Settling In

It has one week since arriving at Blythedale and Gracie is settling in nicely. 

She has met with all of her service providers and her doctors. 

She has been very busy being evaluated by each one of her providers. She will be receiving OT, PT, Speech and infant "school" while here.  We are thrilled she will be getting so many services as we want her to make up any and all milestones she may be behind on. 

We love her medical team led by Dr. Davidson. He comes bedside each morning and evaluates Gracie for the day ahead, then meets with his team to discuss the plan. 

He sat down with us for a long time and spoke to us about her care and plan moving forward. She is on quite a bit of morphine and needs to wean safely off of it before we are allowed to go home with her. 

He did tell us she was in "very good health" for a baby born at 29 weeks gestation and gave her an A for her heart and a B+ for her lungs. We were thrilled to hear that! We always knew she was a little warrior! 

Rehab is very different than the NICU. 

Most of her care is on us (pretty much all) and nursing is few and far between. Obviously, if there is an emergency or Gracie is destating they will come rushing in, but other than that, we hardly see them. 

At CHOP, Gracie was a 1:1 or 2:1 infant to nurse ratio, while here they have 4 or 5:1 and when the other nurse in our pod goes to lunch, its 8, or 10:1. 

This makes it so we want to be there as much and as often as we can be, which is hard being that we have five months of house and life neglect to catch up on. 

I know that we will have time for all of the things. Being with Gracie right now is the most important thing and we are so thankful that we are at this point of our journey.

So what do we need to do in order for Gracie to come home? 

First and foremost, she needs to wean off her drugs. A trach is a major surgery and she was on a lot of sedation for quite a long time. They want to make sure she doesn't withdraw from said drugs, but comes off of them in a safe manner. 

As well, in order to go home, we need to show proficiency in her care. Both of us. This includes g tube care- cleaning, maintenance, dressing, and emergency scenarios, as well as administering feeds and meds. This also includes trach care - cleaning and maintaining her stoma, assessing neck and skin breakdown, necklace (string) changes, as well as trach changes and any and all emergency airway scenarios.  Can you say "go bag"? 

As well, we need to know how to use her vent with expertise. How to take it apart, put it back together, read all the settings and readings, disconnect the humidifier to make it portable, and change out the tubing. 

So far, we are proficient in bathing and wipe downs (yes, they watch you and then sign off on that), g tube care, pushing meds, administering feeds and using the feeding pump, trach stoma care and necklace changes. Not bad for 7 days in 😂. 

In all honesty, Nikko and I have jumped in both feet first since we found out the news she was going to be getting a g tube and trach. We took classes at CHOP in their parent education rooms, as well as immediately were hands-on bedside to get as much training as we could. We are ready to have this girl home! 

So what do we have left? Trach changes, learning the vent and handling emergency scenarios. 

Sounds easy, but really we still have a lot to learn. We will be her primary caregivers and really have to be comfortable for not if an emergency happens, but when it does. 

For now, we're taking shifts with Gracie and try to get time together where we can. Just like all our other chapters, we know this one won't last forever either