8 weeks old!

Happy 8 weeks Kennedy!  You're getting so big and beautiful with each passing day.  I love seeing your personality starting to come through. You are such a special little girl!

Here is the latest on Miss Kennedy.  We'll start with good news.  Kennedy continues to grow every day.  She's up to 37 ml's a day and has officially hit the 4 pound mark!!! That continues to be her biggest asset because the bigger she gets the stronger she gets. Her oxygen levels have continued to be around 25% and even down to 21% at some points during this past week.

My last post I said she had to be put back on the vent. This time she didn't fail because of her lungs, her airways were unfortunately red and swollen. When that happens air can't get in and the baby struggles. They didn't put her back on the conventional ventilator. They put her on the NAVA which allows her to do the breathing and predict when she gets support instead of the vent doing 100% of the breathing for her. So good news because she is breathing on her own, bad news because she failed again. Since this is her second time failing her nurse has suggested that we request for Kennedy to have one primary doctor who looks in on her every day and makes decisions for her. The group of doctors that are there are all very good but when a baby starts to show signs of trouble as Kennedy is now the nurse said it's better for her to have one doctor who is familiar with what is going on with her every day. So Art and I had a sit down with our primary on Friday to go over what the plan is for her. Unfortunately they think it's now her airways and not so much her lungs and that is harder to treat. The settings that she is on now are basically the lowest you can go on the NAVA so right now they're letting her grow. The bigger she gets the bigger her airways get and we're hoping the more open they'll be. So some time this week they'll start her on a bigger dose of steroids and try to extubate her again. If she fails again they're going to have to call a specialist in.  I won't even go into what her options from there will be because when I think about it I start to cry. Right now Art & I are focusing on this next attempt and staying positive!  I believe she'll do it this time! The doctor did say he's not going to be so quick to reintubated her if she starts to struggle again and see if she can pull through on her own.

This is a VERY big week for Kennedy! I know she has so much support out there and she really needs it! I will update when I can.

As always thank you all!!!

Xoxoxo

The Crist Family

Sleeping with a smile on her face