A New Heart

 I have been meaning to post something about the outcome of Alessandra’s heart surgery but it’s been hard to find the time.  Her surgery was last Monday (11/19) and everything went perfect!  Her surgeon, Dr. Nigro, came to the hospital on the Sunday before to go over some final details and to answer any questions we had. He came into our hospital room when I was getting out of the shower. I thought I heard his voice so cut myself shaving, threw on some clothes and swung the bathroom door open (I almost slammed him with the door…{gaaah!}).

The entire surgery lasted about 3 hours.  It was the longest 3 hours of my life but we had a ton of support from family that showed up at the hospital to wait with us.  The procedure was better than expected; Ali didn’t need bypass or any blood products.  We were able to see her shortly after the operation and she looked so beautiful.  Her lips and fingernails were so pink!  CHD babies tend to be dusky in color and I had grown so accustomed to her purplish tint that it was incredible to see my sweet baby peacefully sleeping with her new rosy complexion.  A few hours after the operation she was extubated and breathing on her own without trouble. 

For several days the amazing and brilliant nurses at PCH have carefully managed the worst of her pain.  We are still in the hospital as she recovers but she has been weaned off most of her pain meds.  She is now down to just Tylenol and ibuprofen (along with heart meds and antibiotics, of course) and is doing well.  She smiled for the first time today.  She is so strong!!

The only complication we have had is with her chylothorax.  During surgery, her thoracic duct must have been disturbed and now she has a leakage of chest fluid.  This is a common issue after heart surgery and she still has a chest tube in place to help drain the fluid.  The sad part is that the treatment for chylothorax is a diet of non-fat formula for six to eight weeks.  This means that she can no longer take in breast milk. I wasn’t ready to stop nursing and the Enfaport formula doesn’t seem to sit well with her.  I’m still going to try to pump and store breast milk, hopefully my supply can last several weeks this way.  Also, since Ali isn’t quite meeting her feeding quotas she needed to have an NG tube placed (a thin tube that goes through the nose and into the stomach) for feeding.  She hates it and I feel so bad for her.  I know she will get used to it the way she has had to adapt to all these terrible things.  Hopefully she won’t need it for long.

These past two weeks have been so rough for Ali.  Thank you all for your healing thoughts and prayers.  They have been well received and she really needs them.  She now has a pretty neat scar down her chest that we are very proud of.  I will post pictures once she’s able to lose some of her leads and plastic accessories.  Poor kiddo has been through more in these few weeks than many will endure in a lifetime.  The fact that she is already smiling shows the magnitude of strength in the human spirit.  I’m so proud of her.  

I’m also so proud of Bailey! Poor kid has been living out of her backpack for two weeks being bounced around back and forth between my mom’s house and her dad’s.  Every time she visits she shows only her unselfish concern for her little sister.  What an adaptable kid, and if you don’t mind my bragging I want to mention that she got all A’s on her midterm this semester (!!!!!!!!!!!!!!!!!!!!)!

I can’t wait until we can all be home again.

~Melissa