On the edge....

It is scary how close we are to leaving Children's Hospital.
I am so excited. I am getting antsy.

However, I am a bit nervous. We have been "living" at Children's since January 22nd. We have come "comfortable" with our surroundings. We know the people there and they know us. We have built relationships and friendships. We have turned floor 7 into a home and community. We have neighbors and friends to support and love us. We have doctors and nurses to keep an eye on us. We have so many people that not only healed Ruthie's heart, but all of our lives. I can't believe I am saying this, but I almost don't want to leave. I really like it there. Its nice. Its comfy. Its homey.

But alas, I am definitely ready to have a "normal" life again. A life that doesn't contain beeping machines, vital checks, weighing diapers, rounds, exams and the list goes on and on. A life free of wires and a stiff hospital bed. A life experiencing the world.

Right now we are waiting on Dr. Cantar's final decision. We have a few scenarios that could play out over the next week.

A... Ruthie gets the biopsy rescheduled for this week(current date 8-17).
She then works on feeds and getting off o2.
She then gets to go home after the cath and come back for clinics.

B.... Ruthie stays in the hospital until the biopsy(8-17).
She then works on feeds and getting off o2.
She would be home a few days after biopsy and return for clinics.

C... Ruthie comes home this week.
She comes back for the cath (8-17).
She would come home on continuous feeds and o2.


Ruthie is tolerating her full feeds (28 oz an hour) in her NG tube. She lost her NJ tube on Thursday and now has an NG tube. Her stomach has not had any issues handling these feeds! WOO HOO!

She is still on .5 L of 02. They haven't wanted to push it yet because they were working on feeds and now weening morphine. They only want to change one things at a time. This way, there is only one variable if something changes in Ruthie's health. It makes much more sense to me to do it this way. I mean what is a few more days in the hospital after 6.5 months?

All and all we are doing rather well. Josh is working. I am being a Mom again and working nights. Ruthie is being an all star:)

Please keep our heart friends in your prayers. Especially our new friends, Dominic, Ella, and Brooke. We pray for strength and courage for them and their family. We pray for guidance and wisdom for their nurses and doctors.

Thank you for the prayers. We are so, so blessed by you.

HUGS!

Laura