Delicious Sweetness Over the Last Day

Good lord it feels better to have a good day in the ICU than a bad one. There's not much like a bad day in the ICU. No puking last night on the 24 hour feed and he slept through the whole night! Looking much better today, more chill breathing, etc. I think part of it is that they switched his NG tube to the other side

The sweetness..let's see...

Starting with tonight- friends brought us Shabbat Dinner complete with Chicken Pot Pie, challah, grape juice and candles.

Another friend brought a 2 pound tub of red vines, not even knowing that those are Laura's FAVORITES plus trashy magazines and new pacifiers.

Another friend brought his teddy bear, Boo, that was his special stuffed animal when he was a kid for Simon to have while he's here and his girlfriend brought the squares people made at our shower, now sewed into a prayer flag type rig that we can hang up in our space here.

His Great Cousin Sol from Canada sent a Canadian Mounty Beaver Doll.

Carol, our regular evening nurse, brought in a bag for us to have a "date night" that had all sorts of sassy things including chocolate sauce, a tart, chocolate covered chili spiced mango and her very racy naughty boots to borrow. I think I'll do a little sashay through the Annex tomorrow night when she's back on.

Simon is really close to rolling over. Laura and her Mom and my Mom had him playing on a blanket on the floor and he just swung back and forth, side to side. Soon!

Laura also said that today he was really into looking out the window at the cars and people passing by. I guess he can see that far now!

He's been sleeping since I got here tonight, but I'll take that 100x over his being awake and in distress. God, that's horrible.

Much love to everyone. Tomorrow is another day and hopefully a good one!

9:42pm- The little man is awake after a long 5 hour nap that we hoped would just be an exceptionally long night's sleep. No such luck. His circadian rhythm is way off right now but I'd rather he sleep when he's tired than not. Jaime's reading him "Good Night Moon" and I'm hoping that will give Shimmy some good ideas. Alas he looks just pleased as punch to be gnawing on the pages instead of taking the message to heart (hah).
It almost feels normal and just typical baby sleep stuff right now. He had such a solid night last night, I'm still really holding on to that for tonight as well. If he can manage to hang in there GI wise for another 24 hours (till tomorrow night) then the plan will be to start mixing the breastmilk with formula so we can really up his caloric intake. Aside from the heart medication stabilization, weight gain is something that are going to get more aggressive about. It's been an incredible journey to this point and I have to say that I'm feeling really at peace with moving away from the breastmilk/nursing attachment and more toward the "lets get some meat on those bones and around that heart" place.
Turns out that the fabulous weight gain that we thought we had over the last three days was actually some mistaken weights what with his new paraphernalia (eg his halter was on when they weighed him yesterday- derr). I'm still pumping and working on keeping my milk supply up holding on to that connection even without nursing and while it's hard I think I'm going to keep going as long as I can squeeze out even a teaspoon to add to his rice cereal. Yesterday I was almost ready to give up. Pumping is hard. Pumping sucks.
Simon still getting my breastmilk is worth it right now.
Visitor 100 and 101 were here today. Jasmine and Nathan- Congratulations!!! And visitors 1-99, thank you too.
Here's to a good weekend and coming week.
Night Night.

Great night, Great day

Simon had a great night's sleep last night, didn't puke and had a great day with Laura today. We'll write more later, but just wanted to let folks know it's not so scary right now. What a difference a day makes...jeez.

Another bit of rough road

Here we are again with another really rough day. Simon had a tough night with waking and vomiting at 1am and not getting back to sleep for a couple of hours and then a repeat performance at 7am.

Starting at 9 we went back to the three hour feeds of 100ml and he took that really well with just a little bit of retching but not losing any volume. He took an hour and a half nap right after and I thought we were in for a good day. Sadly enough things just went downhill from there. Not a steep incline but downhill. We learned that Simon's BNP has increased (about 1000 points) instead of the slow but steady decline we were hoping for, he was breathing harder, and at the 12pm feed he vomited up quite a bit of it.

Dr Rosenfeld said that it's not so much the # itself that we're worried about week to week but what we're looking for now are trends that fall in the 4-6 week range. Simon's only 2 weeks into this new regiment of medication so while it's not what we'd like to see it's also not anything that the doctors here are interested in acting on. I hear the words but my heart still feels like it all of a sudden is made of lead.
Although now (four hours later) we're talking about putting him on another strong heart med Coreg that one Cardiologist has had success with but hasn't really been tested on babies as young as Simon. The unfortunate trend on Milrinone is that Simon's heart rate is creeping up. Not drastically but it is. Simon got an NG break after the 12pm feed when we pulled it out and slept for four and a half hours and was happy as a clam until we had to put it back in for his next feeding. He threw up again and both Jaime and I as well as the team feel like it's time for one last ditch effort (24 hour feeding with a lot less each hour) before we go to an NJ tube and take his stomach out of the equation completely. That also means putting splints on his arms so that there's no chance that he could grab it.
For my sweet beautiful book reading, pacifier mastering, starting to wave goodbye and hello to people boy, my heart is breaking.
I don't quite understand what's happening but we're back at the point where they've asked us to have in his chart our wishes in case of emergency. They keep saying it's not because they're imagining something happening but they want it in there so just in case Jaime and I don't have to make a decision in the moment over the weekend when our regular doctors aren't here. It's completely unreal to have to verbalize once again essentially a DNR for my son. It's insanity. I've had some really good cries today with my mom, alone in the car, and in the hallway when I just couldn't be there for another procedure that was pissing off Simon (just changing the dressing on his face and his Broviac).
I don't know where we go from here. Shimmy is so beautiful sleeping in Jaime's arms. You can't tell that his heart is failing. He is perfect and so much love in such a small package.
Thank you for reading, thank you for leaving comments, thank you for being connected to this amazing being.
Thank you.

Laura

Tinkering

So Dr Newman just came by to check on Simon and talked to us so sweetly about how she sees our family and our care for Little Shimmy. She gave some wonderful advice about not getting stuck on the details as we tinker but to really be with him in each moment. For me it's the balance between being able to do that and still focusing and advocating for Simon throughout the day for quality of life.

She also mentioned again how sucking and swallowing is really hard work when you're doing them together. He's still very oral and can do one or the other, but put the two together and he's got a serious aversion (certain people and you know who you are...should please refrain from commenting on the previous sentences). He'll suck on his pacifier and swallow some rice cereal but won't do both at the boob. I got it tonight when he was really interested in a bottle of milk but only for gnawing and then equally excited to get a spoonful of rice cereal. However the 30 minutes that I offered him the boob when he should have been most hungry he was shaking his head fairly emphatically 'No I don't want that'.

My job right now is to let go of the intense desire to want to nurse him and know that I can offer him comfort in other ways. Dr Newman said he will write his own story and right now it's not about nursing for comfort. He does other things for comfort and some of them are even things that only I can provide. Speaking of, Simon did his first double take when Jaime arrived tonight. It was amazing to see. He was in his Mamaw's arms (Jaime's mom) and when Jaime walked in and sat down in front of him he turned his head from the book that he was reading, glanced at Jaime, went back to his book and then realized who he had just seen and turned back for a good long eye contact session with his Mama. It was a beautiful thing.

From a more medical front, he's still gagging and heaving some around feeding times but not really losing any volume which is great. He put on 80 grams this morning (about 2.5+ ounces) and seemed to do well with the overnight feeding making it through 8.5 of the 10 hours before waking up to puke a little. We're still on %100 breastmilk and have put on over three ounces over the last three days. Go Gordo!

We're still concerned about the stomach upset and considering an NJ tube versus the NG but not sure about what it would mean for his quality of life (really needing to take precautions that he not pull it out including mittens for the little man and/or even splints so he can't bend his arms to get to his face to pull the tube out). The GI doc made a point of asking how active he was and when I replied "very" she said that it was likely that he would need mittens and/or arm splints. Not my first choice for the little boy that just worked out getting his pacifier back into his own mouth. We're not in any rush so we're holding off on making a decision about that and seeing if he can settle some. The difference is that an NJ tube bypasses the stomach and delivers food right to the small intestines where it's immediately absorbed and since breast milk (or most liquids really) don't need to be broken down it's just that much easier on his body.

We know that we're in for a long haul and I'm still figuring out how to manage the 15 hour days with out frying to crisp. It's challenging. I'm working on it. I did manage to take three separate breaks today and get outside for almost an hour at a time. Jaime and I are still loving each other so strong and as for little Shimmy, he is doing exactly what he needs to, just taking it all in, drawing love and light to him. Even Dr Newman said that stopping by to see Simon was a highlight of her day. I love that he does that for folks. Love it.

Simon had his 99th visitor tonight with his Uncle J (Jamison) visiting. Simon was way into his uncle's sense of style as illustrated by the picture below.

Now the question is who will be lucky 100.

Love and gratitude to all of you out there.

Laura

One more Video

Here's Shimmy getting some grub from his MM (Mommies Mommy) Eileen.

http://www.youtube.com/watch?v=ODRh0DvwIqI

Big Picture Little Picture

Jaime and I got to go home early last night as the little man fell asleep around 7:30 and we figured (correctly) that he was probably down for the night. We made the mistake of watching some TV and while we got home around 9:30 somehow we didn't' get into bed until 11.

Stupid. I was already feeling tired today and it didn't help that when I arrived I heard that Simon's Broviac line wasn't working for blood draws and they had to poke him just before I arrived. I couldn't believe we were back to the poking times. I couldn't even bear to ask how it went knowing full well that it was terrible.

The rest of the morning was rough going too with Simon being more fussy and me trying to talk to doctor after doctor about tweaking his care. It was just a little more exhausting than usual. What was great was that our day nurse got the broviac drawing blood again and Simon didn't vomit at all today. He also put on 20 grams from the day before which was great.

Simon is still on a nursing strike which breaks my heart and contributes to the feeling of helplessness. He loves his pacifier though. Little Shit. Who knew I'd be insanely jealous of a pacifier?

I don't mean that but it's so hard not to be able to nurse him or even just offer him comfort in that way. It's not unusual for a five month old baby to go on a "nursing strike" it's just that much harder under these circumstances and I don't have any control over it since he HAS to get nourishment and can't wait to get hungry like a healthy baby would at home.

Tomorrow though the team wants to see how we can get him back on the boob both for nourishment as well as to try and challenge him a little given how well he seems to be doing.

He's going to get a 10 hour continuous feed during sleeping time and then just get two bolus feeds at 10am and 5pm during the day. That means that he has 7 hours to get hungry and work it out himself (with the boob right there for the taking).

We'll see.

The other great bit of the day was some amazing memory work on my part (not easy given my history). Dr Patel came by late in the evening and I asked him if he'd seen the Echo from earlier in the day since Dr Hunkypants hadn't been by to give us a report (after telling us that he was going to look at it and then come back and talk to us about it- what like he's busy or something?).

Dr Patel called Dr Rosenfeld right there on his cell phone (they're buddies- I caught them having lunch together the other day, sharing a chicken Quesadilla and fries- too cute) and got a quick report.

I also let him know that they were planning on poking Simon again later tonight for Coags, a test that for some reason didn't get done this morning when they poked him because of his Broviac not working. I reminded him that his broviac was working again and that we had started Cumiden again in the last 48 hours. He looked somewhat surprised and said "then why do we need to poke him tonight?" Right then and there he canceled that order and canceled the one for the Cumiden tonight so that we could get a better read for tomorrow. I'm sure I'm messing some of the medical details up but the jist is that I was really glad to have been there and asking the right questions to help Shimmy have to deal with one less procedure.
Almost made up for the lack of nursing.

As for the Echo, no real changes, no further deterioration, and maybe even a hairline bit of improvement. I'll take it.

Tomorrow I must get out and take a break. It's hard. It doesn't feel good while I'm doing it. It doesn't even feel good after I've done it. Why do it then? Beats me but people I love and trust keep telling me to do it.

One last thing: If you're leaving a comment and we've never met, we'd love to know how you came to us. We like to talk to Shimmy about how wide the web is.

Many many thanks.

Laura

Here's Simon eating more Rice Cereal. Mmmm Mmmm Good

Umm maybe not so good

Eileen giving our Nurse Carol a private Pilates Lesson (that's coming right off our hospital bill)

Another Mellow Day

My first day back at work was a little overwhelming in the morning but felt better by the afternoon. Laura said Simon's morning was a bit rough too. He was puking pretty hard and they finally figured out that his NG tube was in too far. Once they fixed it, it seemed to be a fairly smooth day. We've also decided to give Simon only the banked breastmilk until Laura can clear the Vicodin and Ibuprofin from her system. We realized that that may have been contributing to his stomach upset too.

Haven't had our fabulous, kooky, bathing-obsessed nurse Carol in a few days and Simon is FILTHY! Carol needs to come back on shift and scrub that baby from head to toe :-)

Oh, and mystery solved. My friend Cherry was the Trader Joe's elf! *Mwah*

Trader Joe's Elves?

The Trader Joe's elves came tonight! We just got home and someone clearly stocked our refrigerator and freezer. Who was it? Fess up! We want to thank you properly!

Had a mellow day today- all about grandparents. Had all my parents visit today and Laura's mom came in around 5 and I (Jaime) got to clean the house a bit before starting work again. Feels much better.

A few photos from today:

Us on a walk

Grandma Nola holding the little man

Trying to eat a toy from Liz. Mmmmm dinosaur eggs.Reading the sweet letter from his Great Uncle Barry

Lightening the Load

We just had a visit from Dr Patel, one of Shimmy's Cardiologists, and we worked out a slight change in his regiment. Simon's been throwing up more and we've been thinking that it's likely because of the iron that we've been giving him two times a day. It's an oral medicine and the nurses keep telling us that it's hard on the stomach and even few adults tolerate it well. Simon's puking seems to be clustered around the morning and evening feeds with some spit up happening in between but the significant up-chucks are right around the iron-in-the-stomach times. Dr Patel explained that along with the EPO shots that he's getting there's always the iron supplement that goes along with it but that maybe we could stop both of those.
WooooHoooo!! Those are the most difficult stresses on Shimmy right now. A shot twice a week and iron in his stomach off the table :-) I like it.
We're also moving from Simon getting his Lasix (a diuretic) through his IV to giving it orally three times a day. The less that's going through his IV the better. Dr Patel said that next week we may even start to let Shimmy get a little hungry and see if we can get him back on the boob for nourishment instead of just comfort. He's really only been nursing maybe once a day and only really in his sleep which I think is about instinct more than anything.
I do want to write something specific about how in the last week or so I've felt an even greater partnership with the folks here at CHO. During the first month I would hear from them "you know him better than anyone so let us know what's going on." I definitely heard them but thought yeah yeah you're saying that but what could I possibly have to add to his healing at this time given how sick he is. I know, I know. That's just me feeling inadequate and helpless about this whole thing and I've always been an important part of is recovery.In the last couple of weeks it's really felt like that much more of a partnership with folks here. Nurses really understand that we've been trained and can do a lot of basic nursing care for him and the doctors really do want to hear our observations about him given that we're here with him 15 hours out of every day. We can say that his vomiting seems to be clustered around a specific time. We can report that he's sleeping more but that his sleeping is restful and not fitful. We can say that he tolerates his feeding better over 45 minutes or an hour instead of 20 or 30 minutes. AND, they take all of that into account as they're prescribing or discontinuing medications for him.
It feels good.
Love to All

More pics from another solid day

Having a pretty mellow Sunday morning. Simon was very clever and got his NG tube out this morning so we had to put it back in. It was time for a new one anyway, so while it wasn't fun for him to have it replaced, it was going to have to happen soon. Laura's Mom comes in today for a week which is great timing as I'm going back to work tomorrow and my Mom's schedule is picking up now that her academic year is starting (she's a professor). These next few months are going to be very interesting trying to balance everything.

(Anyone available Monday Sept 22nd to spend some time with Laura/Simon? My Mom will have to work all day and I'd love to get a little coverage).

I'm freaking out about our house looking a bit like a disaster zone. It's just a matter of putting things back in their place- our dining room table is full of folded clean laundry (thanks for doing the laundry, Mom!), there are about 15 glass bottles from Simon's milk in the kitchen, etc. Spending a hour or two at home will probably help me feel a little more settled before I jump back in the work river. It's so intense to shift gears back and forth. I've been really grumpy the last day- once I'm doing both (work and hospital) it's fine, but it's the gearing up that is really stressful.

Off to snuggle the baby to sleep so Laura can pump...

A little rice cereal
Adorable pair, no?
You talking to me?
I LOVE grabbing Mama's nose!
A little sweet snuggle time

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).

http://www.youtube.com/v/EosHgRW-VG0

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.

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

http://www.youtube.com/watch?v=KtHxxfETAcI

A good day

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.

Parents a Little Rough Around the Edges

Simon 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...

Mellow Day

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...

Hold On To Your Hats, People

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

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

Day 37

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.

Visits

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 Jaimeandlaura@google.com account.

You can log on to the gmail calendar at https://www.google.com/accounts/ServiceLogin?service=cl&passive=true&nui=1&continue=http%3A%2F%2Fwww.google.com%2Fcalendar%2Frender&followup=http%3A%2F%2Fwww.google.com%2Fcalendar%2Frender
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

A Little Reflection

Deciding not to go the transplantation route and talking more with the doctors about considering palliative care feels liberating in some way, tonight at least. It feels like we now have a little more leeway in deciding what we want to happen with him. It's like the pressure is off somehow and is making space for other possibilities. Our focus isn't on "go, go, go! Get better quickly because the clock is ticking".

The appeal of the transplant option, to me anyway (Jaime), was that it was something to *DO* instead of just waiting. I was against it in the beginning and then was grateful when it got to be a closer option because it was an ACTION. Now I feel good that I know definitively whether or not it's really an option for us. It makes things more simple in some ways.

It feels like we've stepped out of the race and now can really surrender to what is supposed to happen and make space for miracles, whatever they look like. I now know that I don't need to save my 5 weeks of unpaid leave for a transplant possibility. I can start to use some now, after I talk to my boss, to be present for my son who may be dying or may be healing. Either way, I need to be there to help him as he begins to go down the fork in the road he will be on.

This whole experience has been the most intense "be in the moment" practice. Last night through this afternoon, I was in such deep despair that the room felt wobbly. Tonight I am filled with a little glow of hope that something is shifting- cosmically, in Simon's body, in our approach, something. Tonight something felt different and I am waiting to see what it is.

It's like I had to completely surrender to this experience and now I can let it flow instead of holding tightly to what I want. With the "action" option taken away, we now wait to see where Shimmy will take us instead of dragging him there.

Here he is tonight, feeling better than he has in a few days, with Auntie Alicia:

I (Laura) just came in from a brief moment of lying out in the back yard. Roxie came out and sat next to me knowing that this was time to be still and not necessarily time for the late night
wrestling that we've been fitting in to a very full day.
I lay looking up at the stars remembering that this is all so much bigger than just myself.
Arms up I let it be known that I surrender.
I just give it up.
I will do my best to ride this wave of love, and support, and pain, and unknowing.
I felt the night sky heard me and took my surrender in to her vastness.
Tonight I feel lighter than I have in a long time.
Tomorrow we will see.


Some one wrote to us:
"wow! what a powerful little soul. Look at all the good and loving intentions he's drawing from others. The undeniable power of sisterhood in the selfless giving of gifts. This generosity of spirit is the foundation for a better world. It seems to me that Simon is summoning the healing energy in everyone around him. His life, is already a wonderful example of love."
I love that last line. I love Jaime so much, I love Simon, I love our family. So much love.
Thank you

Coming to a Crossroads

After a very hard meeting with the Stanford doctor, we have decided with 99.9% certainty that we will not pursue a heart transplant for Simon. It's an experience that we wouldn't wish for Simon and wouldn't wish for our family, nuclear and extended.

There are many reasons, but the bottom line is that it is a life-long, trauma-filled, pain-filled process with no guarantee of outcome. Some of the most unappealing portions:

- almost guaranteed cognitive impairment (level unknown until after surgery)
- likely months long wait for a heart and Simon would have to be transferred to Stanford to be on the list which would mean Laura in Palo Alto and Jaime in Oakland, potentially for months.
- Lifelong medications without which he would die. Kids often hit adolescence and have normal rebellion and decide they WON'T take them. As the surgeon said, "they die".
-Some of the mandatory drugs frequently cause cancer
- Cardiac catheterization to do biopsies of the heart at least 12 times in the first year

We know that many of you may have very strong feelings about this, in all sorts of directions. We really aren't in a place to answer questions about why we decided what we did. Just know that this is the most difficult decision we have ever had to make and need love and support, regardless of how this goes.

This leaves us with two possible outcomes.
1. Simon stabilizes and stays on Milrinone in the ICU and gets better. He may get much better (not very likely at this point but what we want) or a little bit better and be very sick all his life.
2. Simon continues to get worse and we decide it's time for palliative care/hospice and have to say goodbye.

It's impossible to convey the level of grief we are feeling right now. We're unclear how long it will be until we know how this will go. We will continue to update you all as we have more information. We're still holding a flame of hope for his recovery and beginning the process of accepting that he may not stay with us for much longer.

Simon had a relatively great day today.

And so we end this post today with a ray of hope.

With all our love

Laura and Jaime

Rough Night

We went home around 9:30 last night and went to bed, exhausted at about 10 or 10:15. Roxie, our dog, woke up at about 1:30 and Laura went out and sat on the deck with her for a while because she couldn't sleep. (I slept thorough it) Then I woke up, wide awake at about 2:15 am. Roxie needed to be let out again, which isn't typical, and I just couldn't sleep. I had a very strong urge to call the hospital but tried to sleep. At about 3 am we decided to call just to check in.

Every other time we've called at night before we go to bed or first thing in the morning, they say, "he's just been sleeping- he maybe needed his pacifier once or twice, but otherwise slept". Ashley, his night nurse, said that actually he'd had a pretty rough night and had been throwing up continuously starting at around 1:30 am (also unusual) but had just fallen asleep. We asked her to call us the next time he woke up and then cried and talked until about 4, when we fell asleep again and no one called us so we slept until about 6:30 am.


When we got here this morning, Ashley said they had tried to give him Tylenol and he puked it up. Then they had everyone hold him and try to soothe him, including Dr. Williams who was the ICU doc that admitted him. No dice. He finally did fall asleep but not easily. One of the nurses said, "he missed you" or something to that effect, which felt like a dagger to the heart. I'm not sure if we'll sleep here tonight or go home and have them call us if he wakes up miserable again.


He's okay this morning, but definitely more grouchy and clearly doesn't feel well and his stats aren't great.


We're trying to set up a meeting with the ICU attending, the Cardiology attending and social work to talk about our options. Whatever they are they don't seem good. We both feel like we did the first week we got here- like a truck ran over us and then backed up and did it again.


It's not likely that he would have a complete recovery, but we haven't heard that it's off the table. He seems to be getting worse, which is scary and sad and horrible. What we need is for him to stabilize and then get better. I really hope that's what happens.

Went to Stanford

We've just learned more than any parent should about heart transplants.

Now we have some very difficult decisions to start to think about.

This is truly horrible.

Simon is so full of life...

We will try to keep people up to date on the day to day but our process re: this decision when/if we have to make it is likely to be private.

Thank you all for all your continuing love, support, energy, joy, hugs, food, dog walks, emails, comments, calls, smiles and thoughts. Thank you for all of it. We couldn't have made it nearly this far without it nor would we be able to go the rest of the way of this journey without you.

Taking a Turn

When Laura got to the hospital this morning and they did rounds at about 8:30 am, they had some labs back. The most dramatic information was that his BNP, which measures the hormone released when the heart is in failure, was about 2800-2900. In normal hearts, it's 100. Last week, it was 1100.

We will be meeting with Dr. Clifford Chin, a transplant doctor at Stanford, this afternoon at 1:30 pm. Our cardiologist called him and they got us in today. They're not necessarily saying that we're needing a transplant, but he's definitely getting worse and it's on the table.

The thing that we're looking for over the next couple of days is for Simon's symptoms to lessen. They've upped his Milrinone and put him on IV diuretics to help ease the load. We got to see xrays from a week ago compared to this morning, and his heart is considerably more dilated, even to the untrained eye.

We're just in a 2-3 day holding pattern. Our 2 options seem to be a) back on Milrinone, stable here or b) moving more quickly towards a transfer to Stanford and getting on a transplant list. It is possible to stay on Milrinone for months and then get better.

Stay tuned...

Some Adorable Pics to Lighten The Mood

This little Piggy is trying to eat his way out

Simon had a few too many drinks after a long day at the office

(One of his nurses, Sara, made this onesie for him!)

Mamaw and Shimmy, making googly eyes

Simon, putting his hand on Jaime's during sleep

This video is Simon on Sept 2nd playing his new favorite game, "Hair"

http://www.youtube.com/v/Vjq7CiIsQTw

Rough Road

I may start dreading these weekly family conferences.

Not because there are any real surprises but because there are often things spoken out loud that, when I'm going feeding to feeding with Simon, I don't keep so much in the front of my mind.

Turns out that while we've been told that there hasn't been "much change" with his Echo cardiograms, that the "much", in fact, has been a trend towards not getting better versus getting better. His heart has slowly been getting more and more dilated and although the ejection fraction has improved a tiny bit the fact that it's getting bigger means that his heart is getting sicker. While this is not an emergency it's not a good sign for complete recovery. It also means that we should begin to prepare for the *possibility* of a transplant.

Dr Rosenfeld has put Jaime and I in touch with Dr Rosenthal at Stanford for a preliminary meeting about transplants. Hunkypants (Rosenfeld) said that we're not that much closer to needing to get on the list but he'd rather we have the information in our heads than not. Really in his mind, a transplant was never completely taken off the table to begin with.

Simon has been gaining weight but they'd like to see him gain more so we're upping his fortifier again and hoping he'll tolerate it. So far so good and he hasn't thrown up the bovine laced breastmilk yet. Holy cow does that stuff stink- it's really no wonder that his farts are even that much more potent and that those videos of father's passing out or wearing gas masks while changing their babies are making so much more sense to me now.

Jaime had to leave shortly after the family conference to get to work and that sucked, so if anyone wants to buy us a winning lottery ticket I wouldn't say no.

It's still so hard to reconcile this amazing little baby that's reaching and grabbing for things with increasing dexterity, talking up a storm, showing preferences for certain books and toys, and bestowing the most amazing smiles, with the test results that say that Simon Fitch-Jenett, medical record # 916792, is in heart failure and after almost 5 weeks has not improved at all and in fact gotten worse.

I don't understand it.

I had a really good cry this morning and now am back to the nap-to-nap rhythm of the day.
The short term goals for the next week are to wean him off the Milrinone, get him up to his maximum dose on Analapril (one of his take home meds), observe him for an additional week and if all that goes with out a hitch, think about sending us home. That's not to say that he's better in any way but that we can at least be at home as we head into the longer term (3-6 month) observation period. That means that if everything is PICTURE PERFECT we can maybe look at going home in 2 weeks. A frightening silver lining around all the transplant talk.
I am heart heavy. Kind of an ironic saying given what's happening to our little boy.

Jaime speaking:
Wow. Leaving Laura after the family meeting at the hospital and going right into a work meeting that was already running was brutal. Coming back to the hospital this evening was also really hard b/c Simon is definitely breathing harder. It's so scary and feels like we're back to square 1 in some ways. I just have flashbacks of holding him that night while he was panting and gasping and staring me right in the eyes, looking terrified and there wasn't anything I could do.

I had another episode like that tonight a little when he couldn't breathe b/c he had a bunch of snot and needed to be suctioned. It was a terrible cycle that he couldn't breathe through his nose so he couldn't go to sleep with his pacifier, which upset him more, which made it harder to breathe, which make me freak out. Laura wasn't in the room (she was grabbing a few bites of dinner in the conference room down the hall) and I hadn't been with him all day so I wasn't sure if he was breathing a lot harder than before or just a little. I was feeling a little panicky and our nurse (a float we'd never had) wasn't near by. I kept saying I was worried about his breathing and wondering out loud if we should get a doctor and she kept saying he was fine and I wanted to punch her. He hadn't breathed that hard since we first came in. I'm NOT into having new nurses at this point.

I finally had to put him down and got her to suction his nose. which pissed him off in the extreme and made me wonder if he was going to go off the charts and then he settled down. I was shaking almost the whole time.

I don't realize how much I'm lulled into a somewhat false sense of security and peace when he's acting like a normal baby. Maybe that's just good coping- I'm in the moment. When he's good, I'm good and not really worried. When he's not doing so well, I'm vigilant. I just know that vigilance will be a double edged sword if/when we go home.

Laura writes a few hours later:
Theresa, Shimmy's nurse tonight, was talking to us about her children, the youngest of which was born just a few weeks before Simon. I asked to try her stethoscope as it was one of the ones that was recommended to us for when we go home (we have to listen and count heart beats before administering one of his drugs). The free one that they gave us is kind of crappy and we were told that investing in a hospital grade one for our situation would be more than worth it). When I commented to Jaime that she had the exact one that had been recommended to us, Theresa said "here, you try it and then you keep it. I have more at home".
She just gifted us with a very expensive piece of equipment. Top of the line, perfectly suited to little Shimmy. We also learned that she has more milk than Berkeley Farms and is more than likely supplying Simon with some of his banked breastmilk.
I don't quite understand it, this whole situation. The hell of it and then the moments of graciousness and beauty. It's all more than a little overwhelming, confusing, horrific, and beautiful.