Little Lady Lu-sha

We have had a lot of people ask how to pronouce her name- its just like the beautiful island where we honeymooned- St. Lucia (Lu-Sha).  If you have not been you should go :)

It is a big week-not as big as last week-thank goodness- but every day is new and different AND easier.  After our weekend of receiving all of Lucia's accessories we have started to adjust.  Feedings through her button no longer take an hour to set up, medications don't take 20 minutes to measure, alarms going off don't make us panic-we can tell (sort of) a false alarm vs a real alarm and real alarms have not been frequent- yay!

Jason and I brought home our little girl 4 days after she was born.  She was in our home, cared for and loved and guarded for a month and she was doing great.  Once your child is diagnosed with something different and special you tend to panic when your baby acts like a baby- WHY is she crying, we MUST feed her on the exact minute that the doctor told us,  is there something wrong with her eyes or is the light too bright, is she purple from low oxygen or is it just the darkness of the room... We have to remind ourselves that she is a baby and babies cry, eat when they are hungry, get fussy and don't always look the same- ALL the time.  We CAN do this and there is no perfect 'prescription' from the doctor.  "When in doubt- look at your baby", that is something easier said than done at times but we are getting there...
Lucia is on oxygen 24/7,  she is on her pulse ox machine when she is relaxing or asleep, she is fed through her g-tube when she eats and that is it.   A few wires, a whole lot more finesse and math calculations and we are getting there..

We are half way through our doctor appointments for the week- tomorrow is a big day. The ENT(ear,nose and throat doc), Pulminologist -Margarita Guarin, and the follow up surgery visit with Steve Rothenburg.  Lucia has seen more doctors in the first 6 weeks of her life than Jason and I have seen in our lives combined.   Every visit is scary but every visit we know more and know what we need or don't need to do for the time being.   We look at her progress (10lbs 6 oz),  the sparkle in her blue eyes, and her cute legwarmers (they are so cute) on her chubby legs and we smile and sometimes cry.  She is our nugget and the light of our lives.

Nights and days are getting easier and every day we are more astounded by the outpouring of love that our friends and family are giving.  We have been touched by friends that we have not talked to in over 10 years, or friends that we have never even met.   We have bonded with families of other pks kids and parents of other children with special needs.  It is incredibly humbling to feel the power of prayer and energy.  The world is a good place.  We continue to pray and hope for Lu, that she will not have severe complications, and if she does that we will be able to figure it out.

Lu would like to say a special thanks to her auntie Adam and Lala for watching her tonight, her boyfriend Shaw for sending her cupcakes and good luck to her PKS friend, Elizabeth 'Lizzie' Gold, for her upcoming g-tube surgery.

Love, Juliet, Jason, Lucia and our furry children, Frieda and Blue.