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Heart Warrior

When Jana was born she had two defects in her heart.  One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation)  The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart.  This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.)   Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.img_8755

Yesterday we had to do the ECHO and EKG once again…

First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!!  Seriously, I can’t keep this child still for anything!  Except…yesterday 🙂  We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital.  This meant, Jana got taken out of bed, and put straight in her car seat.  She stayed asleep till about 6:30…normally she is up around 8:00.  So that right there messed her whole schedule up.  We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!)  We img_8750got checked in and they put the monitors on her chest and tummy.  Then, asked us to keep her still for the duration of the test!  For the most part she did stay img_8747still…even fell asleep for about 30 min!!  It was probably the most I’ve snuggled with her in a long time!  But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around!  Luckily they were able to view her heart as well as main arteries in her neck and lower chest area.  How she did it, I img_8757have no idea!!

It was now 10:00, and time for the EKG.  This LUCKILY is a very quick procedure and she is allowed to at least sit up.  They hooked her up to what img_8756seemed like a hundred wires and the test itself took about 2 min!  Our girl was going strong.  She hadn’t thrown a single fit and was still being her adorable self.

Finally it was time to see our Cardiologist.  The last time Jana saw him, she was smitten 🙂  We’ve said he is her favorite doctor because he is the only one img_8751she has ever flirted with.  Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦  But that just meant, mama and daddy could talk to him a little less interrupted.

img_8758 So what did the test show?  Well, her PDA has completely fixed itself.  That means, that is no longer an issue and can now be left alone.  Then came the pause…..  Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart.  Meaning, the right side is slightly larger than the left.  If left untreated, this can cause serious health issues.  So a surgical procedure will be done next summer to fix this issue.  They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open.  He feels waiting one year will help her vessels grow a little.  Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size.  Obviously that is an issue!

So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery.  Which means, I have a full year to stress and freak about my daughter having heart surgery!!  Ugh!!  I am honestly trying to stay positive about it.  Our situation could be much much worse!  We are very grateful for our babies health but it does not make surgery any easier.  It is scary, it is stressful, but it is needed!  Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries.  I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all.  I just need His help a little more to deal with the extra worries.       

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Results Are In

You might remember reading about our sleep study (read about it here) that was done this past November.  Well, yesterday, we received the results.  And let me tell you, it wasn’t was I was expecting or all that thrilled about.  freespirt-3

We met with the pulmonologist and he said that yes in fact, Jana has mild sleep apnea.  She basically pauses in her breathing at least 4.5 times per hour.  He was actually pretty confident that number is probably higher on a daily basis.  Jana didn’t reach dream state during the study.  Maybe it was the 1,00o cords strapped to her tiny body that just wouldn’t let her relax enough. (Please read that last sentence with a very deep sarcastic tone!)  That was it, it was our answer to why it seems like she just can’t sleep, no matter what the day looks like.

What’s the culprit?  Her adenoids and tonsils.  They are taking up way too much precious space in her air ways, and must be fixed.  How do you say we do that?  Well there are two possible solutions.  We can try a slightly experimental way of using steroids and sprays to try to shrink them.  (Yes, her adenoids and tonsils can actually shrink!  Crazy I know!)  However, there is no research that shows this method works with children with DS.  He feels that the surgery would be the best rout to take because it will also benefit her overall breathing and help prevent her from getting sick so often.  The ENT will be the one who figures out the final outcome.

We currently have a follow up apt to see the ENT late March.  Her pulmonologist doesn’t want us waiting that long so he is trying to bump up that apt.  Also, her cardiologist will need to sign off on it to make sure her heart can take this procedure.  (Which yes, there is still a small chance she will need heart surgery as well…she’s going to give me a heart attack!)

So here we are.  After being ridiculously lucky and not having to have any surgeries or procedures, Jana will go under the knife.  It is a very routine procedure and usually they can go home the same day.  However we read they do often keep children with other health care issues overnight for monitoring.  I am not happy with these results.  I almost broke down crying when we heard the word surgery.  She is only 19 months old, and the thought of someone cutting her tiny body terrifies me.  But its for the better good right?  I have to trust that God will bring her through it and she will be 100% better!!  I’m also sure freespirt-1that she will probably have more surgeries in the future and honestly, we are very blessed that she is as healthy as she is.

This is just another thing that DS brings to our world.  Sometimes she will be perfectly healthy, and sometimes we will have to watch her do things that are just going to hurt.