Friday, December 20, 2013

We're Coming Home!

It's 9:15am and as I'm writing this we are counting down the few short hours before our family is all together at home under the same roof!  We found out yesterday that there was a chance Cohen would be able to finally leave the hospital but we didn't want to get too excited in case he misbehaved over the evening hours.

Yesterday we learned how to care for his g-tube, feed him, and give him medicine.  He also had to pass a CAR SEAT CHALLENGE!  You may be asking yourself, "What is a car seat challenge?  It is a standard protocol for all cardiac patients that either have a cardiac issue or have just had surgery.  It consists of putting your baby into a car seat with all monitors hooked up to see how they do confined in that small, tight space for the length of your drive home.  This ensures that your baby is safe to ride in a car home and to/from appointments.

At 12:00 our challenge began.  He was placed in his car seat, seatbelt securely fastened, and we were off!  We started our trip in a wagon down the hallways of Floor 15 and we went round, and round and round!  Through the double doors and out and repeated this path for an hour and a half!  He had a few tears here and there, but he did great and passed with flying colors!   This was the last test/goal for Cohen to exit the hospital and Ryan and I were elated.  It was the first time where I truly felt like he actually may be able to go home.  He had almost been discharged two times prior, but complications caused us to continue our stay and we were heavily disappointed when he wasn't able to leave.  This time felt different.  This time felt like there may be a chance that we could finally fully become a family of 4 (well 6 if you count Vinny and Karen).

It's now 10:01 and we have less than 4 hours to go!  We have dreaded this daily sometimes twice/day commute to and from the hospital but at the same time it's almost become routine.
1. Whoever stayed at the hospital comes home and we have breakfast with Isla.
2. We bathe and throw on clothes.
3. We drop Isla off with our nanny.
4. We make the 20 minute drive to the hospital.
5. Show our wristbands at the door (yes, we have 24hour VIP privileges!)
6. Take the elevator to the 11th floor.
7. Transfer to another elevator to the 15th floor.
8. Show our wristbands again at the front desk.
9. Walk down the long, dreaded hallway past rooms that have far more scary things happening in them than our own.
10.  Get 2 pumps of hand sanitizer so we can hold and kiss our baby boy.
11. Spend the day with him, meet with doctors, change diapers, learn about his prognosis...etc.
12. Leave around 3:30pm.
13. Drive back to pick up Isla.
14. Wait for our dinner to arrive from our amazing friends and family.
15. Eat dinner as a partial family and begin to wonder/worry about how Cohen has been doing since we left the hospital.
16. Call the hospital to check on Cohen.
17. Play with Isla and tuck her into bed.
18. One of us gets shuttled over to the hospital by our amazing friend Laura!  (She's the best).
19. We sleep alone (this will be the first night in over 3 weeks we can sleep in the same bed together!).
20. Wake up and do it all over again.

This has been our life for the past 21 days exactly!  This has been our NEW NORMAL.  Although we are going home, we are both very nervous about what the future holds.  Will we be able to survive without the monitors?  YES! Will we be able to care for our special boy as if we were his nurse? YES! For now, we think we have made it through the thick of things...

The house is ready and Isla is waiting his arrival!

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