You always love to keep your hands by your face
Kennedy Crist was born on March 23, 2014. She was 2 lbs, 2 oz, 14 inches long and 14 weeks early. This blog is to help keep all of her friends and family updated on her progress.
Monday, June 23, 2014
Monday, June 16, 2014
Father's Day
I'm finding it harder and harder to do these posts. Kennedy's due date is creeping up on us and I'm sure it's no secret to anyone that we obviously expected her to be home by that date, or at least close to coming home. That is unfortunately not going to happen. And, as if that weren't hard enough for us to think about, the idea of her coming home seems so far away it hurts. She took a little set back this weekend when they tried to lower her vent setting so they had to put it back up. Of course it was very upsetting but it was also a rude awakening on just how long it will most likely take them to ween her off the vent and to get her home. I just can't help but be so angry and so upset. She's almost three months old and she hasn't been outside a hospital room except to be flown down to CHOP. I have no pictures of her beautiful face without tubes and wires attached. If I want to hold my little girl I can't just pick her up out of her crib. It takes 2 people to help her out and her tubes need to be rubber banded and pinned to me. I try to tell myself that one day this will all be over. That next Father's Day won't be spent in a hospital room but instead in our home in Boonton. But every now and then it all catches up and it's just too much. Luckily I have my amazing family who picks me up and brings me back. It's very hard to be down for too long when my sunshine Makenzie is around! She reminds me to look on the bright side of things! And although my sweet girl is struggling she is getting bigger and stronger every day. And even though it'll take more time than any of us predicted or wanted, she will get home!! And what a home coming she will have!
So despite the rocky start to the day I hope my husband enjoyed his Father's Day!! He's such an amazing Dad and husband. Me and my girls are incredibly lucky!
So despite the rocky start to the day I hope my husband enjoyed his Father's Day!! He's such an amazing Dad and husband. Me and my girls are incredibly lucky!
Sunday, June 8, 2014
It's the little things that count!
So there's not much more to report since Friday. Kennedy has continued to have a good weekend! With the results of the procedure on Friday the doctors say it's just about time now. They're going to try tweaking her settings a little bit everyday to get her to a comfortable spot for them to try to extubate. When that'll be really depends on how she responds but we're not in a rush. Of course we want her off but the next time we try we want her to come off the vent and stay off so if she needs more time than we'll give her time! For now she's getting bigger and stronger every day and that matters a lot!
So for now she will be staying in CHOP. Arthur and I feel it's the best place for her and we feel we have to at least let them try to get her off the vent. I personally feel if she's ever going to get off it'll be CHOP that gets her there. They're really great and the care she gets there is just fantastic! She's reached these little milestones just in the two weeks we've been there. She got to meet her sister, we get to hold her anytime we want, she's wearing clothes, she's listening to music (she loves Norah Jones!), she's maintaining her body temperature, she was never put in a closed top incubator at all since she's been there! In fact, just today she graduated to a crib!! See picture below! These may seem like small steps but to us they're huge! And when we see the difference it makes to Kennedy it means even more!! Hopefully we'll have a lot more milestones to celebrate in the next few weeks!
Love to all,
The Crist Family
So for now she will be staying in CHOP. Arthur and I feel it's the best place for her and we feel we have to at least let them try to get her off the vent. I personally feel if she's ever going to get off it'll be CHOP that gets her there. They're really great and the care she gets there is just fantastic! She's reached these little milestones just in the two weeks we've been there. She got to meet her sister, we get to hold her anytime we want, she's wearing clothes, she's listening to music (she loves Norah Jones!), she's maintaining her body temperature, she was never put in a closed top incubator at all since she's been there! In fact, just today she graduated to a crib!! See picture below! These may seem like small steps but to us they're huge! And when we see the difference it makes to Kennedy it means even more!! Hopefully we'll have a lot more milestones to celebrate in the next few weeks!
Love to all,
The Crist Family
11 weeks old and graduating to a crib!
Friday, June 6, 2014
Happy Friday!
Kennedy finally had her broncoscopy today. They came into her room to get her about 8:30 a.m. and I walked with them to the 4th floor where the operating rooms are. When I was leaving to go to the waiting room I gave her a kiss and she put her fist up in the air like "Don't worry Mom, I've got this!" The nurses and doctors were hysterical!
When the procedure was over the doctor came to speak to me and he said she did great! He said her airways look good!! There was a little scar tissue that they needed to cut away and a little irritation from the tube but otherwise they look perfectly fine! He said there would be no reason from an airway prospective that she couldn't be removed from the vent! It's all about her lungs now. So far the plan is to give her another week to get stronger, give her a dose of steroids and try to extubate her again. But we'll deal with that next week. Right now we're all happy so I'm just living in the moment!
Today is a great day for Kennedy and for Mommy and Daddy! We needed this good news! She's a tough little cookie and all of the prayers she's receiving from all over are really working!
Bless you all!!
Love,
The Crist Family
When the procedure was over the doctor came to speak to me and he said she did great! He said her airways look good!! There was a little scar tissue that they needed to cut away and a little irritation from the tube but otherwise they look perfectly fine! He said there would be no reason from an airway prospective that she couldn't be removed from the vent! It's all about her lungs now. So far the plan is to give her another week to get stronger, give her a dose of steroids and try to extubate her again. But we'll deal with that next week. Right now we're all happy so I'm just living in the moment!
Today is a great day for Kennedy and for Mommy and Daddy! We needed this good news! She's a tough little cookie and all of the prayers she's receiving from all over are really working!
Bless you all!!
Love,
The Crist Family
Sunday, June 1, 2014
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
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!
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