We have now been home over 24 hours, and let me tell you- it has been the most hectic, yet exciting 24 hours.
Yesterday morning I was told that the eye doctor would come see Olive, however at 3pm when he hadn't shown up I was told I needed to make a follow up appointment with him.
This was in addition to the pediatrician (today), surgery follow up (Tuesday), Pulmonology (end of June) and Gastroenterologist (which will be in 2 weeks but I wasn't able to make the appointment yet).
So I call to make the appointment- it had to be at 8:45 am in Austin (20 miles away). Now I don't know if you know anything about Austin traffic, but dang. Also- the receptionist also made it very clear if I was 5 minutes late, Child Protective Services would be called. Apparently Olive's is treated as she could go blind within 24 hours, so her appointment is crucial.
Got Olive's feeds caught up (since they got behind on the trip home... In traffic). Got her continuous feeds going at 11pm. Woke up and cleaned and switched it at 3am and pumped.
Woke up at 6am. Got ready (if you can even call it that). My mom helped a lot getting Olive ready. Got her feed ready for on the way. Got her diaper bag ready. Oxygen tank, check. Out the door.
Luckily we used Google maps and it tracks the traffic and we made it with 10 minutes to spare!
Cleaned her pump. Realized things I should have brought that would have made it 100x easier.
Got home just in time to eat and pump. Out the door again to the pediatrician... With a feed going again, which messed up. Womp womp. Stopped it, fixed it, finished it.
Finally made it home, exhausted. Got Olive's feed ready, again. Then we all 3 took a short nap. Woke up to clean her feed. Had to catch her feeds up again, so they were almost back to back.
Cooked dinner. And now I'm writing this as I pump, again.
In between I had to start setting up therapist consultations and discuss possible in home nurses.
The two things I learned today:
1. Olive is the best baby ever. She didn't cry once today. She slept or just observed. She even was quite happy when she was awake.
2. I have a new found respect for parents of special needs children. This is not for the faint of heart. Our position is temporary. She will eat eventually. She will be off oxygen soon.
Those of you in it for the long haul: you deserve every vacation, free moment, massage, nap and so on and so on.
I get it though. When I thought I couldn't take anymore, I would hear those tiny sounds. See those tiny hands. Or even better... Her adorable gum filled smile.
All of the parents out there. Those who give up free time for soccer, dance, college prep and so on and so on.
You keep going because of love. A love you can't even describe.
For each of us, this is the life we are given. You do it for the joy that is set before you.
"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne." (Hebrews 12:1, 2 NLT)