Forward Progress Again

Last week continued with much of the same, a little forward and a little backward progress. And although we are writing this post with good news to report, it was a really rough couple of days.

Early Friday AM, Caili had her first surgery to insert a central line — a catheter that gets inserted into a major vein in her neck to provide doctors and nurses with a more stable way to give meds and draw blood. Unfortunately, it is a necessary evil because a typical IV line often won’t last in babies her size. Her veins are just too small and can easily collapse.

The surgery had to be delayed slightly because Caili’s oxygen level began to drop lower than is ideal. This was the first sign of what was to come. They were able to perform the procedure, and it seemed to go well. But a few hours later, Caili began to falter again. She was at the highest settings possible for the ventilator she was on yet she wasn’t getting enough of what she needed. The doctors tried switching her back to that vent we described in our last post (the one she had rejected twice in the past) to see if they could make it work for her. But, as we all suspected, that didn’t work.

By the early afternoon, the doctors were very concerned and of course we were panicked. But, after several excruciating hours, the doctors seemed to have figured out that this episode was not too different from a previous episode, where the solution was to give her more fluids and blood. They weren’t sure it would work since things seemed to have been more severe than the prior episode. Yet they seemed to be out of options. But thank God, it appears that it did work. Since Friday night, she has been steadily improving. She has tolerated several reductions in various ventilator settings and is again heading in the right direction!

As for Tim and me, we’re doing as well as can be expected. I will say one thing though, we seem to be learning to cope and accept the good days (relatively speaking) when we get them. When you experience a day like Friday, a day like the past three seem like days to celebrate, enjoy friends and family and even laugh when we can. We have quickly come to realize that Cailin has us wrapped around her tiny little fingers.

I know you’re wondering because it’s certainly a logical question…where do we go from here. Well, we need her to continue to remain stable enough to allow her lungs to heal, grow and tolerate even lower ventilator settings. If she can stay stable for a week (or maybe less) the doctors will feel comfortable re-starting her feeds. Along with the feeds, another week of stability might allow us to do “Kangaroo Care,” which means allowing Tim or me to hold her against our skin. We can’t wait…because as of this post, neither one of us has had the chance to hold her.

Thank you again for your continued support and prayers and let’s hope our next update has continued forward progress to report.