Our Hail Mary Pass

I'm sorry I haven't updated the blog in a while. We've had a lot going on.

On June 25th Art and I had a family meeting with the doctors at CHOP. Kennedy was making no progress with anything they tried. Any time they tried to lower her vent settings she would struggle and they'd have to put them back up again. Their recommendation to us was for her to have a tracheostomy. We knew that's what they were going to say but it's a lot different thinking it than hearing it actually from the doctor. They went over everything with us about the surgery and the timing of it all. It was all just surreal. I couldn't talk. Art had to do it all for us. I just couldn't believe this is where we were. We asked them if they could give Kennedy one last dose of steroids to see if they could get her vent settings down. They told us it was entirely up to us and what they thought some of the risks may be. We said we'd think about it and call them in the morning. Since we knew what the doctors were going to say to us in the meeting Art and I talked a lot about what we thought and wanted. If we were going to make such a life altering decision for our daughter we wanted to make sure we dotted all our I's and crossed all our T's. We wanted to go into this surgery saying "We tried everything we could for Kennedy and every road lead to this." That would give us some comfort. This was us giving her one last shot, our hail mary pass, and no matter what the outcome was we'd be ready to accept it. So we called the doctor's in the morning and told them to start her on the steroid.

They started her on Thursday, June 26th and she was responding well to it so they were being very aggressive with lowering her settings. By my Wednesday visit on July 2nd she had handled everything they threw at her so well they were talking about extubating her by the weekend.

Saturday July 5th Kennedy was taken off the vent and put on cpap! I can't even explain how beautiful she was. How wonderful it was to see her without that damn tube! How amazing it was to hear her cry for the first time since she was two weeks old! It brought me so much joy and I started crying! She was clearly agitated and worked up a bit so the nurse suggested I hold her and calm her down. I was able to pick my own little girl up out of her crib and put her in my arms. And we just sat like that for a few hours. When she got restless I consoled her, patted her butt or gave her the pacifier. I was being her Mother for the first time in her life and it felt amazing!

She had an ok rest of the day but that night she started to struggle and Sunday was a tough day for her. Her oxygen was going up and her breathing was very fast. Arthur and I called Sunday night to check in and after our conversation with the night nurse we were sure we were going to get a call in the middle of the night saying they had to put her back on the vent.

Monday morning I called around 5 a.m. and the nurse told me she actually had a pretty ok night. They switched her from cpap to sipap which gives her the same pressures but it's different head gear. It's more secure and she wasn't knocking it off like she was the original. She calmed down a bit and was able to get some sleep. I got to the hospital around 8 a.m. and she was sleeping comfortably.

The doctors came over to take a look at her. They were definitely happier with where she was at the moment but they're concerned about her agitation. When she's calm and sleeping she breathes nicely. But when she's awake she gets very agitated and her breathing increases and her heart rate goes up. Her blood gases and chest xrays have been good and her oxygen has been steady so the doctors asked ENT to come in and take a look at her airways.

They came in today and looked at the upper airways and they saw alot of irritation and swelling so they want to do another bronc so they can look at the lower airways. That will happen some time this week although we're pushing for sooner rather than later.

So right now that's where we stand. This is full day #3 off the vent, the longest she's been off ever! She's still struggling but every day she makes it through off the vent the better it is for her. If it is just that her airways are swollen then she'll just need time for the swelling to go down. They also want to see how she reacts to being off the steroids. Saturday will be her last day. They're expecting her to regress a little bit because that's what usually happens but hopefully it won't be that bad. She'll just continue to fight and do what she does best, surprise everyone! She's fighting like nothing I've ever seen before. This little girl just amazes me!

Keep those prayers coming! She needs them now more than ever!

Love to all,

The Crist Family

3 months old

Happy 3 Months my little sweet pea!! Mommy, Daddy & Makenzie love you so much!

You always love to keep your hands by your face

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!

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

11 weeks old and graduating to a crib!

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

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!

What a weekend

Today we had to leave our daughter at a hospital that is 2 hours away from home. Yes, I know it's the best hospital and exactly where she needs to be but that just doesn't make it any easier.

The last few days have been a whirl wind.  She's had a few episodes but when we left today she was stable and comfortable. The doctors at CHOP definitely have a different few than the ones at Morristown.  They're looking at a trach as a last resort right now. There are other things they want to try first. I'm not sure how I feel about that. I'd be extremely happy if she ends up not needing a trach but a part of me is scared they're just delaying the inevitable.  But they are the experts and I trust them completely.  Right now it looks like ENT will be able to scope her tomorrow or Wednesday. Once we find out what they see we'll know more of what her course of action will be. Right now we're taking it hour by hour and hoping she has an uneventful night.

Today we're just going to focus on Makenzie and make up for the time we missed with her. At some point we'll be out of this storm and all four of us will be home together.  Until then we'll just have to keep faith that everything will be ok!