Our sweet Benny is terribly sick. The cardiologists think that maybe his little heart is finally giving up. He has fought so hard through more than three weeks with horrible infections, first in his pic and art lines and then about two weeks ago we found a mysterious lump just below his jaw-line that was the size of an apricot pit. He has been on four rediculously strong antibiotics (two of which are so strong and almost dangerous to use that only the Infectious Disease Specialists Team has authority to order them!) Earlier this week he was beginning to recover, and thankfully he hadn't ever (no matter how scary close he came) had to be reintubated. But Friday night and Saturday morning his heart hit it's limit. He was exhausted. His coloring was extremely grey and modled, his heart rate and blood pressure were terrible, and his lungs were really, really struggling--so back in went the breathing tube, as well as a tube that drains fluids from his tummy because he's been throwing up so much. His chest x-rays show lots of edema in his lungs as well as plural effusions and his heart is just too tired to pump it out without the ventilator. Then the cardiologists ordered another echo. His last one had been on the 19th and showed his EF or the function in his left ventrical (left pumping chamber) was down to 49. 65 is normal and Ben's had been 64 shortly after he got his new mitral valve. But it decreased so much that he was put back on IV medicines to help the ventrical squeeze better. The echo was repeated on the 24th to see if the meds were helping but the EF was now only 20! That is beyond critical. Another heart med was started immediately and another echo was done today. There was no change. The cardiologists have diagnosed him with critical heart failure. The surgeons say there is absolutely nothing they could do or are even willing to attempt; they believe he would die on the table. We have been given two final options. We could try for a heart transplant. It is very questionable if he would be healthy enough to even be considered a candidate and even more questionable whether he could last the up to 10 months it might take waiting for a heart. Even if by some miracle he got a new heart next week, the quality of life for a child transplanted at this age is not good at all. Most newborns don't survive the first year following the transplant and of the one's that do surivive the first year, less than 40% are alive 10 years later, which is about the max life expectancy of a transplanted heart and so he would need a new one. Which brings me to our only other option--to stop giving him support, meaning to give consent to turn off the ventilator and his heart medicines and slowly watch our precious baby pass away. The very thought of it makes me sick to my stomach. Many of the dr's and staff feel, given the other horrible alternatives, that letting him go is the more humane and actually compassionate thing to do. Cody and I wonder how our bodies could continue to exist if we had to make a decision like that. We've fasted and prayed for the Lord's guidance. I've prayed, maybe selfishly, that if our Father in Heaven must call Ben home to Him, that He will show mercy on us, and that his passing will be natural and peaceful and that our angel will not suffer. His suffering, the sadness and exhaustion in his eyes, is more devastating than I can express. Our complete devotion to our children is part of the core of our beings. We love them and cherish them so absolutely that the very idea of not having them here with us everyday feels like torture of the worst kind. I ache at the thought of it. And yet he suffers. And we watch it and hate it. And while we still cling to that thread of hope that he may yet get well and gain strength, it just doesn't seem to be going that way. He is so terribly sick. And so very weak. The situation is devastating, and yet we find comfort and strength in our Lord. He has been with us these 10 long weeks and we have been blessed with many miracles throughout. In addition to the many physical miracles for Ben; Cody and I and our families have been blessed that our hearts have been softened and our focus has changed. Rather than wanting what we want for Ben, or should I say even more than wanting what we want, we want the Lord's will to be done. We know that no matter what happens it will be for the best, and for our good. And of course it helps to know we are an eternal family. Please, please continue to pray for Ben as well as the dr's and nurses who look after him. Also please pray for Jocelyn and Aimee who are the sweetest, most wonderful little girls ever and yet they have a really hard life right now. Finally always remember the many other sick children at Primary's in your hearts and prayers. They sure need it too. I am scared at the anticipation of this uncertain week ahead. It seems our lives will never be the same again.

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.