According to the doctors, Claire is a full term 40 weeker today! We are such proud parents!
Today was another somewhat busy day. Not as busy as Monday, but equally as taxing on the brain. They decided to do an echocardiogram of Claire's heart and of the vena cava to determine how much blood flow was actually happening. After the neonatologist and the liver surgeon looked at the echo and talked, they said that the cyst was pressing on the vein and showed "diminished" blood flow. We need to do something now to relieve this pressure b/c it's important that her heart gets the blood from the lower part of her body.
Their plan is to talk to radiology in the morning and get them to drain the largest cyst tomorrow. They hope this will buy Claire a few more weeks until something else has to be done. One option is to continue to drain it as needed until after her heart surgery or until they have to do liver surgery.
The liver surgery is much more complicated than originally thought due to the veins in Claire's liver. This will not be a simple surgery. Basically the way the surgeon described Claire's liver to me today is this - everyone has a right lobe and a left lobe of their liver. Claire's entire (85-90%) right lobe has been taken over by the cyst. So basically she does not have a functioning right lobe. The left lobe has a few of the newer small cysts. Based on the way the veins are in her liver, they will have to remove the entire right lobe and part of the left lobe when they do the full surgery (this is the plan at this point).
Luckily, the liver is the only organ in the body that will regenerate itself. So if they cut out part of her liver, the majority of it should grow back. If they get in there and see that they have to take too much of her liver for it to function, then there's a possibility of transplant. But that's not what they are thinking now.
So Claire's body is right now pretty much functioning on only the left lobe of her liver. So if/when they remove the right lobe, it shouldn't be much different than it is now in theory. The surgery could possibly be done in stages like remove the cysts from the left lobe first, then go back and remove the big cyst later. The surgeon has not been able to talk to the cardiologists to get their opinion on it yet, so that information is a very important part of this puzzle.
The resection surgery could last up to 4-5 hours when they do that if they did it all at one time. And recovery time is usually around a week or so. They are fairly certain that the cysts are benign, but cannot be 100% sure until they actually get tissue or remove the cyst and send them off. They are hoping there is a slight chance to obtain some cells in the fluid they drain off tomorrow that could point them in the right direction as to what these cysts are. But it's a slight chance that they would even get anything from the draining. They don't want to biopsy it at this point because there's basically no tissue to biopsy. The cysts are so close to the surface, there is just a thin layer of tissue.
They are still thinking these cysts are the mesenchymal hamartomas. Usually hamartomas are in multiples and can be both fluid filled and not. The unusual thing is that there normally is not one huge dominant cyst like Claire has.
Other than all of this stuff, Claire seems to be doing well. She's eating well and growing and is as beautiful as ever! Last night she weighed 6 lbs 10 oz! She had one of her favorite nurses today, the other favorite nurse was across the hall and checked on her, and she has a great nurse tonight as well! So that makes us feel a lot better.
Claire needs lots of prayers tomorrow for the cyst draining and also as the doctors decide what the plan of action is for her heart and her liver. We know everyone is praying for her constantly and we are so gracious.
The Scott Family