We are blessed!!!!

Well, Ben went back to the Operating Room today for another open heart surgery. The plan was to try to repair the mitral valve (or replace it if necessary) then do an echo and decide what to do with the aortic valve. Dr. Hawkins said the mitral valve was much worse than he thought and after an hour of trying to repair it he was sure there was nothing he could do. So he replaced it with an artificial valve from St. Jude's hosp. Everything went well and the echo went amazing too. The aortic valve was actually better than we could even have hoped to expect. And the best news of all---Ben came off the heart/lung bypass machine on the first try!!! (They actually said he jumped off!) He is such a fighter and is trying so hard to get better. It has been such an amazingly spiritual day and we feel blessed beyond our ability to express. As always the first 24 and 48 hours are scary, but we are confident that our boy will make great progress. Such a change from how we felt yesterday!

Everyone has been asking for more pictures so here is one Cody took last night. You can see the scar on Ben's chest. It looks really good I think. He was still pretty sleepy yesterday since he had been sedated and paralyzed to have the chest tube put in. I guess Cody talked to the NP today who said that because Ben is making such slow progress the doctors will talk to the surgeons about only waiting another five days or so to see if there is enough of an improvement, otherwise they recommend he go back to the operating room to see if there is anything they can do for that mitral valve. We have been hoping that he would be doing much better by now but more complications keep happening, daily, and I think the dr's are worried that he might not be progressing at all and that the longer they wait he could get an infection he simply couldn't fight off since he has had so many tubes and wires in him for so long. So more of the waiting for Cody and I; I suppose we'd always meant to learn patience. Hmm. Well... I took a picture of Ben with his Binky in because it was so cute but it didn't turn out very well, I'll have to try again tomorrow so I can post that. I love a baby with a binky! I've been home for a full day with the girls and it has been bliss (even though we had to get our flu shots). They are the most darling girlies ever! It will be good to be back to the ICU tomorrow though, I don't know why I don't trust anyone to look after Ben if I'm not there.
In other news, Aimee has a dance recital next week so watch for the pictures, Jocelyn did well on her mid-year reviews in school, Cody is busily back to work and right now the Lakers are winning so he's very happy, and I have (even though I said I never would) joined the Twilight band-wagon. Laura lent me books to read at the hospital, it was in the sack and I read it yesterday. I know I am behind because there are three more books and a movie I need to get started on but don't worry, I am working out a plan to catch up. Thanks again for the prayers for Benji and our whole family--we feel them and they help!

The other day I was sitting in Ben's room and I was thinking about how fragile life is, and how so much of what you always considered "constant" really isn't that at all. The boy across the hall from Ben's room isn't doing well. Just yesterday he was sitting up sipping a Dr. Pepper and looking well. Today doctors and nurses are running in and out, wheeling in the machine that starts your heart again after it has stopped. Meanwhile his family gathers and looks on, grief and frantic worry in their faces. I know how they feel. We have been there. Today has been a pretty good day for Ben; but I think back to the days that haven't been so good and I remember the stress and heartache we felt. There is no better way to describe this experience than to say it is a rollercoaster. And today, while we are gently coasting down a smooth-ish, all-be-it rather long, hill, my heart hurts for the children and families who are suffering. There are so many sick children and babies here; it is truly humbling and makes you look at life and priorities a little differently. Please keep them all in your prayers as well.

P.S. Ben had another echo today...valves look the same as the last echo and mitral regurgitation is as bad as well. He also has a small blood clot in the right side of his heart. They will increase his blood thinners and hopefully it won't move into his lungs. We are hopeful that he will start gaining weight soon and get some strength back. I'll keep postin' when I can.

The big meeting...

Well today all the cardiologists and surgeons met again to try to figure out what would be best for Ben. They don't think there is anything they can do for the mitral valve as far as repairing or replacing it right now. They would like to try to extubate (take out the breathing tube) again so that he might be able to go home in a while and recover and get a little bigger before doing another open heart surgery. They think if he is able to go home he would require another surgery in 1-3 months. I am nervous because the last time they tried to extubate it didn't go so well and it put his little heart in a lot of stress for about a week causing him to have lots of other complications. But the only other alternative (if he is not able to extubate) is the really risky Norwood procedure which is another open heart surgery (or series of surgeries) where they would completely reroute his entire plumbing in his heart to only use the right ventrical and not the left at all. This would mean he would only have one pumping chamber for blood to come in and out of and would mean at least 5-8 future surgeries beginning in the near future. On the positive side, he had a catheter to his heart yesterday to measure the exact pressures in all the valves and chambers and his left atrium which is collecting all of the regurgitated blood from his mitral valve only had a pressure of 16. Dr. Hawkins, the surgeon, said normal is below 10 and if it was over 20 they wouldn't even try to extubate because there would be no way Ben would be able to do it. But Ben's was 16...so he really might be able to get off the breathing tube and then in a few weeks he might be able to come home and rest for a few months or longer. Oh wouldn't that be wonderful! Maybe he could even be home for Christmas! The first spontaneous trial (30 minutes with the ventilator off to see if he'll breathe on his own) was today and it went pretty well for 20 minutes, then he stopped breathing and the machine kicked back on. That is pretty good I'd say and I'm sure it will only get better tomorrow. If the trials go well they will try to take the tube out on Sat or Sun. Cody and I both have really good feelings that he will be able to get it out and that he'll be able to come home soon. Oh I hope so!