On her way

Gracie has been in the hospital for 244 days by the time she is officially discharged.

... yes, we have a date! And yes, we are counting down!!

I've been thinking lately a lot about the journey, and what a journey it has been!

Our first projected discharge date was around Christmas and over six months later  we're finally getting ready to make the transition to home!

It's hard to believe after so many days and nights in a hospital our girl is finally well enough to go home! I would be lying if I didn't say I was a big nervous, or even a lot nervous, but I think that's normal right? 

Okay, can we just pause for this growth for a moment?! Way to go, baby girl!! 

There are some things I've learned along this journey and I'm sure there will be more as I have the time and space to digest it all. It's a funny thing about running on adrenaline and being in a state of survival mode for so long, you don't have the space to process anything. You just move from one crisis to the next. 

I don't know if I can say I'm looking forward to processing it all, because I have a feeling it is going to hit like a tidal wave, but I am looking forward to having the time to process it. 

For now, here are some things I have learned:

1. So much can happen in a day.

In a day a huge milestone can be met, a med change can make all the difference or it can go the other way and in one day things can turn for the worse. On the hard days it was hard to remember that things get better but the good days, they were amazing. 

2. You are only as good as your nurse on shift. 

Nurses are everything. I've said it time and time again. They are absolutely angels on Earth. Nurses are not only caretakers, but they are the advocates for our babies. The usually know them better than the drs do. 

And can we talk about continuity of care for a minute? We've been at hospitals with primary nurses and without. Ones that have 8 bed pods and ones that have 80 bed pods. It absolutely makes a difference when you have a team of repeat nurses to care for your child.

Some of our angel nurses who have become Gracie's family 

I cannot tell you the amount of times care has been altered based on if a nurse knows her or not. Every single babies baselines are different. When Gracie was first born she was tachynpic at baseline. Nurses who did not know her would pump up her O2 support (which isn't great for preemie eye development). But those that knew her knew to look for other signs of respiratory distress before giving support. We've also had it go the opposite direction where a nurse who did not know her at all looked at her saturation numbers as the primary indicator of respiratory distress. While she was in the high 90s her work of breathing and other signs pointed to something unsustainable. Gracie's numbers have never told her whole story. 

Nurse are also therapists for us parents. They see our tears, celebrate with us during the wins and explain all the things doctors often don't. 

Having a good, caring, knowledgeable and capable nurse makes ALL the difference. 

3. You can look at the world in two ways; as if nothing is a miracle and as if everything is. 

A good friend told me this when Gracie was first born and it has stuck with me. Yes, this situation totally sucks. I actually would not wish it on anyone, but we are also insanely lucky. 

Things could have been so much worse.... they also could have been better, but I digress 🤣

Really we are so lucky. Gracie and I are both alive. She is thriving and healthy. She got what she desperately needed before it was catastrophic. 

We've had some incredible doctors. Doctors who knew enough to go seeking out more, doctors who are leaders in their field, and some who also were humble enough to know that they didn't know. Which to me is equally as important. 

4. This journey is not meant to be taken alone, and you absolutely cannot do it alone.

 Nikko has been so incredibly instrumental in this journey. From literally nursing me back to health multiple times during and post childbirth, to being my mental safe haven and my partner in making some really hard medical decisions for her. 

But also our incredible village who has been there for us every step of the way. Prayers, love, food, care packages, fundraisers. We are so thankful.

I'm sure more will come as the days go by, but for now those are the biggest take aways.

In some ways I know our journey is just getting started, and it will be very difficult in a different way, but I really am looking forward to closing our one chapter and starting the next. 

Let's go home baby girl!