Post Surgery: Day 12 & 13 - Reality.

The last 48 hours have been the most hands on I have been with Zoe in the last 14 days of life thus far.  Even though Zoe isn't my first newborn to care for, she is my first newborn heart baby.  So much of the experience with Londyn goes completely out the window with Zoe.  Caring for her is an entirely new dance... really listening to your motherly instincts, fighting through sleep deprivation because you know your child is experiencing so much more fatigue than you are and learning the ropes in tending to your little fighter.

Until two days ago, our ICU nurses have done everything from feeding and medications to diapering and all night monitoring.  When I first got here I was overwhelmed with anxiety because my new role was unclear.  It didn't take long to get comfortable with all the wires, knowing what her stats should be... and most of all, acclimating to just how fragile and weak her little body truly is.  I don't know if the mom in me will ever get used to the fact that it is completely normal for my baby's lips to turn blue when she cries or that trying to bottle feed her when she is wide awake for just 5 minutes wears her out into a deep slumber.  The little things that are everyday events for other babies are huge accomplishments and strides for Zoe.  This is a reality for us, our family and Zoe that is much more than an adjustment.  It's a completely different way of thinking, reacting and parenting.  

With classes, homework and Andrew's TA job at school, he is still here as much as he can be... offering support, a reprieve so I can rest and most of all, that familiar face that I love.  I know that my hot mess of emotions and hormones after having a heart baby are probably not the easiest to be married to, but handles it all in stride.  Like most men, my husband is not one to show much emotion.  He is a Marine and has been through a lot.   But when it comes to his daughters, he is strong and loving all at the same time.  These girls of ours have him wrapped around their freshly manicured little fingers.  The poor man doesn't have a chance.

After only 2 1/2 hours of sleep yesterday... I was a weeping mess and all I wanted was my Lulu.  I think what set it all off was when our case manager Paula mentioned possibly being discharged in 5-7 days.  Just the day prior, Dr. King was thinking this weekend or early next week... and even today, our other case manager Tami, estimated between Saturday and Monday.  We have so many different people on our medical team and all of them have different gauges, preferences and estimations of what will happen next.  I SO appreciate all of their expertise, but it is so hard to be given the hope that you could be going home in just 2 days from one individual and then hear the extreme of maybe 7 days from another.  If you know me... you know I don't do "go with the flow" very easily and I am quickly learning that the world heart babies is all about GO WITH THE FLOW, ZOE TIME and NO EXPECTATIONS.  God is really taking this opportunity to teach me how to step out of MY box and get out of my comfort zone... because at this point, it's all Him and trusting in His plan.  Don't get me wrong, I don't want to bring Zoe home until they are confident and sure that she is stable and ready, but all of the back and forth is hard on an emotional mama!

In mid-meltdown, I called my dad at work in tears to request a Priesthood blessing and he said he would come over during his lunch break to give me one.  Shortly after that, my mom and sis arrived with Lulu and a Diet Coke.  In the afternoon, I played Hospital BINGO for Zoe and totally won twice!  I got a Barbie and Barbie activity book for Londyn from Zoe.  The day was looking up.

Last night Zoe had an amazing nurse, Laura who was so sweet and did all of her meds, feedings, vitals and breathing treatments at the same time - every 3-4 hours, so that people weren't coming in and out of our room every hour.  It made for nice longer breaks in between getting her all worked up and allowed us to get some quiet time and occasional rest.

Today has been a great day!  Earlier this week, we were told that the goals for discharge are oxygen support, excess fluid and feeding.  Zoe has been working hard to get home soon because she is checking off all of her goals like nobody's business!  She successfully weaned off of her high flow oxygen canula and has just 20 cc's of low flow oxygen left to wean off of before she no longer needs oxygen support at all!  Her plural catheters that have been draining fluid from her lungs will be pulled by Jason, Zoe's PA - tomorrow morning!  WAHOO!  As for feeding, she is fighting so hard to breathe and work with half a heart, that breastfeeding and bottle feeding are asking a lot of her.  We have been working with a speech therapist here to learn techniques that I can do to help Zoe learn to "achieve positive oral experiences" (yes, that is the verbiage that she really used).  Randomly she will take anywhere from 2 mils to 10 mils before we put the rest of her feeding in a syringe and through her NG tube.  It's exciting that she even takes that much without fuss!  We've decided to not push the oral feeding and continue with the NG when we go home.  All I have to do is use a stethoscope and syringe to make sure that the tube is correctly placed in her stomach and then run a large syringe of breast milk through the tube.  Our case manager Tami came in today and said that if she continues to remain stable and we are comfortable, we will probably be able to take her home some time this weekend or Monday.  Can you believe it?

And last but not least, one of the other highlights of the day was when Auntie Sarah took the day off of work, just to help out and bring Lulu up to the hospital for a few hours.  My Grandma has been very sick in the hospital for the past two weeks and my family has been jumping from one ICU to the next.  I am so grateful for Sarah because Londyn's daily visits are a huge part of what gets me through the day.  She arrived with her Hello Kitty Suitcase, sequined purse, hat and Barbie sunglasses.  One look at her, and you know it's going to be a good day.  While Sarah sat with Miss Zoe, Lulu and I went to the playroom on the Peds floor and even enjoyed a music class that was put on by some volunteers.  We then went down to the Heartbeat Cafe (my first time off the floor in two days) for sushi and ice cream.  After that, we took a walk in the Children's Garden.  FRESH AIR!  I got lots of hugs, kisses and love you's from my little diva.

Today was a good day.