Happy Holidays!

H all!

I'm sorry I haven't updated. I wanted to take a break while I was on leave and just focus on Kennedy. Getting her settled at home and set up with her nurses and doctors. I'm happy to report she has been doing great at home! A few ups and downs but that's to be expected especially during the cold season. Since she's been home we've been able to ween her oxygen down. She came home requiring 3 liters during the day and right now she's on about 1.25 liters which can probably go down to 1 next week. We've also been working with her pulmonologist to ween her off a few medications. She's officially off her sodium chlorine,  potassium chlorine and her diuretic. She's still on CPAP for 8 hours overnight but her doctor said she'll probably be off that in the spring. He doesn't want to try anything during the winter months. Once spring comes she'll have a sleep study so they can be sure she does well through the night without it. If she passes we can take her off! One less machine to have clogging up the Crist House. We're going to keep on working on dropping her oxygen and get her off that over the next few months also. All great things to look forward too!

We had a follow up appointment with her ENT. He's planning to do another broncoscopy on her in January to see how her airways are. He did a scope of the upper airways and thought they good but the big picture is below her vocal cords. Art and I are really interested in seeing if there's been any healing in her airways. We're not expecting too much since it's only been 6 months but we're hoping for something.

Growth wise she's gotten very long since she's been home! I think that's her Irish side shining through. Weight wise not so much. The last time we were at the doctors she was 13 pounds so they're a little concerned that she hasn't been gaining enough weight but that has to do with issues we've had with feeding her. I'll spare you all the details and just say it's been extremely challenging! But lately I feel like we've turned a corner. I'm not sure if it's because she getting bigger and maybe the belly can tolerate more or if coming off all the medication did it but the last two weeks she's done great with her feedings. We've been able to increase her volume with minimal spit ups so I'm hoping when we go back to the GI next week they're impressed.

Nursing has been...interesting. I'm happy now with the team that we have set up but boy was it a PITA to get here. Especially in the first few weeks. I had to fire 2 nurses. One forgot to feed Kennedy for 4 hours (she's on a continuous feed overnight) and the other we caught sleeping, twice! And she didn't just nod off, she was full on passed out snoring in the chair in Kennedy's room. But now we have nurses we like (for the most part), especially her day nurses. That's going to mean alot when I finally go back to work. At least I know I can trust those I'm leaving her with.

Insurance has been fighting us on the amount of coverage they want to approve. We've had 16 hours, an 8 hour shift in the morning (8am-4pm) and an 8 hour shift overnight (10pm-6am). They dropped us down to only 8 hours. My doctors and nursing company fought them and appealed the ruling and they eventually approved us for 16 hours through 12/31. After that the fight starts all over again. Since I'm going back to work I'm on pins and needles hoping we get our 16 hours. Otherwise I don't know what we're going to do about watching her overnight.

As I said, I'm going back to work soon.  These last two months with Kennedy have been so amazing.  I'm exhausted physically and emotionally but I wouldn't have it any other way! I've been able to get Kennedy settled here at home. I've been able to monitor my nurses closely and say what I do and don't like. I've taken her to all of her doctors appointments (and there have been ALOT of doctors appointments) and got her comfortable with them and them with her. We've developed strategies and goals for her and I'm so happy I was able to put all of that in motion.

Most importantly I've learned to care for my daughter better than any nurse she has. I've become comfortable with all of her machinery and know what she needs medically. But I've also gotten to know her. Seven months in a hospital is a long time. It's a long time to be away from anyone but to be away from your infant?  Well its just gut wrenching. We missed so much with her and that was what this 2 months was for. I've learned so much about her, what makes her smile (which is just about everything), what makes her sad, what she's interested in, how she likes things. I've seen her get stronger and grow and learn new things right in front of my eyes and it brings me so much joy! She is the sweetest, happiest, calmest little girl I've ever met. Her smile will brighten up the hardest of days and make you forget all your worries. To think of where this little girl started out and to see her now, well it's just simply amazing.

My biggest joy is seeing Makenzie being a big sister. She's wonderful at it! She really is curious about all of Kennedy's medical stuff and wants to listen and learn all about it. My clinical manager came over the other day to show my mom how to care for the G-Tube and Makenzie sat down and listened to her explaining everything. She loves to try to do things for her. Right now she's working on teaching her how to clap. She comes into her room every morning and reads her a book. It's just beautiful to watch. It makes the struggles over the last three years worth it to finally see my children together.

This Christmas will be an emotional one for us. It'll be the first one without my father in law. I know that will be tough for Arthur and his family. They all obviously miss him, especially Rose. But we all also have so much to be thankful for. This year has been the hardest year of our lives. We've been pushed to the brink. Our lives were turned upside down and emotions were always all over the place. But together we've made it through and have overcome so much. Having Kennedy home with us to celebrate will make this season just magical! All four of us will be here to wake up together on Christmas morning and that's all I could ask for. She has completed our family and brought the best out in all of us. She is a special little girl.

One of Kennedy's night nurses who I just adore asked me one morning if I had a dream while I was pregnant with her that she would be someone important. I told her no. She then told me that she was very into numerology and she did her numbers. I don't know much about numerology but she explained it's based on your name and birth date. She told me when she did Kennedy's numbers she received master numbers with both her name and birth date. She said "Katie, she's very special. She's destined for greatness." Considering what she's overcome in her short life, I wouldn't doubt it!

I want to wish you all a very Merry Christmas and the Happiest of New Years!

Love Always,

The Crist Family

Arthur, Katie, Makenzie & Kennedy

 

There's no place like home!

I can't believe it but Miss Kennedy is FINALLY home!!! This past week has been a complete roller coaster and in true Kennedy fashion her discharge came down to the last minute! As you all know Kennedy's discharge was delayed because she got sick. She was feeling 100% better and was set for 10:00 discharge on Monday morning,10/20. Sunday morning we received a phone call at 7am from Children's Hospital saying that while the nurse was giving her a bath her trach popped out. Because of the trauma she threw up 3 times and they were afraid that some fluid went down to her lungs. They ordered a chest x-ray to check for fluid, kept her on the vent all day and decided not to feed her because she vomited and just kept pedialite going all day. At that point her discharge was questionable. I went down to the hospital to see her at about 11 and she looked great! Smiling and active as can be. The x-ray results came back and it showed no signs of fluid. Still, since it was Sunday and the Dr needed to evaluate her on Monday morning we weren't sure if she was going to be released or not.

Monday morning Art and I headed down to the hospital. When I got into her room her nurse looked at me and said "I'm getting her discharge paperwork ready!" I've never been so relieved and happy!! We packed up everything in her room, said our goodbyes and left that hospital forever!!! Art drove home and I rode in the ambulance with Kennedy. Arriving back at the house was amazing! For 7 months we've waited and thought about this moment. To have her finally arrive back in her home with her family. Play with her sister. Sleep in her crib. It's simply amazing.

She's been adjusting very well! Settling in very nicely, like she's been here all along. We're adjusting as well. We have nursing 16 hours a day, 8am to 4pm and then 11pm to 7am. It's strange having someone in the house with us and it's been an interesting first few days dealing with the nursing agency but so far we're happy with them.

My biggest joy is seeing Makenzie and Kennedy together. She does gets jealous at times, but then again she has been an only child for 6 years. But she loves having her home! The first thing she does in the morning when she wakes up is run into her room. She tries to be involved in her care as much as she can. She helps me give her a bath and even helps me give the medications. The first night she was home she didn't leave her side. She put a show on and sat next to her so they both could watch it together. I just love to watch it!

 The last few days as a family have been amazing! Yesterday while Art and I were here alone I was cuddling with Kennedy on the couch and I just started crying. Looking at her and seeing how beautiful and healthy she is at this moment just overwhelmed me. I thought back to the day she was born at 26 weeks, seeing her at 2 pounds and not knowing what life had in store for her. The emotional roller coaster that followed literally every day after that. Seeing her fight for every breath she took, having days where even the doctors were worried, watching her go through 3 surgeries, fighting to get her home. This emotional journey is far from over but we've overcome a huge hurdle this week and words can't explain how amazing that feels!

Thank you all for your continued thoughts and prayers! I truly believe each and every one of you had a part in getting her home with us happy and healthy!

Welcome home to our beautiful baby girl Kennedy Rose Mary Crist! We have been waiting for you for 7 months and now that you're home our family finally feels complete!

Finally leaving the hospital!

We've arrived!

 

 



Discharge postponed

Kennedy's discharge has been pushed to Monday the 20th. She came down with something and needs to be treated first before they're comfortable releasing her.

I will keep you all updated.

Love,

The Crist Family

Discharge meeting?!?!

So let's start off with the most exciting news. Today we had Kennedy's discharge meeting at Children's.  It's official, she'll be home a week from today!!! That's all I'm going to say about it because until she's in that ambulance on her way to Boonton I won't really believe it. It all feels like a dream right now.

There's a lot that has to be done over the next week. Tuesday was my last day of work until the beginning of the year. I'm very thankful that I'm able to take this time off. Not just for myself, because to be honest I'm completely drained, but I just can't wait to spend every minute of the next three months with my little sweet pea! The doctor said to me she thinks the best therapy for Kennedy right now is to be home with her family and I couldn't agree more! Every time Arthur, Makenzie or I walk into the room her eyes light up and she smiles and laughs. I think she's missing us almost as much as we miss her.

She's been doing really well at Children's!  She's about 12 pounds now. She's taking about 30 ml's from the bottle a day. She's still struggling with this. The speech therapist says she has weak muscles in her mouth but she's going to continue to work with her until discharge and then after that we'll continue to take her to speech once a week. They say she probably won't ever drink fully from a bottle but instead go right to being spoon fed but we need to build up her muscles and technique.

As far as her settings go she's been rocking there too! Right now she's only ON the vent for 8 hours a day. From midnight to 8 am she's on CPAP (a type of vent setting) and for the rest of the day she's breathing on her own. She's also off oxygen at night which is great!! If we can continue to work on getting her off both these things full time that would be awesome!! And less machinery needed at the Crist House =)

We have all of her doctor appointments lined up for after discharge and that's going to keep us busy for quite a while! She'll have to see the Pediatrician (of course), the cardiologist, the pulmonologist, the GI doctor and the ENT doctor. She still has a long road ahead of her but I truly believe she'll do even better when she's home with us!

We're so excited to get her home but scared as well! Everything is a little overwhelming and to be honest a little frightening. Thankfully we'll have the nursing here 16 hours a day to help us out. Lots of adjusting over the next few weeks but we're ready for it! Getting our daughter home is all we're focused on right now!! She such a sweet, happy little girl. You would never know everything this little baby went through. Luckily she won't remember either!

I will post after she's FINALLY home! For now enjoy my little pumpkin!

Love to all,

The Crist Family

Getting things done

I'm sorry it's been so long since I've posted. Things have been really crazy since Kennedy arrived at Children's. First, and most important, she's doing great! She had a few little rocky days trying to adjust to life back in Jersey and get used to her new surroundings but she's all settled in now and doing much better.

So far we really like Children's. They're doing a lot with Kennedy and she has lots of appointments during the day. Physical therapy, occupational therapy, recreational therapy and speech therapy. The speech therapist is actually working with her to help her feed from a bottle. That's one of the things we told them that we really wanted them to work on with her since she seems to take her pacifier so well. So far she's doing good with it. She was able to drink 10 ml's from a bottle and has been doing well with her swallow tests. They think she definitely has the possibility of drinking from a bottle full time.

I brought her swing to the hospital over the weekend and put her in it for the first time and she really liked it! The nurses say they put her in there and she just sits there and hangs out. I was also able to give her a bath last week and she absolutely loved it!! These little things that I took for granted with Makenzie just feel so great to finally be able to do with Kennedy!

We had a family meeting with the team after she was there for a week and they were able to assess her. Arthur and I said we wanted her home sooner rather than later but obviously if she needed to be there longer than our hopeful discharge date we'd understand. They told us, since all the machinery she's still on is portable, that they're looking at a possible discharge date of October 9th!!! That's 4 weeks from today! I can't tell you how amazing it feels to have an actual date to expect her to come home! I know it may change but probably not by more than a week or so and even that feels great! To know that in less than a month my daughters will be together under one roof. That when I wake up in the morning and go into Kennedy's room, like I do every morning, she'll actually be in her crib waiting for me. That I won't have to put her back in her crib in a hospital room and leave her to go home. It feels so wonderful!!! I'm hoping and praying that she stays on track and in a few short weeks we'll welcome her home!

In the meantime there is A LOT of stuff that we need to do. Arthur and I continue to train to do the trach care. We did our first trach change together last Saturday and I must say it went pretty well! Kennedy was good to us and behaved. We also completed our vent training which included taking the machine apart and putting it all back together again. Yesterday the medical supply company came to the house for our inspection. They needed to test out the outlets in her room to make sure they can handle all the machines she's coming home with. Luckily we passed and no electrical work will need to be done. They showed me the list of items that they're going to deliver. It's 4 pages long!

We're also interviewing the home nursing companies this week to see which ones we like. We met with Loving Care on Monday, Bayada on Tuesday and we're meeting with PSA Healthcare tomorrow. If anyone has any feed back on any of these companies or recommendations for other pediatric home care companies I'd love to hear about it! I find it very hard to pick a company based on an interview with a client relationship rep.

So that's where we stand right now. Checking the to-do things off the list and preparing for her homecoming! Room is all ready, clothes are washed. We're just waiting on the princess!

Love to all,

The Crist Family

Jersey Bound!

Kennedy turned 5 months old Saturday!  5 months old, 10 pounds and 22 inches long! When you say those numbers and think about where she started from, 2 lbs 2 oz and 14 inches, it makes you realize just how much she has accomplished in her 5 months. What a little miracle!

She continues to do really well! She's sprinting off the vent anywhere from 6 to 8 hours during the day and another 4 at night.

The big news of the week is she's finally being transferred back to New Jersey tomorrow!! That's right, no more Philly!!! Art and I took our last ride down on Saturday and packed everything up in her room. She'll leave CHOP between 9 and 10 and Art and I will meet her at Children's. We're going a little early so we can meet with the team and get her all signed in. We'll be there waiting when her ambulance arrives! We're very excited for this next chapter! She's finally graduating out of the NICU after 5 months! This is real progress and a step closer to getting her home.

I will post pictures of Kennedy in her new room tomorrow.  Prayers that everything goes nice and smooth!

Love to all,

Arthur, Katie, Makenzie & Kennedy

My snuggle bug

21 Weeks Old

Arthur and I are on our way down to Philly to see our little sweet pea so while he drives I thought what a good time to update everyone on our Kennedy. She has been kicking ass!! Let's see, where to start, she's currently a little over 9 pounds. She's doing good with her feedings. Throws up every now and then but nothing the doctors seem to be worried about.

She was supposed to be transferred to New Brunswick last week but the hospital now doesn't have a bed for her so she's still at CHOP. Not sure at this point how long it'll be. We'll get an update this week.

The most exciting news is her progress on the vent. The last time I updated I told you they changed her settings so that it wasn't breathing for her, just giving her pressure support. They continued to ween those settings as well and she handled it all with no problems! Thursday when I was in to see her I talked with the doctors.  They said they were impressed and very happy with her progress. At this point she was at the lowest settings the vent could be on so they were going to start "sprinting" with her. Basically what that means is they'll take her off the vent for a few hours every 12 hours to see how she can breathe on her own. If she does well they'll increase the amount of time she's off until she can stay off the entire day (she'll need to be on at night to sleep). Friday they did 2 hours and she made it the full 2 hours off the vent with no problems!  Saturday she did 4 hours off the vent with no problems! In the words of her nurse who had her the last few days "Kennedy is a rock star!" Art and I are so excited and proud of her!! She's fighting her way right out of the hospital! She wants to come home just as much as we all want her home. Fingers crossed she keeps it up!

Pictures from today's visit to follow :)

Love to all,

The Crist Family

Our beautiful daughter

I'd like to introduce our beautiful daughter, Kennedy Rose Mary Crist.  She'll be 20 weeks on Sunday and for the first time we can see her gorgeous face with no tubes or tape.

She has amazed us since the day she was born and today is no exception.

We love you our little sweet pea!

Love

Daddy, Mommy and Big Sister Makenzie

19 weeks old

Happy 19 weeks to my little girl! Kennedy is doing really great! They lowered her vent settings so that it's no longer giving her any breaths and she's doing all the breathing on her own. It's only giving her pressure support which means it's just pushing air into her lungs. She's been doing great with it so far and her oxygen is still at 21%. After her G-Tube surgery they're going to switch her to an LTV vent which is a mobile, home ventilator and will be the one she goes home with. She's been handling her feedings well too. Hopefully she keeps it up so we can get her back to Jersey!

Daddy was away for the weekend so me and Makenzie took Nana to Philly for a Girlee visit. It was a really great day!  Kennedy looked great and was smiling so much all day! Nana finally got to hold her granddaughter for the first time! It was so wonderful to see!  I also changed Kennedy's strings for the first time by myself. I was so nervous but it wasn't as scary as I thought it was going to be and the more we do it the more comfortable we'll get. I can't wait till she's closer so I can see her any day I want!

Here are some pics from our visit.  Enjoy!

Love to all,

The Crist Family

Happy August!

So we're two weeks post op and Kennedy is doing really well! We've postponed her G-Tube surgery until next Thursday. They're trying to see if she'll need a Nissen fundoplication as well as her G-Tube. Kennedy has had reflux issues in the past. When she arrived at CHOP they adjusted her feeding tube to feed her directly into her small intestine instead of directly into her belly. That helps with the reflux and since she's been there she hasn't had any issues. Now that her G-Tube surgery is coming up they want to see if she still has reflux and if so the severity of it. After her first trach change they moved her feeding tube up to feed her directly into her belly and she handled that pretty well. Then they switched her from continuous feeds to 2 hours on, 1 hour off. She handled that good as well. While all of this was going on they also took her off her morphine and weened her sedation drastically causing her to have withdrawal symptoms. So when they made her feed switch Tuesday to 1 hour on, 2 hours off she vomited after every feeding so they moved her back to 2 hours on, 1 hour off. That was her happy place. The doctors said they can't be sure whether the vomiting is definitely reflux or because of her going through withdrawal. She's having all the other symptoms (shakes, loose stools, restlessness). The doctor said we had two options, we could postpone the surgery by a week and let the medications completely come out of her system and see how she does with her feeds or he said if we wanted they would do the surgery with the G-Tube and the Nissen being that she does have a history of reflux. Doing the Nissen would help with her reflux and basically prevent her from throwing up. However, it's a permanent fix. It isn't something that they go in and "undo." They do say when the surgery is done on kids at such a small age the band does unwrap itself as they grow but it's not guaranteed. Doing a permanent procedure on her that we aren't sure she needs just doesn't make sense so we decided to wait until next week. I'm actually alot happier about that because she's been through alot this week and I'd like her to have the next week to just relax.
 
So that's the plan, she had a "day off" yesterday and they're planning on trying to switch her to 1 hour on, 2 hours off again today or tomorrow. In the meantime she's been doing really well! Her blood gases have been great so they've been chipping away at her vent settings. Hopefully they can chip away a little more during the week. Her oxygen has been awesome as well! She's been breathing 21% (that's room air, what we breath) since the weekend with no adjusting needed. And since they've weened her off her sedation she's had much more awake time and the nurses will be able to start to do a lot more with her.

Arthur & I went to take our first trach class Tuesday night. They taught us how to clean her stoma and the area around it and they also taught us how to change her "strings" which is the little collar around her neck that supports the trach. It was a little overwhelming. Easy to do on the doll but I'm sure when we do it for the first time on Kennedy it'll be much different! I do my first actual change on her tomorrow. They'll also start to allow us to suction when she needs it. And I was able to get her out of her crib on Wednesday all by myself. Sounds strange, but it was awesome to be able to pick my daughter up out of her crib with no help from nurses or respiratory therapists. The idea is to get to the point where if Kennedy needs something or it's time for her care Arthur & I will do it and the nurses will just watch us. That's when we'll know we're ready for her to come home.

Kennedy coming home...it feels closer to me at this point than it ever has. She'll be transferred to Children's Specialized hospital probably within the next two weeks. It's obviously been put off because of the G-Tube surgery being put off. But once she gets there it'll only be for a few weeks and then she'll be home. Finally I can see a light at the end of the tunnel and it feels awesome!!!

I've posted some new pictures of Kennedy below. She's getting so big and these longer awake times are making for some really cute pictures!

Before I go I wanted to share something with you all. My friends Alli (Kennedy's Godmother) and Jill were looking for a way to help us out with the expenses we'll have when Kennedy gets home so they set up a gofundme website for her. The progress this site has made in just 7 days has Arthur and I just stunned, amazed and tremendously grateful! I've found myself saying this a lot lately but there are amazing people in this world. People, some we may have never met, who have supported us, donated to and prayed for our beautiful little girl who has been fighting since the day she was born and yet she manages to look up at me with those beautiful big brown eyes and smile. You all have brought me to tears. I will make sure each and every one of you have the opportunity to meet this wonderful little girl that you continue to think about and pray for! I promise you it'll be worth the wait. She's nothing short of amazing!

http://www.gofundme.com/c1oa8s

Thank you all again! You have given us so much more than I can ever express!

Love to you all,

The Crist Family
Arthur, Katie, Makenzie & Kennedy



4 Months Old

Today is a week since her surgery. She had a rough start to the week. They were trying to keep her sedated enough to keep her still so the trach can heal and settle but not sedated to the point where she was a zombie. It took them a few days to figure out the perfect medication combination but they got it right and she had a better week.

Today was her first trach change and she did great! Now that she's had that done they can start to ween her off the sedation so that she's awake more and they can start to do more activities with her and have her a little more mobile. I got to hold her again today for the first time in almost two weeks and she was just beautiful! As soon as they put her in my arms she fell right asleep and just stayed that way until I had to leave. It just breaks my heart leaving her but she'll be back in Jersey soon! Next Friday she'll have her G-Tube surgery and then a week or two after that she'll be transferred to Children's Specialized Hospital in New Brunswick. While we're there Arthur and I will have to go through a lot of training to learn how to take care of the trach and be her primary care givers. Once they're (and we're) comfortable enough with the training they can release her. We're hoping by mid-September she'll be home. We'll have to have nursing for her when she gets home, especially at night, but at this point we're taking this process one step at a time. We just got through her first trach change and now we're focusing on her G-Tube surgery.

Miss Kennedy turned 4 months old yesterday! It's amazing what my little girl has been through in just 4 months. She's so strong and such a fighter, just like her sister! It has touched Arthur and I how many people have reached out to us to offer support during this time. People I went to high school with who I haven't talked to in years. Ladies I met on a chat board 10 years ago when I got engaged. She has love and prayers coming from Arizona, Florida, Tennessee and even all the way from beautiful Ireland! This whole situation has opened our eyes to many things but most importantly it has shown us that people are kind and good and selfless. It's truly a beautiful thing to see especially when so many bad things could be going on around you. We're truly blessed and so is our family to have such amazing people praying and thinking of Kennedy. With all of you on her side it's no wonder she has such strength.

We love you all,

The Crist Family

Arthur, Katie, Makenzie & Kennedy

 

Arthur picking Kennedy up for the first time. She was just days old.

Kennedy 4 month old!

Kennedy's surgery-UPDATE

Kennedy's surgery has been moved to today some time after 1. Please keep her in your prayers.

Love,

The Crist Family

UPDATE
Kennedy is out of surgery.  She did great!  Art and I went to see her. She was supposed to be sedated but she opened her eyes to say hello to us! She's simply amazing! 

My heavy heart

Kennedy had a broncoscopy done on Friday to check her lower airways to see why she's so agitated. He said that she has subglottic stenosis which is basically severe swelling and scaring right below her vocal cords. This is causing her airways to become severely narrow allowing only a little bit of air to pass through her airways when she breathes.  He had no choice but to put a breathing tube back in and put her back on the vent. They are giving her a high dose of steroids to try to get the swelling down but even if the swelling goes down a bit they don't think it will be enough. She is scheduled for another broncoscopy on Friday and they will also perform a tracheostomy.

There is so much about this surgery that upsets me and scares me but I can't think of that right now. I need to focus on the good things. She can finally start to be a baby and smile and laugh and play. This will finally bring her home to be with her family, all four of us under one roof. And Kenzie can finally start to be the big sister she is dying to be. This isn't a permanent solution, she'll be able to have it removed, hopefully within two years, and Arthur and I know we had the doctors try everything they could for her. This is what our little girl needs.

We're trying to mentally and emotionally prepare ourselves and our family for Friday. You all have been so loving and supportive during the last 16 weeks and it means more to my family than words could ever express.  If you could continue to keep Kennedy and our family in your thoughts and prayers, especially on Friday, it would be greatly appreciated. I will update when I can.

Love to all,

The Crist Family
Arthur, Katie, Makenzie and Kennedy

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