Learning to Breathe

The last two weeks for our family has been spent learning how to breathe deeply again. It is a funny thing to realize how quickly we resort to shallow breathing to survive the chaos of life turning sideways. When you notice that you’ve not taken a deep breath in weeks, your first instinct is to take a big deep breath. At about the time of our last update, we were just taking that first deep breath as things were going so much better for little Emmie. Over the past couple of weeks, she has continued to improve for the most part. Each day we hold our breath a bit as we wait for the report on how she did the night prior and then relax when we receive a good report. Each morning the anxiety of walking around the corner into the NICU gets just a little bit better and we get more comfortable with the idea that Emmie is going to not only survive this adventure, she is going to thrive!!

She is now completely on room air and has gone 6 days without any oxygen support. This is simply a miracle in our eyes as we’ve heard countless times how no one here has ever seen a “26 weeker” go off oxygen this early. Praise God this girl has amazing lungs!!! (Interesting timing as our “lungs” continue to improve as well ). So far the main concern for little Emmie right now is her growth. She has sort of plateaued in her growth in the past couple of weeks and it has been a struggle for the medical team here to get her enough calories as well as enough nutrition that she can absorb in her temporarily shortened intestinal tract. They call it Short Gut Syndrome and their primary focus has been on trying to slow the motility of her gut down in hopes that the nutrients in her food will have a better shot at getting absorbed before they are dump out of her stoma. It seems like a catch 22 for us as the surgeons need her to grow before they can put her “plumbing” back together at which point she’ll have the benefit of having her entire intestinal tract to absorb all the goodies she needs, yet she can’t get to the weight they need her to because she doesn’t have the full utility of her tummy. So . . . all that to say, her growth has been VERY SLOW. The doctors and surgeons are holding out hope that they won’t have to take a more aggressive approach to getting what she needs in her system. The last resort would be to put in a central line (BROVIAC) that would give her the chemical recipe she needs directly into her bloodstream, thereby bypassing her gut altogether. Obviously, our preference would be to avoid putting anymore holes into our perfect little girl, but if all else fails this will need to be done. Currently, the surgeons at Children’s Hospital remain on standby; more to follow Monday, 20 Sep.

We remain steadfast in our confidence that the Lord has big plans for little Emmie and for our family. His fingerprints are all over her perfectly formed tiny little body and if more scars are what He has in mind for her, then we need to trust that it will be for a greater purpose to bring Him glory. Patience is the theme of the week for us and we are slowly learning to wait and be still as we get the privilege of watching the Lord work miracles in our little girl. We cling daily to His providence and faithfulness after all, trusting in Him is the reason we can breathe a little deeper each day.