Thursday, September 29, 2011

One year ago September 29th

Wow - it's hard to believe this day is here.  One year ago today, I was in pre-term labor and didn't know it. 

The night before, we were in Claire's nursery getting curtains hung and going through a few things.  I remember sitting on the floor just not feeling well, but that was nothing out of the ordinary.  I had just had the ultrasound earlier that day to check on Claire and she looked good. 

The next morning, I remember waking up to the alarm clock around 6 am and thinking my belly sure did hurt.  But I continued to snooze a little while longer.  I just figured I had slept in one position all night and my stomach was sore from that.  I finally got up and that's when I realized that something was wrong.  I still didn't realize I was having contractions.  But when I went to the bathroom, I knew something was wrong, seriously wrong. 

I yelled for Trent and he didn't know what to do.  We frantically searched the book I had been reading "What to Expect When Expecting" to see what was going on.  What I read told me that I needed to be seen immediately.  So I called the OB/GYN's office knowing they were closed, but praying they had a on call doctor.  No.  The message just said to go to the ER if you thought it was an emergency or the office opened at 8 am.  Well, I didn't want to go sit in the ER because I didn't know how long it would take to be seen.

So I decided to get a shower, get dressed, and just show up at the office at 8 am.  I put on my most comfortable maternity jeans and a new yellow maternity shirt I had just bought that weekend at the consignment sale.  I figured I would just head on into work after my check up.  Not sure why I thought this after I realized it was something serious.  But I guess I was in denial.  It was pouring down rain and nasty outside.  I remember about the time I got to New Bern, I realized I was having contractions.  My stomach would tighten up on top.  I remember walking into the doctor's office and telling the lady at the front desk that something was wrong.  She told me I could either wait there until the on-call doctor came in (could be an hour) or go to the ER.  I decided to stay there.

My first email to 2 coworkers that day:  7:21 AM "I'm going to be late this morning.  Running to doctor."

Second email to the same coworkers:  8:10 AM "Hey - I'm at the doctors office but won't be able to see on call dr for another hour.  I'm going to sit and wait.  Not feeling good this morning and not sure what's going on.  And I'm wearing jeans and tennis shoes to work today!!  :)"

The receptionist called me back up and asked how many weeks I was.  When I told her 28 weeks, she just stared at me.  That scared me.  I told her I thought I was having contractions and she told me to write them down and she would go get someone.  I realized then that they were about 5 minutes apart. 

She came back out and said the midwife was there and could see me now if I wanted to.  Of course I ran back there and thank God, the midwife was a friend of ours.  She was a sight for sore eyes.  I felt so relieved to see Mandy.  All of the nurses back there were scurrying around me and taking care of me.  Mandy checked my and I was 90% effaced and dilated 1-2 centimeters.  She then gave me the look and said it was time to go to the hospital because I was in labor.  I burst into tears!  Mandy and the nurses hugged me, told me to get dressed, and then I could call Trent, my mom, and Anita. 

Next email to coworkers:  8:42 AM "Going to hospital.  Will update soon."

I was so scared!  Mandy offered to drive me to the ER thank God.  She was a saviour that day.  I remember getting to the hospital, registering in a wheelchair, and being taken back.  I don't remember much after that except all of a sudden being in a room, on a hospital bed, with IVs started, the doctor coming in to check me, etc.  I told them I WAS delivering at Duke so they had to get me there ASAP.  I remember a nurse coming in to check on me who was best friends with Mandy.  Mandy had told her to make sure I was ok.  How sweet!

Next email to my coworker:  11:34 AM "Still hooked up.  Contracting.  May go to Duke today."

The next thing I remember was telling Trent things to pack at home and being loaded onto the ambulance.  They wanted to fly me on the helicopter, but the weather was extremely bad, so that wasn't an option.  So I got to ride alone on the back of an ambulance with a complete stranger.  No fun. 

I remember the EMT that rode back there with me was a man from Greenville.  I had to tell him every contraction I had so he could track them to let Duke know.  They were getting closer together - like every 2-3 minutes apart by the time we got to Kinston.  It was so uncomfortable on that gurney laying still for 2 hours.  I remember asking the guy if he had ever delivered a baby before and he said no.  I thought, great!  I hope today is not the day! 

He was not familiar with the road from New Bern to Durham so he couldn't tell me where we were.  I kept having to try to see billboards or things out the window to tell where we were.  I remember feeling a relief when I realized we were on 40 near Raleigh.  Every stoplight we came to they turned the sirens on.  It was crazy!

Last email:  1:25 PM "In Goldsboro on ambulance on way to Duke."

After that, I remember getting to Duke and being unloaded in some dungeon type place, riding the elevator to Labor and Delivery, and I remember Beth and one of my sisters were there.  I remember my back and hips hurt SO bad and I couldn't even get myself off the gurney onto the bed.  They had to lift me.  After that, it's pretty much a blur.  That magnesium sulfate they had me on was rough.  They turned it up as high as they could to stop the contractions.  I remember being sick, extremely HOT, and thirsty.   All I wanted was popsicles (I was on a liquid diet).  The rest of my family came up that night but I don't remember.  It seemed like 10 days in one.  I remember them saying I had to keep Claire put or she might not make it.  My goal that night from the doctors was to get to 10 am the next day so I could get the second steroid shot for Claire's lungs (I had received the 1st shot that morning at 10 am in New Bern at the hospital).  If I could make it to 10 am the next day and get the 2nd shot, Claire stood a much better chance. 

It's funny how the weather the past few days have been rainy just like last year this time (just not as much).  It's crazy how the whole week has been thrown off for me.  I felt like yesterday was the day I went into labor a year ago since it was on a Wednesday.  So my days have been off. 

It's hard to believe that today a year ago was the start of such a wild ride.  But I wouldn't trade it for anything else, because the prize has been so worth every single second. 

The Scott Family

Wednesday, September 28, 2011

One year ago September 28th

One year ago today, I just felt like something wasn't right with Claire.  Occasionally, I would listen to Claire's heartbeat with an old fetal Doppler machine that we had at work.  I kept it in my desk drawer to use when I felt the need to listen to that sweet heartbeat.  Especially after we learned of her heart defect. 

I basically rushed into my office early that morning, shut my door, flung open the drawer, and got the Doppler thing out and started searching for Claire's heartbeat.  I found it, very, very low in my belly.  That was a relief to hear it. I would count it to make sure it was within normal range and it was.  But I still just felt like something was off.  Claire was a mover and a kicker.  But that day, she was not.  She was very still.

One advantage of working at a doctor's office that has an ultrasound machine at it, is that I could call and see if they could do an ultrasound to check her out and ease my fears.  I didn't plan to take advantage of this bonus, but on this day, I had to.  I was just so worried for some reason.  I talked to a friend at work and she talked to the ultrasound tech.  They had just had a patient cancel, so she had just about 10 minutes to check me out.  So I ran over and gladly got ready for the ultrasound.

Granted, the ultrasound machine here at work is not supposed to be for babies.  It's more for adults who are having problems.  So the pictures are not the greatest.  But I could see Claire's heart beating, see her moving around, etc.  I could see she was alive. 

I remember the ultrasound tech pulling the screen so I couldn't see it and she had a worried look on her face.  Even though she doesn't do scans of babies, she knew something looked off.  She already knew about Claire's heart condition, but didn't know about the liver cyst.  She asked me if the OB/GYNs had told me what was going on and I explained she had a cyst on her liver.  A look of relief came over the techs face.  She was worried it was something I didn't know about and was new and that she would have to break the news to me.  She did comment on how big the liver cyst was.  I didn't know at the time just how large it had become. 

So the tech printed off a few pictures for me and I felt much better knowing Claire was still alive and looked ok.  I guess I really should have called the OB/GYN that day and gotten then to scan me.  I should have listened to myself.  But I didn't want to be that over reactive first time mom who called for every little thing.  I should have been her though.  Maybe they could have seen that something didn't look quite right or that Claire was in distress.  Or that I had way too much amniotic fluid.  Or that the cyst had grown to be huge. 

Little did I know that in just 24 hours, I would be in pre term labor, on the back of an ambulance in the pouring down rain, on the way to Duke with contractions every 3-5 minutes apart. 

On another note, we lost our friend Fuzz last night.  It was one of the saddest things I have ever had to go through.  But we were so lucky that a friend of ours who is a vet came to our house and was able to put Fuzz to sleep on our front porch as the sun set.  He was happy and content.  We miss him terribly.  Life is just not the same without him.  But we know he is now healed and cancer free!  And all dogs go to Heaven. 

Fuzz 9-27-11

The Scott Family

Tuesday, September 27, 2011

I guess I didn't knock hard enough

Twice this week, the topic of conversation was that Claire was lucky she had not been sick yet.  Each time this subject was brought up, I found the closest piece of wood and knocked on it (yes, I am very superstitious).  Well, either I didn't knock hard enough or it was fake wood.  Claire woke us all up this morning at 2 am because she couldn't breathe.  Her little nose was full of clear snot!  :(

I knew the only way to remedy this problem at 2 am was to pull out the one thing Claire despises.  I really think she was traumatized with it in the NICU because she would act the same way then when I used it as she did last night.  I warned Trent before I went upstairs to be prepared for an all out, fall out screaming match.  And that, it was. 

What, you ask, might be this huge, scary, terrifying, horrifying thing? 

Cue scary music......................dum, dum, dummmmmmmmm...............

Yes, you guessed it.  The horrifying bulb syringe!

Claire fought me tooth and nail trying to clean her nose out.  And after the fight, she just smiled and laughed through the tears.  I know she felt better because she could now breathe!

This event of course woke her slam up, so she didn't end up going back to sleep until around 4 am.  By this time Trent and Fuzz were both wide awake watching tv.  I got back in bed and then at 4:30 am, Claire cried out in her sleep.  That's when Trent decided he was up for the day and he left to go get us breakfast!

So I have no idea what to do for a runny nose.  It's clear, so that's a good sign.  But the poor girl can't sleep at night with her nose clogged up.  Waiting for the nurse/doctor to call me back with advice this morning.   I've already got some good feedback on Facebook about not giving decongestants but using humidifiers and plug-ins. 

On another note, I am so extremely sad to say that I think we will be having to let go of our 4 legged baby very soon, if not today.  His cancer returned a few weeks ago with avengance and has basically taken over his body.  Our dog, Fuzz, is a miniature rat terrier so he is small weighing about 18 lbs.  I bet the tumor that he has now is the size of a cantaloupe on his left shoulder.  It's throwing him off balance it's so big.  Five years ago, Fuzz was diagnosed with Mast Cell Tumor which is a canine cancer.  He had the tumor removed, his lymph node removed on his left shoulder, and had several weeks of radiation on his leg and shoulder.  He was almost 6 years old then.  He will be 11 years old October 9th.  So he's lived a lot longer than the veterinarians thought he would after the cancer and radiation.  But it seems to have really taken over this time and with his age, there's nothing we could do.  It had spread too fast. 

We have been keeping him comfortable with pain meds and prednisone, but yesterday the tumor has gotten so big, it has started tearing the old scar open on his shoulder.  It's so sad.  He can't live like that.  He eats and drinks fine, but he is scared.  There is nothing we can do anymore to fix it.  So we are faced with a very tough decision.  One I prayed I would never have to make for him.  But it seems we will.  Soon. 

Fuzz has been the best dog anyone could ask for.  He's had a wonderful life.  Trent gave him to me as my Christmas present in November of 2000.  He was so small, he fit in Trent's coat pocket!  Fuzz has been through a  lot with our family - from graduations, marriage, building our home, and now Claire.  I am so glad he and Claire learned to love each other.  He has been so good to her from the night we brought Claire home from Duke.  He lets her pull his ears, hit is head, pull his whiskers, anything she wants to do.  We take Fuzz to "day care" every day.  He goes to Grandma Neat Neat's house and has every day since we got him.  He has never stayed at our house alone by himself, ever.  He's like me and doesn't like to be alone.  So he hangs out with her 2 dogs during the day and then comes home at night.  He still has the same stuffed toy that he had as a small puppy and sleeps with it every night in our bed. 

So, it is a sad day.  He is part of our family. 

2006 - Fuzz starting his radiation

2006 - Radation on left leg and shoulder

Where they removed lymphnode in 2006 and where tumor has returned now.

2006 - recovering from radiation

2011 - Claire and her buddy

2011 - 2 peas in a pod

2011 - always by Claire's side

This video is from June 10, 2011.  It was really the first time Claire laughed so hard at Fuzz!  I love this video!!!

Please pray for him and us.

The Scott Family

Monday, September 26, 2011

One year ago September 25-27

One year ago this past weekend, this was me:

About 27 1/2 weeks pregnant (or just over 6 months).  Just at the start of my 3rd trimester.  Claire was supposed to be between the size of an eggplant and a winter squash.  Before this point in my pregnancy, I had only gained 15 pounds.  This weekend, my legs and feet became very swollen.  I became very uncomfortable.  My back hurt bad on the right side under my shoulder blade.  I couldn't walk around a consignment sale without sitting down every 10 minutes.  I was miserable.  This picture was taken on Saturday, Sept. 25th.  On Sunday, Trent and I helped out with a farm tour and I registered people.  I had about 3 strangers ask me when I was due.  When I told them December 22nd, they loudly exclaimed - "Oh!  You look like you are due any day now!"  I was appalled that someone would tell a pregnant lady who JUST told you she had 3 more months to go, that she basically looked huge.  I could hardly walk after that farm tour.  Little did I know these strangers were right - Claire was coming 10 days.   

Monday, I went to the OB/GYN to get my RhoGham shot since my blood type is Rh Negative and Trent's is positive.  It was supposed to prevent the Rh Incompatibility that Claire experienced (read more about that here).  Which obviously the shot didn't work for us for some reason (and no - I have not had any abortions or miscarriages).  When they weighed me before giving me the RhoGham shot, I had gained 10 pounds over the past week.  Something didn't seem right since my weight gain had been so good, so they made me stay to see the doctor.  She checked me out and said it was just probably a normal part of the pregnancy since my legs and feet were extremely swollen and that happens to a lot of women.  Just to go and keep my legs and feet elevated.  So that's what I did on that Monday, Sept. 27th. 

One year later, we are blessed with this little girl every day!

"I like my pink and camouflage boots!"

"Go Wolfpack!"

I put Claire in the NC State outfit this morning.  And when I got to my parents' house to drop her off, my mom pointed out that we matched.  I had dressed myself in a red shirt and black pants today!  My mom says it part of parenting and we start matching without even knowing it!  Ha! Ha!

The Scott Family

Friday, September 23, 2011

Happy 9 months corrected age birthday Claire!

Well, it was really yesterday, but I forgot.  Claire's adjusted or corrected age is 9 months and 1 day today.  So in "reality" she should be on the developmental track of a 9 month old instead of an almost 1 year old.  I think she's pretty on track!  We will find out in a few weeks at our next Duke appointment what the doctors think.

Granny bought Claire a pumpkin Halloween outfit just for fun and they tried it on this week!  Gotta find her some black pants to wear with it now.

Have a great weekend!

The Scott Family

Thursday, September 22, 2011

September 22nd

Get ready for the next few weeks of posts about "a year ago today...."  For some reason, anniversaries of events or important things have always meant a lot to me.  As the days get closer to when I went into labor early with Claire last year leading up to her birth, I will probably be posting a lot on what was happening this time a year ago.

But what was happening 11 years ago on September 22nd?  Oh, September 22nd.  A day that still haunts me.  Something terrible happened for our family.  Trent's dad was killed in an automobile accident.  The only word that comes to mind - tragic. 

This post is not meant to be about the tragedy that happened.  But it's supposed to be about what HE would think of Claire.  I often wonder about what he would think of this Scott girl.

Trent's dad would be "Granddaddy" to Claire.  I am 110% sure he would love her to no end and spoil her with anything she could want.  He and Trent would probably be in a competition to see who could spoil Claire the most!  Especially with John Deere items. 

I can see him right now sitting back in his recliner with his squinted eyes and a big grin on his face as he watches Claire crawl across the floor.  Claire seems to have a "fear" of men with beards.  I think it's a phase she is going through.  They just look different.   I am pretty sure that if she knew her Granddaddy, she would have no fear of beards!   She would have learned that a big snugly bear was hiding behind that big fuzzy beard of his.

NASCAR tickets would already be purchased for her very first race as well as tickets to a NCSU basketball game.  Maybe even Duke basketball tickets as I believe he would be converted like we have been.  I am sure of this.

You know those bumper stickers that say "Ask me about my grandchildren"?  Well, I don't know if he'd go quite as far as to have one on his truck.  But I am pretty sure he would live, eat, and breathe that phrase, because Granddaddy LOVED to talk.  To any one at any time about any thing.  People would be getting an earful at the store, at the firehouse, or anywhere really about what Claire was doing today, the funny things she was saying, or just how smart she is.  He would already have her college life and career planned out in his head.  Granddaddy would have big dreams for this baby girl. 

I am also sure Granddaddy would already have his eye on a pink BB gun that he planned to buy Claire one day so she could go hunting with him.  And a Ducks Unlimited rocking chair, tricycle, backpack............... you name it, she would have it from DU. 

And amongst all of the paperwork, trash, business cards, and dust on the dash of his truck, I bet you might be able to find a picture or two of Claire.  Just so he could show them off when he wanted to. 

And hats.  Oh the hats he would be collecting for this child.  I think he had a billion of his own and passed that trait down to Trent.  Even if she never wore them, he would give her some hats. 

It's fun to think about the things that Claire and Granddaddy would do together if he was still here.  But it's extremely sad at the same time as I know how much both of them will miss out on each other's company and getting to know one another.  It's hard to think of all the things he has missed and things he will miss.  But most of all, I am sad for Claire that she will not know him physically on this Earth, but she will know him from stories we tell.  But I am also110% sure he is watching from Heaven and knows Claire and everything about her.  Who knows - he is probably up in Heaven right now propped up on the counter at the corner store, with a Pepsi in one hand and a honey bun in the other, telling all of the other angels about what his Claire Bear is doing today.  And I am pretty sure he'd think that she was named Claire "Bear" after his nickname and you couldn't tell him any differently. 

The Scott Family

Wednesday, September 21, 2011

Duke ICN 3rd Annual BBQ for Babies

As all of you remember, Claire was a resident of Duke's ICN for 99 days after she was born.  This place was "home" for her and us for 3 1/2 months.  The neonatologists and NICU nurses cared for Claire like we would and saved her life.  We learned to trust them with our precious child when we had to leave at night.  They made us feel comfortable when we sat there hour after hour each and every day.  These people work miracles for lots and lots of babies.  That's why we want to help them raise money to benefit families of babies who are in Duke ICN.

This money goes towards pizza nights that are held each Thursday for parents and families of ICN babies.  This is where I met Eliza's parents and Elizabeth's parents.  It's so nice because you don't have to go far (just in the lobby) from your child, you get free food and don't have to eat expensive cafeteria food, and you get to meet and socialize with other people going through some of the same things you are.  The money goes also towards the little gifts the babies get on holidays.  Claire got her 1st Halloween goodies, a Christmas stocking full of toys for her, and arts and crafts the nurses did with the babies for New Years Eve.  This money goes towards making life in the ICN just a little easier for families.  And that means a lot.  These are just a few examples of what the money raised will go to. 

So what is this event you ask?  Well it is a BBQ dinner held at Teer Family Farm in Chapel Hill on October 1st from 4-7 pm.  There will be great food, amazing raffle prizes, music, and exciting children's activities like face painting and bouncy houses.  BBQ plate tickets are $10 each if you want to go out and eat.  Or even if you cannot go and eat your plate, consider buying and donating a ticket or 2 for some of the current ICN families so they can get out of the NICU for a few hours and go enjoy some good food.  This will give them the opportunity to see how well all of these ICN graduates are doing and it will give them hope!  If you can't make it to the dinner, you can support Duke ICN by purchasing raffle tickets.   Here's how the raffle tickets work:

Click the link below to see our awesome prize baskets, including jewelry, Disney World passes, weekend getaways, sporting event tickets/merchandise (Duke, UNC, ECU, & NC State), autographed Nicholas Sparks books + movies, and MUCH MORE!  

Tickets are $1/each | $10 for 12 | $20 for 25

You do NOT have to be present to win.

Here's how it works
  • Look at the list here:
  • Contact me and tell me which basket(s) you want to enter and how many tickets you want for each basket
  • I only need your NAME + PHONE NUMBER (I will print the information on each ticket for you if you are not local)
  • Send me the money (checks made out to: DUKE ICN/FAB)
  • I'll put your tickets in the basket(s) you designate
It's that easy!  Please help us spread the word.  Anyone can contact me personally or the Family Advisory Board directly at

Link to the Duke website if you question the legitimacy of the fundraiser:

*copied the above info from Super Dude's mom*
So if you think you are interested in any BBQ tickets (I have those) or raffle tickets, please let me know!!!  Looks like some awesome prizes!!! 
The Scott Family

Tuesday, September 20, 2011

Videos and an update on Mason

Mason came through his heart surgery yesterday very well!  All I could do yesterday was think about Mason and his family just knowing the stress and worry they were going through every hour just sitting there waiting for the smallest update.  I prayed and prayed all day.  I remember at some points during all of Claire's situations thinking I couldn't pray enough or just didn't have the mind about me to pray.  But I remember knowing that so many others were praying for Claire and for us, that it was carrying us through.  When you just don't have the strength to pray for yourself, someone else already is praying for you.  That's a blessing!  Mason's mom uploaded a picture of him last night in recovery and he looks just like Claire did with the wires, tubes, stickers, tape, and monitors.  The next day or so is the hardest when they start waking up in pain and not knowing what is going on.  So please continue to pray for a speedy and easy recovery for Mason!  To follow Mason's blog and updates, go to

Ok, so here are some recent videos that I promised yesterday! 

Claire is not interested in birthday cake.  We will have to work on this one before her party!  She obviously did not get her taste for cake from her momma because I will go for birthday cake over anything else!  Although, I couldn't stand the taste of it while I was pregnant with Claire....

Here is just a cute video of Claire laughing and "talking".  She doesn't use a paci anymore, but likes to chew on the flat part like a teether.  Also you notice the snowmen in the background.  They have stayed there at my parent's house by her changing table because she loves to play with them so much.  So they are now there year-round!

Here she is in the early stages of crawling. She has no troubles now getting around very quickly!  She moves a lot easier and faster now than in this video. 

And this last video is from the birthday party for my sisters, brother, his girlfriend, and my dad this weekend.  The big dogs belong to my sisters.  Claire LOVES them!  It's hard to tell in the video, but she was laughing so hard!!!  Like a huge belly laugh!  Her face was beet red as she was laughing so hard that she was almost losing her breath.  You know, like when you laugh so hard it hurts and you have to rest afterwards?!?  That was it!  We were so enthralled with Claire and how much she was laughing, we didn't think about videoing it until she was getting tired, so you missed the best part.  But you get the point! 

The Scott Family

Monday, September 19, 2011

A jam packed weekend

First - please keep Mason in your prayers today and the following days.  He is one of Claire's heart buddies and has TOF like Claire.  He is having his open heart surgery this morning to repair his TOF.  Please pray for Mason, the doctors and nurses, his family, Mason's recovery, and that everything gets fixed in his heart like it's supposed to be!  You can follow Mason's blog at:

This weekend was jam packed full of things!  We attended 2 birthday parties on Saturday and church on Sunday, and even ate at Pizza Hut!  Claire did great at everything!  She had fun at the parties and even stayed in the nursery at church without me.  She seems to be getting a little better at stranger anxiety.  I am hoping it gets even better before her birthday party!  *sigh* Our little girl is growing up.... 

There are a lot of pictures, so I will just get started with those and describe them in the captions.

Someone gave Claire these heart pajamas and they were just too cute!!!!!!!


This is what Claire thought of her first attempt at birthday cake.  Acutally, she was too interested in the Baby Einstein video that was on. 

Uncle Phillip and Claire treating Miller like a horse!

Claire and Aunt Brandy

Anna showing Claire how to play with this toy at Anna's 2nd birthday party.

Claire, Anna, and Connor

Claire playing with the "See And Say" while Anna opens her gifts.

Then she found Connor's combine.

And then the balloons!

And decided she loves vanilla ice cream!

My new big girl car seat thanks to Mrs. Tammy!

My shirt says I am "unBEETable" with a beet on it!

Aunt Sarah bought this outfit for me before I was even in my momma's belly!

Claire loves to play the piano.

Super cute with her new bow this morning!

Finger painting - helping to make decorations for her 1st birthday party

I love painting!
We have also tried to take lots of videos lately of Claire.  She's doing something new almost every day now, it's hard to keep up with her!  I will post the videos another day so you will have something to laugh at!  :)

The Scott Family

Thursday, September 15, 2011

Claire had a blast at B.L.A.S.T!

My parents' church has a Wednesday night supper each week and they call it B.L.A.S.T (Believers Learning And Serving Together).  My mom invited us to go eat with her and give some people a chance to see Claire that have been praying so diligently for her for so long.  I have to admit I as a little nervous after what happened at the family night supper at our church not too long ago with the meltdown. 

But I am proud to say that Claire did AWESOME!  She didn't fuss at all or get scared!  It was a big group of adults and kids running around.  It was loud and busy.  But she acted like it didn't bother her.  Strangers even came up and spoke to her and she was ok.  She got still and quiet and watched them closely, but she didn't cry!  YAY!  They even sang the Happy Birthday song to someone there who was celebrating a birthday.  I was anxious b/c at my birthday party, she lost it when they sang.  Her eyes got really big and she just stared at me while the sang last night, but no tears! 

She also got to visit and meet Jake - an ex-preemie who is now 3 years old!  Jake and his family walked in the March of Dimes on Team Claire Rose and fixed us many delicious meals after Claire came home.  We were glad to sit and visit while we ate spaghetti. 

So we all had a blast!

Claire and Granny

Claire and Jake

Mmmmmm...yummy spaghetti!

The Scott Family

PS - Claire is on the go now with crawling!  :)

Wednesday, September 14, 2011

Winner, Winner! Chicken Dinner!

Not really a chicken dinner winner, but I did WIN something very special!  I am so excited!  Yesterday, the CD "Every Falling Tear" by Matt Hammitt of Sanctus Real came out.  It is a special CD that he wrote most of the songs about his son who was born about a year ago with a severe congenital heart defect (CHD).  I had never heard of the Christian band, Sanctus Real, until a month or so after Claire was born.  Trent's cousin, Sarah, sent me an email one night about a story that was on the news about them.  I read it and just cried.  I believe this was actually the first time I realized that we were not the only ones out there with a child with a CHD. 

I read the news story, watched the video clip of their family, and then listened to the song he had recently written called "All Of Me."  He had written this song about his feelings for his son, Bowen, who he wasn't sure how long he would live and how to love someone you knew you may lose very soon.  The words of the song hit home so closely.  I have it on my computer and listen to it every now and then and just bawl.  It brings back so many memories.  It is the first song that will be played on Claire's 1st birthday video. 

So with the upcoming release of the album, lots of the heart mom blogs I follow were offering a giveaway of the CD.  Of course, I entered everywhere I could knowing that I ususally do not win contests.  But I REALLY wanted that CD!  This morning, out of the blue, I received an email from Tiffanie's blog that I WON THE CD along with 2 other contestants!!!!  I am so freaking excited!  Here's a link to Tiffanie's blog (Claire is on there!!):

And to read more about Bowen's heart, go to  You can download "All Of Me" from iTunes or listen to it here:

The Scott Family

Tuesday, September 13, 2011

Some fun things!

This post will just be a melee of fun things that have happened the past few days.  I told you about Eliza's party this weekend and today, her family has posted their video of Eliza's first year to their blog!  Check it out as it is awesome!  The link is  Claire even makes a few appearances!  And in one video you can hear the front desk call back to see if the Scott Family can come back.  It reminded me of how we basically had to ask for permission to even see our daughter every day.  Their videos brought back a lot of memories of so many days in the NICU with the wires, the sounds, the day-to-day stuff that you become accustomed to so quickly as a normal way of life that is actually one of the furthest things from normal.  We, unfortunately, didn't have the forethought to make any videos while there.  So enjoy Eliza's photos and video and see how much she has changed this past year!  Aunt Amanda has been working really hard on getting Claire's first year video made in time for her birthday party.  I saw it last night and I think I could watch it repeatedly for a whole day.

A few weeks ago, a new Dunkin Donuts place opened up in the gas station near my parent's house.  I haven't stopped in there because I am a sucker for donuts.  But yesterday, Trent went and bought me a plain glazed donut (my fav) and then bought Claire 3 donut holes - or "Munchkins" as Dunkin Donuts calls them.  Trent said "a Munchkin for my munchkin!"  So sweet!  I gave Claire a bite of her first donut and she liked it.  She took a few big bites!  Then I ate the rest!  :)  Sorry for the blurry picture - it's from my cell phone.

My first Munchkin from Dunkin Donuts!  Yummy!

Fuzz hangs very close to Claire.  He even let her bite his ear this past weekend!  Poor Fuzz is not doing well at all and we will end up taking him back to the animal hospital sometime this week to check out his shoulder.  Say some prayers for him!  He is our 4 legged baby and is almost 11 years old.  He himself has had a tough go as he battled cancer with radiation and surgery at 6 years old, and now suffers from ruptured discs in his back and can only walk on 3 legs. 

best buddies

Claire has started sitting up in her crib when she wakes up now.  We have a video monitor so we can watch her all the time.  She has always seemed to know exactly where the camera thing is and looks into it like she's looking at us.  It's weird.  Now that she sits up, she can get even closer to the camera!  I tried to get a picture of her this morning and it turned out weird.  She was yawning!  But you get the point!  It's hilarious!

"look at me!!!!"

Among loving to watch Elmo, Barney, and Baby Einstein, Claire also loves to watch the news/weather and Wheel of Fortune.  Yes, she loves the Wheel!  I think it's the colors that spin across the screen.  Her Great Granny Rose would be proud that she loves the game shows like she did!  And Wheel is also one of her Great Grampa's favorite shows now!  Here's a video of her calling out her letters!  ;)

And can we get a drum roll please????......................................

Claire is starting to CRAWL!!!  As of yesterday, this little girl is figuring it out finally!  She only goes after things she really wants like the remote, the computer, cell phones, cups, the dog, or the dog's ball.  She is not interested in performing for her ordinary toys.  I think I took about 127 videos with my camera last night and this morning trying to capture it for you.  Here is the best one so far!

So, those are the happenings in our lives right now.  We have lots of birthday parties to go to this weekend including a big one for Aunt Amanda, Aunt Brandy, Aunt Julie, Uncle Phillip, and Big Daddy and then another party for Anna's birthday!  Whew!

The Scott Family

Monday, September 12, 2011

Eliza's 1st Birthday Party

This weekend, we were fortunate enough to make it to Eliza's 1st birthday party!  We were so excited and have been looking forward to it for a long time!  The first birthday is a milestone for any child, but especially for babies like Claire and Eliza who have been through SO much their first year.  You almost feel like you have been running a constant marathon for an entire year and you have finally reached the first rest stop! 

Eliza's party was decorated so pretty!  Big lollipops outside leading up to her house.  And candy everywhere!  From the backyard to inside the house!  Eliza had on the cutest onesie with her name and a big "1" on it!  Heather said we had missed her wearing the matching headband and tutu.  Eliza even had her own hot pink princess chair and step stool with her name carved out on it.  Eliza's parents had lots of pictures around of the last year, a game where you had to see who knew Eliza the best, some of Eliza's preemie clothes, and even a doll that was made to Eliza's birth specifications so you could remember just how small she really was at birth (although the doll had a lot more "meat" on it's bones that Eliza actually did!). 

We had a great time visiting and catching up quickly.  We tried getting some good pictures but Claire would cry, and in turn, make Eliza cry.  Then they would get straight and Claire would yell out in her outside voice having fun, and scare Eliza.  So we didn't want to stick around too long and make Eliza upset!  Claire needed a nap badly (and fell asleep before we even got out of Eliza's neighborhood), so we left before we got to see the video they made.  We did get some of the good sweets they offered!  Yummy!  They had a photographer there taking pictures, so I hope she got some really good ones of the girls!  I can't wait to see them! 

We are so proud of Eliza and all that she has become.  Although it's a very happy time for her, it's also a sad time as she does not have her sister Charlotte and brother Oliver to celebrate their birthday with.  But I am sure they were at the party right along side of Eliza the whole time!  Happy 1st birthday Eliza from Claire and family!!

"Hey Claire!  Welcome to my party!"


Claire really liked Eliza's balloons!

We wish Eliza many, many more happy birthdays!

The Scott Family

Friday, September 9, 2011

Birthday Invitations and Photography Sessions

First things first - please say lots of prayers today for Baby Scarlet who desperately needs a heart transplant immediately.  She is about 3 months old and has HLHS.  We do not know her, but we know how many people that didn't know us prayed for Claire.  And prayers work.  So please pray for a miracle for Scarlet.  Here is her blog:

Ok, now on to the birthday party invitations.  Someone special will be ONE in less than a month!  Where in the world has the time gone??  Geez!  We sent out the Evites yesterday via email to everyone we could think of who might want to be invited or has told us they wanted to be invited AND that we had their email address.  If you did not get one and want to come, PLEASE either email me, Facebook me, or comment below with your email address.  If you don't have email, let me know and I will give you the information!

The big day will be October 8th!  And remember from a previous post ( that Erin McCoy so graciously offered to come all the way from Florida to take Claire's Littlest Heroes pictures at her party?!?  Well, she is still planning to be there and is still offering her "Claire Special" to all of Claire's friends.  Erin is planning to come up to NC a few days before the party to offer sessions to all of you at highly discounted prices.  Here is the information from the previous post (and you can click on her logo to go directly to her website to check out her awesome talent!):

Here are a few words from Erin:

I have two rules about photography:

1. You should love your photos. Who cares what the photographer wants?! These are YOUR photos! I want to work with you to insure you are always relaxed & excited about the photos we are creating together.
2. You should love your photographer. Photography isn't just about the final product, it's also about the process!! I want you to have as much fun creating these photos as I do, so I always strive to make each photo shoot fun, friendly, and full of energy. My goal is to make your unique character & charisma shine through every shoot. 

Communication is extremely important to me, so please contact me if you want to chat or ask questions!! Call, email, write a letter - whatever!! I'll be coming up to visit for Claire's 1st Birthday and I'm looking forward to meeting the amazing people who love this incredible girl. 

Erin McCoy (Photography)
75500 Clyde Higginbotham Rd.
Yulee, FL 32097
(office) 904.849.7294

Not only has Erin offered to come all the way from Florida to document Claire's first birthday in October, she is planning to come up and stay for a few days with her parents.  While here, she is hoping that some of our friends and family might want their own photography session with Erin!  She is willing to basically do whatever kind of session you would like - family, maternity, newborn, engagement, whatever....  Her normal charge for these sessions are $250 - but for friends of Claire, she is offering to do your session at only $150!  That's a $100 discount!  PLUS any orders of your prints over $300, she is willing to offer at 10% discount!  SERIOUSLY PEOPLE!!!!  Please, please take advantage of this.  For all of those times you said you wanted family portraits done, now is the time!  Not only are you supporting Erin, you are supporting Claire and this great cause. 

Please take a moment and think about taking advantage of this great deal with an awesome photographer who is sacrificing lots of her time to do something very special for our family.  You can email her and she can answer any of your questions, set up a place and time to do your shoot, and on top of that, she's just really nice to talk to!  Erin is quick to get back with you so no waiting for days to book your session. 

Thanks in advance to showing support to Erin!!

The Scott Family

Thursday, September 8, 2011


Apparently, it is a necessary evil for your child to have to teeth.  I mean, apparently, I would not want Claire walking around with no teeth ever.  But this teething thing is tough!  Apparently, it is causing Claire not to sleep soundly at night.

Apparently, along with the teething, Claire and Fuzz (our miniature rat terrier) decided last night that we did not need to sleep between the hours of 2 am and 4 am. 

Apparently, Claire has decided that she can fall slam asleep in my arms while rocking her, but when I go to lay her down, she wakes right back up and sits upright in the crib ready to play.  Apparently, she is not getting the memo that it is night night time. 

Apparently, Fuzz isn't either as he has to wake up numerous times during the night.  It's not his fault as he is in a lot of pain, so I have to give more pain meds, take him out to use the bathroom, and try to help him get comfortable.  Apparently, I should run a night time doggy daycare on the side.

Apparently, Claire is learning that if she whines after she sits back up in the crib that I will come get her back out and rock her back to sleep.  And apparently it works.  The funny thing is that she does go back to sleep.  But apparently, even though I know she's in a deep dream-like sleep because she is smiling and making faces in her sleep, she will still wake right back up after 4 times of trying to put her back in the crib.

Apparently, even if I try to trick her by laying down in the twin bed in her room and let her play herself to sleep, that doesn't work either.  Apparently, she will just sit in silence making me think she is asleep and when I poke my head up off of the bed, she is sitting there looking over the bumper pad right at me! 

Apparently, since Fuzz is in pain and I feel sorry for him, he gets to come up to Claire's room with me and get on the twin bed.  Apparently, he is higher on the totem pole than me as he gets to lay up by the pillows and I get to curl up in a ball at the end of the bed like a dog. 

Apparently, after 3 tries of getting Claire back to sleep, I decided that she apparently knew I was in the room with her and wouldn't go to sleep.  So I went back down to our room with Fuzz, and watched her on the video monitor.  She sat in the corner of the crib and whined for what seemed like an eternity but was apparently only about 5 minutes until I couldn't stand her being upset anymore. 

Apparently, I figured she must still be hungry so I fixed yet another bottle. 

Apparently, I went back upstairs (with dog in tow), picked her up out of the crib, sat her down with the tough mom look and asked her what in the world was wrong.  Apparently she didn't like this approach as she started crying louder.  I gave her the bottle, but apparently, she was not still hungry as she pushed it away from her mouth with a pouty cry. 

Apparently, I have no tough love skills as I squeezed her tightly and apologized profusely to my 11 month old and continued to rock her as she smiled at me.  Apparently, she melts my heart even at 4 am. 

Apparently, after 2 hours of this, Claire finally decided it was time to go back to sleep and she slept until 7 am when I had to wake her up so I could go to work.  She rolled over with a huge smile with her 5 1/2 teeth showing.  Apparently, she didn't remember being up all night. 

Apparently, Claire has my number.

Apparently, I am feeling the mom guilt this morning.  I need some advice from other moms - especially heart moms - on how you don't feel soooo extremely guilty when you get frustrated at your child who has already been through so much in his/her life that you don't want them to ever feel scared or hurt or worried or anything bad ever again.  Even if it means they never sleep at night or eat real food because they gag or choke on anything other than baby food or chopped up spaghetti.  Or how you don't feel so guilty for getting frustrated because you want to go back to sleep because you have to go to work in the morning, but then you think about the heart moms who have lost their babies and don't have them anymore to be up at 2 am to 4 am with.  Is this something I am going to feel the rest of my life?  Apparently, I am not the enforcer in our house.  I always thought Trent would be, but now I am a little worried that I might be wrong about that too because, apparently, Claire has him wrapped around her finger.  Apparently, from my rambling, you can tell I had no sleep and am emotional today. 

Apparently, this is why the word "parent" is stuck smack dab in the middle of the word "apparently."  I guess as parents, we apparently don't know anything and have a lot to figure out, right? 

Apparently, from the picture below taken about 10 minutes after Claire woke up, Claire has no idea that she should be tired. 

On a side note, Claire would like to wish her BFF Eliza a happy 1st birthday today!!  And her Aunt Brandy a happy 25th birthday today!!!

The Scott Family