Day 37: "When are you coming home?"

Our little All Star

Hi all- This is Malala's mom substituting for her today.  She's tuckered out so I thought I'd step in and help her out by covering the blog today.  Plus I figured it'd be good to cover a frequently asked question:

When do you get to come home?

This is a stupendous question, and one I think about every day.  After 37 days of the NICU, I am ready to just start being a family without sharing facilities with 60 other families.  I find myself anxious for the day that it even STARTS to be a possibility.  But I will share what the doctors, nurses, lactation specialists, and speech therapists have shared with me.  Malala holds that clock/timer.  When she can feed on her own, without losing her heart rate or oxygen level, then we can safely go home.  I never realized that something so fundamental (and fun) like eating can be so difficult to learn.  She is a trooper and we are so proud of how far she has come.  But now, our job is to be patient and let her figure it out.  

We have days that are good.  Like tonight she ate 80% of her bottle!  That is a record of 32mL in one sitting, without a brady or desat.  But we also have days that aren't so good, where she is tuckered out and won't latch or feed for more than a few minutes, and after a half an hour of trying we reluctantly let the pump do its job.  There are feeds when she eats and then her heart rate drops, or her breathing becomes laborious and she starts setting off oxygen alarms.  It can certainly cause alarm in parents that are used to their little one being hell on wheels and exceeding expectations in everything she does.  It is frustrating to see sick time float away, and high turnover of babies going home in the adjacent rooms and just feeling helpless about helping her out.  

After all, she beat the odds at 29 weeks with great apgar scores, healthy lungs, no brain bleeds, easy wean from oxygen, great weight gain, and NO HEART SURGERY needed!!!! A little thing like eating can't hold us down right?  Well, it isn't holding us down, but it is holding us in the hospital.  We are so grateful for the support, meals, gifts, errands, favors, emails, words of comfort, and prayers that have come our way, and we appreciate everyone's patience with us getting around to each and every person for thank yous.  

I realize I may have unintentionally offended some that were unaware of this blog, but my intention was to capture what was happening with Malala, so I can remember years from now how tiny she was and what her journey was like.  I didn't realize she'd have so many loyal followers. My mind is just on her, and when people ask, I update.  If they don't I assume they're getting their info from the interwebs.  I apologize to any that have come to this blog late in the game.  I meant no offense!

To make the long story short, our outlook has changed from getting her home fast to getting her home safely and on her own time.  She's a tough little booger! Thanks for reading!

Hangin with Dad

Kangaroo Care Time is still Mom's Favorite.