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May 05-11

This Week

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My updates have taken to Facebook as things have calmed so much for us. But I thought I’d do another here to explain our first month at home and where Harlee is at. 


To begin, I just want to express how thankful we are for all the prayers we have received. They are 100% the reason we are where we are. I recently came to the realization that while I was in the hospital and those early days in the NICU I suppressed any thought of us not coming home with a baby, I don’t think I allowed myself to go there because had I gone there I wouldn’t have made it through. Talking with Graden I now realize how real of a fear that was, how he dealt with those thoughts every single day, until about a week after Harlee was over her sickness. We were in such a fragile place for so long, and we know it was your prayers that helped us get home, with a baby in our arms. I don’t say it lightly when I say we thank God for our miracle every day. 


That being said, we have the strongest baby girl!! In the 5 days leading up to our departure from the NICU Harlee had many tests done, hearing test, eye exam, heart and head ultrasounds, and a car seat test, all of which she passed! She also had to get through 5 days without a spell that needed stimulation. So 5 days without dropping her heart rate or holding her breath to the point of needing assistance. We had a couple hiccups in those 5 days but the biggest one happened the morning we were going to go home. Graden and I sat in her room for 2 hours while the doctors dissected the incident and decided what to do. They ultimately left the decision up to us. Which sounds terrifying, but they said they know that we are extremely attentive parents, that we know Harlee so well from all the time spent in the NICU, they know Harlee will spend like .5% of the time out of her moms arms 😂and they know they Harlee may likely spell here and there for a while. So that being said we RAN out of there and it’s been sooooo good since then. 


We’ve had a few follow up appointments since then and she’s doing so well. When we left the NICU Harlee weighed 6lbs 1oz, 4 days later she weighed 6lbs 10oz! As of last week she weighs 8lbs 8.6oz, our growing growing girl! We had a follow up eye exam, which was looking good, her blood vessels in her eyes were not completely caught up yet but he figures by our next appointment later this week they will be. Harlee is on a heart monitor to watch for any heart rate dips or any apnea spells. She’s on the machine because she was on caffeine to help stimulate her brain to remember to breathe.  As of Friday Harlee is off the caffeine because she has had ZERO heart rate dips and ZERO apnea spells since coming home!! Such a huge milestone for her. We will keep her on the monitor for one more month to ensure those spells don’t come back without the medication. 


All in all, such a good report. We are so lucky that she doesn’t have more battles to fight and that these few minor things are working themselves out. We are taking in every moment with her and loving being a family of 3. Thank you for following along with us and supporting us, we love you all. ❤️ 


(Sorry for the crazy long post! Feel free to ask any questions, I know how confusing it all is!) 

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