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!

Updates on Baby Ben...

I am so sorry I haven't had time to update my blog in a while, this is the first time I have been home in a long time. I can't believe Ben is going to be 2 weeks old tomorrow. Being at the hospital is a rollercoaster everyday. There's good and bad news constantly. Clinically, his vitals are improving, but we had some bad news from the last echocardiogram on Tuesday. It showed the leaking in his mitral valve is worse than it was before the open heart surgery and his aortic valve is just a mess as well. We are hoping that when they repeat the echo on Monday the rest he has had will have made some improvements. They pulled the breathing tube out yesterday but ended up putting it back because after about an hour of doing fairly well his heart just didn't have the energy to breathe any more. It was really, really scary. Cody and I have started taking turns at the hospital and coming home to try to give the girls some normalcy at home and to break out of the depressing environment and recharge a little. I was aching to be with the girls but it is devastating to drive away from little Ben in Salt Lake. Thanks everyone for your continued faith and prayers...they really help.

Make a Smilebox slideshow

Cody's Surprise Baby Shower

Cody needed a treat for his work Halloween party that was easy and could be made the night before. We have made this before with blue jello (to simulate the ocean at Aimee's Ariel birthday) and also with red jello (my favorite), but for the occasion we tried it with orange. It looked like candy corn with the darkest layer on bottom and the lightest on top but it tasted more like a "dreamsicle". Mmmm, yummy!

Recipe---
Two large boxes of jello (the 8-serving ones)
Two 12 oz tubs of cool whip
6 cups boiling water

Dissolve jello in water completely. With a wire wisk gently stir in 1 1/3 tubs of frozen cool whip (put the remaining 2/3 tub in the fridge to thaw). When all mixed in pour into a 9x13 glass pan (must be see through or it defeats the purpose of the layers Ü). Let chill in fridge for about 2 hours then spread remaining thawed cool whip on top for final layer. I usually refrigerate a little longer to let last layer set but you can serve immediately if desired. Cut in squares and enjoy.

Make a Smilebox scrapbook

Here are Jocey and Aimee riding horses at their friend Kayla's birthday party. Happy Birthday Kayla, thanks for a fun day!