Just when we thought we were in the clear...

This week has been the most trying week of our lives.  Emily's surgery went well and she was doing great post operatively until today.  The surgeon was able to repair both holes and was able to separate Emily's heart valves into four separate ones, making the heart complete.

However, with any surgery, complications can definitely arise.  We were released from the CICU yesterday around 5pm and she was placed in the Cardiac Step Down Unit.  We were thrilled to get our own room.  Emily was in a tremendous amount of pain last night, and unfortunately, was not given enough pain medicine.  I told the nurse that no matter what, she is to be on pain medicine every 4 hours...whether she's crying for it or not.  Around 2am last night, she was in excruicating pain. Screaming into the night, frothing at the mouth, and flailing all over.  I paged the nurse and within 30 minutes she'd received some Loratab and was out like a light, sleeping like a baby :)  From that point on, she's received pain meds and has been much more comfortable.  I didn't get any sleep.  The nurses were in and out of the room every few hours and with Emily crying, it was just really stressful and I was unable to sleep.  At 4am, her day (and mine!) began with labs and Xrays.  I was almost thankful to see the clock tick to 6:30am because at that time I actually allowed myself to begin gulping coffee.  I almost asked the nurse to just hook me up to an IV of it so I could feel the affects immediately.  I have drank an enormous amount of caffeine over the past few days.  I feel like I literally smell like coffee.  I am sweating it out of my pours.  At this point, it seems to be ineffective!  I don't even remember feeling this tired when she was born.  We always had her night feeds when she was an infant, but this is a whole different ball game.  The stress, unknown, and her suffering causes a whole new level of exhaustion.  Tonight, Billy is at the hospital staying with her while I am home with Lilly.  I'll be back tomorrow afternoon and will stay the night again tomorrow.  At times today, I've felt dizzy from just standing from the lack of sleep.  We had lots of visitors today which helped make the day pass and Emily seemed to really enjoy seeing all her family. 

Initially, we were told she may go home tomorrow (Sunday), but she's developed Chylothorax.  This is a condition in which fluid surrounds the lung cavity causing the body to output fat.  So instead of draining blood and other fluids from her chest tube, she's draining pure fat.  The drainage tube looks like she's had liposuction.  This is definitely a serious condition which could result in her having an extended stay in the hospital or possibly another operation. Because her body is excreting so much fat, she is now on a fat free formula.  No more breast milk for 6-8 weeks...which is devastating to me because I know my breast milk is providing so many more antibodies than the formula.  She has not responded well to the formula, throwing up twice.  If she continues down this path, she will have to be fed through a feeding tube.  The doctors said that many babies must be fed this way because the formula tastes awful.  In addition to the fluid building around the lungs, both of her new heart valves are leaking.  This is common after surgery, but if it continues, it will result in her receiving another operation to tweak the leaks.  I cannot imagine her going through surgery once again.  One time was painful enough for us all, especially her.

The days are long and if I must be honest, boring.  Poor Emily is very difficult to hold due to the wires and chest tube and she doesn't particularly care to be moved around.  She is alert and wants to play, but it's painful for her.  Today, she was pretty happy and I hope that despite these new complications, she stays alert and at peace..

Lilly has continuously asked for her and I have talked a lot about the big boo boo that Emily has the the big band-aid that's on her chest.  We Skyped last night and she was able to see her which I think really helped.  Lilly has also been through the ringer.  She's been kept by lots of different people and her world has been turned upside down.  She's enjoyed all the visitors, but it's definitely obvious that she wants her mommy, daddy, and sister Emmie home together.

We are so thankful for all the meals that have been brought to us and the constant out pour of well wishes and prayers.  Tomorrow is Sunday...say and extra prayer at church for Emily and her recovery process.  Your words of encouragement go a long way for Billy and I and we are forever grateful!