Option 1:

Intervention ~ HEORIC MEASURES

(In other words not fully expected to work)

Planned C-Section in the Wolfson's Heart Cath Lab.

They are expecting Baby Brother's condition to be so deteriorated that they can't risk the time it would take to get him from the regular surgical room to the cath lab so delivery in the cath lab is ideal. There are two rooms in the cath lab so one would be set up as my delivery room and the other set up to immediately perform the atrial septostomy.

On hand will be the adult surgical team for me to include anesthesiology and my OB. Then there will be the Cardiologist team, NICU team and Echmo team for him. Lots of scheduling to do so delivery will most likely be moved up to December 27th or 30th. For those who may not know, like myself, the Echmo team is the bypass team. This is the bypass machine that keeps people alive when having open heart surgery or some other procedure that requires bypass.

As soon as Baby Brother is pulled from my belly they will rush him to his side of the cath lab to perform the surgery. There was a bit of debate between Jason and I as to what to call this procedure. I keep saying catheterization because they way they get in to do the atrial septostomy is through the groin in the same way a heart cath is done. Jason says it's surgery because, well, it is. I'm not denying it is a surgical procedure, just trying to differentiate the difference between going through the groin as opposed to actually opening his chest. (if that make sense to you)

They would try to perform the atrial septostomy immediately and this would hopefully work to open his atrial septum. The struggle is they think Baby Brother will be so sick that he will need to go on bypass. Why is this a problem? (Besides the obvious!) This is a problem because in a normal catheterization you go in through the groin, perform the procedure, come back out, put lots of pressure on the incision area until bleeding can cauterize. If he has to go on bypass then the problem comes with bleeding. A bypass machine is constantly pushing blood through it. The mechanisms are plastic. So the blood flows through plastic tubes, essentially. Because of this they have to use blood thinners in the blood to prevent the blood from cauterizing in the tubes. If they are using blood thinners in the blood then thinned blood is what is going into Baby Brother. Once they go to pull the needle (or whatever it is) out of his groin there will be no way to stop the bleeding and he will bleed out. If they can get the needle out and stop the bleeding then Baby Brother has to start fighting to get off that machine. They will only keep him on it for 2 weeks before we have to make some very hard decisions. The other problem with the bypass and thinned blood is the risk of bleeding on the brain.

I asked if it was possible, in a perfect world of course, for them to get the procedure done before Baby Brother would have to go on the bypass machine. She said Yes! Absolutely. But that would be a perfect scenario and so far your baby hasn't wanted to do anything perfect.

She said the first 48 hours are going to be crucial. That's when they would expect him to "crash and burn".

Once he comes off bypass (if he even goes on, I'm still praying!) and is making strides, then and only then will they determine if he is a good candidate for the Norwood procedure. That is the first procedure to mend the Hypoplastic Left Heart.

If we choose this option Dr. Lacey wants us to reconsider an amniocentesis to check for chromosomal abnormalities. She wants us to make as an informed decision as possible. To a layman she said let's see if there is anything else going on with this little guy because you may not want to fix a heart that's attached to a down syndrome baby. This is the part that has me MAD! She never specifically used a specific abnormality but I can read between the lines. Don't get me wrong she is a very nice lady and a wonderful cardiologist BUT I didn't have an amnio for a reason and the reason is I DON'T CARE! Jason and I agreed a long long time ago the risk of the amnio is too great. Especially since the results would not change a single thing. If this baby had Downs or any other something, you know like Hypoplastic Left Heart, we would still treat him like the gift from God that he is. He is a precious spirit that Heavenly Father thought Jason and I capable of handling and I will not play God! If HLHS doesn't scare me (even though it kinda does) then some other abnormality never will! I'm sorry, I'll step off my soap box. Bottom line is we have declined, yet again, an amnio. This is also the reason for determining if he will be a candidate for the Norwood. I suppose if he has something else wrong they will decline to operate on him. I'm not sure what makes one baby a good candidate and another not but they will operate on my son! If he can make it through the atrial septostomy under all that pressure then the Norwood will be a piece of cake.