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