Thursday, August 25, 2011

A year ago today........... and a little of this and a little of that (REALLY long post)

Wow - I just realized that a year ago today, our world changed forever.  On August 25, 2010, I went to ECU for a fetal echo to check Claire's heart.  I wasn't worried at all.  Both of my best friends had to have them done due to over reactive doctors.  Theirs only lasted 15 minutes or so and they were out the door.  No big deal, right?  My mom, my mother in law, and my sister Amanda went with me as it was an opportunity for them to see the baby hopefully. 

The nurse would only let one person back with me, so my mom went back.  The tech came in and started the fetal echo.  The maternal fetal medicine doctor at my previous appointment had thought she had seen a small hole in Claire's heart, but really didn't think it was.  She admitted she and the nurses discussed not even saying anything to me about it.  But to be on the safe side  (and as a overly cautious doctor and mother), she wanted to get an echo just to rule anything out.  After pushing on my belly harder and harder trying to get good pictures, making me turn different ways, and even tilting the table I was laying on backwards where my head was pointed towards the floor, the tech got another tech to come in because she couldn't get a good view.  Then the pediatric cardiologist came in.  After about almost an hour of me laying there and them not saying anything to me, I started crying.  My mom did too.  We knew something had to be wrong.  The doctor noticed and explained that he would explain everything to us once they were done and in the conference room. 

We met Amanda and Anita in the conference room and just waited.  The cardiologist came in with his diagram of a normal heart and then a diagram of Claire's heart.  He said "your baby has a heart defect known as Tetralogy of Fallot" or something to that affect and I busted into tears again.  I apologized for crying, and he was emphatic that I not apologize and handed me the box of tissues.  Although I tried to understand, it was hard.  I am one of those people that when I hear bad news, I all of a sudden tune everything else out and I don't hear a thing. 


The diagram the cardiologist gave us.  Normal heart on the left, Claire's heart on the right.


Next thing I remember is getting out to the car, seeing lots of texts from my best friends wondering what was taking so long, and trying to figure out how I was going to tell Trent when I got home.  It was a really hard day.  That was also the day Trent said we were going to Duke no matter what.  I ended up having to go to work after that (I was trying to save up all the vacation time I had), and was a bawling mess the rest of the day.  It was the first time I ever even considered our baby having a heart defect.  I had considered Downs Syndrome since I 31 years old.  But never did I ever think of a heart defect.  Never did I know what those few words would mean for our child's journey through life. 

But now, a year later, I am so thankful for our heart baby.  She has the best heart of anyone I know and has made our hearts grow bigger and fuller.  But wow, it makes you realize just how fast life can change - in just a second. 

Onto present day stuff:

I am trying to get Claire to start eating some solid foods.  She is doing the "guilt stare" again like she did before we started her on baby food.  She watches us eat everything and now acts like she's chewing when we chew.  So I tried giving her some whole peas this week.  She hated them.  I then tried mashing them up in her pureed sweet potatoes, and she gagged.  So that was not a success.  I believe she is like her momma and doesn't like peas - I can't blame her!!  It's like she was the Princess and the Pea and instead of feeling the pea under the mattress, she could taste the pea in her sweet potatoes. 

The princess and the pea (literally).

When we visited with Ava last weekend, she shared some veggie dip puff things with Claire and she ate one.  So my mom bought some for Claire this week and she has eaten a few of them.  Slowly but surely she is getting the hang of it.  Here is a video of her eating and chewing like a big girl on the ride to Duke yesterday.  Too cute!

video

Speaking of Duke, Claire had her cardiology check up yesterday.  We had a good trip up there and had a good visit at Duke.  Claire weighed about 18 1/2 lbs (yay!!), her BP was good, and she basically slept during her entire cardiology exam.  So I know Dr. Barker got a real good listen to Claire's heart yesterday.  He was pleased and here is what he said:

- Claire still has mild stenosis in her pulmonary artery.  With TOF, the base of the pulmonary artery where it connects with her heart was small and closed with muscle tissue.  The surgeon removed as much excess muscle tissue as possible, but of course there is still some narrowing as well as some scar tissue causing a little narrowing.  This should not get worse and should stay the same.

- Claire has "significant leakage" in her pulmonary valve.  It hasn't changed since our last visit so that is good.  Basically, the surgeon did a valve sparing surgery on Claire's pulmonary valve.  With TOF, the entire pulmonary artery, including the valve, is small.  A lot of times, surgeons have to go in and open up that valve so the blood can flow through easily to the lungs.  With Claire, her valve was open enough that the surgeon did not have to cut it open.  But he did have to trim down the leaflets in the valve that hold the blood "up" in the artery so it doesn't "leak" back down in to her heart.  Well, since the leaflets were trimmed they don't fit snug in her valve, so some of her blood leaks back down in her heart.  I don't really know a good way to explain this.  I guess it's like if you have a water hose with water in it and you squeeze the hose, the water goes towards the outlet.  So like when Claire's heart squeezes her blood out to her PA, it goes out towards her lungs.  Well, if you squeeze your hand really tight on the hose, the water will not go back down towards the water source.  If you loosen your hand, some of the water might drip back towards the spigot.  Same thing with Claire's heart.  This is the thing they have to watch closely as Claire gets older.  The valve is usually the one thing they have to replace as the child gets older with another open heart sugery.  But right now, she is good to go!

- Dr. Barker did not think that Claire had any thickening or stretching of the right side of her heart which is great news!  With TOF, since the PA is usually so small, the right side of the heart has to work overtime to squeeze the blood to the lungs.  This can cause the right side of the heart to thicken because it's working too hard.  So glad Claire's right side looks/sounds good.

- Claire has something called "wandering atrial pacemaker."  Here is a definition I found online:

A wandering pacemaker is a type of arrhythmia characterized by a shifting in the location of the heart's natural pacemaker. The result is an irregular heartbeat, with a P wave, the wave which indicates a shift of electrical activity from the right atrium to the left atrium, which moves around when the heartbeat is viewed on an electrocardiograph (ECG). This arrhythmia is usually not a cause for concern and it does not require further treatment. However, there may be cases in which it is associated with another health problem which does require attention.
The heart's natural pacemaker is located in the sinoatrial (SA) node, an area in the upper portion of the right atrium. This area includes a cluster of pacemaking cells which determine heart rhythm. In someone with a wandering pacemaker, sometimes cells in the atrioventricular (AV) node, in the lower area of the right atrium, take over pacemaking duties temporarily. This results in irregularities in the heartbeat which the patient can usually feel, and which will also show up as irregularities on an ECG.

Basically, I think this has to do with her surgery when she had that JET and the p waves were doing something funny due to her electrical circuit in her heart being cut.  Dr. Barker said there was no need to worry about it.  He just wanted to let us know.  Pretty much, most peoples' heart beats start in one location in the heart and there is some kind of sequence.  Claire's heart beat just starts in a different part of her heart.

Dr. Barker asked about Claire's first birthday plans.  When I told him we were having a big party, he said that if anyone deserved it, she did.  Glad he sees my point.  ;)

After we left Duke, we met Nurse Marie at the Mad Hatter Bake Shop in Durham.  I wish we had known about this place while we were up there so many months as the food was GREAT!  Claire was exhausted by this point, but she did allow us to eat.  I am getting pretty good at this multi-tasking while eating.  I actually ate most of my food, fed Claire, kept Claire occupied with toys, and carried on a decent conversation.  By the end, Claire was ready for a nap, so we headed on home.  It was a nice treat and good to see our sweet friend Marie.


On another note, while waiting for Dr. Barker yesterday, I noticed Claire's bottom 2 teeth had dark gray streaks down the back of them and some gray on the front of the teeth.  Of course, I freaked out and posted it to Facebook to see if anyone else had ever dealt with this anomoly!!!  I mean, really??!?!  Are my child's teeth rotting already!?!?!?  Needless to say, we finally figured out that her liquid vitamin that she takes each day with iron can cause this discoloration.  Shew!!!!  The things you learn as a parent!

And then mom-guilt sent in EARLY this morning.  Claire has been sleeping thorugh the night (while the dog has not), so I was sure as tired as she was yesterday that we'd have no waking up episodes last night.  Well, at 3:30 am, Claire decided she was hungry.  I got up to feed her and noticed her diaper was really wet, so I knew what that meant.  A fight was about to happen at 3:30 am.  For some reason, Claire throws a heeny hiney when I change her diaper in the middle of the night.  She doesn't do it any other time.  But if she wakes in the middle of the night and I go to change her diaper, she kicks, screams, arches her back, straightens her legs out tight, and wakes the whole house up.  So with her sleeping through the night, we haven't had that issue lately. 

But last night we did!  So that woke her up pretty good and then I knew we would be up a while.  She ate a bottle and fell asleep abuot 3 times and every time I would lay her down in the crib, she would wake back up immediately.  I even fixed another bottle thinking she was hungry and she ate part of it.   Finally she went back to sleep for the 4th time and I laid her down.  It was about 5 am and it was then that I thought maybe I smelled a dirty diaper.  Seriously!  Is that why she couldn't sleep?!?!  I am such a bad mom that I was so tired I couldn't even figure that out?!?!  As I went back to lay in our bed, I watched Claire sleeping peacefully on the video monitor thinking how terrible I was for being aggravated that she wouldn't go back to sleep, when all the while, she had a dirty diaper and was trying to tell me!!

So I went back upstairs, guilt-ridden, to change her diaper and rock her back to sleep again.  It was then when I took her diaper off that I realized it WASN'Tdirty!!!!  I woke her back up for nothing!  I guess she passed some gas as I laid her down that last time and I mistook it for a dirty diaper.  Poor baby! 

Anyways, we are preparing for Claire's first hurricane, Irene.  I think it's a category 3, so I am very scared.  Pray that this thing just goes away!!!

Love,
The Scott Family

1 comment:

  1. 18 1/2 lbs!!! Awesome. I think Greyson is about 19 lbs. Our daughter is a petite little thing though so I think it's just in his genes and has nothing to do with his heart. He eats like a pig.

    Hopefully the hurrican doesn't effect you all too much.

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