Sunday, February 27, 2011

Broken Heart

As expected, Lenay's PDA did not close on its own.  Her cardiologist explained to us that as long as she remained asymptomatic (which was really amazing considering how large it was) she would not require surgery until she was older.

They continued to follow her closely of course, with routine EKGs and echocardiograms every month or so. 

At her 5 month check-up and echo, I could tell something was different.  The tech of course cannot divulge any info without the doctor reading the results of the echo, but I asked anyway. 

She simply replied, The doctor will go over everything with you.

Something was wrong. 

It was taking way too long.  She left the room a couple times. 

I felt sick.

She came back in with the doctor.  This is not routine.  He took the wand and performed the echo himself.

I looked down at my tiny daughter on the big echo bed.  She was fine, acting completely normal.

I held my breath and looked back up at the screen.

I've seen dozens of echos between my two daughters, but for the life of me I cannot ever tell what exactly we are looking at.  I can make out the pulsing chambers of the heart, and blood flow when they turn on the color, but that's about it.  I'm wishing for a degree in cardiology right about now.

Our doctor then explained to me that one of Lenay's chambers was enlarged.  This meant that the PDA was taking its toll on her heart.

He sat down next to me.  She needs surgery.  And she needs it soon.

It wasn't registering with me.  I protested: But she's acting fine.  And you said as long as she is asymptomatic...

He nodded and said calmly, Yes but this is just the beginning.  Its better to act now before she becomes a very sick baby.

Deep breath.


I knew she would need surgery.  Eventually.  But see in my mind, we had dodged the baby surgery bullet. 

I just wasn't prepared for this.

Deep breath.

God is in control.

Her surgery took place February 12, 2010. 

We found it so incredibly appropriate that her heart was fixed on Valentine's weekend.  God has a sense of humor, I suppose.   

Eric is better at the technical talk, so I just copied his post regarding Lenay's PDA surgery: Eric's blog

While I had hoped to post from the hospital, the family computer needed a password that no one seemed to know, so I did not get an update on Friday.  Lenay’s surgery was a complete success.  Our day started on Friday at 3:30 am since Lenay could eat up until 4 am and we wanted to make sure she had eaten something.  She went back to surgery right on time and surgery started around 8 am.  They called us from the back with updates every 40 minutes or so and the surgery took the full three hours.  They allowed just one of us back there in recovery, so I went ahead to her room as they did want to observe her overnight.  The surgery was not too bad.  We had some visitors from our church who came and sat with us during the wait which helped to pass the time.  The device was implanted into her PDA.  Two xrays and an echo later, we know that it stayed in place and that it was successfully stopping the flow through the PDA.  Lenay spent most of Friday sleeping, but she did wake up enough to eat three times, which was good.  The only real side effects she showed were being pretty swollen on Friday, mainly from the extra fluids they pumped her full of for the surgery.  Most of that was gone by the next morning and she has shown no effects since.  She never even needed any type of tylenol or anything for pain as she never really cried at all on Friday, just mainly slept.  The worst thing that happened to her is that the Bradley Social Work Dept, at the hospital handing out Valentine cards to the kids, gave her a Valentine for a boy.  Her incision area is so small you can’t even tell where it was.  Other than not being able to take a bath for 5 days, she really has no other restrictions.  Our only real instructions were to monitor and just let them know if she seems to be doing worse than she was before the surgery.  At this point, she is basically the same, no real change at all.  I at least expected her to be more sleepy for a day or two but she hasn’t been.  So that is a huge thing to have out of the way.  She will follow up in two weeks and then then probably just a couple of appointments over the next year at which point they will set her free, as long as all goes well.  She is on a 1/4 of a low dose aspirin tablet once a day for 6 months to help reduce the small risk of a blood clot.  By 6 months, her heart wall should have grown around the device and other than on an xray would never be noticeable, even during a surgery. 

I want to say once again, how lucky and blessed we felt to have access to the wonderful doctors and surgical staff at the Children's Hospital. 

We absolutely adore our pediatric cardiologists.  And we are so very blessed.

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