Welcome to CHOP!

83 Days Old 

What a big day for our family!

 

We started the day saying goodbye to our incredible NICU family of angel nurses, lactation specialist, music therapist, family care coordinator, front desk receptionists, NICU receptionists, milk room specialists...the list goes on and on. 

We never thought that our journey as a family of three would begin with an intensive hospital stay. We have spent every major 'first' holiday in the hospital: Daddy's birthday, Halloween, Thanksgiving, Christmas, New Years. 

It was very hard to leave and say goodbye to the people who taught us how to be parents- how to change her diaper while wires are draped everywhere, how to bathe her in a little pink tub, what clothes are NICU friendly, what signs to look for when in distress. 

last walkout 

These incredible people also taught us that it is okay to not be okay, that this is hard, really hard, and absolutely not what we imagined or planned for and it's okay to feel that- really feel that... but also spend time believing that we are all going to be okay and that she is going to thrive (because she will!). 

There was a lot of tears leaving; both sad and hopeful ones.

Around noon, Gracie's transport team from CHOP arrived donned in flight suits ready to strap down our girl and hit the road. She was originally supposed to arrive via air, but last minute they changed to ground transport. 

They let her lay on her belly the whole time and she got to go in a baby box. She was a nakey baby in that box, seatbelted in, equipped with baby headphones for the road noise and looked all snuggly. The transport team was amazing, we gave our last kisses and off she went! 

Mommy and Daddy went by car. First they had to check out of the Ronald McDonald House CT. It's hard to believe we had been there for 79 days! 

On the drive, we ended up seeing our girl in her ambulance on the George Washington Bridge! We didn't think we'd be catching up to them since they left so much earlier than we had, but they had precious cargo and were driving very carefully! 

When we arrived in Philly a few hours later, we checked in to Ronald McDonald House Philadelphia while Gracie was getting all settled in. 

Ronald McDonald Philadelphia is absolutely incredible. They offer so many amenities for families. Even during Covid, when most things are closed, it is so nice (a step up from our last accommodations). 

RMH Philly offers families on demand food all day long. The food is nutritious and quick- perfect for on the go to the hospital. Favorite lunch choices of ours are fresh fruit, simply good salad shake jars, yogurts, bagels and sandwiches. They also have snacks for us at anytime- chips, granola bars, fruit snacks, pirate's booty. 

The best part is that every night they have guest chef's cater meals for families. They are served hot at 6pm, or if you are at the hospital then, they will container up the leftovers and put them in a communal fridge for reheating. The fact that we do not have to think about food after a long, emotionally exhausting day at the hospital is a lifesaver. 

The rooms are also amazing. This house is like a hotel style living. There is a seating area of the room and a separate bedroom. We haven't had a sofa to sit on in three months and it really makes a big difference when all your activities are in the room (thanks covid!). 

Gracie settled in nicely. We arrived at the hospital in the early evening. CHOP is extremely impressive. The outside is lit with bright colors, and the interior is sleek, fun and has amazing art installations everywhere you look. You know upon arrival that it is a place where hope lives. 

On our way in to the NICU, we happened to run into the director of BWS. She was on her way out for the night, but took some time to speak with us before leaving. She answered any initial questions we had for her about Gracie's diagnosis and care. She is extremely knowledgable and has a great sense of humor. We instantly fell in love with her (in a strictly parent/doctor way of course). 

After a long journey, we finally arrived at Gracie's bedside. Her nurses are very sweet and took great care of her transition. The NICU is very different than at Yale. This NICU is a pod style, where there are 4 babies per room. It feels more like an ICU setting than Yale did. At Yale, we had our own private room for most of the time (we got moved to a double for the last 10 days while awaiting transfer). 

All of us were exhausted after the long day. Being in the care of people who are experts in BWS makes all the difference. We are super hopeful and excited for this new chapter. 

We just know, this is the last stop before we get to take our girl home! 

Welcome to CHOP :)