PICU Day 11 ~ {July 5, 2012}

~To say we are "attached" is the understatement of the year (although we have actually been even more attached than this in the past!!).  It is difficult to see, but we are hooked to the monitor in the background (with multiple cords), the IV pole (with multiple lines), the oxygen pole and the nitric oxide...I stopped counting when I reached 10 lines.  Just one more thing I have learned not to take for granted....a completely unattached, cord/line/tube free baby.~

~Snuggling with Barbie~

Noelle had one of her best days in quite some time; and while it is still going to take some time to work through these issues and reach a point of stability at a level which she can safely go home, the improvement is marked, and we are thankful to see our little girl clearly feeling much better.  The medical team is moving slowly with the weaning process on her nitric oxide and milrinone in the hopes that she will be able to transition easily to her oral medications which she can continue at home.  This past week, it has begun to hit us what a serious issue we are facing with this pulmonary hypertension.  After her life and death episode with the hypertension in January, we faced a multitude of other issues; and the pulmonary hypertension migrated to the back of our minds with the assumption that it would always continue to get better with time.  We have since learned otherwise and now know that this will be a long and tedious haul that must be closely monitored and managed.  But as I discussed with a fellow NICU mom today, God gives us grace for the exact issues which our own micro-preemie baby faces.  It is funny that we look at our fellow micro-preemie families' circumstances and hope that our own micro-preemie does not go through their neighbors' issues, and they feel the same with us.  Of course, these babies often experience many of the same problems; but then again, they each follow their own course, making each family's journey individually unique.  The road is very difficult, and the tears flow often; but the joys are also tremendous, and God draws us ever closer to Him, teaching us many incredible lessons and broadening our perspective to dimensions never before imagined.  While I would never knowingly choose to walk this path again, I can honestly say that I would not trade this past year; and the little miracle in my arms and the many relationships we have formed are only some of the greatest blessings we now have as a result of this trial. 

Noelle had many visitors again today, including our long time family friend, Barbie, who flew out to see her for a few days, as well as two of her FMC nurses.  I love it that she still recognizes her FMC nurses' voices and responds so sweetly to them.  She also loves the snuggle time in those very familiar arms, and I look forward to the days when she can begin to understand all that they have done for her. 

~Cat Nap with Daddy~

The care plan continues to develop as Noelle responds to various treatments, but once she has weaned from the milrinone and nitric oxide, we can move out of the PICU to the step down cardiac unit and into a regular room (although we are perfectly content with the room we have...it is more than we ever imagined in a situation like this).  We are hopeful this will happen by next week, bringing us that much closer to going home again.  We are mentally preparing to be on oxygen full time, to be on a longer list of medications, and to be extremely limited in our outings for quite some time; but this is for a season of time that will pass, and the consequences of handling things otherwise are simply not worth it.  Thank you for praying through these days of waiting and trusting, and we look forward to seeing how God continues to grow and use this tiny girl for His glory.