A Good Day...

Look how cute little Benny looks in clothes! A sweet mom donated these with snaps where the shoulder seams were so you can pull the whole front down and get to his wires, tubes, etc. This was the first time he has been in real clothes and I think he looks adorable. Also this was the first time I held him vertically (now that a lot of his heart lines are out we are able to) and I got to pat his bum for the first time too. I loved it, as you can tell. The last picture is of Ben's toes because they are really special to me. A lot of times since he was born he has had his fingers taped up in IV dressings and other stuff all over his body so when he would cry I would hold his toes (because sometimes that was the only skin you could get to) and he would curl them around my finger. Sometimes when he wants me to touch him he will stretch and separate his toes and I will grab them and squeeze them and he calms right down. It is cute and just a little silly thing between he and I but it makes me feel loved and I hope it does for him too.

Go Jazz!!!

So Cody and I had the funnest night out on Wednesday. An awesome annonymous family donated two tickets to the Jazz game and they requested they be given to a family that had been at the hospital for a long time and had really been through a lot. You can imagine how surprised I was when the parent resource lady told me the staff had chosen us! The seats were amazing--row 11 from the floor! I've never been able to see a sporting event from the lower bowl let alone that awesome of seats (we were right behind the reporters!). It was such a blast. Ben had had a really great day so Cody and I left him for just 2 1/2 hours and had such a fun time together. We really needed a break away and some alone time together 'cause it has been so long. And of course it was even funner because the Jazz killed the other team. I had to take a picture of Ronnie Price, #17, because he came to see Ben before Christmas, took his picture with him, and gave him an autographed basketball. I wish I knew who the family was that donated the tickets; we really owe them a big thanks!

Notice anything missing?

Yeah, the breathing tube is out!!! This picture is of Ben's first breath on his own after 7 weeks with a breathing tube. We were really nervous if he would have the strength to do it because so much is riding on it, (we were looking at going back to surgery otherwise, egh!). The tube came out on Saturday at 9:40 am and being a little superstitious by now we didn't post the news sooner for fear of jinxing our good fortune. You might remember the two other times the tube came out he went into severe distress within the first hour, but this time a day and a half later....he is still doing great!!! He is enjoying having a binkie again and his vitals all look pretty good. The only sad part is he has a serious sore throat and not much of a voice; we still have never heard our baby cry but are strangely really looking forward to it! Way to go Benny, we knew you could do it!

Brady

I wanted to solicite prayers for my brother Brady who is having surgery at the U of U tomorrow. He has had a similar procedure to this one before but it is still really risky and we really need everything to go well so he can start getting better. Please, please pray for him too.

Little Benji

Since my last post....Ben went the first week post-op doing pretty great with no SVT's (a yucky arrythmia) or other complications. But just like with the first surgery, almost exactly a week after the surgery he started going downhill a little. The Dr's explained that it is common to have some struggles. He started having the SVT's regularly as well as some other arrythmias that were complicated. He developed plural effusion in his lungs so chest tubes were put back in. On Monday this week they thought the right lung was not draining any more so they took the chest tube out. The only way the doctors can explain what happened next is that when they took the tube out a small piece of lung tissue must have attached itself to the tube and came out with the tube, leaving a hole in his lung that quickly leaked air to the outside of his lung. Within an hour the air pressure outside of his lung caused his lung to collapse and was pushing into his heart as well. They call it pnuemothorax. It was crazy--he went down hill so quickly the nurse even thought we were going to loose him. (She started crying!) His little fragile life was on the line and thankfully the doctors and nurses gathered around him and worked quickly to save him. He is okay now but it took him a day to really recover from that. (Any kind of a crisis, procedure, or too much stimulation is hard on his heart and it wears him out.)
So the great news--as of today we are working towards getting Ben extubated tomorrow so he has had several days of spontaneous trials (When they shut the ventilator off for an hour or more and he has to do all of the breathing on his own. It helps to build strength in his lungs and heart.) and he has done amazing! Also he has had four days of steady weight gain in a row!!! That has been a huge battle for him and he has never even had two days in a row, so four is awesome! Today he weighed in at 3.89 kilos which I think is about 8.56 lbs. I can't believe he is almost 7 weeks old. He is really enjoying all of the picture books he got for Christmas; he can't seem to get enough reading to him and he loves to be sung to as well. And three times I've seen him give a little half-smile underneath his breathing tube. I can't tell you what that does for me!
I think seeing all of this progress has really made it sink in just how sick he was before he got the new mitral valve. We must have been in denial or something. It is wonderful to see him gaining strength and being able to respond to Cody and I, like he knows that even though he is surrounded by machines and people buzzing in and out, we are his parents and he loves us. Say a prayer that he can get his breathing tube out tomorrow, then maybe we can get out of the ICU soon and up to the recovery floor. Also if you can keep praying for all of the other little ones at Primary's. There are so many that need your prayers.

Make a Smilebox slideshow

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!