one month post trach thoughts

Well it has been a month and change since baby girl's trach surgery. 

Remember the trach surgery I was having SUCH a hard time with? The one that made her look different, feel different...just made her different? 

Here we are, fast forward a little over one month post trach and I can easily say this was the best decision we could have ever made for her. 

Not that this was much of a choice, as we were told she needed an artificial airway to survive... but in all hosesty the trach has changed her life (in a good way).

It has given her a stable airway and allowed her to grow and change and do baby - baby things. 

Yes, so many medical folks told us this would change the game for her.  But when it is your child and they are SO different immediately post-trach,  the thought that this could be positive, well it is something that is hard to believe to say the least. 

So why was it so great? Let me paint this picture...

Pre-trach (pre-intubation even) Gracie was starving for oxygen. If you have never seen an infant in respiratory distress before, then thank your lucky stars because it is absolutely horrible.

 Her eyes got wide, she retracted from her chest (you could visually see her lungs try to suck in more air), the base of her throat also pulled inward with every inhale and she sounded striderous (imagine a weasing/gasping hybrid of horror). 

She also expelled SO much energy trying to breathe. She was exhausted all of the time. We went from 5L of high flow heliox to CPAP of 10 within 24 hours. 

For those who have not lived in a NICU learning all about respiration, she went from barely any support to holy moly support very quickly. 

That still wasn't working. She was pleading with her eyes for us to make it better. She was STARVING for air. 

Then Gracie was intubated and sedated. She had nice quiet awake periods but holding her was challenging as her tubes had to be positioned in a certain way. She also never sat up in a chair. She was still smiling and overall very sweet and happy, but she didn't react as much as she should. There were time when she appeared to look at imaginary things above her head. 

Fast forward to a little more than one month post-trach. 

(Side note and a moment of real life:  tracheostomy is the scariest proposal ever- sure let's create an artificial airway in the middle of my child's throat. If you reading this and your child is at this stage of the game, I feel you and you are so not alone) 

Fast forwards and here we are. Gracie is now a baby-baby. She is laughing, playing, getting services. 

She wakes up happy every single day. She laughs big belly laughs- you can feel her belly contract and jiggle. She is one the floor playing in her play gym- swatting objects to make them move. 

She is recognizing people and voices and is reacting to them. 

She has a favorite book and toy. She sits up in bed, on your lap and in a chair. She is working with providers to gain muscles and control. 

She's taken a bath in a real big girl tub! With a beautiful bathrobe to top it off 🤗

She. Is. Thriving. 

The best part is- she can BREATHE. 

So while a trach was, and still sometimes is, extraordinarily scary, it was the very best choice we could have ever made for her. 

And it's not permanent. Some day we will celebrate her decannulation, but right now- we celebrate her: how far she has come and the happy, amazing, strong girl she is!