Up and Down

As Jaime said today had it's moment's. For the first 3/4 of the day it was really about feeling like I was going to lose my mind (seeing Simon with unadulterated fear in his eyes) but then we ended the day on a huge high note complete with photos. Check him out...

I think it all started with a little Pop Culture. (You need to click on this one to see his expression)

Then...tucked neatly into his bed, Shimmy enjoyed some lullabies from his Mama

Until finally he could repress it no longer....that smile!! The one that we'd been missing for the last week. It's back.
Granted it's well balanced with lots of other expressions letting us know how he's feeling about the needles and lines and poking and prodding but holy crap the smiles tonight were a huge gift. It's kinda like when he wasn't in the hospital and would take us right to the edge (with sleeping, baths, etc) and then throw us a bone. Big bone today :-D

Love to you all.

One week later

Today has been a little rough. When Laura and I called in this morning to check on Simon to see how his night was, the nurse said he was pretty agitated all night and didn't really sleep. My poor Mom was at the hospital with him, so she didn't get much sleep either.

I kind of think it's the "he's getting better so he's feeling worse" thing. He hasn't slept all day so far, minus a few minutes here and there, despite a sedative! He's mostly just crying and irritated and it's making Laura feel like she's going to lose her mind. I feel mostly terrible for him and occasionally a bit woozy from the stress of it.

We have turned the right side of his head into a freaking arts and crafts project, trying to keep his Intra-Jugular line (IJ) from getting pulled out. The kid has an IV in his jugular. It's so crazy. We've tried everything from rolls and rolls of tape to what I thought was our piece de resistance last night- wrapping gauze around his head until he looked like a WWI fighter pilot who crashed down in some foreign land.

Unfortunately, he was not pleased about our artwork and stayed up, furious and scowling (it pushed his little eyebrows down so he looked like a menacing prizefighter) until we ditched it this morning. The nurse added a spacer so the big arm of the ports is a little further down the line and pulls less at the site where it's attached to him. He already pulled out one of the sutures that was holding it in, days ago. Scrappy little baby.

I also decided on his stage name. When he gets fed anything through his Naso-gastric tube (NG tube) it's called lavaging it (pronounced leh-vahge), so I think he shall henceforth be known as Shimmy Lavage while on stage.

Presenting Scarlett Bottoms and her son, Shimmy Lavage!

It's got a nice ring to it, dontcha think?

The bounty just keeps coming. Had biscuits, raspberry empanadas and a plate full of bacon dropped off for breakfast, got incredible pulled pork with all the fixins plus cookies at lunch and a bunch of lovelies from my dance troupe attacked our backyard. This morning they weeded, mowed and planted indigenous blueberries while Roxie ran around with her best friend, Murphy, and one of my troupemate's children picked blackberries and fed them to the puppies. Seriously, the love is out of control.

We're going to stay over tonight and just take turns holding him. Dr. Newman, one of the ICU doc whom we love, heard about his night and said she just thinks he wants to be held. We were pretty "attachment parenting" before all this, so I'm sure sleeping alone in his bed all night is a rude shock. I think that's the thing I miss most right now- I love just throwing him in the orange sling and walking around with him, snuggled against me, watching everything passing by until he falls asleep. I keep going on little walks around the neighborhood near the hospital and thinking, "Oh, I can't wait to take Shimmy on this walk" and then realizing that that's not going to happen any time soon. Ah, that it were so simple as an IV pole.

My goal is one thing removed every day. They took him off the positive pressure oxygen, which basically means he's now breathing on his own, without any air being forced in through his nose. Which reminds me of a really funny thing that happened in the first few days here.

The nurses were changing shifts at one point and our nurse was giving the new one all the relevent data. The new one asked if he was on "Roumaire" and our nurse said no. I knew he was on a lot of meds, but didn't remember hearing about that one, so I asked what Roumaire is for. She looked at me funny and then, realizing my confusion, said, "Room air". I just about fell on the floor laughing. Reminds me of a funny story about my stepdad and lasagna, but that's for another day...

Endless Bounty

I just stood in the living room with my head thrown back, laughing, at the overflowing bounty. We just walked in the door at 10 pm to get some sleep, after stopping by the security desk to give them cookies that Joan baked (need to butter those guys up since we're making them work overtime with our entourage).

We called our friend Robert to see how Roxie is doing (he and his boyfriend Reid are taking acre of her) . He mentioned that he didn't have a chance to put the food that got left for us into the fridge. We'd already been home 10 minutes and hadn't even seen that we had food and if we hadn't called him, we would have just gone to bed and let a delicious meal from Alexis go bad (split pea soup, salad, homemade goat cheese and mozzarella pizza and cookies!). Then I walked into the backyard to see that Cherry had mowed our lawn. This is just today...

We went on a walk today to Bake Sale Betty's and a complete stranger said, "Jaime and Laura? I'm a friend of your friend's friend and I just wanted to say hi and ask how Simon is doing". I'm beginning to feel connected to every single person on the planet through Simon. It's the most amazing feeling.

I can't begin to describe how it feels to have so much love coming to us, from so many different directions, in so many different ways. Everyone is showing up in their own way. Folks that can't handle the hospital are helping us at home. Folks that bake are baking. Folks that know and love our dog are taking care of her. Folks that don't even know us are sending us messages from all over the planet, just to let us know that they're there and they know. That's the best thing for me right now. To know that thousands of people know and are sharing our burden with us.

I just keep whispering to Simon when he cries, "I know. I know this is happening to you. I see it. I'm right here and I know". I want him to know that this is really happening and that he is not alone. I plan to keep talking about this experience long before he has words- tell him the stories again and pave the way for him to process it all because he's going to have some serious shit to work out.

The things that have happened to him (and to us) I wouldn't wish on my worst enemy...

I do think that this is one of those experiences that will make our family stronger. One of our doctors had a little chat with us about how things like this bring some people together and tear others apart. It was a wise word of warning...

The very first night (or morning) when Laura and I sat in the conference room off the ICU and lost our shit as they intubated our son to keep him alive, I grabbed her face, looked her in the eye, and told her that the most important thing to me through all this is our relationship. I am not willing to be one of those couples that falls apart. Shimmy came to us because we are a powerful force *together* and anything I can do to keep us going strong, I will do. Not splitting up at night is the most obvious way we are doing this. Sometimes it physically hurts to leave him by himself in the hospital overnight, but some nights we just have to. He has a nurse just there to watch him (the highest paid babysitter we'll ever have, one of them said) and I think it's more important for us to be intact. It's a horrible choice to have to make but it's one I can live with...for now.

Okay, off to watch the finale of "So You Think You Can Dance" and then to sleep.

Too Hard

How different a post from this morning. Simon is still stable and his stats aren't any different but F***'n A, the ups and downs are really hard.
He started to pull on his jugular line again and Maria (tonight's nurse) and I worked for about an hour taping the shit out of the little man. Once again I was holding my son down while he cried and used every sad angry pissed off expression he knew how to let me know that this was something that he hated. Again, there's that impulse in me to rip out all the lines, scoop him up and just wrap him in my arms take him home and stay in the shower with him for days to wash all this away. Since I can't do that and he's not going to be better anytime soon the impulse then is for me to run and simultaneously hate myself for wanting that. Holy shit this is hard. Hardest thing ever.
How do you handle this for 4-6 weeks? (That's the newest timeline). I mean, I know how. I know that there are more ups and downs to come and it's the ups that feed you and taking care of ourselves is so important. And with the downs, I have to lean on folks that are here and cry and know that it's a marathon. Yeah that.
Simon is resting now and we're going to keep in his bed and just do a bottle feed tonight so as to avoid the disruption of transferring him from the crib to my lap. With so many lines coming out of the sweet little boy it's hard to reconcile the bliss of having him at my breast with moving him and the risk of dislodging his jugular line.
Tonight the risk wins out and we bottle feed. Tomorrow, we'll see. It's so clear that he loves being back on my boob and it's so good for both of us. We'll see.

Thanks to all for reading and sending love and light.

A new day, a new dawn

Short and sweet since I want to get back into the ICU.  Our amazing midwife and lactation specialist Amrit came by yesterday (she stayed for hours) and as usual worked some miracles.

Simon got on the breast last night (just for suckling while my breast milk went into his NG tube so that he didn't have to work so hard) and the little man just settled into a blissful state for about 15 minutes. They've upped his intake from 15cc's to 18cc's and then again this morning to 24cc's!! Yay breastmilk!!

This morning Simon got on the boob again and is now napping in his Mama's lap. Before falling asleep though he was giving both of us amazing eye contact and with just a little coaxing, gave both of us an incredibly familiar full face light up his eyes SMILE!!! We nearly burst from joy.

His echo cardiogram isn't looking that different but they said that's to be expected and that his other functions and demeanor are getting that much stronger is something to hold dearly on to.

The other amazing news is that they are thinking about moving him next door which although is still the ICU is called the Annex and is a small but definite step down in the care that he needs.

Jaime and I are well rested today and really feeling the 8/8/08 luckiness that's supposed to be in the air.

Rock on Little Man!!

Long Journey thoughts

The day has been a long one and while Simon is still stable and getting stronger on a minute level there are moments that are just frickin' hard.
This afternoon after Simon spent a wonderful hour+ in my lap napping he got his first bottle feed!!
He had five minutes to see how much he could drink out of 15cc's. Only five minutes so that he wouldn't tire himself out and only 15cc's as to not overload his exhausted little system. For the first 2.5 minutes it seemed like he had just forgotten what to do with something in his mouth. Then he started to chomp a little getting a few drops here and there. And then during the last 15 seconds he all of a sudden remembered that he likes breastmilk quite a bit and sucked about 10 cc's down in three strong gulps. Later today we'll up the amount and then give Little Shimmy some "recreational time on the breast." That might be my new favorite-est combination of words ever. Say it out loud. It just rolls off the tongue
That was a wonderful high point.

Then came the harder part. Simon's jugular line was being pulled taut and actually started to pull out a little and we needed to tape that F****er down so as not to risk needing to re-poke him. It took both Jaime and I assisting Margaret, another amazing nurse, several minutes of holding, taping, re-taping, maneuvering, and repositioning Simon to get a somewhat stable set up. I thought I was going to lose it by the time we were finished. I don't know that I can do that again. It just hurt my heart to be holding him down and causing so much pain and frustration for him.

My head knows that it was imperative but my heart felt torn from my body and I thought I might faint and/or need to run out of the room- something I never ever imagined that I would feel in connection with my sweet little boy Shimmy. Blech blech and double blech.

The shine from yesterday has worn off a little and there's more of the realization that we are just in for a very long journey with so many ups and downs in store for us. Our work is to relish and delight in the highs and try and move quickly through the harder times, being as present as possible for them and then looking towards that next chance to celebrate his indomitable strength and spirit.

Love to you all out there pulling for him.

And yet more

Simon stopping to smell the roses (from Mamaw D's garden) Mommies loving Simon
The New York Contingent gets some face time

Simon wondering about his new 'do
Close up with B-squared

Some Photos of the Journey

From this...
To this...
Simon lovin' up Bernie and Bruce
Marvelling at the baby boy

Big Boy Bed

Well, Simon just graduated from a super high tech isolette bed to an actual crib. Doing much better. Had a good night. He's actually crying today which is sad a little, but a bit comforting b/c it's a normal response to what's happening. Yesterday he was just pretty quiet and looking around which was a little eerie.

On another fun note...

I just got off the phone with my insurance company. Evidently Children's Hospital Oakland is not contracted with John Muir, which would have given us 100% coverage. Instead, it's contracted with Beechstreet, which is a part of our insurance, which gives us 75% coverage. I just did the math. If this costs $1 million, which I'm guessing it easily will, that's...um...$250,000 we would be paying. Uh, yeah. Not so much.

I'm praying that we can do what Laura did when she had her motorcycle accident. Her bill was $100,000 and they offered to give her ten cents on the dollar, so they only had to pay $10,000.

Simon is so going to a U.C. school. No private school unless he can write a kickass essay about this whole thing that will win him a full scholarship somewhere :-)

Dr. Hunkypants

Oh, and this is his Cardiologist. Dr. Howard Rosenfeld (aka Dr. Hunkypants)

Not kidding. This is not a T.V. show.

Tubin' it no more

Wow. What a difference 24 hours makes. Simon is now off all sedatives and pain killers, has had 2 IVs taken out and been fed breast milk 2x via his feeding tube.

Oh yeah, and at 10:30 am, Simon got his breathing tube out!!!!

He was a little punky right after and then just took off with flying colors. He's back. Nurses have been walking by saying, "Oh! Now he sort of looks like that baby in the pictures!" We've been in incredibly high spirits.

Laura, Laura's father and I have all gotten to hold him for hours. They took his blood gasses right after he got off the machine and they were OK, but then, after we'd held him for a few hours, they took them again and when our nurse got the results, she actually cheered out loud because they were so good. She said they were so good because of the holding and we'd like to agree.

We've had 3 new nurses today and all have been fantastic. Louanne was our nurse starting this morning and she was a total mother hen and correctly remembered which of us was "Mama" and which of us is "Mommy"- something we sometimes can't even remember. Then we had Cissel, the sweet Norweigan and now we have Kathy, the super sassy blonde with a shoe fetish who is the blonde version of our favorite night nurse, Carol.

A few highlights:
- Today our friend Eric goes to security desk to get a visitor tag. Security guard at hospital with 191 beds says, "let me guess-for the Fitch-Jenett baby?".

- Respiratory therapist chats with me at the sink and says, "wow, do you guys come from really big families or something?" I reply that I'm an only child of an only child of an only child and she shakes her head in amazement and says, "We have so many babies in here with NO visitors. You guys have a village. " I just smiled and said, "yes, we do."

- Turns out that our friend from the dog park is the head of oncology here and has been totally briefed on our situation, his patients often have this condition and he's trained 1/2 the doctors we're working with. He'll be by every day to check on things and made it clear he'll kick ass if need be (we've had the MOST amazing care so it won't be necessary)

- We're the favorite hang out spot for all the queer staff (of which there are evidently many), including the super cute resident, Dan, who is totally George from Grey's Anatomy, but gay.

- We're estimating that Simon has over 10,000 people (including 8,000 Buddhists) sending him love, praying for him, visualizing health for him and that know about him.

- Simon has had *32* visitors and he's only been here for 5 days.

- Our friend Joan's colleague at the Native American AIDS project made him a dream catcher with Hawk and Eagle feathers and their drum circle has a song just for him they'll sing every Monday and Tuesday until he's out of the hospital.

- We've put up signs in the waiting room with his picture saying that his Mommies want to share the love and support that they're getting while he's here and to PLEASE eat the food we've left out. We've gotten incredible feedback from other people waiting here that they're really appreciating the overflow of love and food.

-Dr. Mohler, the pediatrician who admitted him at John Muir, came here to see him on Saturday just because we made such an impression on her and she lives in our neighborhood. We reminded her so much of a family she worked with years ago during her residency here. The baby had the same condition and is A-OK now!

Bottom line...we have a super long road ahead of us, but we are at least on the road now. There may be setbacks, but the extubation was a big test and so far Shimmy is passing and it looks like it's only going to get better from here. Nurses keep commenting on how obviously loved he is and how much it's helping his healing. They see all ends of the spectrum and I'm going to take their word as Gospel and ask y'all to keep it coming.

I keep visualizing this intense force field around him just pulsing with a low "thrum-thrum" sound. He's so present now. It's delicious. We honestly don't know that he would be at this high point without all the goodness coming at him.

Thank you.
Thank you.
Thank you.

It's a New Day

It's a new day and we're full of hope. We got to the hospital at about 8 am after sleeping for *9* hours at home while my Mom stayed in the hospital with Simon. He slept really well last night with one little glitch that is kind of funny. My mom said that at one point last night, she woke up to alarms going and a bit of commotion next to her, at his bed. She didn't even look over, but just sat up and announced "He doesn't LIKE that side". She knew they had tried to lie him on his left side, which he hates. He stopped breathing (I imagine it like the pissed off 3 year old holding their breath until they get their way) and was kicking like hell.



They let it ride for about 20 minutes and then readjusted him. He quieted down immediately. My mom wanted to say "I told you so" but kept her mouth shut :-)



This morning he is completely breathing on his own, at a normal pace but still through the breathing tube. It's pretty impressive when I think about it because he's actually breathing through a skinny little straw, so when they take the tube out, it will be that much easier for him. He's totally off his sedation and pain meds and is really quite content. He's awake and kicking his legs a bit but not frantically, just like normal, active baby. The cardiologist, Dr. Patel, not Mr. Hunkypants (Dr. Rosenfeld) actually gave an eyebrow raise when he said "he's doing well", like he couldn't believe quite how well he was doing. That's the first time a doctor has said something like that since we got here.



Once the tube is out and can stay out, we will get to hold him. He'll have to be on a pillow since he still has a line in his jugular vein on the right side and an IV in his right hand and leg, but we can hold him. Amen.



We've had the most incredible outpouring of support. I just got an email from a woman I don't know, from a listserv I'm on, who is in a singing group that comes to Children's to sing for kids and their families. They want to come sing for Simon. We're going to check with the nurses today to see if we can have a visit from them and get video of it.



Laura has heard from people she hasn't talked to in years...it's been so sweet.



So now we wait until the extubation happens and *don't* hold our breath :-)

Simon's Gifts

Another day, so much love and baby steps for Simon.
Jaime and I are home once again in the hopes of getting some solid rest before Simon has his ventilator tube taken out (extubated). The loose plan right now is for extubation sometime between 4 and 7am early tomorrow morning.
Today has been all about offerings. Simon has been offering us baby steps in recovery in that he has started initiating breaths on his own, been able to be stepped down on some of his medication and has been maintaining a strong and consistent heart rate for most of the day. His ventilator is working on providing only 13 breaths per minute down from 22 and then 18 today and even though the ventilator number is at 13 the breaths are staying around the mid 20's which means that Simon is doing the rest.
He was able to get some breastmilk through his feeding tube and has already pooped his pants twice. Little shitter :-)
The catheter was taken out if his little penis and one IV was able to be removed from his left foot.
Given all this there is a good chance that they will try an extubation but we were also told that it's not unusual for baby's to need to be re-intubated three to four times.
After a wonderful breakfast of CHO cafeteria food Jaime and I both agreed that we can begin to sit in the "complete faith" place, so for right now, tomorrow is extubation day and we only move forward, however slowly, from here.
Jaime and I are slowly feeling like ourselves (although forever changed) with familiar ways of being coming back into our days. We're still feeling our hearts wrenched but we're also getting back to familiar ways of being (with each other, friends and family, Simon's nurses and doctors, and even the security guard who checks us out of the parking garage each day). So along with the heart wrenching there's some joy, some humor, some sassiness, and lots of talk about food. We even had a nurse share some of her borscht with us tonight because we've made a fabulous connection with her.
We forgot to mention that yesterday Simon got a powerful several hour healing from Vicki Noble, a dear friend and colleague of Dianne, Jaime's mom. Vicki was able to settle just about everyone within a 10 foot radius around her but more importantly Simon responded in no uncertain terms with a strong pulse right within his optimal range and several hours of solid rest.
For the most part he's continued that today and the gifts just keep coming.
Simon got some wonderful cards with hearts on them, a homemade hat, a dream catcher with hawk and eagle feathers (from a drum circle that sings for him every Monday and Tuesday), we switched out his snugglies with two new ones that Jaime and I kept in our shirts all day so that they'd be strong with Mommy smells, some wonderful fresh lavender, and of course many many emails and messages from the Army of Simon lovers that are out there.
Right now there seem to be thousands of people holding him in their hearts with so many of you sharing his name and situation with your extended communities, houses of faith, and wonderful families. The love is felt. It truly is amazing.
Thank you Thank you Thank you.
More later.

Little Fighter

Well, we are not quite surprised but Simon Lev showed his spunkiness once again and not quite in the best way possible. Last night at around 4am Simon decided that he was done having a tube stuck down his throat and coughed out his intubation tube. His team decided to see if he could breathe on his own and very quickly assessed that was not the case and re-intubated him.

He will stay on his ventilator for a while longer and is once again heavily sedated.

I love that he's got such a strong will but I'll also love it when he stops fighting the things that may be uncomfortable for him right now but are in fact keeping him alive.

Mostly I just keep repeating "what the F***!?"

Jaime and I are trying to settle into some sense of regularity in terms of what the next long-while is going to be like. It's unbelievable to realize that for the next several weeks, months, what ever, Childrens' Hospital is where we'll be spending most of our time. That Simon won't be going to his Friday swimming class. That he can't be nursing, in his sling, or sleeping soundly in between Jaime and I.
What's harder today is that we're even discouraged from touching or talking to him as that stimulates him in ways that aren't helpful. What's hopeful is that they're thinking of giving him some breastmilk tomorrow via his feeding tube.

His heart is still enlarged but beating mostly at a consistent and healthy rate. It is still inflamed but with the ventilator controlling his breathing and the different sedatives and pain medication that he's receiving, he is resting right now and that's the most important thing.

Tomorrow is another day and we're hoping that instead of today's "just maintaining" that we might even begin to see some improvement.
Thinking about the future in the long terms runs the gamut but more than anything I want to think about telling Simon this story at different stages in his life and have it be an incredible place to have come from as he goes through other and hopefully less difficult moments.
The phone messages and emails are a gift to us for when we take a break from the I.C.U.
Thank you for all of them and the lasagnas, brownies, cookies, fruit, and most importantly the love. We all thank you for the love.

What's to Come

Breathing is hard to remember to do but Jaime and I and Simon are all working hard tonight to gather our strength, breathe, and get ready for tomorrow which could potentially be a really big day (and if not tomorrow then pretty soon thereafter).

Simon has stabilized to the point that tomorrow morning they will assess whether or not he can begin the extubating protocol that will eventually result in him being back to breathing on his own. It's a several hour protocol and will only begin if he can make it through the night relaxed and stable with some, if any, of his stats improving (including his heart rate, respiratory rate, blood oxygen levels, and blood pressure).

He has had two transfusions of blood and has begun to get what is essentially gatorade through his I.V.

Jaime and I spent some time at home this afternoon gathering things to make his stay just a little bit more pleasant and in the picture you can see that we've plastered all the available space on his equipment with photos of himself in more robust times as well as the many folk that just love the bejeezuz out of him. He's also surrounded but his pony and duck that hopefully have the strong scent on Jaime and I on them as well as the birthing beads that were made at his Baby Shower (that we never got to cuz the little bugger shot out so fast)

He's already become a darling of the ICU and has the most amazing nurses looking after him (us too).

If he does in fact get the tube out tomorrow and get off the ventilator it also means that for the remainder of his recovery he will remain on sedatives but be much more aware and in touch with what's going on in terms of the number of needles in him, where he is, and the fact that he's not going about his regular business of swaddling, cuddling and canoodling with his mommies. In other words we are getting ready for little Shimmy to be letting us know in no uncertain terms that this time sucks buckets. For those of you that have been lucky enough to be around him when something is not going according to his plans know that he speaks his mind loudly, in such a way that not only are your heart strings tugged upon but they in fact feel like they are being ripped from your body in terribly painful ways.

Can't wait.

Really though it does mean that we are all on an active road to recovery, whatever kind it may be, AND that Shimmy can soon be held and eventually get back to nursing and looking into his Mama and Mommy's eyes.

We're off to bed now.

There are not enough words to thank everybody for the messages, emails, and palpable love that seems to be flooding in.

Are hearts are full, and keep it coming.

Todah Rabbah ("huge thanks" in hebrew)

Laura, Jaime, & Shimmy

Simon Update (warning, graphic pictures)

Simon is stable.

His stats now are good. His pulse is now normal, about 120-140 (yesterday morning it was about 200), his respirations, with the ventilator, are about 25/minute which is the low end of normal (were at about 90 yesterday morning) and his bp is normal. He's got 13, count em, 13 lines attached to him.

He's going to stay intubated and sedated at least until tomorrow morning to give him time to rest. Tomorrow they'll assess and maybe begin the process of extubating. We're in no hurry b/c it's helping him gather his strength.

We think we're going to sleep at home tonight, at the very strong urging of his nurse, because once they stop sedating him, he'll know if we're there or not and we'll want to be there. We know that at some level he is aware right now of love coming his way, either through sound or touch, and so much appreciate the fact that with the overflowing of people showing up, he's not been alone for more than a few minutes since this whole thing started.

We've had the most incredible support. We had 12 people at the hospital today, which was amazing for us and annoying for the hospital staff :-) Visiting hours are 8am - 8 pm and we're going to have people hang in the cafeteria until they come up to see us (limit of 4 on the floor at a time).

If you're praying or visualizing, we asked the doctor what to think about. He said "getting the bad humors out of his heart". He also said that his heart is inflamed and exhausted, so send it cool and calm energy and strength. He must chill.

Trying to settle into some routine...

Here's some pics of Mr. Simon

His Pony and Zackies are providing warmth, smells of home & mommies for him all the time.

Day 2 of Hell

Jaime speaking...I just got back to the ICU here at 2 am after sleeping for about 5 1/2 hours. I hadn't slept in 36 and was starting to lose it so I went home while Laura's sister stayed with her here. I don't have words for any of this but I'll try because it helps me to tell the stories.

He's sedated right now which is so much better and so much worse than before. He can rest now, doesn't fight his tube, gives us a little break since he has to be in his isolette and can't be held and is HORRIBLE because he can't be held, in almost no way resembles himself and if you catch him, as I just did, in between doses when he's slightly lucid and making eye contact, he thrashes around a bit (he's still the same scrappy baby) which isn't actually good for him.

I just got here and went to check on him and his eyes were open. At first they seemed a little vacant and I wasn't sure he really knew I was there but then he started moving. I kissed his head and talked to him and could tell he knew it was me. But then he got so agitated that his nurse (he's so sick he has his OWN nurse) had to check on him b/c his heart rate monitor started alarming. I stepped back and sat down in the rocking chair in our area, out of line of sight so he could calm down. I have just been crying and crying (and I'm not really a crier, for those of you who know me). The nurse came over with tissues and said to not be afraid to touch him (I think she meant in a general sense), but when I asked if I should leave him alone right now, she said I could be near him but it was better to let him rest so probably best not to touch him right now.

To feel like showing affection to your own child can hurt him is just about the worst feeling I have ever had.

Any light at the end of this tunnel feels too far away to be something to hold onto. If he's going to get better, it won't be apparent for at least 5 more days and he'll be here for at least 3 weeks. That's the best option. I have no idea how we will make it through 3 weeks of this kind of hell but people do it all the time. We just have to pace The biggest thing for Laura and I is not wanting to be separated from each other. Leaving tonight to go sleep almost killed me but I knew if I didn't I might just completely fall apart and that's not really helpful for anyone.

I feel a little more human now. I'm a little less numb with more sleep which is good and bad. I just sort of have tears streaming down my face as a state of being. I hope things feel better in the morning.

I will say that we have THE most incredible support I can imagine. When the social worker came by yesterday morning and asked what kind of support we have, we actually laughed. I don't think they've seen the likes of us before :-)

Keep the love coming, keep the visits coming, and most of all keep your loving, grounding, stay-in-your-body energy for Simon coming. He's the scrappiest, strongest baby I've ever seen and I'm thinking if any baby has a chance to make it through this, it's this guy.

With all my love

Jaime

Some Tough News About Simon

Dear Friends and Family

Jaime and I needed to get out an update about Simon as he is in serious need of your loving thoughts right now.

We're still in a huge amount of shock but on Friday afternoon Simon was admitted to Children's Hospital Oakland in critical condition. In less than 24 hours Simon went from being our lovely fabulous healthy little boy to having heart failure and needing critical medical attention. We're not entirely sure of how it all happened but with shortness of breath and a simple visit to the pediatrician to rule out Pneumonia, we've somehow ended up with our little boy having Cardiomyopathy meaning that his heart is not functioning well enough.

They're doing all kinds of tests to find out where the condition came from (likely not from a structural defect but possibly from a virus or metabolic anomaly). Simon is on a ventilator right now and will be for at least the next 48 hours with three possible outcomes. A) He will recover from this in a few months with no lasting symptoms. B) He will mostly recover and need to be on some medications for the rest of his life. Or, C) His heart will not recover and continue to function poorly, he will not be able to get off the hospital regiment and may or may not be in line for a heart transplant.

Our cardiologist says that we can be optimistic that Simon "looks like he's not dying" and is young enough that option A is something we can really focus on.

With him being on a ventilator and having two major lines for medications, observation, sedation and pain medication, he is right now resting relatively peacefully after about 30 hours of putting up a massive fight. He is truly incredible and if I never have to see him being that "incredible" again I'll be most pleased and grateful.

For those of you that are in the area and would like to visit, Simon will be in the hospital for the next three weeks at least and we'd love for you to be able to have him hear your voice and know that you are present. Visiting Hours are 8am to 8pm and our friend Dre will be setting up a visiting schedule as there isn't much room in the Pediatric ICU. Her # is 510-499-7590 or andreanaclay@gmail.com

Jaime and I appreciate your loving voicemails and messages thus far. We're not going to be that good about getting back to folks right now. Our world has turned upside down and we're working on holding on.

Our friend Joan tells us that her tradition says that once a person laughs for the first time that means that they are anchored to this world.
Little Shimmy is well anchored then...just in time.

We are all grateful for your loving thoughts helping to hold him tight.


From the three of us.

Jaime, Laura and Simon