The good with the bad

Hello All,

I'm sorry this update took so long. I've had a hard time coming to terms with the fact that Kennedy will indeed need surgery again. The thought just hurts. Let me explain.

October 6th Art and I brought Kennedy back to CHOP for her triple bronc. A triple bronc is a broncoscopy done by 3 sets of doctors: ENT, GI and the Pulmonary doctor. The pulmonologist needed to check her lungs, ENT needed to check her airways and GI needed to check her GI track, esophagus and her reflux. To test her reflux she needed to have a probe in for 24 hours so we had to stay overnight. She was scheduled for 10 am but that didn't happen.  It was not a smooth day, a disaster even, but Kennedy was eventually taken into the OR around 2. Everything went smoothly and the doctors came to meet with us. They said that her swelling has gone down significantly, about 90% was gone! There are still two areas that are swollen right under the vocal cords so they want to give them a few months to heal. We'll have another bronc done in January to check the progress.  Lungs looked great as well!

The bad news is with her upper airway. They said her airway is so narrow she'd never be able to breathe through it on her own and that he wouldn't try any of the caps (the ones that would allow her to speak). He said she wouldn't last with breathing just through her nose and the airway is basically the size of a newborn babies. So our option is airway reconstruction surgery. In the weeks leading up to the bronc I hoped and prayed that she wouldn't need this surgery. it's a very serious, very scary surgery. the doctors will have to take a piece of her rib, cut open her airway and insert the rib piece to widen the airway. Recovery is hard and she'll be in the hospital for about a week. I can't imagine her being in the hospital that long. I know that sounds crazy since she spent 7 months there but she was an infant. she didn't know any different at that time and she didn't know what was going on. When I look at her now, running around and smiling and laughing, the thought of her being there and being in pain just breaks my heart. She's so vibrant and full of life. She doesn't slow down. It's almost like she's making up for lost time. It's so different from when she had her trach surgery, she's so different, and I wish to God she didn't have to go through this.

But with every situation, you have to look at the good and the bad. That's the bad, the ugly. The good is that after a few months of healing they'll be able to take her trach out! This is not the road that Arthur and I were expecting. Then again, nothing during this journey turned out to be what we were expecting.  But it's what has to be done to get our girl healthy!!

Right now we're looking at late March, early April for the surgery. It's good because it's still a few months away, bad because all I do is think. In the meantime we will do what we always do, enjoy every minute of every day and continue to make amazing memories together as a family like we did this summer!

I remember this time last year, Kennedy had just come home from the hospital and we weren't able to take her pumpkin picking or trick or treating. I remember thinking "it'll be different next year" and it certainly was!  Just imagine what she'll overcome in another year. The skies the limit with Kennedy!

Love to all,

The Crist Family

Some Updates

Hello all!

Let's start off with the most important stuff...KENNEDY PASSED HER SLEEP STUDY!!! She has officially been off the vent since May 21st and has been doing great without it! I can't tell you how happy and excited Arthur and I were to finally take her off. It just shows the great progress she continues to make. Our pulmonologist won't make any other changes until we see our ENT and they do a Bronchoscopy on her to see how her airways are. We need to see if they're healing and the condition of the scarring. Arthur and I have gone back and forth on what to do about the ENT and where to take her and we finally decided to take her back to Dr. Javia at CHOP. He's the best and since this is her main issue we want the best taking care of her. So we have an appointment with him on July 13th. We're thinking he's just going to schedule a bronc. So we'll see what happens and go from there.

Her oral feeding is the same, no worse no better. She is starting to take a little water from a cup and she's starting to eat VERY little by mouth (by little I mean about two spoonfuls a day) but I'll take any progress we can get. When she's ready, she'll let us know.

A few Kennedy milestones:

She's not officially walking unassisted but she's pretty close! She does her laps around the couch and makes her way out to the dining room. Once she figures out she can let go and walk we're in trouble!

She finally got her first two teeth! She looks so adorable when she smiles.

She said Dada!!! This is huge for her! As you all know Kennedy's trach prevents her from making any sound or talking. Since she breathes through her trach air never gets past the vocal cords. Well...the swelling in her airways must be getting better because she's starting to "talk" a bit! She's squeaking and starting to make out some sounds. One day we were in the living room and out came Dada! I thought I was hearing things until Makenzie popped her head up and said "Did she just say Dada?" It's the cutest thing because she gets such a kick out of hearing her own voice and tries to do it over and over again.

Kennedy went on her first overnight trip to LBI! And she did great!! She made herself right at home and it didn't seem to affect her at all. In fact, I think she loved being in a new place. Especially since it wasn't a hospital!

Makenzie still continues to be the light in Kennedy's life! I could watch those two interact for hours. Just so touching to see!

I think that's all the updates for now. I will write after we get back from CHOP.

 

Enjoy your Summer!! We certainly are so far =)

 

Love,

 

The Crist Family

It's been a while!

Sorry, we haven't updated in a while. Things have been quiet this winter. The doctors don't like to make many changes during "sick season." But now that we're in Spring Kennedy has a few busy and exciting weeks coming up!

First I will say that Kennedy is doing great! She's made some great progress hibernating over the winter. She has officially been off oxygen for about 3 weeks now!! We weened her and watched her vitals and she did great! So no more oxygen during the day, while we're out. Nothing!

She also has her sleep study scheduled for May 7th to see if she can go through the night without being on the vent. This is HUGE for Kennedy. I'll take her to the Children's Hospital at about 7:30 that night and stay overnight with her. They'll monitor her and watch her vitals. If they feel she needs a little bit of oxygen they'll give it to her but if she really struggles they'll put her back on the vent and we'll just have to try again. I'm really nervous! To not have her on the vent at night would be such a big accomplishment. I will post after the study with the results. Until then, fingers crossed!

Kennedy is now 18 1/2 pounds and 26 inches long. The GI doctor is very happy with not only her weight but her height as well. He said micro-preemies are usually on the shorter side so it's a struggle to get them to put on weight. You don't want them to be too short and too fat. But Kennedy has great height so we're just plugging away with her feedings. She still has some struggles with her feedings but obviously it's not affecting her at all!

Her biggest problem right now is eating orally. She doesn't eat anything by mouth. We're working with her and we go to speech therapy twice a month but there's just no progress. She literally locks her lips and turns her head when we go to give her the spoon. The therapist told us to let her explore the foods and learn to bring them to her mouth so we've been doing that but it's hit or miss. Some days she does it, most she doesn't. My nurse says one day it'll just click and she'll start eating more by mouth but I think her issue is she's never hungry. She gets so much formula during the day and overnight she doesn't really know what it means to be hungry. I'm taking her to a feeding clinic at the beginning of May with her GI doctor and her speech therapist so we can all talk about what the best course of action is for her. I'm hoping we can lower her daily intake and let her get hungry a little so she'll want more foods orally. We'll see! Kennedy has a very unique personality and I tell everyone she does things at her own pace. I'm sure this will be the same and when Kennedy is ready to eat, she'll eat.

As far as her ENT doctor goes there's no update. He didn't do the bronc in January. I'm not happy with him and if anyone has any recommendations for a pediatric ENT doctor please let me know. Otherwise I think we're headed back to CHOP.

As far as milestones go she's pretty much on target and has been doing really well with her physical therapy appointments. She sits up, stands and if you hold her hands she'll walk. She also loves "cruising" along the couch. She wants no part of being on the floor or crawling at all. I think that's because she sees Makenzie and she wants to run after her.

Makenzie has really settled into her role as big sister. Kennedy lights up every time she hears Makenzie's voice and she just loves her little sister. She loves her so much she decided to color her nose with green marker and put glitter all over her head. Do you know how hard it is to get glitter off an infants head? Let's just say she did that on Easter and Kennedy's head is still sparkling. But I just love seeing them interacting with each other. As a mother it is the most amazing thing to watch. I can't imagine how great it'll be as they get older. 

We celebrated Kennedy's first birthday on March 23rd. I look at pictures from last year and I look at her now and you wouldn't think they were the same baby. Nothing that she went through or is still going through has affected her in any way. She is the happiest little girl I've ever met. She smiles and laughs all day long! Mostly with her tongue sticking out of her mouth LOL! I always tell people her happiness now makes me forget the bad that she's been through and the more time that goes on the more of a distant memory it all becomes. She's truly amazing.

So that's it for now. I'm looking forward to the nice weather and taking the girls out more. My goal is to make this summer extra special for them. We all had such a hard summer last year, especially Makenzie. Arthur and I were traveling to Philly every weekend so she didn't get to do much. We've got a few things planned so we're going to make up for that this year! I think we all deserve it!

Love to all,

 

The Crist Family

Arthur, Katie, Makenzie & Kennedy

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