From Sonya

On Celebrations of Life
So this week while I've been recovering from my surgery (and feeling very connected to Simon-sharing his spitting up and puking noises and proclivity for food up the nose, as well as the more serious feeling of time being marked by the flow of meds) I've been thinking a lot about your Celebration of Life tradition. In the past 12 years I have mostly thought of it as celebrating the fact that you are still alive. Celebrating the fact of life-your life-and your narrow miss with losing that life. Somehow this year's journey with Simon, and my own journey of recovery have made me think about it as a celebration of more than just the fact of life, but also as a celebration of the nature of life, and the nature of life including this crazy journey of life and death and uncertainty and unknown. It has made me think about the nature of life being like the ocean you swim in every year on your anniversary-so much bigger and wider and more powerful than we are. You can kick and scream in the ocean and she doesn't care. She'll bring you the waves she chooses, not the ones we may want. She'll dunk you under and bring you up again and it'll be both freezing cold and exhilarating all at the same time. And it will be so unknown and so unknowable-the true nature of the ocean. And our relationship to it has to be one of surrender and acceptance. Otherwise you will never catch a wave, never feel the pull of the tide on your body. You can't fight her-the peace comes from the surrender. Well what if the nature of life is also like that? Life brings us the full package, the happiness, the grief, the life and death, and it's all part of Life with a capital L. And we have to have the same relationship of surrender to it-we don't get to just pick the happy and alive-Life comes with all of it. And it is that acceptance that leads us to faith and faith to peace. I've often heard Christians describe difficulties in life as God challenging their faith, a test of faith. Even not in religious terms I think I've come to the same conclusions- that Life (with the capital L) includes it all and takes us down a path, a journey, of surrender and acceptance that leads us to faith in some way. Faith in Life. So this year when I Celebrate your Life with you I'm not just celebrating the fact that you are alive and the fact of your life, but I'll be celebrating the nature of Life and the whole package of what Life has brought this year and where that Life is taking us--into peace and faith. I love you. I'm glad that you are alive. And I'm glad for Life. Love-Sonya

Life truly does give back--many times over--what you put into it. Never forget how amazing you are and have faith that the power within you can create the life you want.-----Maya Angelou

Bed 22, I Love You

Wow, last night was intense in the ICU but not for us. They got at least 8 admissions before 7 pm and it turns out someone passed away at about 6:30 pm. We got moved back to bed 22, out of the regular ICU, at about 9 pm and are THRILLED!

I was over on the other side to check on one of our friends, Mikey, and was chatting with one of the nurses who sometimes has him. She was asking about Simon because she heard he got pretty ill again. His day nurse who had him Mon, Tues and Wed was there and describing how serious it was. It's always eye opening to hear an ICU nurse talk about how sick he is when he really tanks. Thea, the some time nurse, was saying, "really he was that sick"? And Sarah, the one who had him this week said, "uh, yeah. He was grey. Like really grey. I kept saying they needed to move him over to the other side and told his next nurse that they had to watch him and really keep the doctors on this because he was looking terrible".

Megan, our regular night nurse, said yesterday that she wasn't sure when she went off shift on Monday night/Tuesday morning if he'd still be here for her next shift. Also, turns out that about 6 nurses have a Simon phone tree and call the ones who are off if he gets worse just because they all love him. Some of them have only been his nurse one or two times.

It's all so sweet and so terrible.

Our resident, Brian pointed out that Sunday is our *100th* day. Seriously. Yesterday it was 14 weeks and tomorrow it will be 100 days of this. I asked if we get a gold pin with a diamond or something. Unfortunately, I think we just get a really big bill :-) Oh yeah, and an even bigger community and new friends.

Nippling With the Best of 'em

Simon is seriously the scrappiest person I know. Kid is now drinking out of a bottle like a champ (mostly), sleeping really well and awake for about an hour at a time (he was sleeping 24-7 pretty much the last 3 days). While he's sleeping a lot it's a sweet deep sleep, different from the fitful almost catatonic sleep from before. His heart rate is better than it's ever been- maybe it's the Milrinone but he's hardly on any (down to 0.3 from 0.5) . They said if his IV conks out, they'll just leave him alone and not put in a new one. They decided they don't need a central line, so no more procedures on the little man, assuming all stays as it has been!

Looks like the GI bleed is resolving and he's barely lost weight according to the weight we took this morning. They're trying to get us back in the Annex tonight- they have to shuffle people around and get some kids, including Jasmine (!) upstairs and out of the ICU. Jasmine *walked* over to see Simon twice today. She looks great. we'll be really sad to not be neighbors with her anymore. We really bonded with her and her family- It's been sweet to bring each other food and little presents in the mornings and such.

It's amazing to me how quickly kids can get sick and how quickly they can start to bounce back. Laura has the word resilience tattooed on her back to remind her of how resilient she is after her motorcycle accident. I think the little man got some of that from her. They just want to live. All I can say is how grateful I am that they are both alive...

I was thinking today about how every year Laura gathers the group of friends that kept her going right after her accident and they relieve those first moments/days. I wonder how we will integrate all of this with Simon. I wonder what he will remember. Hopefully all the love and fun and sweetness and support. I think that's what I will remember, more than the scary moments. The joy amidst the fear.

Silver Linings

I honestly think optimism and pessimism are hardwired. I feel very lucky to, for whatever reason, almost always have a filter of seeing what is good in any situation. I am so grateful for that ability, especially now. I also think part of why my marriage to Laura works so well is that she has the same philosophy.

We realized that there are 2 silver linings to this most recent development. First, we are SO lucky that this infection presented before we went home. Everyone here has said that it's inevitable for a Broviac to get infected at some point, and that usually kids that go home with one end up presenting in the ER with a raging infection because it takes a few days for parents to notice something is wrong. So we caught this early. Also, even though it will be sort of crappy for Shimmy to have regular blood draws the old fashioned way, it's way better for us to have the Broviac removed than risking it getting infected again. So, Shimmy will go home with no IVs!

The second silver lining is so great. They have been holding Simon's feeds since last night because they want his gut to have a chance to chill out. Today he started getting really fussy and Laura stuck her finger in his mouth. He immediately chomped on it and started sucking. Laura asked for some Sweeties (sugar water) and he went crazy for it. One of the cardiologists was nearby and Laura's sister, Jen, asked her if we could try a bottle. They normally would have wanted to hold all his feeds because he's going to have his Broviac removed soon but she said we could try Pedialite. The kid sucked down 40 mLs! He has had a really major oral aversion for the last 8-9 weeks and the one thing we were pretty worried about in terms of going home was his lack of interest in eating orally (he has a tube that feeds him right now). He's been sucking on a pacifier all afternoon which is so crazy because he abruptly weaned himself a long time ago.

So, when we go home, we'll have an almost totally wireless kid and an eater!

They will put in a Subclavian central IV line tomorrow but for right now he has a good IV in his arm that they can use for his meds. Infectious Disease docs want them to wait as long as possible to reduce the chance of the infection not being totally killed and recolonizing the new central line.
Update: just had a great Celebration of Life dinner celebrating Laura's 12th anniversary of her near fatal motorcycle accident. We had 2 of our hospital friends plus 10 of our "Framily" come which was very sweet.

Simon had his Broviac removed without incident.

Also, my Mom had an incredible conversation/session with her friend Louisa Teisch who is a priestess of Oshun in the Yoruba tradition. Teisch said a lot of incredible things and clearly was "talking" to Simon. She really thinks he's going to make it and she is a very powerful oracle, so I'm going to go with that. She also said we all need to tell him, in our own ways, "We want you to live, we want you to live, we want you be here with us, please decide to stay.” It looks like he has, but he keeps clearly having to decide so let him know we want him to stay.

Simon and the ocean evidently have a connection, so if you have a chance, go to the ocean and send your blessings and requests for him. She also said 7 dimes are something important for him, so if you come, feel free to bring 7 dimes. Really, we're not trying to get our medical bills paid! She also said he is Yemaya's child.

He's on his 3rd bottle of Pedialite right now. Each one is 40 mLs and Laura joked that he's drinking a "40". We're pretty much always able to have a laugh over here, which is quite a blessing.

All seems well in bed 7 and hopefully this setback is actually going to end up being a boost in some way.

Over and out.

Back on the Juice

So the drama continues over here at CHO. We are no longer in bed 22 and Shimmy is back on 0.5 of Milrinone. After he looked like a big ole pile of pale, blue lipped, dark stooled crapola and puking stuff that looked like chocolate pudding, they diagnosed him with bleeding in his gut. His INR which measures his ability to clot was WAY high- we think the infection messed with his ability to metabolize Cumidin, the blood thinner and one of the things that sometimes happens when the blood gets too thin is that you can get a GI bleed.

As of 1 am his Coags (measure of coagulation of the blood) look a lot better and he is getting a blood transfusion to help with the anemia (likely in part because of his bleed).

Lab tests were showing an increase in Creatinine, which indicates that kidney function is not good. They think his perfusion (blood moving to an area) to the kidneys is impaired b/c of the infection and extra stress on the heart, so they put him back on Milrinone.

I'm trying to look at this as a setback. The doctors have said this is very serious but not to the point that they think they're going to lose him. It's crazy to have a doctor say that to me and I don't start crying, I just nod my head and ask more questions. To have someone say, "It's not like I think we're going to lose him" and not lose my crap is bizarre.

Not sure what this all means in the big picture. Hopefully tomorrow they will ID the bug(s) that are making him sick and kick it with more specific antibiotics. They're also planning to pull the Broviac tomorrow and put in probably a femoral IV.

I guess the roller coaster just continues. It hasn't sunk in that we're back in the regular ICU and that he was looking so horrible today- really, just like the night he came in. Right now I'm a little in "busy" mode and should probably try to sleep.

This bites.

Ever Seen The Movie...

Spinal Tap? I haven't but we're down in the cafeteria while Simon is getting a spinal tap to make sure his infection hasn't spread to his brain. The Infectious Disease doctor was worried because he has been out cold for most of the day and extreme sleepiness is a symptom of meningitis, or an infection in the lining of the brain. So...yesterday we thought we were going to go home Thursday or Friday and today Simon is getting treated for a family of bacteria (gram negative) that by their design release toxins from their outer shell and tend to make people go into shock. The crazy part is that I'm barely phased by it.

I was having horrible flashbacks this morning when I had to hold him down while a nurse put a catheter in to get a urine sample (couldn't get one) and stuck another one up his nose to get a mucus sample. I felt those familiar cold fingers grip my gut while the Infectious Disease doctor was telling us that gram negative is really serious and that she wanted to rule out meningitis. It was sickening to walk in this morning to our baby with blue lips, looking pale and ghostly again. We both were having flashbacks to August 1st.

AND we know how this goes. Two steps forward, one step back and we just have to pace ourselves. Everyone here has said how fortunate it is that he got this infection while he was still in the hospital. It's pretty common to get an infection in a central line and kids often don't come back to the hospital until they're pretty sick with it.

I think in the big picture, I'm actually feeling like we'll all be fine and this is just a setback, but right now it sucks.

We're laughing right now, because they had warned us that it might take up to an hour to do the tap and we haven't been gone 5 minutes and they just called to say they're done. YEA!

Just came back up and he is *stoned* on Morphine. It's a little funny and a little disturbing. He's probably just going to sleep for the rest of the night...

Laura Writes:
It's been quite a day but once again I have had my "intuition" backed up after having been placated for most of yesterday that Simon was not really that fussy. I just want to scream "told you so" but I get it. There really wasn't anything to do until he presented with something. When he finally presents, he presents big. It seemed like when we were first told about the bacterial infection and that it was gram negative that it was actually a good thing. Not as serious as a staph infection like last time. It wasn't until the Infectious disease folk came up (and not even the first ID doctor but the 2nd) that meningitis was even mentioned. I felt like a huge bucket of ice water was dropped on me. Really?? Meningitis? Really?? We were just on the brink of getting home. Almost 8 weeks of steady uphill days. Test scores getting better, a successful wean from Milrinone, days/weeks gone by without a symptom....and then this.
I'm crushed. I feel almost, not quite, but almost defeated. I know I'm not and it's just the end of a really rough day but frikkin' A.
Obama better win. Prop 8 needs to be defeated, and Shimmy needs to not have Meningitis. Please.

7:55 pm Test results back- NO MENINGITIS!!!

Update

So we're not going home for at least another week. Simon has a bacterial infection and has to go through a full course of anti-biotics for at least 7 days. It's not a staph infection though so we're still waiting to hear exactly what the bug is. The good news is that right now it doesn't look like we have to go back on Milrinone and we seem to have caught it early so that the bacteria might not be too widespread. We're waiting to hear if it's from his Broviack line (which would then need to come out) or if it's from somewhere else. They key thing we're waiting for is to find out if he'll respond to the anti-biotics if it is in the line (and it could stay in) or that it's not infected the line and is from another entry point.
His fever right now is down to normal and the color is coming back to his face. It was not a pretty picture this morning when we came in. Too similar to three months ago. We're watching his blood pressure and holding off on some of his meds until we see it come back to normal. He's been sleeping almost non-stop since we came in this morning around 7am (it's now almost 12). I'm fine with that. Rest up little man, rest up.
The cardiology team is still thinking positively right now and it's great that he's managing on his own reserves.
Jaime and I are sickly relieved not to be heading home in two days. A week will be just fine. How wrong is that? Not wrong I know. Just part of this whole insane process.
Blech.

Not Gonna Happen

Simon spiked a fever last night. Not sure what's causing it yet. Started him on anti-biotics early this morning.
F**K!
F**K!
F**K!
More news when we get it.
Roller Coaster rides suck.

The Countdown has begun

Jaime and I had our first discharge meeting this morning (Jaime via conference call) regarding our going home. We didn't necessarily hear anything new (broviack care, NG protocol, meds, etc) except for the exciting/terrifying news that we might be discharged on Thursday not Friday and that Susan, our cardiac nurse would actually like to have us ready to go home by Wednesday. I really think I crapped my pants a little after that meeting.

It was already a rough day with Simon being particularly fussy all morning and not napping well (curse the heart rate monitor telling me over and over that his heart rate was just a little higher than what's been typical). By tonight I had talked to enough people and tried enough things that I can feel comfortable chalking it up to teething, but damn if I wasn't a little out of my head with worry.

I know we're ready. I know that I'm more than knowledgeable about how to take care of him and what to watch for and notice. I also know that I am so very frightened of needing to come back here and Simon getting sicker again. It's all right there, I wouldn't even say "below" the surface. It is the surface.

I want him home so badly. I want to be able to control lights and sound. I want to walk him around the neighborhood again and have him see a variation on his world that we haven't had in months. I want him to watch Roxie with delight getting to know her as his dog.

And I am scared. Just scared. I have been doing his meds and keeping him on his feeding schedule for almost two months now. I know how to care for him. AND.... I've always had a second set of very well trained eyes to double check anything and everything with, not to mention the 5-10 folks that come around 2-3 times a day for Rounds, check-ins, and periodic checks or visits and the heart rate monitor, blood pressure checks and pulse oxygen check.

It's too much to think about all at once. At least I have a couple of days too integrate this information and then a couple of days with Jaime home for the weekend to get used to it. It's like right after he was born and Jaime went back to work all over again, but different.

Just working on breathing right now.

That and loving Simon's growing. Check out who knows his name know.

http://www.youtube.com/watch?v=kuW427cDTL0

And some pics

Here's Mr Shimmy enjoying his first Avocado

(either that or we've got the Incredible Hulk for a son.)

Here's Simon and Jasmine our neighbor enjoying one of their last nights together.

Weekend Update

Slightly challenging weekend, but not because of Shimmy. He's looking pretty good- only a little bit sweaty and a bit thrown off by the time change in terms of sleep.

The crappy thing is that Laura's Mom came on Friday and realized she hadn't really gotten over her cold and ended up going home today even though she was planning to stay until Friday. It's a big bummer but ultimately the best thing since we really can't chance it with Shimmy so close to going home. We're both super sad about it though :-(

We had a good weekend- today a bunch of friends came over and we moved every piece of furniture in our bedroom to make way for a crib (donated by a friend) and a few things in the living room. We're both tired and excited about Simon maybe coming home and also pretty stressed about it (esp. Laura). It's hard to have it be this close...

Had a wireless walk with Simon yesterday (look, no IV pole!) and Simon got to be in the rain for the first time.

This is what greeted us when we walked in this morning . Aaaargh. Halloween is never over.

Hello Chubby Cheeks! Who knew Simon would ever have a round face!?!

Happy Halloween!

Simon had 2 costumes today- 1 was "Wireless Boy" because he is off his Milrinone(!!!) and the other was "Heart Boy". His Muti Skeeter made him an awesome heart costume:

CHO was a very fun place to be today as they go all out with Halloween. Here is Simon's bed, decorated by Carol with decorations provided by our neighhor Jasmine's mom.

We're very excited, a bit nervous and a bit sad about the idea of leaving the hospital. It's really become home for me (Jaime) and I will miss the social time and all our new friends. But I'm really excited to have time in our house, cook and be able to integrate Shimmy back into the outside world.

Off to bed...

Tomorrow and Tomorrow and Tomorrow

Yesterday we went down to .1 and tomorrow, well, tomorrow we just turn the dang Milrinone pump off. Huuuuuge. It's also All Hallows Eve and the veil between the worlds is thin. Shimmy and I talked about how it's going to be a big day and all we have to do is breathe through it, welcome some ancestors or spirits that want to come and visit, and let them know that we're doing just fine, thank them for their support and we'll be staying right here in this world. His Mootie Skeeter made him the most wonderful leather heart outfit so we're going to do it up in style. We were originally thinking that Simon would be a big floppy and flabby heart but we're thinking positively these days so his costume is big but robust, and strong and vibrant. Jaime and I are thinking that one of us will dress all in blue and the other red and be his pulmonary vein and aorta respectively.
Shimmy's BNP was just a little higher this week with it going from 1121 to 1186. That's nothing. I'm not surprised that it's gone up given that we've mostly weaned him from Milrinone this past week. What I am thrilled about though is that it's only gone up 65 points. This from the little man who used to jump a thousand plus points in a week. 65 points....pshaaa.
I can't believe that tomorrow we're turning off his milrinone. It's only been 13 weeks! "only" riiight. He's looking good though and for the first time today an unofficial departure date was spoken out loud. A week from tomorrow, November 7th, they are thinking about sending us packing.
I don't know quite what to do with that. Faint from excitement? Wet my pants with terror? Not believe it and expect something to go wrong? Start bringing things home? All of the above? Not sure at all. All I know is that next Saturday we might be waking up, taking our time getting out of the house, and heading down to the neighborhood Farmer's market. All three of us. Simon will be seven months old next weekend (Sunday) and three months of that will have been spent in the hospital. Several weeks of those three months will have been spent wondering if he was going to live or not. And, several days of those weeks were filled with tears, collapse, disbelief and terror thinking that our time with our little man was about to end.
And here we are on the precipice of getting Shimmy truly ready to come home. Closer than we've ever been before. I know that we've been off the drug once before but not with Simon being so alive and strong and in his body. A body that keeps gaining weight. Last night's weigh in was 6.98 kilos!! Seeing him naked is a true joy each night for his bath. He's loving being au natural too since he's got some body fat going on and isn't freezing his little noogies off. He squeals with delight post-bath while Jaime is rubbing him down with coconut oil. But if course I do that too...just kidding, I don't really like baths :-D
Ok, little giddy tonight. I'll end with an email from our sweet friend Karen sharing a moment that she had on the 24 bus in San Francisco.
Love to all


Karen writes:
got on the crowded 24 divisadero bus this morning, fred and Zu are squeezing our way on. in the midst of the bus we hear a kid say "hey,that's laura's baby!"
and another kid "what? where?"
first kid "that baby on that button" and (to me) "do you know laura?? she's my school counselor!"
turns out a bunch of kids on the 24 were going to CACS (Creative Arts Charter School) in the morning. the most vocal of whom was a girl named Micah(sp?) and she wanted me to tell you hi.
such a small world, such big love for Shimmy.


Ain't that the truth.

Where we're at-- .2 Baby!

So we're at .2 on the Milrinone friends and Shimmy seems to be doing great. It means that we're one step closer to coming home. It's pretty intense to feel so attached to a timeline but we've been working towards it for weeks so as much as there's so much to be Zen and in the moment about, I can't help but feel attached to the idea of being home in less than two weeks. I feel a little taut about it. Shimmy's doing great. He's a baby, his job is to be in the moment, play with food, sit up on his own, enjoy his new big boy crib, etc etc. I'm the one that's kinda freakin' out.

I imagine that I could get back in to being at the hospital for a longer stretch if I had to. But right now and for the last several weeks, we've been working on going home...successfully (so far). I'm terrified for sure but more than that I think about my son, my wife, and I being in the same location day and night and it makes me want to cry. We need to get that boy a crib asap before he lands at the Fitch-Jenett abode! He's grown so much. Jaime and I were commenting that Shimmy has been happier than he's ever been. There's more smiling than ever before and while some of it is no doubt developmental I think that a lot of it is that he's so comfortable in his body these days.

Check out some of his new activities:

Playing in the new PICU Excersaucer (got to get one of these for home too- He loves it!!)

Look at me sitting up on my own in my big boy crib!!

Just hanging playing with some toys- On my own, sitting up.

Getting ready for MM to come and visit and teach me more Pilates

Gettin' caught up on some Pop Culture- Simon loves him some People Magazine (and some Auntie Dre)

Love to all.

A Story

Our dear friend Jasmine wrote a wonderful story about our baby and her dog, both of whom are going through some tough times
Enjoy.

Some time ago three friends had a conversation about life and their futures. They sat on the beach under the full branches of a pomegranate tree, purple as can be, and thought together about making some big decisions. They all agreed that children and animals were about the best things to be found anywhere in all of the world. On this night as they sat together under the brightly moonlit sky they decided to make a powerful wish---all together. They joined hands and danced along the shimmering seashore with their eyes closed chanting “bring us a miracle, to our doors, bring us a miracle, on two legs or four!”
And so it came to be. Jasmine soon came to be the mother of a small and infinitely special dog who she named Ticho. And Laura and Jaime became the proud proud parents of a one of a kind sparkly eyed boy named Simon. For some time the friends had to spend time apart, as they lived in different corners of the world, and as you may know, life can get busy these days. Their lives had ups, their lives had downs and as time passed by, and they all continued to fill with love for each other, things seemed like it was going to go well in life for all of them.
Then—what looked to be dark clouds blew into all of their lives. Simon learned that he had a weak heart. Of course being who he was, he fought back and worked his hardest to stick around and make his life happen. After all how could he leave the deep fierce love of his two moms, matched only by his same love for the two of them. Simon was a boy wise beyond his years, and he knew that although this was not what anyone had expected, everything was going to be all right.
Meanwhile Ticho had gotten difficult news too. His back legs were getting twisted and weaker and someday it seemed that he would stop using them. Sometimes when Ticho knew that his mother was not watching, he fretted over his legs. “How will I jump and play?” he thought. “How will I chase my favorite sticks?” Likewise when Mom knew that Ticho could not see her, she worried over those very same things.
And so time passed. And all three moms continued to love their son and their dog, beyond reason it seemed. Simon and Ticho loved them just as much right back. No one knew how their thorns would become roses, but they all did know for sure a Deep True Love and an unmatched appreciation for every moment they had together.
Soon Simon and Ticho began dreaming of new adventures, the way that a special boy and dog will do. Simon became interested in superheroes, and Ticho fell in love with the idea of flying. Simon read about superheroes, he drew them, he even dreamed of mighty superheroes, women and men alike, racing around the world helping others. Meanwhile in his own living room, Ticho would twitch in his sleep, and as he too dreamed, of flying through the air, his floppy ears soaring around his furry little face. If such a thing existed, he secretly would love to be a superdog.
Then one lucky day Ticho and Simon were able to meet. Simon’s moms had a reunion with old friends, and of course the super-special boy was soon introduced to the one of a kind dog. Ticho liked Simon immediately, and Simon liked him right back. In no time they were curled up in the corner of the garden under the shade of a juicy lemon tree, sharing secrets like they had been friends for many lives. They told jokes and they laughed and laughed while they rolled and played on the thick and and luxurious grass.
Suddenly Ticho sat up and said, “What do you wish for, Simon? A deep true wish?...” Simon looked around. He seemed nervous for the first time since they had met. H leaned over and whispered, ever so quietly in Ticho’s ears, “I want to be a superhero.” “No way!” Ticho cried. “For so long I have dreamed of being a superdog! I so want to be able to fly, I think about it all the time. Oh Simon what is a wonderful wish to have.” “It would be,” Simon said. “If I could be one. But I never can be.” “Why not?” Ticho asked, sure that his new friend could do anything.
“Well,” Simon said. “I have a weak heart. Superheroes cannot have weak hearts. “Oh,” Ticho said, some wind knocked from his furry sails. “I have weak legs. I guess superdogs cannot have weak legs.” They were both silent for a few moments, each one lost in their own thoughts until suddenly Simon began to smile broadly. Then he began to laugh and laugh. “What is so funny?” asked Ticho. “We are,” breathed Simon through his merriment. “We make quite a pair. The disabled superhero team. Don’t you see ---you have a strong heart and I have strong legs! If we can figure out how to combine our powers, we can both have what we need” Ticho’s face widened as he realized what Simon was saying. “We can do it,” he said. “Oh Simon, I know we can!”
And from that day on the two were inseparable. And Simon’s heart, it grew stronger and stronger until soon he could carry Ticho around, to rest his tiring legs. Before long Simon could run and skip, and he would carry Ticho over his head and run like the wind. Then Simon learned to ride a bike, and he made a basket for Ticho to sit in while they sped along. It was then that Ticho truly felt like he was flying, they both did, as the colors of trees and flowers whipped by them at lightning speeds. Their mothers had to come and get them, as the rosy dusk of evening fell, for the pair would get so caught up in their superhero fantasies and games.
One night, at a beach bonfire, when Simon’s mom and Ticho’s mom sat nearby, fading in and out of the firelight, Ticho turned to Simon and said, “We did it, you know. We are doing it, Simon. We are modern day superheroes. You –you are making your heart stronger…and you make me fly!!! If that is not a superhero, I don’t know what is. What hearts and love can do---they can do anything!”
Simon thought hard. Did he dare to believe it? Could Ticho be right? Simon’s heart felt so strong and full and loved that he felt like it might beat right out of his chest.
Nearby, the thorns on the heavy laden branches burst into the most luxurious rose blossoms, all at once.

Back in the Saddle

Ah what a difference a few hours of cleaning house, grocery shopping and an uber cheezy movie can make. I cleaned the house for a few hours this morning and had reveled in the snippet of feeling normal. Then Laura and I decided to go see High School Musical 3 tonight.

Holy cheesefest, but so fun. *Spoiler alert* We saw it in Berkeley and there's a part in the movie where a kid decides to go to UC Berkeley instead of another school and the entire theater erupted in wild cheering . It was really fun to be in a carefree environment for a little. I can't believe I'm saying this, but thank you Disney.

Simon had a great day- super chipper, napped fairly well, was Mr. Chatty and also turned over from back to front on his own! We're not going to contract his feeds or do anything with his meds this weekend which is kind of nice. We'll see how next week goes- we're all willing to go as slowly as we need to.

We also came home to our house smelling delightful b/c our friend Tanner came by and cleaned our house (I just straightened up earlier) and mowed our lawn. I should mention that we know Tanner through our birth group- they have a 6 month old baby too, Julian. Dude had time and energy and desire to clean our house. Seriously.

Okay, off to bed since it's crazy late!

Over It

I’m really over this. I’m over having to leave work early to meet with doctors and social workers to see if my son is dying or may have a chance of ever leaving a hospital (this week he looks good and like he may have a chance of going home in a few weeks). I’m over putting my son to sleep to the sound of screaming, furious, terrified children. I’m over having no control over the lights. I’m over having to give my baby 6 medications at night and 5 in the morning through a tube that had to be clipped to his clothes and that goes through his nose and is taped to his face and is always in danger of being pulled out or clogged. I'm over being worried every time I give my baby a bath that I'm going to get the IV that goes into his CHEST wet or dirty. I’m over waking up at 6 am every morning and going to a hospital for an hour before I go to work and coming back for 2 hours at night and seeing him for 1 hour before he goes to sleep amidst chaos and fear and pain. I’m over my house looking like a dumping ground because we don’t have the energy to put anything away or wash anything except for underwear, socks and Simon’s onesies that are covered in puke. I’m over obsessing over Simon’s heart rate and input and output and BNP and whether or not he’s sweating. I’m pissed that every other day I have to put him on a scale and wake him up after it’s taken me 30 minutes to put him to sleep because it’s the only accurate way to get a weight. I’m pissed that I’m so exhausted. I’m pissed that I haven’t cooked in *3* months. Me. Haven’t been in the kitchen more than to boil/fry an egg or dump dirty Tupperware in the sink and never actually clean it myself. I’m pissed that I have no privacy to cry over my son while he’s sleeping. I’m over being an example. I’m over being a trooper. I’m over “triumphing” in the middle of a shitstorm. I’m over saying, “he’s stable” with a little nod of the head and a shrug of the shoulders meaning “for now”. I’m over my mother having to burn herself out to help us. I’m over not seeing the seasons change in my neighborhood and feeling like I live in Walnut Creek at work and here in the hospital but not in my house. I’m over feast or famine social time. I’m over feeling like Laura and I can’t get any downtime to do anything besides worry about him, talk about him or call our nurses about him. I’m over worrying that he’ll make it through this and go home and then we’ll go through this whole thing again and that he'll die. I'm over worrying that we’ll hit our 2 million dollar lifetime insurance cap. I’m over mainlining sugar as a way to numb myself. I’m over waking up feeling a little dead inside or so tired I just want to crawl back in bed. I *never* feel like that. I’m over Laura and I fighting about stupid things like whether or not it matters if Simon had his Broviac clamps on when we tried to weigh him 3 times unsuccessfully tonight and woke him up each time and STILL didn’t get an accurate weight. I'm sick of minutiae. I'm over Simon not getting to wear 3/4 of his clothes because they go over his head and it's way too complicated with all his lines to do that everyday.

Today I'm really not feeling grateful or graceful or like coping or being a shining example. Today I feel like this all really, really sucks and I'm over it and I would really, really like Simon to get better. This is bulls**t.

Laura: Jaime said it.

Better and Better

So we started out the day a little rough with a little higher BNP (nothing to worry about but hopefully not a trend), Simon getting a shot, needing a new NG tube (clog, clog, clog), interrupted naps, and some extra pukeage but then we ended the day with an awesome nap, a really low heart rate, a great deal of smiling, and a sweet sweet bedtime ritual with nary a disgruntled peep before heading off to slumber.
So yeah, Shimmy's bnp was back up to 1121 but the team said that it's not really something to worry about and could even have been expected given all the ways that we've been stressing his little bod this past week. I can't say that I wasn't hoping for an even lower number than last week but also thought that it might in fact be up a little given the wean from Milrinone. I was glad to hear just about every doctor say that 300 points was not something to worry about and that we'd keep an eye on it but continue with the wean anyway since he was looking/acting so good. That, and during his later afternoon nap his heart rate was in the 80's when the little man was in deep/sacked out sleep. So we're down to .3 on the milrinone and contracting his feeds down to three hours with an hour off. We're on our way. We are definitely on our way. I want to stay on this road. It leads us home.
PopPop is on his way home. Already missing him.
And... Jaime and I are actually looking forward to a mellow weekend with things looking up all over the place.
Love to all

Wedding photos

Aaargh. A post got deleted.
Try this link for wedding photos from our friend/nurse Sara
http://www.flickr.com/gp/70089109@N00/0f2E59

Simon's at .4 on the milrinone (maybe to .3 today) and we're working on his feeds slowly to try and expand his tummy and maybe even get the little man hungry one of these days.
We're moving at a snails pace and I go back and forth between very ok with it and just wanting to get home.
Today is PopPop's last day :-( So amazing having him here. He will be missed by all especially Shimmy who has been more smiley and laughy than we've ever seen him. He's growing for sure but I think PopPop plays a big part in the little man's new found joy.

Love to all.

Weight for it

Jaime is singing to Simon right now and he's doing the very sweet head bob and lean that he's started doing in the last couple of days. I think there's not much sweeter than when he lays his head down on my chest with purpose. Delightful.
Today has been sweet with Simon having easy happy waking times with both me and my Dad, a Roxie walk for me, a nap with Shimmy for my dad, and a gentle going to sleep with Jaime (spoke too soon...whoops) and soon a dinner out with Dianne, Ed, Bernie, Jaime and myself to celebrate the past weekend's festivities and our third wedding anniversary (Oct 22nd) from wedding one. Simon had his medications redosed based on his new weight (6.7 Kilos!!) so he seems to be doing even better than before and it looks like we'll start the Milrinone wean again either tomorrow or Thursday and have it last for about another week. Once he's off of it, we'll take a look at how he's doing symptomatically and tinker some with his doses again. He's still a little more symptomatic than he was before the last weaning but even less so than he was 24 hours ago. Why? Because his meds were based on a 6 kilo weight. My boy is 6.7 kilos!! Have I mentioned what a porker he is now? That's 14.74 pounds! He's not really a porker compared to some but he's hefty, he's got rolls, and a second chin now. I love it.
His BNP won't be back till Thursday but I'm not expecting too much since we've been stressing him some this week. He also had another Echo today but who knows when we'll get that report back. Really it's more about the day to day and that's going swimmingly.
Thank you all for the love, thoughts, and smiles (I hear that yesterday's video is a keeper)

Paper Thin

Yesterday was wonderful. Exhausting and wonderful. We came upstairs after a really nice dinner with family post wedding and were washing our hands when a message came over the loudspeaker that a patient was coding in the main room of the ICU. It was the first time that we'd heard such an announcement and it was a powerful reminder of where we were. Yes, we had just had a wonderful ceremony and gathering downstairs. We'd had cookies and juice and friends surrounding us. Shimmy looked magnificent in his tux onesie.
And, we still reside in the intensive care unit at Childrens' hospital. The folks that our here (including us) are children and babies that are very sick. Not just sick but critically ill, on that line, sometimes moving one way or the other.
We've been here long enough that the nurses share with us when it's been a rough night/day or not and it wasn't until this morning that we learned that not only did the patient not survive but it was a friend and neighbor that we'd had in the Annex just a few weeks ago. One of the most beautiful little girls I'd ever met. Another cardiac patient who had been in out of the hospital since she was born. Her mom was considering going back to school for nursing since she was doing so well and while she was here we talked about how much we'd learned about medical care (what prompted her interest in nursing school and what makes me never want to be a nurse except for my own son). She borrowed some of Simon's toys and even walked them back herself when she was done with them.
We saw her mom as we were heading out to our wedding. We smiled and said "Hi" knowing that our little friend was back for a routine surgery.
Yuri died last night after an unexpected complication and I am feeling unbelievable grief. She was a force of life and a study in beauty personified. My heart is with her mother right now whose experience I cannot imagine even as close as I've come to it. Please send a prayer out to whatever god/dess or gods or forces you speak with and ask for her safe passage, easy rest, another great go 'round, and/or what ever your tradition offers.
It's a most powerful reminder that while the last couple of weeks have been bliss (relatively) we are still walking in the forest. Every moment with Shimmy is a gift. Life is more precious than we ever really know.

Here is a video of Simon experiencing being tickled for the first time and sharing a new laugh with us.

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

Nothing else to say.

Hitched!

Well, we did it! Laura and I got legally married today in front of about 30 new and old friends and family in a very sweet and very short (!) ceremony. We had cookies and juice with folks and then went back to our room for a bit. Then my (Jaime's) Dad, Stepmom, cousin, grandfather and his sweetheart came and we ate dinner in the cafeteria. It was a very sweet and exhausting day over all.

We will have more pics soon from lots of folks who were snapping away but here are some from our camera.

Also, here are the words to the song Cody wrote for Simon!

In His Eyes

speechless words with colorful expressions
countless verbs given every which direction
can you feel its so infectious
can you feel it now

a little boy with with love ahead to live for
so much joy with a mom and mom to care for
every bump and every bruise
there's so much he could hold on to

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

can't defer, hitting those same old potholes
on a long dark road but its the only way to get home
when you're there, there'll be room to grow
building castles on the beach and wings in the snow

moving forward each and every day
with all this hope we'll never let escape
baby steps is a small price to pay
for a long life to lead that wont ever fade away

so he opens his eyes, to realize
hes not alone in this fight, we all stand together
hand in hand side by side
with just a single tear, and some happiness, in his eyes

Here are a few pics:


Lookin' Gooood

Us with our neighbor Jasmine, who couldn't come to the ceremony :-(
Simon with Reverend Doctor Auntie Clay and Auntie Joan

Simon's bed, decorated by our nurses while we were gone

Our TV, decorated

Big Day tomorrow!

Tomorrow is the big day! I think there will actually be many more big days to come (Simon coming home from the hospital, Simon getting off his feeding pump, etc) but getting legally married is pretty big :-) For those of you who want to come, it will be at 4 pm in the Courtyard- check in at security to get a Floor 1-2 pass, go to the 2nd floor and follow signs to the Courtyard. And please, don't touch the bears. I mean, Simon.

We'll post some pretty, pretty pictures after the ceremony. In the meantime, enjoy these cute pics of Simon with is cousin Maya, Mama and Mommy.

I got one word for you. Trouble.

PopPop and the weekend are here!

Gosh I love weekends. This weekend a little more so since my Dad's visit started this afternoon. Shimmy was so glad to see his PopPop and was giving smiles all over the place. That and being a little fussy going to sleep but whatever...
Simon put on 3+ ounces since his last weight and that's awesome. He's still upchucking some but I'm ok with it, except for when it's first thing in the morning and I've forgotten to put the towel over my shoulder before picking him up. That's makes for a great smelling Laura for the rest of the day.
As much as I am so grateful for Simon's movement right now I do have to say that there is some crazy in the air these days. Things have been a little intense at CHO right now with neighbors and our friends on staff here. My heart is going out to lots of folks right now. I feel like I have empathy coming out of my ears with setbacks for folks close to us in the Annex and just a whole lot of love for Esther, our dear friend at the security desk who had a loved one recently diagnosed with cancer. There have been a number of babies in the ICU recently coming from abusive family situations and more than a few older patients that seem ok when they come in but get disturbing news once they're here.
It's tough, when our curtain is drawn it feels a lot like we have our own little pleasant space with a nice window view of the Oakland hills. Then there's the reality that a curtain is in no way a sound barrier and no matter what I do to try and not listen to what's going on, I can't help but hear certain things and of course sounds of distress and/or pain.
I try and talk with Shimmy about it, letting him know that he's doing ok and it's also ok to send other people love and light when they're not feeling so good. That and we like to bring in Arizmendi bakery treats for our friends that are on regular diets. Love, Light, and Sweet Sallys.
Thanks and Love to all in this exciting time

Officially Official

Today as I walked into the ICU even before I went to see Shimmy, I saw Brian, our new resident. I asked if Simon's BNP was back since it was Thursday. He hadn't checked yet but would let me know.
As I went to check in on Simon he followed right behind me checking over his papers. He said "oh I'm sorry, it's right here."
It was then, as non chalant as can be, he said "it's 798." I thought I hadn't heard right. 7 and 9 and 8. Down from the 1700's last week.
We're below a thousand folks!!
It wasn't until later that morning that I got the official word from Dr Newkhumet. She came by on her cardiac rounds and seemed just pleased as punch. She said it's not very often that they get to deliver the happy news and once a cardiac patient's BNP drops below a thousand it's official that he's in recovery.
FUCKING AWESOME!!! and a little terrifying but really...we're doing it. Simon's heart is getting stronger, he's growing, and we're on our way to some kind of recovery. We're not in stable land anymore, we're in recovery.
I don't quite know what to think or feel. In some weird way it's the surrealness that I felt when we first came to the hospital. Just a big WHAT?!?! Only this one feels that much lighter and full of Joy.
It's still hard to feel grounded in it and believe that it's not going to go away any second but dang it, it feels good.
PopPop Bernie comes in tomorrow and I can't wait to see his reaction to Simon. It's been almost two months since he's seen him and I think he's a completely different being from who he was back in late August.
10$ says he'll cry, any takers?
So much love and gratitude to all that have read, thought of, sent love, food and healing vibes to the little man. So glad to have you with us.

Going Down

We're at .6 on the Milrinone today folks. Tomorrow .5 where we'll sit for a while and just make sure that Shimmy's doing ok. I really hope that he can handle the wean. For most of today he seemed to be doing beautifully. Tonight as he was going to sleep his heart rate seemed a little higher than usual but he was also almost asleep when he was stimulated out of his sleepiness. I don't know. It's too easy to get really worried as things have been going so smoothly. It seems like it's been weeks without any drama.


Simon was doing beautifully today though. He was so happy when awake and went to sleep so easily for his naps. His breathing is so much more relaxed and his output is right in line with his input. Today he got to have some wonderful Grandma time with Mamaw D and Grandma Nola. Very sweet.

Our nurse David did Simon's hair tonight. Instead of the comb forward he got radical and went for the comb back. New look for Shimmy? You decide.

Send Simon strong healing thoughts please as we move forward with trying to get home.

Love to all.