May 28, 2009
"Faith is walking to the edge of all you know...and taking one more step." My favorite adage for a very long time! Oh, the times it has seen me through!
Well, Chloe is 5 1/2 weeks old, amazing how it seems like such a short time, yet forever in the same time continuem. We have all waited for the day to day progressions and given thanks for the tiniest of details. We have prayed unendingly for the best things for both Chloe and the family. I know that at times I have not even known what to pray for! Chloe's great-grandma tells me to just pray to the Holy Spirit when I am at a loss, that the prayers will be said for me, and I have done just that. It looked as if Chloe was really taking some giant steps toward going home this week, for a while. Docs decided that she was ready to be weaned off that CPAP, which puts a bit of pressure on her lungs and aids her breathing. They began with two hours off the machine, three times a day. That went well, and they moved along fairly quickly to six hours off, three times a day. The seemed fairly rapid to me, but who am I to say? Chloe had the final word by reacting not so positively to the six hour regiment. Her pulse oxygen level kept dropping down below the norm and Jennie thought she was pale and clammy for most of the day. That was yesterday and today they felt she needed to rest and no be disturbed so took a break from the whole thing. I guess they plan on taking a bit slower approach now and we'll see how that goes. It has pretty much been determined that she will go home with the feeding tube that goes down through her nose. Her smaller that normal stomach is preventing the placement of a g-tube. Hopefully, her tummy will continue to grow bigger and that will change before we know it! Right now, I guess getting the breathing down is the goal, although she may end up going home with both the CPAP machine and the feeding tube. Jennie is pretty anxious about that, but has been reassured that they will all have all the training necessary to take care of Chloe before she is sent home. It feels like a very long journey to me, but each one does start with single steps, doesn't it? Jennie has been keeping Kadin and Sierra down in Denver with her more this last week since Sierra got out of school. Chloe having the private room and staying at The Ronald McDonald House helps a lot. They all miss each other when they are apart, and although this is by far perfect, they are together. I really feel for the kids, who are feeling the effects of not being in their home and having such a completely different routine. They both are exhibiting some behaviors that show their frustrations. I decided to bring Sierra home with me yesterday, to have some special Grandma time. We had a great day today, and she decided she wanted to spend another night here. Great by me! Jennie says Kadin does better by himself when he is with her up there, also. He is more of a mommy's boy though and needs her a bit more. Anyway, we're trying our best to meet everyone's needs. Lance probably has the hardest schedule. Works all day in Ft. Collins, drives to Denver, eats, visits Chloe, drives back and gets up and does it all over again the next morning. I'm sure he must be feeling some pretty heavy pressure. Maybe we could all direct our prayers more in his direction for a time. This is such a draining experience, no matter how you look at it. We are being given the energy and tools to move positively through each day, and have learned fairly quickly that you do these days ONE AT A TIME! If it weren't for prayers, support, friends, family, encouragement, understanding, patience and tons of other things being offered by all of you...who knows where we would be. NOW, because you DO offer all of these things...we are prepared for tomorrow. Thank you, and love to ALL! The Praying for Newborn Baby Chloe group on Facebook is amazing! Since getting Josh's help, we are over 500 members. I also have the blog started at www.prayingfornewbornbabychloe.blogspot.com Wherever is easiest for you to access this update, please just do it and invite your friends. Just think about what all this positive action is doing for Chloe! All my love to all, Nancy