post trach update

It has been one week today since Gracie had her trach surgery. 

She is doing great.  

They have weaned a lot of her respiratory support on the vent and are starting to wean her pain meds.  The hope is to have her central line removed tomorrow and give all her meds enterally🤞

She tolerates her suctioning and has had her first trach change. Obviously she didn't love that part.  

I however, am having a really hard time.  

I know the trach is what is best for her and she really needed it. She could not sustain not being able to breathe.  She wasn't making gains developmentally,  she wasn't able to eat by mouth.  It was just all a hot mess.  I KNOW she needed it, and she is better now that she has it, that's the logical part ...  but I am emotionally having a really hard time with how she is now. 

She isn't the same as she was.  She doesn’t look the same, she doesn't feel the same, and to be fully transparent, I wasn't prepared.

She cried today and zero sound came out. Zero... they were silent cries. Face red, scrunched up, screaming with no sound.

Pre-trach this was one of my biggest questions. And they said we should still be able to hear her since air can move above her trach to get to her vocal chords- which are fully in tact.

I didn't hear anything today, and I know as time goes on this might change,  but today it was silent. That made me REALLY sad. 

She's also extremely swollen. This also should go down more, but there is a possibility she won't look like she did pre-trach. 

Sometimes trachs can make it difficult for babies to release all of their fluid in their face, which gives them a larger facial appearance. 

So she looks different, her skin feels different, very different, than she did pre surgery. I was so excited to see her whole face that I wasn't prepared for her to look different. Swollen, yes. But different, no.

And her belly button is different. Yes, I am fully aware of how silly that sounds. 

I LOVED her belly button. It was the cutest outie and it was a physical representation of her first hurdle (that she soared over btw) in her little life. 

In utero, doctors thought she might have had an Omphalocele, where her stomach organs develop through the wall of her stomach- essentially on the outside of her. If she did, she would probably have needed surgery when she was born to correct it. Turns out, it was an umbilical hernia- no organs growing outside her body and no need for surgery. Her little belly button was a physical reminder to her, and me, of her first victory.... and now it's different. 

If we had to do it over again, I 100% would make the same decision. She absolutely needed a trach, but I'm also mourning so much and I promise myself that I would be real and honest with my feelings. 

Some days are hopeful and we easily put one foot in front of the other, while other days are damn difficult and it feels like we are wading in the ocean. 

The undertow keeps getting us and pulling us under. Just as we surface to catch our breath- here comes another wave. We are working so hard to be actively drowning. 

This is hard. This sucks. Today was hard and I am learning that I can be simultaneously extremely grateful and extremely sad.