PICU Day 3 ~ (June 27, 2012)

~Exhausted Little Girl~

While today was not an unsuccessful day, it was not a day of progression as we had hoped.  Noelle is still in the PICU; and at this point, we are unsure as to when she will transfer to the step down cardiac unit.  The attending physician for the PICU expects us to be here through the weekend, and the cardiologist seemed to indicate that we will be in the hospital for some time, even once we transfer to the step down unit.  There are still many questions right now and even more seem to be raised as we continue to go along in this process.  Another echocardiogram was performed today, and they spent approximately 3 hours scanning, evaluating, and taking multiple pictures for further review.  We should get a full report tomorrow, but the early report was that the right side of her heart is still not functioning well.  They are increasing her oral medication to help this, and hopefully she will respond accordingly.  A heart catheterization has been mentioned as the next possible procedure that will be done in order to measure the pulmonary hypertension level, so we are mentally preparing for her to be ventilated again for a short time as they will put her to sleep while they perform it.  She finally began to truly sleep again today, for which we are extremely grateful. Any time she has gone through highly stressful instances, she has been overstimulated to the point of extreme exhaustion.  Over the course of Monday afternoon through this morning, she had "slept" {it was not usually restful sleep} a total of approximately 12 hours; and for a baby that typically sleeps 16+ hours a day, it was beginning to take a huge toll.  However, along with that deep sleep today, she began experiencing some significant desaturations, and they are still trying to determine if these are due to reflux issues or if this is still a heart issue.  Consequently, they raised her oxygen flow once again {which they had weaned yesterday} and decided to insert an ng tube into her intestines to continue feeding her.  This should eliminate the reflux as they bypass the stomach and allow them to determine if the reflux is the actual issue or if they need to start her back on the milrinone medication for her heart function.  We are thankful that she can rest through the night and not be bothered with burning calories and losing sleep while eating her bottles and hope that this results in some marked improvement tomorrow, at least in her disposition.  You will notice in the pictures that her poor little fontanelle is quite sunken, and this is due to the diuretics they have been giving her to rid the fluid around her heart and in her lungs.  Thankfully, her lungs looked more clear on the x-ray today so they were able to decrease the dosage of the diuretics and hope her little head gets back to normal soon.

~Playing with her favorite toy~

I was encouraged to receive two smiles today...the first in a week!!  Those little smiles made my day, and she even spent a little time tonight playing with her favorite toy frog.  Those little moments of "normalcy" help tremendously as we wade through the serious issues.  Ultimately, through the numerous details and the host of unknowns, we continue to rest in God's hands and His sovereign plan as He reveals it moment by moment. Thank you for your fervent prayers for our sweet girl, and we look forward to what tomorrow will bring.