It's Been a While..

I guess it's been a while since I've posted. Life has been a little crazy with work and doctors appointments, and when you throw in the other duties of everyday life...it doesn't leave much time left over.

I've been keeping busy with substituting, which is wonderful! And, for the past 3 weeks I've had at least 1 doctors appointment if not 2. Last week Anthony and I traveled to Egleston to meet with Dr. Kanter and one of his nurse practitioners. I say travel like it's hours away, but it really only took us about 40-45 min. to get there (granted it was in the middle of the day with barely any traffic). Parking was pretty crazy but once we made it into the hospital it was pretty easy to find our way to the outpatient cardiac services office.

Dr. Kanter does not perform surgeries on Wednesdays and instead schedules a few sessions to meet with parents of children who will be having surgery. Our appointment was towards the end of the "scheduled time period" for these meetings and there were a few "chatty" parents ahead of us according to one of the nurses, haha! We ended up waiting about 45 minutes before Margareth, a nurse practitioner, came to give us a tour of the CICU (cardiac intensive care unit). This is where Josiah will be before and after his surgery. The entire unit is open so there are no individual rooms, and the beds that the babies are in are called Ohio beds...my dad enjoyed the name ;). They are pretty neat, not the enclosed little beds that you would think of. They are actually square, open, and can be raised to an angle. Margareth took us to see a little baby girl who had just had similar heart surgery that day. I was kind of surprised they allowed us to see her but I am thankful they did. I don't think I can even remotely fully prepare myself for when that will be Josiah laying in that little bed, but it definitely allowed me to prepare for what all he will be hooked up to. It only took about 30 seconds before I started tearing up while margareth was explaining what everything was and why it was needed. Looking at a tiny little baby connected to a breathing tube, IVs, drainage tube, a tube down their nose, monitors on their forehead, etc. is so far one of the hardest things I think I have personally witnessed. I just had to keep telling myself that they keep these babies well medicated so that they don't feel any pain and also a little sedated so that they will sleep most of the time. Everything is taken in "baby" steps and Josiah will slowly be taken off of different things as he improves.

We found out that Josiah will probably be transported by helicopter to Egleston, and will then spend about 1-2 days in the CICU before actually having his surgery. They like to do all of their own tests, just to make sure everything looks ok and that he is healthy enough to have the surgery. The surgery itself will last between 6-8 hours...umm can we say LONG and STRESSFUL day?? He will then be taken back to the CICU and will spend about 7-10 days there, give or take, depending on how he is doing. Once Josiah is able to regulate his own body temperature and has passed all of his "tests" he will then be moved to the step-down unit. Here, he will more than likely still be on a feeding tube and possibly the drainage tube? I can't exaclty remember what the nurse said. Anyhow, we will actually have our own room in the step down unit and Anthony and I will both be able to spend the night. In the CICU we can stay 24 hours if we want, but there is no place to sleep. They do have sleeping rooms so I'm sure we will be getting some use out of those.

After our tour, we got to meet with Dr. Kanter. he seemed like a very nice man, and answered all of my "20" questions! I appologized when I drug out my little notebook, but he said he liked to see an organized mama, haha! Between Dr. Kanter and the other surgeon, they perform about 800-900 surgeries a year! I can't even imagine!! Since HLHS is pretty uncommon I asked how many Norwoods he performed each year. He estimated between 25-30 surgeries per year with babies from all over the southeast. He again mentioned the length of stay for Josiah and that it averages about a month, but he's had babies leave in 8 days or after 3 months. One of the questions I had been wondering was why there was such big gap in age for the last surgery (the Fontan) which happens between 18 months and 3 years. Dr. Kanter explained that it depends on several different things. How healthy the child is, how big they are, and also how the Fontan is performed. Dr. Kanter mentioned he has been doing the Fontan a little differently now and instead of using something from Josiah's body he has been using a tube (that will in the future hopefully keep his heart from working too hard) to improve circulation. In order to use the tube the child needs to be a little bigger to make sure their body does not grow out of the tube.

After some more chit chat it was finally time to head home. Anthony and I talked about what life will be like in just a few short months and how we can't wait for Josiah to get here. It will be a bumpy road for a while, but I know we will get through it. I've sad this again and again, but the amount of support and prayers is just overwhelming. I just received a card in the mail yesterday from a church care team in North Carolina that said we are in their prayers.

Speaking of North Carolina, last week Anthony caught a little documentary on ESPN about Greg Olsen, who plays football for the NC Panthers. Greg and his wife just gave birth to twins, a boy and a girl last Tuesday. Are you ready for this...their little boy was diagnosed with HLHS before he was born. Greg and his wife flew to Boston to see if they were candidates for the same surgery were iquired about and they were denied as well. There little boy TJ had his first surgery about 5 days ago and is doing well. Here is a link to a video of their story HERE I would encourage you to watch it, as there are a few parts I left out. Greg has also started a charity for children who have a congenital heart defect, you can visit that site HERE.

I also had my glucose test last Thursday and I did NOT test positive for gestational diabetes. And speaking of doctors appointments, I have another one today with the perinatologist, not really sure why I have to continue to see this doctor since we know what the problem is, I think I'll ask them today =)