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