Making Progress

Today was an absolutely fabulous day!!

Let me start with yesterday though...Jolene was holding steady and her stats were looking good.  We were informed on Sunday that the doctors wanted to try and get her off of the ECMO machine by Wednesday.  Our first thought: "No way!"  We weren't so sure that it could happen that fast.  Optimistic.  But unsure.  We didn't want to go too fast and have it take a toll on Jolene.  On Monday they turned the machine down a bit and Jolene responded well. So, the doctors started yesterday morning off by saying that they wanted to try and turn off the machine.  Eeek!  She did pretty good for a couple of hours, but then she got tired and they had to turn the machine back on.  (They draw blood every 1/2 hour or so and test the gases in it - Ph, CO2, O2, etc. and determine how she is doing from those results...Jolene's main problem has been too much CO2, meaning her lungs can't keep up the process of getting rid of the CO2 in her blood).  Jolene also had acquired quite a bit of fluid on her lungs, which can be common with the ECMO process, but of course makes it a little harder for the lungs to work.  Quite a catch 22.

So this morning the medical team said that today's x-rays looked better (less fluid) and at 9am they were going to go ahead and try to take her off the ECMO again.  This time Jolene's readings were much more steady and she remained strong.  At 1pm the decision was made to go ahead and take her completely off the machine (for good!) and do a quick surgery to remove the cannulas in the neck (the machine utilizes the cannulas to take the blood out of her body, run it through a machine that oxygenates it, and then returns it to the body (in short)...these tubes are huge for such a tiny little being!).  We were really, really excited but also nervous at the same time.  Once you are taken off the ECMO machine you can't go back on.

The surgery went well and only took about 15 minutes (the big worry in this process was creating clots and launching them into the bloodstream, as well as working with tubes in the arteries!).  After a little bit we went in to see her and she looked great.  It was such a shock to walk into the room and there not be any ginormous machines in there.  It looked so strange!  The tubes were gone from Jolene's neck and the nurse had cleaned her up and made her comfortable.  The doctor then came in to check on her quickly and told the nurse to position her a bit differently to optimize the lung functioning.  Then he stopped and said "Actually, you know what? Mom, would you like to hold her?" Say what?  Are you kidding me?!?!  Of course I want to hold my baby!  So, after calling in one of the respiratory guys for help and maneuvering lots and lots of med tubes, monitors, and the all-important ventilator tubes, my baby was in my arms.  Talk about one happy mamma!  I didn't dare move a muscle, as there were so many things to disturb, but we were warm and snugly, and Jolene was happy and peaceful.  It.  Was.  Awesome.    I eventually had to give her back, of course, but I'll take what I can get.  Jolene then got her catheter out and she immediately opened her eyes and stretched out her legs.  She was feeling good. :)  (Or, at least as good as you can get with wires in your arms and stomach and tubes in your mouth).

We still have a long, long way to go but today there were giant steps taken for sure.  Jolene has proved herself one strong little girl and God has shown his greatness and His mercy on our family.  Thank you again for all of you who have been praying and cheering for our baby...please keep it up!!  Oh...and go donate blood - Jolene has used so much of it these last few days and without donors things like this wouldn't be possible.  Thank you donors!! :)