Friday, September 12, 2008

Shimmy Rockin' Out

It's been another sunny day here at CHO both outside, where we got to be for about 30 minutes, as well as inside where Simon has been a chipper little monkey all day. He's in fine spirits even after having an active night with some emesis (that's medical talk for barfing) and just general fussiness. We think some of it had to do with the three hour nap he took right before his bedtime. Somewhere we got off our schedule and Simon thought it was party time once the sun went down. We're trying to teach him that partying can happen anytime (see video below).

We're gearing up for another weekend and then Jaime going back to work. Simon's pretty bonded to his Mama now so it's going to be sad to have them be separated for so many hours during the day after the bliss of the last week. I'm going to miss Jaime something wicked as well.

Really....? No winning lottery ticket from anyone? Where's the love?

I know it's hard to recognize sarcasm over the internet so let me just reiterate that Jaime, Simon, and I are very much in touch with where the love is. It's pouring in all the time in so many ways. Here are some examples...

Jubilee, one of our Fellows, came by to say goodbye as she's finally getting a day off (after 12 on). She just wanted us to know that the only thing she was sad about in terms of taking a day off was "not getting to see Simon for a whole day." The woman just worked 12 days straight and is finally getting 24 hours off and she makes a point to come by and tell us that she's going to miss seeing Simon!!

Theresa, our Stethoscope benefactor, came by again just to check on how Simon was doing.

Nurses that we've never had or even met are wearing the Team Shimmy buttons and saying hi to us in the hall. Even the parking attendant that we see every night has a button (given to her by Bruce) and asks about Simon.

Our beloved Rebbe Jhos came by and said a little (actually a large) prayer for Simon and it set something in motion for the rest of Shimmy's life and my life as his Mom.

I believe that this time of so much love, prayer, food, touch, and generosity coming to Shimmy is also speaking to what he gets to give back as he grows up. There is this amazing pool that is being filled with all of that goodness coming his way. I get it now that it's our job to make sure that as he grows he gets to "pay it forward" and spend the rest of his life sharing that love, touch, food, and amazing sweetness with anyone and everyone that he comes in contact with. I'm so looking forward to sharing that mission with Shimmy as he grows. The amazing thing is that he'll have all of your comments, cards, little notes, images, etc, etc, to know how full that pool is and how much he gets to give back throughout his life. What a privilege.

Boundless love and gratitude to you all.

P.S. Who else besides Alicia's sister in Bremin, Germany is looking from Europe? Inquiring minds want to know!

And now a funny moment from Jaime:
Our nurse said there was something leaking under the chair Laura was sitting in with Simon. She didn't seem concerned with finding out what it was but I sure wanted to know because there wasn't anything around to leak! After following the puddle on the floor of clear whitish fluid to the front of the chair, I realized that Simon's NG tube had come unplugged and he had leaked about an ounce of milk on the floor...directly from his stomach out of the tube. Yup, it was Simon that was leaking! Kinda funny, kinda gross.

A few photos from the last few days:

Us with Thomas, quite possibly the sweetest man alive (and the custodian of our unit). Today when Thomas locked eyes with Shimmy, he exclaimed "He's looking right into my soul. He's my soul brother!" We all had a good chuckle :-)

Simon flirting with Bubbi Vera

Grandpa Bruce teaching Shimmy how to blow up his head.

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Adorable Images From The Last Few Days

Laura and Simon napping
Hello, Handsome!
Simon, saying hi to his new stuffed Roxie
Making out with the baby outside
Jaime and Simon napping

Here's video of Simon eating rice cereal for the 2nd time

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Thursday, September 11, 2008

A good day

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So far it's been a good day here in Bay 22. We've been out for a walk and lay on the grass time. Simon showed off a little during Rounds, being lively and alert, we ate some more rice cereal, and I even got to practice a sterile procedure learning how to change his Broviac dressing. Shimmy's napping peacefully right now and our space is scattered with the most amazing array of baby paraphernalia you could imagine. There's a bumbo seat for sitting up and playing with food, there's a huge collection of finger puppets made by Gerardo and his colleagues over at the Tides Foundation (some are wearing the most fabulous glittery outfits ever seen on finger puppets), a stuffed octopus thing from Liz each of who's legs toots a different tone, Shimmy's stuffed boxer that's bigger than he is, three different bags of food that have all been brought today, me, laid out on the floor on a sleeping bag, and trashy magazines that Jaime and I are slowly getting through when Simon's asleep.
Bay #22 hasn't looked this lived in...ever.

We learned today that Simon's BNP that was drawn on Tuesday is 2650 which is about 200 points lower than it was last week. We're hoping that this is the beginning of a long and steady trend towards recovery.
The powerful messages of love and hope are astounding. Thank you so much.
My mom arrives Wednesday for a week and Jaime returns to work after an incredible week with the three of us together all day every day. It's been so necessary after the intensity of last weekend and I'm so grateful for the opportunity.
My back is still completely jacked but Vicodin has been helping and I'm feeling much better than I was a few days ago.
Generosity abounds:
Theresa, our stethoscope santa, came by tonight just to say Hi. She told me that I had a big butt and that Simon was looking so much better. Love her.
Auntie Joan made cookies for the security team, Nola drove all the way up from Woodside just to drop off dinner but had a dinner to go to herself (back in Woodside!!) and Carol our nurse got to partake in Karen's famous black bean, Avocado, and cabbage slaw.
Simon just seems to bring out the best in us, our family, and everybody around him. It's beautiful.

Wednesday, September 10, 2008

Parents a Little Rough Around the Edges

Locations of visitors to this pageSimon had a great morning, but it was a little rough for his parents.

We ended up going to the Alta Bates ER this morning for Laura's back. We couldn't find information about Urgent Care, so we ended up just going to the ER. While we were there, our friend Dre stayed with Simon. She had to leave for an appt and one of our favorite residents, Rachna, called us personally just to let us know that Simon was having a great morning, was very chatty and quite happy. I loved that the *resident* called us just to give us a little update :-)

After 3.5 hours there, we left with a prescription for Vicodin and Motrin and headed back to the hospital. When we arrived, I went to put food in the fridge and saw a huge Edible Arrangement on the top shelf. The nurses all said, "that's for you". I started laughing and then looked at the tag- it was from an old friend whom I haven't talked to in YEARS.

At about noon, two friends from the dog park came by with sushi and a big stuffed Boxer for Simon. We're going to make putting brindle stripes on it the resident art project.

Yesterday, one of our friends who is a resident in Sacramento drove down immediately after her 32 hour call shift, stayed for an hour or so and then drove back and had to be at the hospital again that night at 10 pm.

We have a whole team of people taking care of Roxie this week. Amazing.

Incredible bounty continues...

That said, we're both still totally wiped out from the stress of this weekend. Simon looks much better, his breathing, while still rapid, is much less labored and his heart rate is about 10 points lower than it was. He's in very good spirits and quite happy One of our cardiologists came by today and said, "if you didn't look at his chart, you wouldn't know he's sick" which was one of the best comments so far. It's so much better than him looking and feeling really ill AND I'm struggling to reconcile those two conflicting truths- he looks and feels good and is still critically, critically ill. I guess that's why I'm so tired. It's a lot of work to stay in hope and reality at a time like this.

Another funny note- yesterday our friend Alex came by. I was talking with her about how incredible it is not to feel alone during this whole process thanks to all our community, but also that I was feeling badly that all these people were on this roller coaster with us. When we were suffering, they were suffering. She said, "You're stupid. Shut up" and I just about peed my pants laughing. Now if Laura or I apologize to each other for something silly we just say, "you're stupid, shut up" with a bit smile and burst into laughter.

Simon had his first solid food today! We tried a little rice cereal mixed with breast milk. He was feelin' it and we'll bring in a tray for his little seat so he can really make a mess tomorrow. Little Man might end up being an eater after all. I told the cardiologist I was going to try bacon tomorrow and he said, "sounds good, but it's a little salty. What about salt-free bacon?". Everyone has such a good sense of humor around here. It really helps...

Tuesday, September 9, 2008

Mellow Day

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Good, mellow day today. I'm so exhausted it hurts, even though I've slept. This weekend tapped just about every reserve I had. A few sweet moments today.

Our friend Skeeter came by to bring breakfast and clippers. She cut Laura's hair in the bathroom, drawing many a curious look. Laura looks smashing...

My friend Abby who was visiting from Chicago gave me a little manicure while I was holding Simon. I think she could make a lot of money in this joint if she expanded to other beds!

We're going to try a little rice cereal today to see if he's into it. He's been very interested in food and it might be a way to get more calories. We'll take pictures- I'm sure it will be a colossal mess.

Laura's back is still in terrible shape so it's a really good thing I'm taking this week off work. She can't really even get up to go to the bathroom without help and can't hold him standing up. Poor little thing :-(

Holding tight...

Monday, September 8, 2008

Hold On To Your Hats, People

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Sharon, the social worker, came by this morning to check on us. We talked about a lot of different things, and at the end, talked about our conversations re: when if/when we might need to consider palliative care. She said, "I talked to Dr. Rosenfeld this morning and unofficially, he said he doesn't think you guys are at that point. He's the kind of guy who would tell you." We almost peed our pants we were so happy.

Then Dr. Patel who is one of the regular cardiologists, who knows Simon really well, came by this morning. We talked about choosing not to have a transplant and then about what our other options are. He then went on to say that we were no where near needing to think about the end right now. Simon is happy, all his other systems are doing well, and we can just stay on Milrinone for months if that's what it takes. Basically, he still could get better and aside from his heart being a little bigger and his stats being a little worse, he's okay.

There is a lot of room for hope. Bring on the love, bring on the fighter energy, bring on the miracles.

Can I just say for the record, I HATE roller coasters?

And so begins another horrible, beautiful day

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I just keep calling him a Supernova.

Here are photos of him yesterday. I can't reconcile how he can be SO sick and still smile like this.

With Auntie Joan

With Cousin Sophie

With Auntie Leah

With Auntie Abby

Sunday, September 7, 2008

Day 37

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Today has been a hard day. Simon seemed like he felt pretty good for most of the day, but his respiration have been in the 70's and often into the 80's and 90's when he's super active or upset. He was very fussy this late afternoon and it was scary. It took over 30 minutes for his Motrin to kick in and for him to fall asleep. It feels like we're slowly creeping back to the way things were the night we came in.

I want to feel hopeful that he will recover, but I'm moving more towards being hopeful that whatever time he has left is loving, peaceful, joyous, tender, and filled with all the people who love him.

We have a new nurse tonight who we've known for the whole time but haven't ever had as our nurse. She's treating us a bit with kid gloves, bending rules, etc and it really feels like he's dying. I think he may be but how do I really know? This is the most surreal experience. Every day is so different, every hour is so different. I am struggling so much to balance hope with reality and realistic expectations. I want to believe in miracles, but I'm afraid the time for a miracle may have passed. I hope I'm wrong.

Laura and I had a conversation with Simon today. We talked with him about how much we love him and want him to stay and all the things we want to do with him and all the people that love him here. We also talked about it really being okay for him to go if he is done. We told him that we would help him either way and that we will always love him, no matter what the outcome.

I know everyone is sending different energy and thoughts and prayers. Those of you who want to keep on sending the "fight it, you can do this" energy, keep on. Those of you who want to send more "you can go if it's time" energy, do your thing. If you have "I send you no preference, I'll just sit with you in spirit" bring it. He needs a spinning vortex of love to help him get where he needs to go and no one knows where that is so let's give him some of everything.


Dear Friends

We are so loving the visits and don't want them to stop.
That said, we need your help in creating the most peaceful environment for little Shimmy. We need to start being better about the # of people that are around the little man in a given moment.

Please use the calendar that's part of the account.

You can log on to the gmail calendar at
using the

Username= jaimeandlaura
Password= babylove

Click on the Calendar to let us know when you're coming.

Many many more than you know, many Thanks