Charles James

I wanted to give everyone a long overdue update on our Charlie bear.  He is now 35 weeks gestational age and has made a LOT of progress in his 7 week NICU stay. At birth he weighed 2lbs 11oz and as of today, he is 5lbs 5oz.  

At 33 weeks he got his CPAP mask removed and was put on a nasal canula with oxygen.  The nasal canula is much less intrusive and it has made CJ a happy kiddo.  Today they are switching him to a micro flow canula of oxygen and they will slowly begin the process of weaning him off oxygen.  The goal would be for him not to have to come home on oxygen but if needed they will let him in order to get him home sooner rather than later.  I have high hopes he will wean just fine and not need anything.  

He recently got out of his covered isolet and into an open crib at about 33.5 weeks because he learned to regulate his own body temperature. I can now have fun dressing him in cute premie outfits and swaddling him.  

Breastfeeding started at 33 weeks and is going very well. He latches very well and has not needed extra milk through his feeding tube after each session.  We did 2 weeks of exclusive breastfeeding to get him used to it.  If I wasn't there for feedings he was fed through his tube.  They introduced bottles of my breastmilk on Tuesday for when I am not there for feedings. He has done great so far on taking the bottles but just needs to learn to pace himself a bit. They give him 30 minutes to finish his bottle and whatever he does not finish is fed to him through his tube.  Once he is able to get all his nutrition from breast or bottle and gain weight, his feeding tube will come out and that is a huge step on his path to going home.  Charlie is battling bad reflux that will slow down the process a bit but he is learning to deal with it better each day.  Reflux is very common in preemies and will improve as his body matures.  Breastfeeding has been a wonderful bonding experience but it has made my time away from Charlie so much harder, I miss him like crazy when I'm not able to be there.

We are still dealing with his pesky PDA that we told you about in "their story" but he is not showing any symptoms so the plan is to continue to follow-up.  After discharge we will work with a pediatric cardiologist until it closes on it's own or they decide to intervene surgically through inserting a catheter in his femoral artery.  Either way we will press forward and the docs are still hopeful it will close on its own.  

With all of this going on, you would think I wouldn't be struggling with this next change so much but I have.  Last Friday, Charlie was "promoted" to South Hall.  He had been in North Hall since birth and these nurseries are for the smaller, more critical babies, typically born prior to 33 or 34 weeks.  Once those babies get bigger and more stable the normal process is to move them to south hall and begin the 2-4 week process of preparing them for discharge.  This should have been music to our ears but it was very bittersweet.  Throughout our journey we built very close relationships with a few of the boys' nurses and they knew us all so well.  Amazingly they could make an extremely clinical setting feel like home.  While these nurses are still around, they do not work the south hall so the last few days have been like starting over again.  I actually cried the other day because I missed our nurses and wanted to be back on the "other side".  Odd, right, but when you have been there for so long and been through everything we have, you hold on to the few things that make you feel comfortable there.  While the new nurses and setting are very nice, they just aren't what we knew and they don't really know our story.  Now, more than ever, I am just really ready to bring Charlie home and never see a NICU again. Each day it is getting better and I'm sure with a few more days, we will bond more with some nurses in our new area but right now the change is causing a bit more stress than excitement. 

Overall, Charlie continues to amaze us with his strength daily.  If he continues to progress on his current track, the hope is that he will go home by the end of January. We will keep posting pictures and updates and we appreciate everyone continuing to keep sweet Charlie in their thoughts and prayers.