Easton’s Story

Site created on October 10, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Nick Frank

So we were hoping for this to be our last update, as Easton was cruising along this past week. He was drinking out of the bottle consistently, holding his temperature, gaining weight, and even got his feeding tube removed! He was progressing so well that the nurses and doctors started talking about discharge and that we could finaly bring our little man home. Of course, we always knew this could change but it's hard to not get our hopes up, especially since he's been there for so long. We started to get anxious and excited and knew that he had to continue with his feeds, weight gain, and stay away from those dreaded brady episodes. 
When we visited Saturday, he was having a pretty good day and we talked to the nurses and started checking off everything we needed to in preparation to go home. We recently brought the car seat in because with preemies, they have to pass a car seat test. This test requires them to sit fastened in their car seat for 90 minutes without having any brady episodes, proving they would be able to make a long car ride and keep safe. As we left Saturday afternoon, we knew it'd take place at night, and upon passing, Sunday was going to be the day our family would finally be reunited...
However, as things go in the NICU life, baby E just wasn't ready for his journey at Children's to end. That night he failed his car seat test due to having a brady episode and needing stimulation from the nurse to come back, he also didn't gain any weight. We found this out when we called on Sunday morning, crushed, we had to remain strong and realize these things happen for a reason. We visited Sunday and spoke to several of the nurses and got the vibe that, even though they were going to try the car seat test again, we might not be getting our wish and bringing him home. 
Fast forward to today, Easton passed his car seat test, but again didn't gain any weight. He also had 3 brady episodes and long story short, they are putting him on a 5-day brady hold. This means that they will be monitoring him closely and trying to figure out if they brady episodes are still reflux related or if something else is going on. They told us that if everything goes well then we could be looking at taking him home sometime next week. 
I'm not going to lie, we've been very positive in this whole thing, but to be honest, I think we hit our breaking point, at least for a day. We were so close to having him home, to hold him, and snuggle him, just having all of us together. This though, in all honestly, is clearly what is best for Easton. He's letting us know he's not ready, he needs to get stronger, and God has a plan for us and him. We truly are good with this decision, it was just hard to cope in the moment. The love and support we get make things so much easier, and we thank you all for that. We remain positive and trust that our little guy will be home at the exact moment he is supposed to be. All we ask is for your continued prayers that he stays strong and can come home soon.
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