We had another doctor appointment on Friday. This was the first appointment in Evanston, as all others have been in Gurnee, so this was a whole new experience for me. I was impressed by the team - they have assigned me a nurse who will see me each visit, and they are arranging for me to see a specialist, or more than 1, per visit when I am there. At this point it appears we only have 5 more doctor appointments before baby comes. The perinatologist was there, and I was able to ask her some questions in terms of what we should prepare for with baby J coming at ~35 weeks. She said that it will really depend on him, but that 35 weekers have a lot less issues than babies that come earlier than that. The biggest concern we will need to be prepared for is breathing - he will most likely be on a nasal cannula (air) or a face mask; there should be no need for a breathing tube. Once he has that mastered, we'll focus on his eating and his ability to maintain his body temp. If we are lucky he won't be in the ISCU long, maybe just a few weeks. However, we're preparing for him to be there up to 6 weeks.
As you may know, the issue that is causing all of this trouble is Placenta Accreta (http://americanpregnancy.org/pregnancycomplications/placentaaccreta.html). Because of the risks associated with the PA, we are seeing a specialist through Evanston Hospital. We are blessed to have 2 of the top 15 hospitals in the country within an hour and a half from us. The #5 in the country, Northwestern, is in downtown Chicago. They deliver over 1000 babies per month, and only see one case of this per month. Evanston is #15 I believe, and they deliver 3-4 of these cases per year. Because of the high risk of complications, we are making a lot of plans, as far in advance as we can.
We were very blessed to have this discovered at our 20 week ultrasound - the risks of life-threatening complications are significantly higher if not discovered until later, or not discovered at all. Right now, the following precautions are being taken:
- The urologist, gynecological oncologist, and interventional radiologist will all be in the room, as well as blood from the blood bank. There is high risk that there will be some damage to the bladder, so the urologist will be there to assist. Because of the complexity associated with the hysterectomy during pregnancy, the GO will handle the surgery once the baby is delivered. The IR will handle placement of different medical devices to help reduce bleeding prior to it starting. However, I've been advised that I could lose up to half of my blood.
- Baby J will be delivered at 34 weeks, so there is no risk of my body going into labor. If my body were to go into labor, the risk for hemorraghing is very high, and thus a huge risk we aren't going to take.
- The Perinatologists will be in an adjoining delivery room, to immediately take him and work on him if he is sleepy. He'll then camp out in the ISCU (NICU) for the next sevearl weeks.
- We see the doctor every 2 weeks right now, and then weekly come approximately 30 or 32 weeks.
In continuing to feel blessed, we've had an amazing offer to organize a blood drive on our behalf. I spoke with the doctors about this as well, and they gave me some information so we can begin to set this up. I will share more information on this when it is available. (thank you Diane!!!). People have asked if I can donate my own blood in advance. I've been told yes, but it wouldn't be enough to meet my needs during the surgery.
Our next appointment is set for 22 February. We will have another ultrasound, and have a tour of the ISCU. We will then set up all of the appointments moving forward, including those with the specialists I mentioned above. I was able to meet with the social worker this past week as well and she addressed a number of my questions and concerns.
This is a very scary situation for us, as you can imagine. Given the limited number of cases it's hard to find others who have gone through this to relate to. We haven't told the kids anything about the risks to me, obviously. We're working on how to tell them that their brother will be in the hospital for a while - since we don't know how long, we are trying to figure out what is best. The social worker was great with that information as well. We appreciate your continued prayers.