Monday, February 28, 2011

Sitting, waiting, and wishing...

Claire has been acting more and more like her self today.  She has been so alert and giving mommy and Aunt Manda lots of smiles and kisses.  She even decided to kick out a laugh while she was sleeping this afternoon.  It was so sweet. 

Not much has changed around here other then the news of possibly going home within the next few days.  They couldn't guarantee when and what day that would be, but we are being hopeful that we will be heading home tomorrow.  They doctors want to hold Claire for a few days to make sure that she is eating well and is gaining weight.  They also want to wean her back on the Lasix to possibly twice a day in hopes that she can tolerate the low dose.  They also want to make sure that her heart rhythm is close to normal before heading home and that the p wave stays regular.  These are all things that can happen over night, or possibly through Wednesday. 

Claire went down for an echocardiogram for a post-surgical check up.  The doctor has yet to view it, but from what we could see (and from what the sonographer could tell us) everything looked okay.  We were able to see where Claire's bovine patch was and that there was no blood flow through what use to be the hole between the ventricles.  The liver surgeon stopped by to check on Claire and said that everything seemed to look good.  The cysts are relatively bigger but not to be worried about them.  They are going to follow her every 4-5 weeks to continue to check on them, and hopefully they will not interfere with Claire's blood flow through the vena cava as in the past.  She is wanting Claire to fully recover before any liver surgery is planned...possibly several months away. 

Nurse Maire stopped by to visit her La princessa and said that she look "maaahvelous"!!  Nurse Maire was even able to get Claire to smile for her several times.  She is stopping back by tomorrow for another short visit and to slip several more laughs and smiles out of her. 

We are all so thankful for all of the prayers and blessings over the past week.  Things could have not gone any better.  As Grandma Neat-Neat put it, "The songs of a million angels do not compare to the joys that we feel."  We are so greatful that Claire has recovered from her surgery so quickly.  Please pray for a peaceful night as Mommy and Claire-Bear get some well needed sleep.


The Scott Family 

Sunday, February 27, 2011

One step closer to home

Claire has moved out to the floor today!  That is good news in that it means she is doing great.  The doctors took the pacing wires out of her heart today so the pacemaker can no longer be connected.  We moved her out of intensive care into a regular pediatric hospital room around lunch time today.  It's going to be a long night tonight as it's just going to be me and Claire.  The nurses here have 4 children/patients and all sit at a nurses station down the hall.  So it's a lot different than intensive care. 

They were going to leave Claire unhooked from any monitors but I kindly asked if she could at least wear the monitor maybe through the night.  So they hooked her back up.  It's a pain to have all of the wires, but I wanted to monitor her heart beat just a little longer. 

But she's done great and hopefully the stay in the regular room will be short and sweet.  I have a nice view out the front of the hospital!  Claire had a few visitors yesterday including Ricky and Pat, Susannah, and Candice and Jacob.  

I tried to upload pictures but they wouldn't upload!  Sorry!


The Scott Family

Saturday, February 26, 2011

Day 3 after surgery

We walked in this morning to Claire being wide awake and smiling!  It was a great sight.  It let me know that she was feeling much more like herself.  We noticed that her heart rate was beating over the pacemaker this morning, which was good.  So at rounds, the doctors decided to take the pacemaker off and see what happened.  She did well most of the day without it.  There were a few times when Claire was totally asleep (with her mouth wide open!) that her heart rate would drop a little and the p waves would not show up.  They did an EKG earlier today that looked good though.

They also took the nasal cannula off today and she did great with that.  The nurse took the bandage off of her incision.  It hurt my feelings to see it.  I know it hurt so bad.  But the incision site looks pretty good. 

Tonight the nurse said she was still having a few episodes with no p waves so they are going to do another EKG tonight.  I hope it turns out ok.  They had to give her some pain medicine tonight around 7 pm so that is making her really tired and restful which can drop her heart rate.  So I am hoping things get better over night. 

Thank you for all of the prayers for Claire.  We really need and appreciate all of them!!!! 


The Scott Family

no cannula or bandage!

being so good for my EKG

Friday, February 25, 2011

JET (Junctional Ectopic Tachycardia)

Claire has had a pretty good day.  She is acting more like herself tonight kicking and wide-eyed.  She's trying to smile, but hasn't done a big one yet.  She's still not sure if she likes me or not for putting her though this surgery.  But she's getting there!

Not much has changed since the last post.  We are still in PCICU so they can monitor the pacemaker and Claire's heart rate.  I got to hold her this afternoon and we took a nap together.  My mom was so kind to take pictures of us while we were sound asleep.  She said we both had our mouths wide open!  We are exhausted!

Carissa so kindly sent me a message today explaining the temporary pacing with the pacemaker.  I tried Googling JET but all I got was medical journals.  So I am copying and pasting her explanation here so everyone else can better understand.  What would I do without her?!?! 

It is very common after TET repairs, especially for an arrhythmia called JET which is Junctional Ectopic Tachycardia, it is a fast rhythm that originates from the wrong place. To fix it, they pace the heart at a faster rhythm than the heart is trying to beat at. It kind of resets the heart so that the beats can come from the right place. The p wave is the little tiny hump, before the bigger qrs spike on the ekg. The p wave is the signal that the beat originated from the proper place. Even if there isn't a p wave the heart is often smart enough to generate the big contraction of the qrs beat, but it isn't as effective. So by pacing, you add in the "atrial kick" or p wave which helps the heart work better. Junctional rhythm's are super common in tet repairs, because of where they have to do the cutting. It is very uncommon for them to need permanent pacemakers. They wouldn't even start to go down that road until she was 10-14 days out.

Hope that makes sense!  It did to me!


The Scott Family

Update from the PCICU

Sorry for no update yesterday.  It was a long, but good day, and I just didn't get a chance to post last night when we got to Julie's.  So I brought the laptop to Claire's room today to update. 

She has been doing really well.  Yesterday they removed one IV, the catheter, and the chest drainage tube.  Today they removed the neck IV and the oxygen things on her head.  She is also on a nasal cannula instead of the breathing tube.  Claire looks less swollen today and doensn't have as much pain.  I was able to hold her a few hours yesterday and Granny is holding her now. 

They have taken Claire off of most of her medicines except oxycodine and tylenol.  She's eating from the bottle some.  They hooked Claire up to the temporary pacemaker on Wednesday night and she has been on it since.  We are somewhat concerned about that but the doctors and nurses say it's normal since they cut right through her electrical system when doing the surgery and her heart is trying to pick back up a normal rhythm. 

So the pacemaker is keeing Claire in the PCICU for another day today.  We are trying to adjust to understanding all of the new cardiology termininology at rounds.  The cardiologists all say that Claire's surgery was awesome since they could save the valve and not cut it open. 

It's not as sterile in the PCICU as it was in the ICN.  So I have been wiping everything down with Cavi Wipes and trying to sterilize as much as possible!  It's just a habit and a must for us!

Claire has had several visitors over the past day and a half including our preacher, Julie and James' preacher, nurse Marie, nurse Gina, nurse Susannah, Julie, Amanda, Colby, Remi's mom and dad, nurse Tammy (our favorite L&D nurse), and maybe a few more I am forgetting.  We have seen lots of nurses and doctors (including our fav Dr. Rachel) in the hallways, so it feels like a family reunion or something! 

Please continue to pray for Claire's healing and that her heart regulates itself soon so she can come off of the pacemaker.  I will try to do a better job of updating the blog.  I am just so tired when I get to Julie's at night, I forget sometimes!  And I don't usually bring the computer up when we come to see Claire since that is my time to spend with her. But I did it today anyways! 


The Scott Family

Wednesday, February 23, 2011

How Now Brown Cow/Surgery Update

Wow - today has been a long day, but a good one.  A very long anticipated day.  We arrived at Duke around 6:45 am to get Claire checked in for her surgery.  She had a good night last night and was sleeping peacefully until I had to undress her.   But she soon settled back down.  We had several prayers with preachers and the anesthesiologists came and carried Claire away. 

Nurse Marie, Granny, and Neat Neat sat in the waiting room with us and I was able to update the blog once with Marie's computer.  The surgery started around 10 am.  Trent and I were distracted for about an hour after that talking with a research nurse practitioner.  During Claire's surgery, part of her thymus had to be removed to get to her heart (this is normal in heart surgeries for babies).  They asked us if they could use Claire's removed thymus for research to help find better ways to do thymus transplants in babies with complete Di George syndrome.  These babies have absolutely no immune system so these transplants are very important since the thymus creates the immune system.  So we agreed to let them do research on the removed portion of her thymus. Otherwise they would just throw it away.  It hit home since the doctors had originally thought Claire could have the Di George Syndrome. So hopefully she helped another baby or two today.

Trent and I went down for lunch in the cafeteria around noon and even visited the gift shop.   Daddy wanted to get him some Duke bumper stickers for his truck - I guess this State family is becoming a State and Duke family!  So we got back to the waiting room thinking Granny, Neat Neat, and Marie would take their lunch turn and they said "did you get the message?"  We had no idea what they were talking about.  But the NP had come out around 12:45 and said they were done with surgery and that at 1:08 that she was off the bypass machine!  So we all headed down to the PCICU to wait for the surgeon's update and to see Claire.  While Neat Neat was out in the hall making phone calls, she saw Claire being transported in! 

The surgeon came in and said Claire did great!  He also said he wished all TOF repairs were as good as Claire's.  That was great news!  The even better news was that he did not have to cut open the valve portion of her pulmonary artery.  This is the part that has the "curtains" in it.  They did shave off some of the curtains to open it up that way.  But they didn't have to split it open and patch it.  This is really good meaning that it greatly diminishes the probability of another surgery in her late teens early twenties.  It doesn't completely remove that risk, but it brings it way, way down!  Yay!  The surgeon also had to create a PFO in Claire's heart which sounded like a little passage way to relieve pressure in her heart.  This should close up eventually if she does not use it.  Everyone is born with one and they close up at birth.  But the surgeon didn't want her heart to put pressure on her liver, so he made this PFO.  I haven't had time to Google it yet to see exactly what it is. 

We are now trying to learn all the new medical terminology.  It's much different than the ICN terms.  We are totally lost.  But we will try!

Claire started waking up around 6 pm. She had several visitors including some of her cardiologists, the surgeon, a nurse who introduced herself as one of Super Dude's nurses, and Amanda and Colby.  With Claire waking up, you can see the confusion and pain in her little face.  So after a long day, I am sad to say that this momma just couldn't handle seeing her like that for long.  I have held it together quite well for myself today.  But seeing her struggle was too much.  So we left her in the hands of the good PCICU nurses to get her extubated hopefully tonight.  They plan to remove her dressing tomorrow so we will get to see that.  The drainage tube will stay in for a while and so will the temporary pacemaker wires and IVs.  I thought she had a lot of wires and tubes in ICN, but we were fooled.   She has crazy wires!

I just called to check on her and didn't really understand what the nurse said except that her CVP pressures were a little high (pressure in the top of her heart measured by the IV in her neck) and that they were "pacing her" and that they wanted her "rate" higher (maybe heart rate??).  And that she is breathing over the ventilator and they hope to do a blood gas lab around 10 and if that's ok, then try to extubate her. 

It's all very overwhelming.  The prayers have totally made this surgery possible.  Thank you for each and every one of them.  We are forever grateful. 

On a lighter note - most of you know that Claire's nursery theme is farm animals.  You also may know that most of her nursery stuff is the How Now Brown Cow theme.  So tonight the nurses handed me this card and said I needed to keep it for Claire.  I started looking over it because I had no idea what it was.  I started reading the back and it said she would receive a permanent card in the mail with a serial number, model number, and the surgeon's name.  I was thinking, "why would she have this? She didn't get a pacemaker did she????" 

So I turned it over and read the front - "Bovine Pericardial Patch" with the serial number, model number, implant date, surgeon, and patient name.  This means our child has a cow patch in her heart.  It is a piece of cow that closes the 2 ventricles (the hole in her heart).  Bovine = cow.  So she will have a permanent cow patch card to always carry in her wallet!  She is now a true "cowgirl at heart" - literally (sounds like a very appropriate title for Claire's blog!!!).  So needless to say the How Now Brown Cow theme is PERFECT for our little girl! 

our family before surgery

Claire in her hospital gown

Sweet baby after surgery.  The white line down her chest is the incision.  The orange wires are the temporary pacemaker wires that are connected to her heart.  The tube between them is the drainage tube from around her heart.  The stickers on her head are to measure oxygen levels in her brain.  The tube in her nose is the ventilator. She has an IV in both arms and in the right side of her neck as well as leads stuck all over her body. 

Can you see Claire in the tangle of wires?

So many medicines

Surgery update

Nurse Marie is here at the hospital and so graciously let me use her laptop to update the blog.  Claire's had a good morning.  She did great during her pre-op stuff and was so cute in the little hospital gown that was way too big.  They took her back around 8:30 am.  Around 9:45 am the NP came out and said they had cut put all of her IV lines in and she was asleep and stable.  They had cut through the breast bone.  As of now they said they had started surgery at 10:10 am.  I don't think they have started bypass yet.  The NP is supposed to come out and let us know when that happens. 

Thank you for all of the prayers.  We are updating Facebook as we can and we will try to update on the blog if a computer is available. 

Claire may be able to donate part of her thymus (something they have to remove part of anyways for the surgery) to a child who needs it.  We may be part of this study, but we are waiting for a nurse to talk to us about it. 


The Scott Family

Tuesday, February 22, 2011

Hair Tourniquets and Pre-op Appointments

Well the past 24 hours have been very interesting.  I drove to Clayton yesterday with Claire by ourselves.  We did great and she didn't even fuss!  We enjoyed spending time with Julie, James, Amanda, and Colby for supper and I decided to give Claire a bath and change her outfit.  When I was putting on her new clothes, I saw some lint stuck to the bottom of her toes.  I started to pull it off and Claire screamed.  I then realized we had a situation on our hands. 

Since we have been home from Duke, my hair has been falling out a lot.  Like almost clumps a day.  Last week I received an email from "What to Expect", a website I signed up for when we found out we were pregnant.  It sends you weekly emails letting you know what to expect that week.  I have been still getting them telling me what to expect after the baby, etc.  So I got one last week that said this:

  • During shedding season, beware of long strands wrapping around your baby's tiny fingers, toes, wrists, or penis. That can hurt (really!); so if your little one is fussing and you can't find a reason, make sure the culprit's not a "hair tourniquet."

  • So immediately, I realized that Claire had a hair tourniquet on her toes!  A strand of my hair was woven so tightly around her 3 middle toes that her toes were so red and swollen.  It was terrible!  I called Julie in the bathroom and we tried to break it loose but couldn't because Claire was screaming bloody murder.   So then we enlisted James with the tweezers, fingernail file, and flashlight.  After what seemed like forever, James finally broke the hair into pieces.  We spent the next hour trying to decide if we got it all off.  Her toes were so swollen, it looked like the hair was still cutting into her skin.  We put a cool rag on it and the swelling went down some and we could somewhat tell the hair was gone.  It was very traumatic for all of us.  I am pretty sure that I will now wear my hair up until it quits falling out, that I will check every foot part of Claire's outfits for hair, and that Julie and James have decided that having kids may be a little more scary than they thought.  We were seriously almost headed to the hospital.  They look better today but you can still see the lines where the hair was wrapped.  That thing was on there for good. 

    you can see the 3 middle toes that have the lines on them around the base and half way up the middle toe

    So these are one of those things that no one tells you can happen with your baby!!!!  So I am telling you now to be on the lookout for this stuff!!!

    Amanda, Claire, and I went to Duke today for her pre-op appointments.  Claire had lab work, a liver ultrasound, a chest x-ray, and an ECG.  All turned out well except that Claire had another meltdown during all of these things.  We couldn't console her, couldn't calm her down, nothing.  Amanda and I were worried she was having a tet spell since unconsolable crying was a sign.  But her lips didn't turn blue, so they said it wasn't that.  So once she wore herself out (and us too), she slept through the rest of the appointments.  The liver ultrasound showed that the fluid filled cysts were a little bigger, but the heart surgeon called the liver surgeon while we were there and they said that wouldn't affect her heart surgery tomorrow.

    We met with the NP that will be with Claire tomorrow and that will be updating us throughout the surgery.  She gave us more details of how tomorrow would go including that Claire would be there at 7 am and the surgery would probably start around 9 am and finish in the afternoon.  She also said Claire would have the breathing tube in, IVs in her neck, arms, and maybe leg, drainage tubes and pacemaker wires coming out of her chest after surgery, etc.  All the scary details.  My mind has blocked them out for now.  We also met with the anesthesiologist and he explained she'd be put asleep for about 6-8 hours.  Aunt Amanda took some pictures of the day.  I can't look at the needle one. 

    Please pray for Claire and all of the doctors and nurses tomorrow!!!!!!!  Thank you in advance!


    The Scott Family

    Monday, February 21, 2011

    Claire's first race

    Claire enjoyed her first NASCAR race yesterday at home.  We are not huge NASCAR fans, but we really like to watch it and have been to a few races.  We are not die hard where we get the drivers' number tattooed on our body.  ;)

    Anyways, Claire kicked back in her bouncy chair while Trent kicked back on his couch.  Claire cracked open a bottle of Similac and Trent cracked open a Diet Pepsi.  Both were enthralled with the race.  Both took a nap.  Claire pulled for Digger (the little cartoon groundhog thing) while Trent pulled for Dale Jr.  We all enjoyed our day at home together. 


    The Scott Family

    Sunday, February 20, 2011

    Family History

    I really enjoy learning about family history - especially my family.  My Granny Rose did a lot of genealogy and traced the Rouse and Jones families back a very long way.  She had so many detailed notes and research and time put into it.  My Aunt Connie has done the same with the Carpenter and Stevenson families.  I could sit for hours reading all of the stories and research and looking back to see who is related to who.

    I got very interested in the Scott family history several years ago while Trent's Granddaddy was still living.  He may have been almost 89 years old, but the man could remember anything.  He knew every person's name, when they were born, who they married, how they died, where they lived, what they did for a living - everything.  I mean, back in the day when people had 10 kids- he could remember what all of their names were (first and middle names) and the years they were born.  He was sharp.  I went to his house a few times before he died and took a  notebook so I could write down all of these things he could remember.  I knew once he died, so much history and knowledge would go with him.  At this time I didn't know that Trent's cousin Bill was also interested in the Scott history and was working on the genealogy too.  I would later find this out last year and find that we have some good information between the 2 of us!

    Anyways, the male gene runs deep in the Scott family.  They had lots and lots of boys in this family.  When we were pregnant and looking for names, we figured out that most of them were named William, Benjamin, or Edward.  So we decided we would not use those names since it made the family tree so complicated!  If you just go back on Trent's line, you will see they are all boys.  You have Trent and Taylor, their dad Eddie, Eddie's dad Carl, Carl's dad Henry, Henry's dad William Henry, and William Henry's dad Benjamin. 

    The last girl born into the Scott family before Claire was Carol Ann Scott who was born in 1959.  And before Carol, the last Scott female born was Sarah Viola Scott born in 1879.  So it was 80 years between Sarah Viola and Carol and then 51 years between Carol and Claire.  So these Scott girls are special!  Acutally, the part of the farm where we built our house is actually the land that was Viola's before her brother (Trent's Great-Grandfather) Henry bought it from her.  When Trent's granddaddy deeded Trent the land in 2002, we found there had never been a real survey of this piece of the farm.  So we had to go back to when Viola owned it with her husband and it was described by being bound by the creek, a wire fence, a tree, and a rock.  So it's pretty neat that Claire lives where Viola (the first Scott girl) owned/lived. 

    Trent's cousins Bill and Ann Scott, who are Carol's parents, brought by a special gift for a special Scott girl yesterday (which, by the way, was Claire's first time spending the day at Grandma Neat Neat's and being rocked in her daddy's rocking chair).  They brought Claire a beautiful pewter baby cup with her name and birth date engraved on it.  They made sure that the "Scott" was put on the cup since it is such a unique thing for the Scott family.  It is such a special gift that we will treasure forever as well as the history behind it. 

    Although Clarie didn't follow status quo with being a boy born into the Scott family, she definitely has that Scott blood running through her full of determination, strength, and a little hard headed.  She let's you know what she wants when she wants it and doesn't hold back.  And that's what we love about her!


    The Scott Family

    Saturday, February 19, 2011

    Thoughts on my heart today

    As Claire's heart surgery gets closer and closer, I get more and more anxious, scared, excited, and nervous.  We know this is what Claire needs to have done to be able to grow and prosper.  But at the same time, the surgery is huge.  These surgeons and doctors will be stopping our baby's heart.  Stopping it.  No beating. 

    Stopping the heart that Trent and I wanted to badly to hear on that first ultrasound but didn't.  Stopping the heart that we were so relieved and happy to hear on the second ultrasound that brought tears to our eyes and excitement in our own hearts.  Stopping the heart that I worried so often about while pregnant and listened to daily just to make sure it was still beating.  Stopping the heart that we learned so much about - more than we would ever think to know about a heart and all of it's valves, ventricles, blue and red blood, and designs.  Stopping the heart that I so intently listened to and counted the beats in utero the day before I went into early labor, worried that something just wasn't right.  Stopping the heart that we listened to for a week all day and all night at Duke while trying to keep Claire from being born for as long as we possibly could.  Stopping the heart that was so determined and strong on the day she was born.  Stopping the heart that for so many times in the ICN we watched the monitor when it was experiencing bradycardia.  Stopping the heart that has the really loud murmur and makes a whooshing sound instead of a beating sound.  Stopping the heart that when you lay your ear to Claire's chest, you hear that loud whoosh, whoosh, whoosh.  Stopping the heart that gives our daughter life each and every day.  Stopping the heart that we worked so hard to keep going and going even on the days that our hearts were breaking.  Stopping the heart that God made for Claire.  

    It's so daunting for me.  Trent is so strong and reminds me this is what we knew was coming.  It's 100% fixable.  This will allow Claire to live a normal health life without restrictions.  He is such a solid rock for our family.  And I know all of these things.  But at the same time, they are stopping our baby's heart.  So for those long, long hours on Wednesday, not only will Claire's heart be stopped, but so will mine.

    Please continue to keep Claire and the doctors and nurses in your prayers. 


    The Scott Family

    Thursday, February 17, 2011

    Extra Pieces

    The other day, my cousin's wife sent me a message on Facebook about their son. My cousin's wife is a PICU nurse in Texas so I have relied heavily on her words and wisdom as we have been dealing with Claire's TOF and prematurity.  She's been an awesome help to us!!!  Anyways, back to the story.  Her son had been playing and was using his digital camera to "examine" his doll's heart.  He then announced to his mom that his doll's heart had some extra pieces that needed to be fixed.  She said she thought he was thinking of Claire.  I thought that it was so sweet that he was learning about Claire.  It also made me look at Claire's heart defect in a totally new light.  There's nothing wrong with Claire's heart - she just has a few extra pieces that need to be fixed.  If he could figure that out, why couldn't I? 

    Well the date that these extra pieces will be fixed has been set.  Claire's open heart surgery will take place at Duke on February 23rd.  We have known this day was coming since August when we found out that she had TOF.  But now that it is actually on the calendar, I am starting to get scared. 

    Along the way we have heard so many different milestones that we thought Claire would have to meet before the surgery like being 4-6 months old, weighing around 5000 grams (or 11 lbs), etc.  But the surgeon is ready to operate and he is sure Claire is ready now.  Mom and I spent about an hour with the surgeon yesterday while he taught us and explained in good detail every step of the surgery process.  I will have to say I was very overwhelmed and don't remember everything he said.  But I will try to remember the highlights (good and bad) and describe here. 

    We will be taking Claire in on Tuesday for her pre-op stuff like labs, x-rays, and a liver ultrasound.  Then we will take her back sometime Wednesday morning for her surgery and it will last into the afternoon.  I didn't ask how many hours exactly it would be, but I have heard about 5 hours in the past.  So it will be a long day.  They will put Claire to sleep and put in a ventilator to breathe for her.  They will stop her heart and put her on a pump that will pump her blood through her body for her.  They will cut through her breast bone to get to her heart. 

    Then they will take a piece of cow skin (I think skin) and use that as a patch for the hole between her ventricles.  They have to be very careful how they stitch this because they can't do it too tight or it will pull out.  They can't do it too loose or it will leak.  They can't go too deep into her heart because they could hit the electrical system in her heart that controls the synchronizing of the beating.  If that happens, they will have to put in a pacemaker. 

    Once the hole is patched they will move onto the pulmonary artery.  He described this part in 3 sections.  You have one section of this artery that is attached to your heart and is made of muscle.  This part is what could have extra muscle tissue that restricts blood flow from going into the artery.  Depending on it's size, they will possibly have to slice it open and insert a patch to open it up.  They can also go in and "core out" some of the muscle.  He described this part like a donut.  It's kind of thick since made of muscle.  So they can kind of cut some of that thickness out if they need too and open up that hole. 

    The next part would be the part that goes to your lungs.  It's on the opposite end of the artery than the donut part.  It's a thin wall so there's no coring this one out.  If it's too small, they will slice it open and insert a patch here too.  So like if you have a paper towel roll and the hole inside was too small, you would slice it the long way and open it up and then put a patch on it to keep it wider.  It's hard to explain here. 

    The trickiest part of the artery is the valve portion.  This is located in the middle of the artery between the heart end and the lung end.  There are "curtains" that open and close each time your heart pumps.  The blood flows through the curtains and then the curtains close so that the blood doesn't go back into the heart.  They may have to cut the curtains down some if they are too close together since they really can't open up this part because it would leave a space with no curtain.  This is where leaks can happen if they curtains are not fixed properly. 

    A lot of this is a judgement call once they get in to Claire's heart.  I asked what her valve looked like from the echo cardiogram.  He explained that they use a standard deviation from zero to say how small her valve is.  So zero would be the perfect size.  Claire's valve is a -1.  So she is one step away from the perfect/normal size valve.  He said he would be concerned if it was like -6 or -7.  I also asked how her right aortic arch would affect anything.  The surgeon said he actually preferred her to have it!  He said the way the aorta and the pulmonary artery wraps around each other, it makes it more difficult to do the heart surgery.  So with Claire's being backwards, it makes it easier to do the surgery. 

    So once they get all of that done, they start her heart back beating sew her up (I think) and do an echo cardiogram to see if every thing isworking like it should.  If so, then she's done.  If not, then they go back in and fix it right then.    Claire will be on the breathing tube for a few days then weaned off.  She will also have draining tubes from around her heart and draining out of her chest to get any accumulation of fluid out.  Once the fluid stops, the tubes will be removed.  She will go straight to the PCICU (Pediatric Cardiac Intensive Care Unit).  Duke has just built this specialty unit for pediatric cardiac patients.  So it will not be the NICU where she was, but just like that only for heart patients.  Once she is ok and after a few days, she will hopefully then be moved to a regular hospital room on the pediatric floor.  This will be nice because I can stay with her 24 hours a day and spend the night and I think she'll have a bathroom and TV and stuff.  I think. 

    There are lots of risks involved with this surgery.  Number 1 it's open heart surgery.  What more can I say?  There's risk of death, infection, and stroke to name a few.  I asked the surgeon if he had ever lost a baby with this surgery and he said he had lost one baby in his first year of doing the surgeries.  The baby didn't die because of his TOF or the surgery, but he had something really wrong with his brain and that is what caused the complications.  I asked if he thought Claire's liver issues would cause any concern.  He said no. 

    There is a possibility when Claire gets older that she would have to have the whole valve replaced.  But they won't be able to know this until she's in her late teens or early 20's.  It just depends on how her heart grows and if the valve begins to leak or becomes too small again for normal heart function. 

    So we have to keep Claire well and away from germs!!!!  If she got sick they would have to reschedule the surgery.  And this surgeon is going out of the country a week after Claire's surgery, so we don't want to reschedule. 

    Please, please, please start your prayer chains now for her.  I am already losing my  hair due to some post pregnancy hormone mess, so I will probably really be bald after the surgery from twisting my hair.  Oh well! 

    We know that Claire already has a team of nurses and doctors up there that will be looking out for her and us.  We will be with a whole new team of nurses in the PCICU and if they are anything like the ICN nurses, we will be ok. 

    I think that is all I can remember about the surgery.  I know the surgeon told us a lot more.  I caught myself in shut down mode and tried several times to snap out of it.  So I caught bits and pieces.  (My shut down mode is when I hear something bad or scary I stop and dwell on that bit of info and tune out the rest.  That's why we write down everything b/c I can't remember.)

    This surgeon is not the original one we met with in September, but I think they will both be there.  This surgeon has been doing these repairs since 1995 and seems very knowledgeable and nice.  I really liked him and his personality! 

    On another note, we got to see Nurse Marie, Eliza's mom, and a few of Claire's other NICU doctors and cardiologists.  We are hoping Eliza went to camp today.  That was the plan!  Eliza gave Claire the greatest book yesterday called "Who Loves Claire?"  It goes through and on each page it asks "Who loves Claire?"  Then it says mommy and daddy love Claire, Eliza loves Claire, nurse Marie loves Claire, nurse Susannah loves Claire, Doctor Rachel loves Claire, and all of Claire's Duke friends love Claire!  It has other stuff like how much each of them love Claire - as big as the ocean, as much as the stars in the sky, etc.  It's so NEAT!  It even has a message to Claire from Eliza, her "very first BFF."  So we are hoping that they are at home RIGHT NOW!!

    We also did the interview for the MIX 101.5 radiothon yesterday.  I was a nervous wreck.  I hate talking in front of people.  I know no one could really see me, but lots of people could hear me.  Claire was sleeping beautifully until they said it was our turn, then she got hungry and mad so my mom had to carry her away.  Thinking back now I should have put the microphone up to her mouth and let her cry on the radio and said that she was unhappy because the phones were not ringing!  Oh well.  There's always next year...  Claire did make out and got a cute pink stuffed teddy bear for participating!  Claire also got to spend time with her aunts and uncles yesterday too.  It was a good but very long day. 

    So please keep Claire and the doctors in your prayers in the coming days.  Once she gets those extra pieces fixed there will be no stopping her!


    The Scott Family

    Tuesday, February 15, 2011

    Love Bugs and Stomach Bugs

    Well, unfortunately we did not get to spend Claire's first Valentine's Day with her.  Our little love bug spent her first Valentine's with her Granny and Big Daddy.  Not that we didn't want to spend the day with Claire!  But mommy came down with a terrible stomach bug Sunday night.  Luckily, I knew that something wasn't right and got my mom to go come pick Claire up around 9:45 pm.  By the time they got back to my parent's house, I was sick.  I guess I had the 24 hour stomach bug but it felt like 24 days.  I am hoping and praying that Claire and Trent do not get it.  With both of their health issues, they cannot afford to have this virus.  So please, please pray that neither one of them get it! 

    Grandma Neat-Neat came over and totally disinfected our house from top to bottom while I slept off the bug.  Thank goodness she could get the house cleaned hopefully of all germs before Claire came back home today. 

    We are headed to Duke tomorrow to meet with the heart surgeon and the cardiologist.  Not sure what they will say.  We are hoping for a good report!  We have been listening to 101.5 on the radio today (yes, you can hear it in New Bern) and are excited to go tomorrow and see what's going on.  They are doing this radiothon to raise money for Duke Children's Hospital (see earlier posts).  Super Dude's mom is there today answering phones, so call and ask for her!  Super Dude was at Duke from birth until 4 months old and had multiple surgeries before going home.  Or you can wait until we are there tomorrow.  They plan to interview me and Claire on Wednesday around 2:30 pm so listen out for us and call in and make a donation in Claire's honor.  I am pretty sure you can listen live online on their website too if you are at work or at home. 

    Claire plans to see a few of her friends tomorrow at Duke including our favorite nurses, doctors, and Eliza's mom (we wish Claire and Eliza could see each other but they can't since Eliza's still in TCN with hopes to go home this week).  Claire also hopes to visit with Aunt Julie and Uncle James and their crazy cats!  Pictures will come at a later post! 


    The Scott Family

    Sunday, February 13, 2011

    MIX 101.5 WRAL-FM Radiothon

    This week, February 15-17, MIX 101.5 radio will be broadcasting live from Duke Children's Hospital with a radiothon to raise money for the children's hospital.  Fortunately Claire's appointments are during this 3 day radiothon!  So we will get to experience it and see what it's all about in person.  Claire has not stayed at the actual Children's Hospital yet, but when she has her surgeries, this is where she will be.  (UPDATE:  A friend actually just informed me that the ICN, TCN, and PICU are all considered part of the the Duke Children's Hopsital, so I guess 99 days of Claire's life were spent in part of the Children's Hospital! ) And this is also where all of her follow up appointments have been and will be.  Actually, her very first appointment there was when I was still pregnant and we went to DCH for a fetal echo cardiogram.  DCH is also where Claire had her first liver surgery before she came home.  I am thinking this will be where Claire goes year after year until she's 18 years old for her annual cardiology check ups.   This is also the place that has the glass elevators that my mom has to close her eyes in each time we ride on them...  ;)

    Lots of children benefit from this specialized hospital just for them.  We know Claire has and will.  So it will be really neat to be there for the radiothon.  Shoot - we may even get to be on the radio!  ha! ha!  If so, y'all will sure be able to recognize this southern rambling voice.  But we may not get to be on the radio either and that is fine. The only reason I would do it is to let people know how important this place is to our family and to Claire's life. 

    So, tune your radios to 101.5 FM and listen in!  And maybe even make a donation in Claire's honor!  One of Claire's friends, Super Dude, will have his mom there on Tuesday answering the phones.  (You can check out his blog at  Super Dude is also a graduate of Duke's ICN and a main reason that we had Claire at Duke. 

    Here's the Duke website to read more about it:

    Or you can go to the MIX 101.5 website and read about it as well:

    We will take pictures and post later on this week!  Just another way to support Congenital Heart Defect Awareness Week.

    In other news, Claire was switched to another new formula yesterday so we are PRAYING that this one works!  After all we have been through, you would think the eating part would be easy!  Claire enjoyed spending yesterday with her Great Aunt Doe and Grandma Neat-Neat.  We hope they had just as much fun!  She got some awesome gifts from Great Aunt Doe's friends at work. They are beautiful!  We will post pictures soon!  Everyone is just so thoughtful.  We truly appreciate all of the prayers, meals, gifts, cards, emails, phone calls, and blog comments. 


    The Scott Family

    Saturday, February 12, 2011

    Life inside a chicken coop on the funny farm

    As many of you know, Claire's nursery theme is farm animals.  Pretty obvious since we live on a farm - guess we are pretty simple people.  But it's what we live and love.  So Claire has a mess of farm animal stuff in her room as well as other stuff like monkeys and bears. 

    Well this past week, Trent has been sick with a really bad head cold.  Hence, Claire and I have retreated to her her room upstairs for the entire week to try to stay away from germs.  I am not sure how big Claire's room is, but at the beginning of the week I was thinking it was a pretty good size room for her to grow up in.  By today, I feel like we are isolated in a chicken coop located on the farm!  Unfortunately, Trent's cold is not getting much better so he will be headed back to the doctor. 

    So this past week, I have been sleeping in the small twin bed in Claire's room with our dog who is not happy about going from a king size bed to a twin.  He paces and turns all night.  He has back problems so that makes it worse.  So I am having to carry the dog up and down the stairs with me each time I go.  He won't just stay in one place.  He has to follow me.  Trent and I have tried shutting him in the room with Trent, but that doesn't work either.  So I have been carrying the dog up and down all week. Then he realizes he thinks he wants to be the baby again.  He wants to lay in the boppy, lay on Claire's blankets, and even get on the changing table (don't ask me why). 

    Claire has spent most of the week in the swing, crib, or bouncy seat.  Her bouncy seat and little swing are the How Now Brown Cow collection from Fisher Price.  So it goes along with our funny farm theme really well.  She really loves the bouncy seat!  The swing, not so much.  She is learning.  So we are using the Rainforest swing from cousins Connor and Anna.  It swings side to side and she LOVES that.  We have yet to get the How Now Brown Cow swing like this (and yes they make one at Target!). 

    So along with the bouncy seat, we have pigs and cows dangling from the entertainment bar on the front of the seat.  Can you even find Claire midst all of the farming???

    Claire even tried some medicine of her own to make Daddy feel better.  I believe it worked, just not on his cold! 

    So below is a picture of the nursery/funny farm/chicken coop as of this morning. One week of this isolation is killing us!  Don't judge from the picture below.  We do keep our house clean.  But from this one picture you can see what our lives have been like this week!

    I made it larger so you can really see.  We will start with the dog since we have already discussed him.  He sits like this and waits because he wants to go downstairs.  This is his "stare down" mode.  He means serious business.  In front of him is one of Claire's blankets and then a brown blanket by the bed.  I have to throw blankets on the floor for him so he can try to be comfortable as I am working with Claire.  With is back, he can't jump on and off the bed like he wants to. 

    Then you see my stack of books.  I have read everything there is to know about bowel movements in babies and what they are supposed to be like and how many a day, etc.  Claire's stomach is still not right.  I have already put a call into the doctor this morning to see what they think about bumping Claire up on a different less broken down formula.  We will see.  Then you kind of see the changing table with no cover on the pad.  That is because I have washed the changing pad 3 times in 2 days.  And Claire threw up all over it last night because she ate too much too fast.  So I just decided it wasn't worth putting a new one on right now.  So I was washing clothes at 2 am today.

    What you don't see is Claire's bathroom that has dual purpose this week.  It's the bathroom and the kitchen.  I had to bring all of her bottle stuff up here so that I didn't have to keep running up and down (with dog in hand) to mix her bottles and everything. 

    Next in this picture, you see the unmade twin bed.  It has decided it's just staying unmade until further notice.  And the foot stool that goes to the glider Trent bought us is beside the bed as a makeshift night stand for me.  Along with the pink monkey on it.  The lap top on the floor is my mom's.  I just figured out yesterday how to get our Internet set up on it so now I do have some sort of outlet to the world.  Hence this post.  I am thinking of this as an outreach.....  ;)  And in the middle of everything you see the How Now Brown Cow bouncy seat with Claire resting comfortably.  You can't even see her in it, but she's there.  Do you think all of this is affecting her?  Of course not!  She's such a good girl! 

    Doesn't she just have such a "glow" about her??  A pure "shine"?  Well, that's the Aquaphor that I smeared all over her mouth this morning because her lips are getting kind of chapped.  Or maybe I am just a chap stick addict.  I don't know, you tell me!?!  ;)

    But she is just as happy as a pig in you know what.  We will say mud here.  We have the jungle/rain forest music playing in the background with pig songs playing intermittently from the cute pig on her bouncy chair from Candice and Jacob (I think Trent and I love this pig more than she does!).  

    So, here's to life on the farm!  We are praying Daddy gets better soon!  And that neither me nor Claire get the cold germs.  I have used a whole can of Lysol (which I despise) and a lot of Lysol wipes this week.  I have almost gone out and searched for Cavi Wipes so we could feel more sterile like at Duke. 

    Have a great weekend!  At least we can see the sun shining from our window in the coop.  That's a good sign!!!!


    The Scott Family

    PS - I weighed Claire last night and she was back up to 9 lbs 3.5 oz.  So she is gaining again hopefully!!!

    Friday, February 11, 2011


    We are working hard on getting some sort of routine down.  I know I am not going to be exact on everything, but I am trying to work out the night time routine.  We have started trying to do some sort of bath each night, weigh each night, feed, then go to bed in the big girl crib in Claire's room.  It seems to work ok.  She also has to listen to her cd that nurse Marie made for her each night when we put her to sleep.  She's getting better and better at it - and so are we. 

    Claire's stools have still be a little off the last few days, but we have added the rice cereal to see if that helps.  She had lost weight since last week, but as of last night, she was gaining some back.  So I hope she continues to gain and not lose from now on! 

    Tomorrow we will be celebrating one of Claire's great grandmothers' 80th birthday.  Unfortunately Claire will not be attending the party.  We cannot risk any unnecessary germs at this point.  So she will be staying with her Grandma Neat-Neat and maybe her Great Aunt Doe.  Claire has been hanging out at Granny and Big Daddy's some this week while we both worked and that routine seems to be getting a little easier too.  I have come to the conclusion though that my car is not designed for a short person to be putting a car seat in the back seat.  I am definitely building up arm muscles!  And leg muscles going up and down our stairs to Claire's room. 

    So things seem to be going in the right direction as far as a routine goes.  I know each day is different and we never know what it will bring.  But at least we are working on it the best we can.  And I am sure once we get one routine down pat, it will all be turned around! 

    We have also considered helping Eliza make a jail break next week when we go to Duke.  Claire is certain she can hide Eliza in her stroller and get her out of there!  It is time that she make a move!  Don't think we didn't sit there and wonder how we could get Claire out of there all of those long days in the hospital.  You other NICU mom's know just what I am talking about......

    We are hoping for some sunny weather soon!  This rain is so depressing!  Claire did get to experience her first snow at home yesterday.  We didn't go out in it because it was too cold and windy.  But at least we didn't have to drive in it anywhere.


    The Scott Family

    Wednesday, February 9, 2011

    Congenital Heart Defect Awarness Week February 7-14

    It's pretty sad when your child has a congenital heart defect (CHD) and you don't even know when CHD Awareness Week is!!  I saw this on someone's Facebook status this morning and about freaked out that I didn't know anything about it!  I guess it makes sense that it's close to Valentine's Day.  So here's a quick post about it! 

    You can click on the Facebook thing below and it should take you to the CHD Awareness Week 2011 page if you want to "like" it. 

    Below is a "fact sheet" and info about CHD I took from the Congenital Heart Information Network website ( 
    Congenital Heart Defect Fact Sheet
    • Sometime during early pregnancy, a baby's heart may not form properly, resulting in structural abnormalities known as Congenital Heart Defects. In many cases the cause is unknown.
    • It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year.
    • Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications.**
    • CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths. Nearly 1,800 infants with CHD die each year as a result of congenital heart defects
    • Some CHDs may require visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
    • The majority of patients born with congenital heart defects are now adults****, yet many adults with CHD are not receiving adequate ongoing care from trained specialists.**
    Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
    Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
    By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
    It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.

    If anyone knows how I can get something out about this in a better way, please let me know.  I will be more prepared for next year!  The website has different PSAs, proclamation requests for states to declare this week as CHD Week, and things that I can use, I just don't know where to start.  I will try to post more later if I find out anything else!!!!! 


    The Scott Family