Update 8/20

My perinatalogist's genetic counselor that I was seeing in Newburgh before we moved called me yesterday simply to ask how I was doing.  She also asked me how I liked the perinatalogist in Lexington that they referred me to.  She was pretty upset with the fact that they hadn't given me any referrals to IU and Riley's in Indianapolis yet being how far along I am.  She offered to do it herself!  She then called me back today with a day full of appointments next week! (8/30)  I will be seeing a sleu of various doctors, nurse staff, etc. and also taking a tour of the CICU.  We will also be doing another echo cardogram and an anatomy scan (ultrasound).  The perinatalogist will also be talking to be about "planning" Eli's birth.  The counselor told me they are likely going to want to induce me around 38-39 weeks.

In other news, I have recently met a girl whose son was born with TGA and delivered at the same hospital 2 years ago.  She has been so insightful!  There's nothing like talking to a person who has been there to cry with, and feel like they "get it."  She said it has also been therapeutic for her to help someone walk through it.
Some of what she has shared has been extremely hard to hear....however, the more we know what to expect before hand the better.  She told me that immediately after her son was born he was rushed to another room that they call the "island" to be stabilized and prepped for transfer to Riley's children's hospital.  She didn't even get to see him!  They then wheeled him in for 2 seconds and let her touch/kiss him, but not hold him.  She said she was not allowed to hold him for 10 DAYS (because it is too dangerous to move them with the ventilator and everything hooked up to them.)  And the only reason they let her is because that is the day she had a mental breakdown....the nurses begged the doctor and he agreed, and she had a team of nurses help her hold him.

To me and Brian, this is the hardest information we have learned so far.......we simply cannot imagine seeing our baby cry and not being able to pick them up.

I do like the fact that they will let Brian go with him when he is being stabilized and transferred.  He will be able to take pictures/videos etc that he can bring back to show me.  She also said that they did not let her leave until the next day because technically she was a "patient" too, so they had to make sure she was good to be released first.  If she would have had a c-section it would have been much longer.

She said that many "heart" parents stay at the Ronald McDonald House, if there isn't a waiting list.  There is also a smaller Ronald McDonald house inside the children's hospital that has a stocked kitchen, places to take naps, showers (you just have to schedule them) etc.  Many non-profit organizations come each night to make a big family dinner for all the patient's parents.

Her son was in the hospital just under 6 weeks, but this is because he had issues after surgery which are not the norm.  Eli's stay will most likely be 2-3 weeks if everything goes well, which normally these kids do well  after surgery.

We will be updating our blog again on Friday when we have all of our appointments at IU & Riley's.  We are looking forward to more definitive plans associated with Eli's birth.