Scott & I spent the day at All Children's over in St. Petersburg. We had 3 different appointments and it was overwhelming to say the least. I had my first OB appointment with the DR that will be delivering Evan. The OB office was definitely not on the same page as everyone else and I'm not really sure where the ball was dropped but they have it all sorted out now. Nobody really knew why I was there, which was annoying of course. Turns out today was the "consult" appointment and they did an ultrasound then we talked to the DR briefly. She told us she would like to deliver Evan at 39 weeks, which will be December 5, though I'm almost positive he is not going to stay in there that long! We will see if she still wants to let us go that long at the next appointment. Evan weighed 4lbs 15oz today.. Just under 5 pounds! He is huge, lol the DR and tech kept referring to his "fat" rolls and his chubby cheeks.. Atleast he will be nice and big for his surgery! :) We will now be having weekly visits to the OB until we deliver. I know it has to be that way but it sucks because I have to take half a day off of work to get down there and back.. Our next appointment was with the surgeon, Dr. Chai. He seemed very knowledgeable and spent a lot of time making sure we understood exactly what was going to happen during the first surgery. He said the success rate for a baby with HLHS and no other complications (like Evan) is about 90%. The surgery should take about 4 hours and will be performed when Evan is 3-4 days old. Also said we should expect about a month in the hospital with him after the surgery. They have to make sure he is breathing good before he goes home and he said the reason for the extended stay is because the baby will need to learn how to eat since he won't have that opportunity right after birth. He is on a team of 3 pedi cardio surgeons and they do about 40 Norwood procedures a year. Dr Chai said he does the most out of the three. Overall he seemed pretty confident that Evan will be just fine thru the whole thing.. Our last appointment was with the perinatal nurse coordinator, Sandra. She gave us a tour of the labor and delivery rooms, and the cardiovascular intensive care unit (CVICU) where Evan will be staying for the entire time he is at the hospital. We will be able to hold Evan right after birth for a few minutes but then they will need to start an IV and he will be moved immediately to the CVICU and Scott will go with him while I am recovering. I hate not being able to go with him too, and it will probably take a lot of convincing so I don't discharge myself against medical advise lol It was SO HARD to see all of the little babies in the CVICU. They have so many monitors and wires going everywhere, it was definitely more than I was expecting to see and I had a hard time handling it.. I was ready to go right then! Moving on, while Evan's in the CVICU we will be able to sleep in the room with him, before and after surgery, and he can have visitors (I'll add visitor info at the end of the post). Unfortunately Elli will only be able to visit for 15 minutes at a time.. :( We also went and talked to the manager of the Ronald McDonald house in the hospital and she gave us a lot of info, we will probably be staying at one of the houses over there for the duration of Evan's stay, just so we have somewhere to "get away" from all of the craziness and take some mental breaks that I'm sure we will need.. There was a lot of information thrown at us today and we still don't feel any more prepared; but atleast we have a general idea of where to go and what to expect.
OK RULES FOR VISITORS! Most of these are All Children's rules, not ours!!
- Only 2 non-parent visitors can be in the room at a time.
- NO children other than siblings can visit.
- EVERYONE must see the care nurse prior to entering the room to receive "clearance" to enter.. I'm pretty sure they are going to make sure you don't have a fever, or have been in contact with anyone who has been sick recently.
- You may not send FLOWERS, LATEX Balloons, or wear PERFUME/COLOGNE
- We are requesting everybody except for our immediate family respect our wish to not have any visitors until Evan has had his surgery and has had his chest closed for a few days. We do not get the chance to bond with him like most parents do and the time before and immediately after his surgery will be very, very precious to us. It will also be chaotic and the less stress we have to worry about, the better. Please do not be offended and respect this decision.
We go back to the OB next week and back to see the pediatric cardiologist tomorrow afternoon so I will update again after that..
Keep praying for Evan! :)