Eve of my leave

I go back to work tomorrow, sigh.  It seems like I've been gone for a long time, but not really at home.    Of course like any mom, I'm not sure I'm ready to go back, but I'm also ready for a little distraction.  In the past weeks our parents have been over learning some of her care, her cries and what we have tried to set as a routine.  It is much harder to hand over the reigns of her care than I thought.  But it is really great to have a support team that is willing to do so much for us.

Since the last post we have moved Lucy's bed out of the living room and into our bedroom.   Sleeping on the couch, although comfy, is not great for our backs.  We bought a bouncy chair for the living room so we would have two things to place her in.  She takes her naps in the momaroo and then we have awake time in the chair.  Sometimes when she falls asleep in my lap though it's easier to set her in the chair....see below

Our daytime routine isn't much of a routine.  We wake up between 5:30 and 7 am, then it's pretty much whatever Lucy feels....crying, napping.  We aren't really concerned about a daytime nap schedule because, wait for it, she sleeps through the night.  Although I probably just completely jinxed it.  She will usually crash around eight o'clock in her swing, then we move her to the crib when we are going to bed.  It's a two person job.  One person mans Lucy while the other mans the feeding monitor and oxygen.  We seem to have it down good.

Lucy loves talk time and her mobile.  Some mornings I would turn on her mobile and she would lay in bed watching it smiling.  Other times, we just sit her in the chair and talk to her and she smiles and giggles.  She has started cooing and it is so funny because she gets hiccups every time.  No idea if that is common or not.

 

It is really hard to pack her up to go anywhere and it really takes two people.  Needless to say we haven't been out too much.  We took our first outing to my sisters for a couple of hours and it was a successful trip.  Other than that we have been to the doctor 4 times (for check-ups) and one walk around our condo complex.  She was so excited to be outside she could barely stay awake.

As for medically, she is doing great!  She is now up to 3.57 kilograms (she left the hospital at 2.98) which roughly translates to 7 lbs 11 ounces.  Her cardiologist is pleased with the weight gain.  The only other change we have made since leaving the hospital is her feeds.  We have increased from 16 ML per hour to 21 ML per hour.  She is also almost back to breast milk, yipee!  For three days we are doing half tolerex (fat free formula) and half breast milk.  Then we will switch over to fully breast milk and start fortifying it.  As for her next surgery, the cardiology team looks for three factors before scheduling:

1.  over three months of age (done!  we were there before we left the hospital)

2.  Oxygen saturation's have to be on the decline (target is 75% - 85%).  Lucy's saturation will probably not decline since she is on oxygen.

3.  Weight needs to be between four and four and a half kilograms.

What does this mean....pretty much once she hits the weight mark we will look to schedule the surgery.  Prior to that, she will go in for a cath.  This means they go in through her groin with a camera and take pictures of her heart.  The look at pulmonary arteries and aorta to see if they are able to sustain the next procedure.  Crazy to think that we are already looking to surgery number two.  I spoke with the nurse a week ago and she said with Lucy's weight gain already we could be looking at doing the cath by the end of June.  It is a day procedure, but they keep patients overnight for monitoring.  If results look good, we schedule the bidirectional glenn.

My mom told me that the night before I went to work Lucy would change her patterns (like I did for my mom).  She was right, it took us an extra two hours to get her to bed tonight and as of now I'm a little weary for the rest of the night.  I'll sign off with a peaceful picture of her napping.  I would love to say that nap lasted more than ten minutes but the likelihood of that, slim to none.