What’s Next?

First off, let me apologize for being such a negative Nelly the last post about Brinnlie.  Some days I just get overwhelmed by the just of everything, and it helps to “let it out”.  Thank you to everyone who left words of encouragement.  Your words and prayers are felt and help so much…we’ll get there, but I'm not guaranteeing that you’ve heard the last of some ranting.

 

So, what have we heard since then?  They weaned Brinnlie off the nitric oxide for a day and got another echo.  It showed slight improvement but not enough to say goodbye to the nitric.  As of yesterday, she was on 5 ppm of nitric and increasing dose of Viagra.  They are going to slowly increase the dosage of Viagra for a couple days then do an echo to check her PH gradient and go from there.  If there is improvement they will go down by 1 on the nitric ppm, then again, slowly increase her dosage of Viagra, then echo, then wean by one, etc., until the nitric is gone.  Given her history of weaning from the nitric, they decided to take it real slowly this time and let her body adjust for a time between weanings, hoping that her ‘receptors’ in her lungs will take to the Viagra and not so much to the nitric.  So, it’s going to be a more slow transition and will be longer on the coming home bit.  Once they have her dosage stable and her PH is responding, they will begin to focus on her feeds.  She has been doing well with the 15 cc’s she gets every three hours, so they may begin to increase this slowly too.  They don’t want to push her too much and cause her stress, which would increase the strain on her heart.  We’ve got a longer haul ahead of us than what we’ve anticipated the last little while, it’s frustrating and hard, but she’s where she needs to be at this time receiving the needed attention that in the long run will have her stay home once she comes home.  The answer we’ll give to those who ask when?  Thanksgiving?  It’s easier to get into the mind set of longer than sooner.  For now, we’ll get through the week and pray that she will respond to the Viagra and see progress with her PH.

Yesterday, Trevor and I got to go down in the afternoon and stay for a couple of hours.  It was bliss!  She had just got done with cares, was lying in her bed, cooing and grinning at her mobile…we began talking and playing with her and she just smiled ear to ear.  She’s such a little baby!  I told a sister today at church and she said she’s our baby that just lives at a different address…she’s just hanging out till they give her the go ahead to go.  I tried to give her her bottle, but she was too tired and just cuddled up to my chest, fell asleep and stayed there for the entire time we visited.  Although she slept through our visit, I loved every minute of it!  If only they had recliners at the bedside, I would have loved to just nap along with her as I did with her siblings when they were that ‘big’.  I say ‘big’ ‘cause she’s at 9 and a half pounds and I have to bring some bigger size clothes next time, she’s growing fast still and is still a nosey neighbor.  The other day a baby came across from her and her nurse said that Brinnlie had to be up watching what was going on or else she cried!  I think she feels that it’s her place and has to know what’s going on with everyone’s comings and goings.  She loves to sit in her boppy and see everyone and gives them a cheeser when given attention.  I just love her.

And, she has Great-Grandpa Jarrett’s dimples!

(Of course, when the camera comes out, her cheeser isn’t as great as it really is!)