Day 200
Well folks, it's official, we've been in the hospital forever!
okay okay, not forever, but we did just hit the 200 day mark. And boy, does that feel like forever!
Gracie is doing amazing!
She is on trach collar for 8 hours a day (tomorrow going to 10!) which means she is spending part of her days off the vent and breathing completely on her own. No vent. No oxygen. Just her doing allll the work.
Being off the vent can look one of two ways for Gracie- trach collar where she has a machine that offers her humidified air straight to her trach or she can have an HME- which is a barrel on the end of her trach with a filter on it to humidify the air.
Since Gracie is not breathing in from her nose or mouth (which is how your body humidifies the air for you) the air has no way of getting that way, so there has to be something there to humidify it for her. The HME takes more effort to breathe through so she is spending a short while on that everyday and most of the time on collar.
We are now using the airvo machine to heat her air for her. Not sure if you have noticed, but our daughter is pale. Between Nikko and I, she didn't stand a chance with that skin color!
Originally trach collar was cold humidified air coming out of the wall. I called it AC air. Well this air is being blown directly into the baby's face all day long. Not connected to the trach, but instead blowing the air in the vicinity of the trach.
So imagine, a pale kid to begin with being shot with cold air all day long... guess what happens to their pigmentation? yup...they get cold and paler.
Well, fun fact...cold and pale are also signs of distress. So on mother's day we had a little situation with a nurse who did not know Gracie (or me for that matter) and panicked that Gracie was going into respiratory distress during her 6 hour trach collar day. I won't get into any details, but mistakes were made, which resulted in her airway temporarily being disrupted and let's just say I am very thankful that I not only was there, but am educated in knowing my child and her baseline as well as signs of distress. Also, don't get me started on the importance of continuity of care.
So now we have a machine that will heat the air for her. She is now spending her days warm, pink and content and it's safe to say no-one can mistake her for being in distress!
On the milestone front, Gracie has made great progress!
She is using her hands to swat objects and reach for faces. She lights up whenever she sees or hears both Nikko and I.
She sleeps through the night and wakes up with a smile on her face everyday.
Gracie is also an expert at taking selfies!
She is 90% of the way to rolling over. First it was that dang tubing getting in her way and now it's her arm. If I had to bet, I would say a full roll over is just days away.
She is doing an amazing job holding her own head up and now that she is off the vent, she is spending more time on her tummy, holding and controling her head so much better!
She is attempting to eat at breast again and is working with a feeding specialist! I am thrilled to be able to get all the benefits of breast feeding again.
She is still recieving all her therapies and we see such amazing growth with her!
200 days feels like a lifetime and we definitely cannot wait to get her home! We had a meeting this week with her doctor and have a potential discharge timeline. We will share more when the time gets closer in case things change, but we can finally see the light!
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