Sweet Home Carolina

I’ve heard it said that life is ‘about the journey, not the destination’,  but I feel compelled to disagree.  The journey from Everly’s birth to getting home was horrible, but arriving home was glorious.   On February 13^th, Charlotte experienced a extremely rare snowmaggedon that resulted in over eight inches ice and snow.  North Carolina was declared to be in a state of emergency, with the governor urging people to stay at home.  Restaurants were closed and employers told their workers to stay at home.  And in perfect irony, after everything Everly went through, her discharge occurred during this ‘once every hundred years’ storm.  As Brad and I debated whether to try to make it home,  Evie laid in her steel hospital bed crying inconsolably.  A neonatologist then came over to us to tell us they would postpone her discharge since it appeared from her fussiness that she was going through morphine withdrawal and would likely need methadone, which would take another seven days in the hospital to run its course.  Our jaws dropped, and as soon as that doctor’s shift was done and he left, we talked to another doctor who agreed with our assessment that she had no other symptoms of withdrawal and he’d therefore sign off on her discharge.  Deciding we had to get her out before someone else interpreted her crying as withdrawal, we decided to make a run for it.  So like any new rational parent, we made the long drive home skating on ice and remarking how unbelievable it was that she was finally come home with us!

Now at home, it’s impossible to take anything for granted.  What a genuine joy it is that we ‘get to’ wake up to feed her every three hours.  While understandably Evie hates when we have to frequently disinfect her distraction device with a combination of skin-stinging agents, I continually relish in how awesome it is that jaw distraction was possible to open up her throat so that she does not need a more permanent tracheostomy and feeding tube.  Our little girl, who was labeled ‘failure to thrive’ is now quickly gaining weight and eating with relentless vigor despite having a newly-placed tongue and having a steel bar going through her mouth.   So to the many, many people who prayed for her, thank you.  We view this all as a gift and see Everly as a sweet blessing we’ve been entrusted with.  We thank everyone for their prayers, friendship, and love as we continue to see her story unfold.

On Friday morning (after hours of no food - yikes!), Evie will have a CT scan done of her skull, to see how the newly expanded jaw bone is healing.  If she does not lay still for the scan, they will give her anesthesia, which of course makes us nervous since we already are concerned about the gross amount of drugs she was already exposed to in infancy.   If the bone has healed, she will have her distraction device removed on March 4^th, and will for the first time in her life be free of any monitor, IV, or metal!  Additionally, since she failed her hearing test in the NICU, we’ll be getting her hearing re-tested once the device is out to see if that helps her hearing. She then should not have to be in the hospital again until late this year for her cleft surgery, which we’re trying to avoid thinking about!  Once the cleft is fixed, she’ll likely need speech therapy as she gets older, and will need major dental work due to the lower jaw being so underdeveloped in utero.  These are all issues we’re happy to deal with now that Everly can at least eat and breathe!

Everly is seven weeks old today and we are astounded, tired, and yet overjoyed at having felt ‘pain in the night but joy in the morning’. (Psalm 30:5)    Thank you, thank you, thank you sweet friends for the many invaluable prayers for Everly!

After 37 long, hard days...peace out NICU!

Evie's first time home, in 8 inches of snow!



Daddy's little cupcake

A girl's gotta learn to accessorize!

 

 Grandpa D and E

 

 

Grace visualized:

This is the corner of the NICU she was in and was expected to stay, confined to her bed and tube fed for another two months...

Instead, this is where she eats from her bottle now!