Kylee’s Story

Site created on June 9, 2020

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Newest Update

Journal entry by Caryn Bush

Hi Everyone!!!
So it's been a while since I gave an update! Kylee has been home now a little over 2 weeks. She has been doing AMAZING!!! She has so much more energy than she did pre-surgery and she has been eating what feels like non-stop! When we were discharged from the hospital, Kylee had dropped down to 13lbs 2oz- she was 14lbs 12oz when she was admitted. On June 30th, at Kylee's cardiology follow-up, she was 14lbs 8oz, so at that point we were almost back up to the weight she was before her surgery. I'm not sure how much she weighs now, but with how much she is eating, I wouldn't be surprised if she is closing in on 15lbs. 
Kylee's cardiology follow-up went really well! The incision is healing perfectly and the x-ray looked great! Her cardiologist said that from the last echo that they did before Kylee was discharged, that the repair looks better than they had anticipated and that the leak in her mitral valve is very mild. We are still following sternal precautions until we get the all clear at her appointment on July 23rd. Once we get the all clear then we can start doing all of her normal baby things again. 
Kylee sees a physical therapist at Children's eveery week to help with her muscle tone and to help with reaching her developmental milestones. We had physical therapy for the first time after being discharged, yesterday, and she was super impressed with how well Kylee is doing and said that she can tell that we are working on her skills at home and that Kylee looks like she has gotten her strength back that she had lost after surgery. Right now since we can't really work on tummy time, and I am already doing all of the other exercises at home with her, there isn't much of a point in going to physical therapy every week, until we get the all clear from cardiology that we can resume normal activities. It's going to be a pretty nice break though for the next few weeks, to not have to go to Children's on my Thursday's off from work. 
Well that's all of the medical updates for Kylee, now let me tell you about her personality since coming home lol! Kylee has a ton more energy and is talking away and playing pretty much non-stop! Before surgery, Kylee never really cried about anything, but now she has found her voice and goodness does she use it sometimes! Kylee will let you know that she is hungry and that she is hungry NOW! Personally I think it's because when she was in the hospital she didn't get to eat for nearly 5 days, so now she is not going to let herself go more than 4 hours without eating.... not even if it's 2 in the morning LOL! Kylee's sleep has gotten a bit better in the last couple days and she slept until 5 this morning, which is a huge improvement from the 2-3am wake ups that we were getting! 
All in all, Kylee is doing so well and is such a strong little girl!! We are so appreciative of everyone's thoughts and prayers for her and our family throughout this entire journey! Kylee is truly the light of our lives and I can't even begin to tell you how amazing it feels to see her doing so well! I will probably do another update after her cardiology appointment at the end of this month, but until then we will just be enjoying our little girl and hopefully not having anything eventful to report.  
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