Scout

One of the names Jason and I had on our 'list' of names if we had a girl was Scout.  We obviously ending up choosing Lucia and it couldn't be more perfect.   Jason wrote in a journal he bought for Lucia a couple days after she was born,  he plans to give her the journal some day.    I secretly read the first entry and it's one of the most beautiful things i've ever read- here is just a tidbit of it, its about the day she was born  "...a year and a day earlier, we got back from our honeymoon.  We went to the most beautiful place in the world (St. Lucia) .....so we named you Lucia, after the most stunning place on earth..."       Anyway,  Little Lu has undoubtably earned the name Scout as well.  She has already endured soooo much and she does so without much of a fuss.  She is SUCH A GOOD GIRL.  She cries when she needs us to 'vent' her button (kind of like burping), she may fuss when her pacifier plops out of her mouth or when she has gotten numerous shots, but other than that she is our AMAZING little Lu- a happy, happy scout.

In the last couple nights the pulse ox monitor has gone quite mad- alarming us of desats between 15-30 times!  Jason and I really thought it was a bad sensor- which may just be wishful thinking...   I just spoke to the cardiologist and he wants us to increase her oxygen at night.  Her echo on Wednesday showed abnormal high blood pressure in her lungs (she has had this since she was born) he really thought it would have gone down by now.  So, during the day he wants us to give her tiny little nostrils saline to keep them from getting too dry from the increased O2 (kinda like when you get water in your nose-not fun). So our little scout Lu will have to tolerate more saline...she is also still receiving nebulizer treatments with Pulmicort 2x a day to help with inflammation in her lungs-about 10 minutes for each treatment- again not fun.    We'll see how the increased oxygen affects her desats at night and check in with the cardiologist Tuesday.  If she is still struggling we may have to put her on meds to treat that and also try to evaluate her sleep apnea sooner.   We hope that with time will come growth and improvement for her apnea... Right now her next sleep study is scheduled for July 26th.

On a good note,  Lucia's hearing looks normal!  PKS can affect hearing and or cause deafness so we were soooo thankful of those results!  I had to take a picture of her hearing test - she looks like she has joined a tribe with fancy head and ear jewerly :)

We'll take the good with the bad and continue to pray that our little scout,  Lu, starts to feel better with the higher oxygen.

Thank you Dave and Suzie Gardner for the generous gift and sweet card for Lu, thank you Rosenthals for the nice card as well.  It was also so nice to hear from some old friends- Verity, Tara O,  and Stacy A.

Have a happy and healthy holiday weekend.  God Bless America

Juliet, Jason and Lucia