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