10 Weeks Old!!

My little Princess is 10 weeks old already!! I just can't believe it! And she still has 4 more weeks until her due date. It's just amazing when you really think about it.

She had such a rough week! Between her episode at Morristown that she's still trying to recover from and being transferred down to a new hospital with new doctors and nurses who are trying not only to help her but to get to know her as well. It took her a few days but it feels like she's finally settling in and having better days.

She still hasn't had her broncoscopy yet. She was scheduled for Friday morning but when the doctors did a chest x-ray on her that morning it didn't look good at all. That combined with her high settings on the vent they didn't feel she was stable enough to bring her to the OR for the procedure. Art and I had a long conversation with the doctors that morning. They believe that since she's shown so much improvement over the last few days that the problem isn't her airways and instead she just has a very bad case of Chronic Lung Disease. They will still do the scope but not until her vent settings are better. For now they believe she just needs time. Time to get bigger and stronger.  Time for them to ween her settings lower on the vent. Time for her lungs to heal. That could mean another two weeks on the vent, a month or even another two months. We just don't know. That's the worst part of this all, the unknown. It all depends on Kennedy and how well she does over the next few weeks. She is such a fighter though and Art and I know she's working really hard! Just over this past weekend she's been able to come down a good amount on the vent settings and is in a really good place right now! And she continues to grow,  as of this morning she was 5 lbs 6 oz!

One of the best moments of the weekend was Makenzie FINALLY being able to meet her sister!  She was very excited and did really well. She'd get bored after a while but the family support counselor that was there brought her paper and crayons and a whole bunch of other stuff for her to play with. She made a ton of pictures for Kennedy and we hung them up in her room. She'd occasionally come over and touch Kennedy's hands and feet and pat her butt to make her feel better.  Kennedy had such a better day on Friday and I believe it's because she heard her sister's voice there with her. It was just so amazing to have our entire family finally together!! We've waited so long for that and it was so precious!

So that's where we are now. Art and I have been working on a schedule to try to fit in work, getting down to Philly and family time without disrupting things too much. It's been really hard and we're exhausted but she's in the best place right now and we know they can get her closer to coming home. We just keep telling ourselves that it's a temporary situation and one day soon all four of us will be together under one roof!!

As always thank you all for your thoughts and prayers! You all are truly amazing!

Love,

The Crist Family

Makenzie ' s note to her sister

All bundled up!

A message for Kennedy on the nurses board

Snuggling under Grandma's blanket

All worn out!