Trachiversary

I think most people would find it odd for us to celebrate the day Evie got her trach, but it was the first day we really met Evie.  June 9th, a Thursday was supposed to be Evie’s surgery to place her gtube.  A few days before, the surgeon came in the room to take a look at her and basically said, “I’m not touching her.” Her breathing was horrible. She was having tons of apnea episodes.  She’d stop breathing in my arms, go limp, and turn purple.

Shudder.

I have absolutely no pictures or videos of her from May 30th-June 9th. It was a moment to moment time and I just couldn’t bring myself to take pictures when she was struggling so very badly.

June 9th before we sent her back. We honestly weren't even sure if she would make it that day.

June 9th before we sent her back. We honestly weren’t even sure if she would make it that day.

So instead of her gtube surgery, the ENT wanted to take a look at her nose and airway. We signed papers to allow a tracheotomy if he deemed it necessary.  Instead he came out triumphant that he had solved the problem. She had tons of scar tissue that grew in her newly opened nasal passages and he cleared it all away.  She seemed to do well after surgery and we were ridiculously grateful to avoid a trach.

That night we got a call that she had gone down hill very rapidly.  I still don’t know all the details.  I didn’t ask. I don’t think I want to know. They had to intubate her again and it was decided she needed a trach. We cried a lot that night, I think, but there was part of us that was glad the choice wasn’t ours. It’s all a bit of a blur.

We just knew that if it needed to be done, we wanted it done right away, but because she was successfully intubated, the powers that be decided her surgery wasn’t a big priority.  No room in the OR on Friday.  Weekends weren’t an option. Evie’s a fighter, though, and she did NOT like being intubated. She yanked that breathing tube out a few times, leading to an emergency each time. They maxed out on the sedatives, trying to keep her comfortable and still.

Monday was full, too, and they wouldn’t allow an after hours surgery. Our ENT called us apologizing for the hospital. He was so angry and anxious about the situation.  Tuesday morning, we finally got her into surgery.  By that point, she was so heavily sedated and struggling so severely, they didn’t even use anesthesia.  Just wheeled her down to the OR, did the tracheotomy in about 15 minutes and sent her back up to her NICU room.

I don’t remember seeing her immediately afterwards.  I thought I did, but no, I don’t. There’s a lot of things I think my mind just blocked out. But the sedation started wearing off and I do remember that.  Having her look at me.  Really look at me for the first time.  No more terror in her eyes.  No more arching and focusing on nothing except that next breath.  She was just a baby. My baby.  What I thought would be one of the worst days of my life turned out to be one of the best.  Honestly, it felt like THAT was the day Evie was born.  Our Evie.  That frightened little infant became Evie that day.  We went from having a sign on the door for quiet because she couldn’t handle distraction from breathing to joking that we needed a new sign saying, “Come on in and play with me!!!!”

Bright eyes!

Bright eyes! And probably trying to figure out how to get that feeding tube out of her mouth!

We really thought she had been doing so well in the first few weeks after her first surgery to open her nose. We truly, with all our hearts, thought she was doing great. We were wrong. Once we saw how well she did with the trach, we could see how poorly she had been doing without it.  We had no reference for what “doing well” was for her until that day. A common theme I hear from trach parents is “We wish we would have done it sooner,” and we are certainly no exception. Knowing what I know now, I wish we had trached her minutes after birth, but we do the best with the information we have at the time.

We are so incredibly grateful for Evie’s trach. It gave us our infant girl back, but it also gave us Evie for the first time. Happy Trachiversary, sweet girl!

Getting so big!

Getting so big! And of course you can’t even see her trach in this picture. Ah well. It’s still there!

 

 

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