Sad Summer Day

I'm sitting outside on our patio listening to all the sounds of City living.  I've been attempting to get some much needed work done for some upcoming depositions and my mind is just wandering.  Zoe is asleep, and Mike is putting Zander to bed. Tonight is so peaceful.

As most of you have read, Zoe needs open heart surgery.  They have tentatively scheduled it for November 9th.  Mike took Zoe this morning instead of me so I could take care of Zander.  He's had strep throat since Monday and we thought we were going to have to bring him back in today.  I didn't want to wait around the house and keep looking at my phone, so I took Zander to Target and Bed Bath & Beyond.  Bought some things to reorganize our cabinets, much needed retail therapy.  Mike sent me some videos and pictures of Zoe just smiling and talking away.   She's 18 lbs and some change and 27.75 inches long.  100th percentile for height and 75th percentile for weight.

Zoe did great throughout her echo and Dr. Greco was astonished on how big Zoe was.  We saw her last when she was just over 8 weeks old.  

So, her left side of her heart is enlarged, due to the VSD and increased blood flow.  She has been panting extremely fast, but this is nothing new or out of the ordinary.  She's been like this since we left the hospital.  She was sweaty and the doctors seemed concerned that maybe its not just her disposition anymore.  The cardiologist also said it appeared that she has blue lips.  Every once and a while while we're feeding her, her feet tend to turn purpleish/blueish.  The cardiologists wanted to check her Complete Blood Cell Count (CBC) (number of white and blood cells/hemoglobin) to see if this was related to her heart.  They took her pulse ox and pulses and it was 97 on all 4 limbs (Mike made sure they did it on both hands and toes).  So that's great since you want it in the upper 90's.  They could feel her liver and said that she's retaining water (all the retention is pushing her liver closer to the surface of the skin.   We started on lasix to help with her breathing, sweating and water retention.  In turn, she will be going pee alot more.  Basically her left side of her heart is working harder then her right side.  It is getting bigger at each visit, which has alarmed our doctors.  So she's not in any sort of distress per se, but does have signs of heart failure.  They want to do surgery around 9 months of age so the heart is as big as possible.  Open heart surgery is tentatively scheduled for November 9th.

I knew this day would eventually happen.  Hearing the words today truly shell shocked me.  I dressed her in a butterfly blue dress today.  In some cultures Butterflies mean good luck.  I truly thought we had another year or so before it would happen.   Thank you all for the wonderful support you have given our family.   We (I) will need it more than ever come the day of surgery. 

We have to take her in for chest x-rays and another echo in October before surgery.  We have her 6 month check up with our pediatrician on Monday.  This little girl (and her parents) need a break from doctors.  This year has been so rough.  But looking at her smile makes it all worth it.