Hailey Update 2.26

We were able to get to the hospital in time for the doctor's rounds today. All of the doctors, nurses, & a bunch of other people (who I assume are important as well - it's hard to keep track of everyone!) gather to talk about each of the babies. When they talked about Hailey we were able to be a part of that. To know we're hearing the same update as everyone else is helpful. They also made sure we could ask any questions or share any concerns. It meant so much to feel a part of the treatment team. 

We found out that she had one desat episode early this morning. It was not as long or severe as her previous ones, but still discouraging to hear. It happened after eating, so they are saying it could be due to acid reflux. They will continue to monitor her to watch for anymore. We saw her primary doctor & she said that they will likely start a more specific type of monitoring that will give better details around when the desats happen, if they are true desats, what else is going on when they happen, etc. If she does not have anymore desats for 72 hours while on this monitoring then they will discharge us. If they do happen, then the course of treatment should be a little clearer. 

It was so great to get a clearer understanding of the plan for discharge! And amazing to think that we could be home together as a family in a few days. The doctor was also very reassuring about going home. She said that if babies "need to tell them something" then they will do it while they are here. She said it just always works out that way. All of this was so helpful to hear. 

Hailey has been eating amazingly well. I have gotten to nurse her all day - such a blessing! When I'm not here she is taking bottles & eating a lot. By the time you all meet her she will probably look like a 6 month old! 

Even though it's been a pretty good day in many ways, it's been a hard day emotionally. The days feel like they go too fast being here with her. And leaving is the worst. She's my baby & I want her with me. The more we fall in love with her, the more we miss her in the hours we are away. 

This morning I began thinking about all of the ways God has provided for us. We are beyond grateful. I began listing things in my head that I am so thankful for:

1. We are the lucky ones - there are so many families here facing much more difficult situations. My heart aches for them. 

2. My parents have been with Emma every second we have been away. It is such a gift to know she is well taken care of when we can't be with her. 

3. Every struggle before this has prepared us for this. God was working to make us strong in Him when we didn't even know it - both individually & together as a couple. 

4. All of the people who have shared their stories with me & their NICU experiences. It has helped assure me that there is life beyond this. That this is a chapter in Hailey's story. 

5. My incredible husband. He has been so wonderful - listening, understanding, loving me well, and making me laugh at all the right times (It is God's grace to me that I married a funny guy!) And he is an amazing daddy to our girls. He's my best friend & I wouldn't want to go through this with anyone else. 

6. The team here. Every day I am more & more amazed at them. The nurses who are accommodating, knowledgable, & so loving to the babies. The doctors who take their time with us, never make us feel rushed in our conversations, & who encourage question asking (anyone who knows me shouldn't be surprised that I value this!). And so many others who help to make this experience better than what it could be. 

7. Each and every kind word from friends & family. These unexpected sources of encouragement mean the world. 

8. We miraculously feel so much peace in the midst of all of this. I somehow feel okay with the lack of control we have. If you know me well, you know well that this is for sure not my nature (my bent is quite the opposite actually). I firmly believe that this is a result of the prayers from you all. God is protecting my heart.