Wednesday, January 8, 2014


Tonight I am feeling overwhelmed with gratitude for Ellie's trach. and her feeding tube. and for her life.   Even though sometimes these are my #1 stressors, they are not only keeping her alive, but giving her life and allowing her to thrive.

I was just going through my photos and came across this video that my sister took while Ellie was at the NICU at Primary Children's. So many feelings came rushing back of what those 3 1/2 months were like and how helpless I felt. It kind of broke my heart again to watch this video.

This is how Ellie's breathing looked before she got her trach:

I remember when Ismael and I were talking about options for Ellie, because her breathing was not improving and they could not wean her off of high-flow oxygen. We talked about the option of a tracheostomy, but both of us were really scared, and we didn't want that. Deep deep down, I knew that was what she needed. But since it was so deep it took me a while to come to terms with. It was one of those hard decisions you know is right, and even though you know it is right, is still hard to make. I went around the NICU and looked at some of my friends babies who had trachs. We discussed options with doctors. We researched. We prayed.  I talked with family members. I cried and struggled with the decision. I remember one morning, I woke up, and I felt peace about Ellie getting the trach. It was amazing! All of the fear, worries, and stupid insecurities were gone and I knew that she needed her trach. It was like a huge burden had been lifted. Ismael was still not sure, and it took him a little longer to get the same feeling. Once we both knew it was right, we moved on with the decision. 

The morning Ellie had her trach surgery, Ismael had to work and could not be there. He had already taken off so much work. Chrissy was there with me and I am so grateful she was. She was a huge support to me and made me feel so much better about Ellie's trach.  

Once she got her tracheostomy put in, she was a new baby. She didn't have to use all of her energy on breathing. I am so grateful for the trach. It saved her life. We don't know how long she will need it. I am excited for the day that she will get it out, but I am constantly reminding myself to not wish my days away, because I think I will miss these times. I want to enjoy every moment with her while she is passing through these different stages and even though 1 year or more seems like a long time for her to still have it, time has already passed so quickly and it is such a short time in the long run.  

1 comment:

  1. Wow! This does bring back memories! We didn't even know when Ellie would come home at this time.... and now look at her! That was quite the year! I am glad I was able to spend that time with you and Ellie. I don't think I will forget the bed bugs and the prayer mom tried to say in the PMC parking lot ha ha!



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