Progress!

So...no Milrinone today, no Heparin today, moved back into the Annex and no PICC LINE!!! It closed off and they decided to just take it out and see how he does (after a 5 hour power struggle with our nurse and the resident, not to mention Laura holding Simon through a partial removal that was aborted midway. Simon did not appreciate it).

If he does need another IV, not sure if it will be a PICC or a regular IV. We think PICC because Milrinone needs to be given into a central or close to central vein. Hopefully we won't have to worry about that.

Those of you have visited in the last few days will be very happy to know that Simon got his stinky, smells-like-frat-house head washed.

See exhibit A (favorite nurse Carol after she washed his little head and wrapped it like a diva).
Then we put him to sleep without having to swaddle him or tie his little hands down because the only bad thing he could grab is his NG tube and that's not a huge deal.

Before PICC removed- see crazy ports and smelly, smelly tape

After PICC- smelling good, silly bald spot, peaceful baby, happy Mommies

Our nurse gave me the ports (they separate) so I can make pasties out of them someday. I think I have a naughty nurse costume in the works. How wrong is that?

Laura's parents leave tomorrow which feels pretty crazy. They've been our right hands through this whole thing. Laura now will be at the hospital most mornings from 7:30 am to 1:30 pm by herself. That might be a good time for visitors if people have mornings free.

P.S. Simon learned how to turn pages while in the ICU. Seriously- look at the video.

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

Terror and Delight

It's been quite a day here. The biggest news is that this morning around 10am Simon was taken off his Milrinone. He will be closely observed for about 48 hours but if his numbers stay stable and we don't really see a change in his fussiness, sleep, or regular personality, we are that much closer to going home. I have to say that when I heard that a part of me wanted to jump for absolute joy and another part of me wanted to yell at the doctors that they must be crazy and have their heads up their asses.

We're learning how to administer his oral medications (he'll have 4-5) and he may be sent home with an NG tube (feeding tube through his nose). I can't believe that they may discharge him at some point next week. It feels sort of surreal. We still don't really know what the limitations will be in terms of if/where we can take him outside of the house but it's incredible to think that we could have a little bit more normal.

He totally smells like a frat boy right now b/c they don't want to change the dressing on his PICC line because it makes it move and he's a sweaty cardiac baby so he's a little funky. Guess it's just a warm up for Junior High. I can't wait to take a shower with him again and wash all this hospital off...

Another funny note-
Last week Laura called Verizon to see what we could set up for the next month because we were over on our minutes with all this happening. She ended up talking to the rep for like 20 minutes and the woman wanted to know all about Simon and what was happening. We gave her the blog address and yesterday she left a comment. Even the Verizon lady is thinking about him!

Shuffle, Shuffle

So...just as we were getting cozy, they decided the census in the Annex was so low that they needed to move the 2 of us left (out of 6 beds) back into the main ICU where they had empty spots. ARGH!

Simon seems fine over there but it bites for the adults who have to cram and move all the crap we brought to the hospital (taking 1/2 of it home tonight) and deal with the noise and crazy energy. Hopefully it will only be for a day or 2.

Had a bit of drama today, mostly caused by me (Jaime). Laura has had pain in her calf on and off since her pregnancy and it' s back. It was a bit swollen behind her knee and hurt so badly she was limping so I forced her to go to the doctor to rule out a blood clot (my boss had one that caused a pulmonary embolism and put her in the hospital). She's fine and it's probably just a pulled muscle but I was not about to have her drop from an embolism in the middle of all this. I told her it's the price she pays for being married to a slight hypochondriac. It spills over sometimes.

Also, unfortunately, between when she called the doctor and we got to the doctors office, Laura lost her wallet. We're in the cafeteria calling all our dang credit card companies and bank.

Today's theme has been chaos.

Settling in

Sunday Night:
So here we are at the beginning of week three and Simon, Jaime, and I seem to be settling in here in bay 22 in the ICU Annex. Simon will have another echo tomorrow but we're not expecting to see anything different which is actually a good thing given that they're slowly weaning him from the Milrinone. The wean has also begun on the Heparin (blood thinner) with a subsequent substitution to the oral medication that we can take him home on. It's all good. It's not great but we're hanging on to the theory that every day that he's stable he's actually another day into his recovery.
Monday Morning:
So his echo cardiogram doesn't look any different but they weren't expecting it too (slow and steady, slow and steady). The big news though is that they're starting a more aggressive weaning of his two heart medications. The hope is that if he tolerates that, we can get rid of his PICC line by the end of the week!!! No more needles in his head!! They'll need to give him his Heparin via a subcutaneous line but that's tiny compared to the cyborg like set up he has right now.
The other crazy thing is that they're starting to let Jaime and I take over a lot of care so right now I have three syringes waiting beside me for when he wakes up that I will personally administer to him. Simon will be getting most of his meds orally right now and those are things that they encourage parents to be doing even before he leaves the hospital. It's funny to think that all of a sudden Shimmy's flavor experience is about to triple. He's going from knowing just what breastmilk tastes like to experiencing a minty flavor and couple of different fruity flavors. That's crazy. I guess he also knew what Symethicone tasted like but that was mostly just a sweet tasting gas-be-gone thing that we used to treat him with when he was super farty.
He's still nursing somewhat inconsistently throughout the day but better when he does in fact latch on. The little sucker nearly emptied my boob this morning and took his 75 ML's via his NG tube too. He's gaining weight a little slower than when he was on fortified breastmilk but still at a more than respectable rate. Yay for no bovine powder (for the time being at least- I can be happy with that and just fine if he needs it again).
Still no answer as to how this all started. They're closer to ruling out metabolic with just a test or two due to come back this week and the viral test results should also be back sometime in the next week or two. Dr Kate, when asked by my mom to say the most positive thing she could, said "I think we can be cautiously optimistic." Cautious feels right. I love thinking about Shimmy's first birthday party and his first steps and what type of pork product he'll enjoy the most (remember he doesn't need to be worried about a low fat diet :-) but I am also feeling very tender and raw about what we've been through and don't want to get blindsided by bad news. I want to be somewhat prepared. It's a delicate balancing act and while I'd much rather live in the place of birthday parties and first steps I feel a little need for the protective armor of the other side.
So, I think we're still here for a couple of weeks or more but the sun is breaking through the clouds.

Love to all

Laura

Ahhhh Saturday

Lots of visitors today. Simon mostly slept and ate today- as Laura said, it's like he's regressed a few months. We're going to have a Child Life Specialist come by next week- they can tell us what milestones/skills he might be missing while he's here and how we can help him catch up. He's still dependent on his heart medication and essentially still in heart failure but stable. Every day that he's stable is a day towards recovery.

Another amazing story...one of my coworkers came by today, which was very sweet. She said she was talking to her friend Michelle about what her (my coworker's) plans were for the weekend. She mentioned that she was going to Children's to see her coworker's baby, Simon. Michelle said, "wait! Simon with 2 mommies, Laura and Jaime"? She works at a church in Danville and evidently the sister of one of our friends (we haven't figured out who yet) called in to put us on the prayer list for this Sunday. Michelle took that call!

We really are connected to everyone through this little boy.

Okay, another really funny and not really funny story, depending on what end (no pun intended) you might be on. Just met a mommy in the waiting room who is here 48 hours after she gave birth because her child...wait for it...has no butthole. I'm not kidding. If she seemed upset I wouldn't even be telling this story but she didn't seem super concerned. Laura and I had a good chuckle and then felt a little guilty, but...come on. What an awesome story that will be for that kid when he gets older. It totally trumps a weak heart.

TGIF

I felt so defeated this afternoon. I felt overwhelmed by work, and trying to get out at 1 pm was nearly impossible. I made it out at 1:15 and left feeling like I couldn't imagine being able to balance this all and do any of it well. Laura had been at the hospital all night and I figured really needed a break and my summer interns were having their last day with us and we were doing a little celebration. I had a great cry in the car once I got into the garage. That alone time in the car driving from work to the hospital is good cry time. Then I'm done and can be here. I'm definitely an alone crier and the confined space of the car is good. I've even got my cry stoplight and cry song set. It's almost funny :-)

They've almost 100% ruled out metabolic stuff (had a few questions in the last couple of days, but they've mostly decided no). They may have to re-do his PICC line in the next day or so which sucks, but I knew they'd have to at some point. They've taken him down one more step on the Milrinone and are starting to wean him down from Heparin. So far so good.

One of our friends, Justyn, told us the sweetest story about her daughter Amira who is a little over a year. Amira loves to come over to our house and play with Roxie and likes to look at Simon. The last 2 weeks, evidently, she's been "talking" about us, even when they're not near our house, which she doesn't usually do. Mostly this involves saying "Woof woof" "ball" "wah" which means she wants to come to our house to play ball with Roxie and see Simon. Her parents haven't told her anything about what's going on with Simon...she's just been vibing him. It's pretty sweet and a little magic.

Simon is doing a little better each day, I think. He's certainly no worse which is really good. Less sweaty today, slept more, nurses are more hands off which feels better all around. Getting geared up for social time this weekend and some good break time with Laura, which we really need...

Day 2 of Back to Work

So day 2 of work was pretty good. It's going to be really hard not to feel like I'm responsible for a full day's work in 5 hours. However, I can only do what I can do and while my job is really important to me, my family is more important. I brought some work home with me and haven't gotten to it and I'm really okay with that. I want to be at work when I'm at work and fully present when I'm here at the hospital.

I was saying to Laura that the highs and lows of this are unlike anything I've experienced except maybe all the drama in coming out, etc in my first year of college. Late in the afternoon/early evening yesterday we were freaking out about Simon getting warm and his heart rate being so high and then after we moved to bed 22, we were delirious with joy last night when we were trying to go to sleep. It's really a trip. In some ways I feel more alive- I'm feeling more extreme feelings than I ever normally do. I'm usually very even keeled and this is hard but it's also sort of like living on the East coast versus California. I'm having some pretty extreme emotion weather and it makes you stop and pay attention. In some twisted way I appreciate it.

The support just continues. Friends brought our garbage cans up to the street for us last night and we came home to an overflowing gift basket from one of my troupe mates. Someone else brought down our garbage cans tonight. I can't believe it's been almost 2 weeks and the love just keeps coming. I feel like there needs to be some award for "best community network" or something. Seriously. Simon's first birthday is going to be one mother of a party for all y'all.

I'm home by myself tonight and off to bed soon after I call to check on my fam. It's settling into a sort of weird normalish routine now- it feels like we're just raising our son in another place and I almost can't see all the wires and tubes attached. I go off to work and drop Laura at her "job" at the hospital in the morning. We bounce him and swaddle him to get him to sleep, he goes to the breast when he's hungry...it's all just got an extra edge of anxiety because we're looking at a monitor for his vitals and we're doing it all in a 10 x 10 curtained off space with no control over noise or light (although it's much better in the Annex) and we have a nice lady who helps us here and there (our nurse).

I forget how adaptable I am until I'm doing insane things like this and they feel pretty normal after a really short period of time. Maybe it's just good coping skills but sometimes it feels like I should be more unsettled and fight somehow instead of just resigning myself to things being the way they are. I could probably be brainwashed really easily :-)

Okay, off to bed. Hugs and kisses all around.

Sticks, Stones and Breast milk

Today I felt like I had fire in my belly for the first time since all this mishegas started. All day yesterday Simon wasn't that interested in nursing. We learned that what they were fortifying his breast milk with (for extra calories) was in fact just formula powder. Well, we know that Simon does not take well to formula and after a wonderful conversation with Amrit, our midwife and lactation professional, we decided to try ask (or gently demand) that they stop adding bovine powder to his milk and that he'll no doubt be getting his extra calories from the extra nursing that they're saying that he can do (but won't do while he's having such wicked digestion issues with the fucking formula that they're adding to my breast milk...derrr). Who wants to eat when it feels like there's a rock in your stomach? (That's my stone reference)
There was some initial resistance to it and I got to practice my non-defensive communications skills with our fabulous but sometimes 'set in their ways' practitioners. Instead of needing to beat it into their heads (I was imagining holding a bat and swinging away- that's my stick reference) I waited calmly and talked with the resident, then with the Fellow, then the attending, and last but not least our primary cardiologist (both of them, Hunkypants & Newkhumet-the Cardiologist on call).
There was some concern about him not getting the calories that he needs but if he can nurse on demand AND he's not spitting up, which he was starting to do, then that's taken care of.
Huge thanks for Amrit, our midwife, lactation specialist, wise woman extraordinaire for not only giving me the info that I needed but also reminding me that I can partner with these amazing medical practitioners in getting what's best for Little Simon Lev. So we'll do this for a couple of days, make sure he's gaining weight and go from there. If my milk sits around for more than a few minutes outside of my body or Simon's it starts to separate and I can literally see the fatty goodness that he's getting with every feeding. Go Breast Milk!
And there you have it...Stones, Sticks, and Breast Milk.

I'll be staying the night in the ICU to be able to give the little man the boob on demand tonight and we'll see how it goes. A night with out Jaime- not so much fun. But, our days are going well and with my Dad and other folks showing up while Jaime's at work it's feels manageable.
I think we can hunker down now, make bed #22 home, and work some healing magic. The ICU was for saving his life and getting him stable. Now comes the work of getting better.
Love to all

Laura

Notes from Bed 22

(written mostly last night, posted this morning)

What a delightful end to a very rocky day. I’ll start with the good. We just got moved to the Annex which is a step down from the regular ICU. The scary part for me is that the nursing ratio is 3:1 versus 1:1. The fabulous part is that it’s quiet, we can control the lights so we can make it dark, we have a huge window with REAL LIGHT and about 1/3 more space than we had. We don’t have neighbors on either side so it feels like even more room. We keep saying we moved into the Ritz. It’s kind of sick how easily we adapted to life here and how incredible this curtained off 10 x 10 room feels like we could live here for a zillion years.

Today Simon was very extreme- very smiley and laughing for about 10 minutes at a time and then miserable for about 3 hours. Repeat. Our day nurse changed the dressing on his scalp IV and evidently it moved a tiny bit. His IV pumps kept alarming and they ended up having to x-ray him to see how much it moved. It was fine and they didn’t need to do anything else. I keep thinking about how he’s going to have 2 heads from all these x-rays. I think we’re up to 4 at this point. Thank god it’s not 1960 and they’ve figured out how to lower the dose…

He had an echo today and it showed no major change in the pumping function but other stuff looked a little better. They started weaning him down from Milrinone very slowly so he went from 1.0 to 0.9 units today. They want him to gain an ounce a day so they are feeding him more.

Dr. Hunkypants came by and it turns out he’s a chocoholic (he gave me a piece of chocolate!) so now I know how to keep him happy- Trader Joes chocolate aisle, here I come.

All day yesterday and today, his baseline heartrate and respirations have been at a much higher level than the last 8 days or so. All day his heartrate was in the 160s to 170s (it had been as low as 106 when he was sleeping before). This afternoon, he busted a major sweat and we were completely freaked out that he had a fever and an infection. However, five minutes after we moved to the annex, his rates have been dropping and right now he’s at 127. As Laura said, “Simon can heal here”. The other unit was so noisy and stressful with bright lights, loud alarms, suction, post op patients waking up, etc. This feels like heaven by comparison.

The extremes of him being the most smiley and laughing that he's been and then miserable and seeming like he's going to die from an infection/fast heartrate/etc are killing us. I keep telling him "No More Drama!"

My first day at work was actually managable. I ended up having to give a presentation to about 50 people that I thought I'd gotten out of, but it was really fine. It feels like 2 days in one, though, to do 1/3 of my day at work and 2/3 at the hospital. I can do this and we can do this.

Okay, off to start all over again.

p.s. If you come to visit, turn left instead of right, where the reception desk is, and go all the way to the window and we're on the right.

Another day...

Well, a bit more progress today. Simon is completely off oxygen and also now can breastfeed whenever he or Laura wants! He also is off one of the carriers for his IV so he only has one IV (the PICC line) with only 3 things going through it (Milrinone, Heparin and the carrier). He had much more alert time today and also squawkier time which is pretty normal.

Geraline, one of the nurses that hasn’t been his nurse but is often near us, had a dream about us all last night. In her dream, she was our personal nurse at home and she was going to have the great honor of giving Simon his first feeding. She got to go into a special room with a big throne like chair with lots of pillows and a very special bottle. She said it was SO vivid and we (including grandparents) were all in it. I told her she needs to start dreaming about a super strong heart, since today was the day he got to have unlimited feeding and she dreamed about his feeding last night. Pretty cool…

The doctors talked about weaning him down from IV Heparin (blood thinner) soon and maybe getting him on oral Cumidin soon. He’s off one of his diuretics and the other 2 are now oral since his new IV isn’t compatible with Heparin/Milrinone and the IV versions of the diuretics (kind of a blessing in some way, since it pushes him moving to more oral meds versus IV).

He’ll have another echo cardiogram on Thursday and then they'll decide whether or not to start weaning him from the Milrinone based on that. That process alone takes about 2 weeks.

Laura says: Today was the first day since Friday before last that the day felt somewhat familiar in terms of Shimmy and I having regular rhythms. He clearly wants to be at the boob for more than just nourishment and I am more than happy to have some soothing techniques back. Throughout though, Jaime has been the master rocker/napper and that’s been so great. I felt for the first time today that we’re back in some way to our regular times together. Simon spent several moments standing (with assistance) in my lap just looking out and enjoying the business of the ICU. He laughed, he smiled, we read a book. He got fussy when he was hungry. He fought going down for a nap…all familiar activities.
His heart rate and respirations have been a little elevated since he got off the oxygen but still within the normal range and when they shoot up because he’s upset, once he’s calm again they go back down. Not as much as we’d like but they do. Jaime and I can't help but feel worried about the #'s and hopefully tomorrow we'll hear that it's nothing to worry about or that it's something and here's what they're doing about it.
All the nurses and doctors keep telling us that it’s a good thing that he’s so vocal and fussy and letting us know he’s so over this. It’s the babies that just lie there and whimper that they really worry about. That is definitely NOT our little Shimmy. It’s sad to see all the leftover tape remnants but not as sad as when he had lines coming out of every limb and neck. Still fucking crazy that he has a line in his one of his scalp veins that threads down to his heart. Again…what?!!!
Slow and steady wins the race. Slow and steady. He’s more Yurtle the Turtle in his recovery now than the jackrabbit he seemed to be embodying during and just after his birth (First there was the five minute labor and delivery and then there were those feet of his).
Jaime heads back to work tomorrow and it feels a lot like when she went back after the first seven weeks with Simon. It was a hard adjustment for every one and we just have to be very care-full with how we handle this transition. Time together is so important. Any one wanting to visit the hospital between the hours of 8 and 2 is most welcome. Shimmy was awake and alert for most of the day so that Alli in the early afternoon and Anna in the early evening were both greeted with smiles. So dreamy.
Tomorrow is yet another day.
Amazing gratitude to all.

Small Victory

I forgot to mention that last night they took him completely off oxygen, so we have a small victory! One less thing attached to our little man.

I go back to work part time tomorrow. It feel so insane and like I've been gone for months. I'm planning to work from 8 am to 1 pm and then come to the hospital. It will be really hard to switch gears between three worlds- work, hospital and home with Laura at night. That said, I think it's for the best because I can't just sit in the hospital for 6 weeks even though I want to.

We just got the itemized cost of the ER visit just to John Muir (all covered by insurance). Just the visit there was $7000. I kind of can't wait to see the ICU itemized bill that our insurance better cover *100%* or I'll sic all our attorney friends on them. I'd sure hate to be the medical biller who has to go through Shimmy's chart aka the Tome.

Just going to shower and head back over there today for my last full weekday at the ICU. I'm totally going to miss it in a sick way. We have our chums that we greet every morning as we go to "work" and nice afternoon breaks in the cute neighborhood nearby. It's had brief moments of vacation like feeling when we have minutes lying in sun together or a nice snack outside a cute cafe. Now I'll be cramming everything into their little pockets instead of just rolling around in the misery of what's happening. Even my ICU time with my critically ill son will have to be scheduled and measured to some degree.

Not sure how this will all work in the long run, but we're every bit as scrappy as Shimmy so we'll make it happen- hopefully with grace and humor.

A Little Bumpy Today

Today was a bumpy day. Simon slept really well last night and then was a bit fussy this morning b/c we kept having to screw with him. He was scheduled to have his PICC line inserted and Laura was feeling a bit overwhelmed with assisting with that process so she went to the cafeteria to hang with her parents for a bit. I stayed with him while we waited for the nurse from the NICU to come by to assess him for the PICC insertion. He was not happy about having each arm, leg and head ultrasounded to look for veins. At one point they had to put a rubber band on his forehead to try to get the veins to pop up. I wanted to laugh and I wanted to cry. It was pretty absurd.

Of course it wasn’t easy and they ended up having to put the central line in through a vein in his SCALP. He got his first haircut here…they had to shave the area on the left side of his head and gave me the hair. We’ll put it in the scrapbook that may end up being bigger than his chart right now, which is in a full 2 inch 3 ring binder. Here is Simon's chart for 9 days:

While we were waiting for the PICC team to get ready, our nurse tried to draw blood from the IJ line and realized it was totally coming out. It took me and 3 nurses to deal with the situation which involved sterile gloves, trying to thread the line back in a bit, snipping the one suture left and a lot of wiggling. Simon eventually had the fantastic coping response to just go to sleep. I praised him mightily for that. I do it when there’s turbulence on an airplane and it works like a charm. Sometimes you just have to check out.

They eventually got the line in and I’m just praying that his sweaty little warthog head will hold the tape, etc that’s keeping it in place. That said, my mission for the day was accomplished- one less thing or one thing better than what he has. The damn IJ is gone and now he has a PICC. Hopefully they won’t have to re-do it anytime soon or if they do it will be even better than the one they have (ie, maybe in a limb next time instead of his head). This kid is going to have some ridiculous war stories.

Talked to Dr. Rosenfeld aka Dr. Hunkypants again today. He said we may start to try to wean him off the IV Milrinone next week. This is the biggest test so far because if he can’t be weaned from the IV Milrinone, he can’t go home and eventually we may have to decide if we want to do a heart transplant. When we asked for timeframes for when we’d need to start thinking about whether or not to make that decision, he said if he’s on Milrinone for 2 months or so and can’t be weaned off, we would need to think about transferring him to Stanford and putting him on the transplant list. That said, there is a perfectly healthy 6 year old patient he has who was here for months on Milrinone and recovered completely. This is all just about waiting and seeing. This is my ultimate challenge in just letting go and not being able to control anything.

Our goals right now are to avoid any complications like an infected line and to get him ready to get off Milrinone and onto oral Digoxin and Nalopril (?). Think good strong thoughts for his heart and immune system. We passed the extubation challenge with flying colors and this is a huge next step. The overarching idea is that at about 6 months we’ll have a pretty good idea of what we’re working with and what 30% Shimmy will fall into (a) complete recovery, b) partial recovery with some residual damage and c) no recovery- awful decisions to make). We’re still shooting for a) and would settle for b).

Did a tally last night of his visitors. Mr. Shimmy Lavage has now had 50, that’s right, *50* visitors in a little over a week. And that doesn’t count the folks that have showed up more than once or the folks that have been to our house as garden/ yard angels. Today friends who are moving to Canada stopped by with their packed truck before they drove out of town.

Chatted with a very sweet woman in the stairwell who asked about Simon (never seen/met her before- she’s seen our signs in the shared waiting room offering food). She has a 3 week old in the NICU with sleep apnea and they’re going home tomorrow (yea for them!!!). She has 5 kids and lives on a farm in some far away town. He husband is having to take off work to do the morning and evening feeds on their farm and her 2 older kids are staying with her mom. I know what we are going through is horrible, but mostly I think about how totally blessed we are.

Here’s a little tally of some of our many blessings:
Our house is literally 5 minutes from the hospital
We have a HUGE network of support
We have health insurance
We both know how to navigate the healthcare system
We can schmooze with our doctors about travel and private schools and religion
We speak English
We have 2 cars
99% of what the medical teams are telling us we understand and if we don’t, we know what to ask to clarify or where to get more information.
We have friends who are medical social workers who can help us deal with insurance/disability questions.
Our midwife came to see us to help us with lactation.
Our parents can take off work to come be with us
Our friend Reid moved 5 houses away a few weeks ago and can take care of Roxie
My work is flexible and letting me go back to work part time until we know more about what’s happening
Laura wasn’t scheduled to go back to work till November anyway
The director of Oncology/Hematology is a friend from the Dog Park AND the Executive Assistant to the CEO of the hospital is a friend.
GOD FORBID we have to think about transplantation and decide to do it, the hospital will be in the home town where I grew up and we can stay with my parents

For these and so many other things, I am thankful…

Simon Laughs!!

Simon had a pretty ok night last night. He had some trouble sleeping but was calm for most of the night. We think he’s really coming down off his drugs from the intubation and given the fact that they didn’t really wean him, it really was cold turkey for him. Friday was really rough, yesterday better and for most of today he was either sleeping or chillin’ in somebody’s arms. We’re really getting the transfer down so that moving from one person to another is not so traumatic. This means that he can spend most of the day being held. He’s getting better with his “recreational” time at the boob and I feel so great that he’s getting that time with me, plus some extra booby juice. I’m getting some skin to skin with him plus the prolactyn for keeping up my milk supply. Pumping sucks. Breastfeeding is wonderful. Pumping sucks.

Jaime has been getting some amazing smiles and this evening after Simon got dinner and transferred to Jaime’s lap we got a full on chuckle! Simon is loving his Mama right now.

We’re just trying to settle into some kind of long term rhythm as we come to the beginning of week 2. Certainly the first week was high energy and moving at an incredible pace with the onset of things, intubation, extubation and these last couple of days with detox and the getting rid of some lines (his arterial line came out today and they’ve said that most they can replace his jugular line with a PICC line (most likely to his inside elbow) tomorrow. Dr Saaba (the cardiologist on this weekend) said that after a patient gets to Simon's place of being somewhat stable but not nearly well enough to leave the hospital, that's when it can be most difficult for the family. I get it. It felt a lot like a sprint for the last week. Now we're in for the marathon and pacing is the key.
It's so funny to have the olympics on as all of this is going on. Sometimes with Simon sleeping in one of our laps we'll turn them on with the sound off and just watch some amazing (and bizarre) competitions. I've never really gotten into them before but watching the swimming has been a treat while the air pistol competition just confused me.

I think Jaime and I are doing really well in terms of taking care of each other, trying to get some sleep (even though it's so hard to go home at night it makes us that much stronger during the day), remembering to reach out and touch each other, get a little kiss in here and there, go for a walk, hold hands, and be our full sad, silly, irreverent, communicative selves.
Having our people "show up" in such consistent ways has truly helped. Thank you all so much for the visits, the messages, the food, the emails, txt messages, comments left here, yard work, doggie care, and all the other ways that we feel the love. We've known that we have great community but holy crap!! This is abundance. It's sometimes hard to accept all of it. Hard but impossible not to in this crazy crazy time.

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

Shimmy Makes Some Friends

Here's Mr. Simon snuggling with his sister, Roxie

We just had our 2nd reunion from our childbirth class today. The boys are so darn cute. Here is Simon with his buddy Theo.

Here is a video of 4 of the 6 boys getting up close and personal

Laura Speaks

So Simon is sleeping now and I thought I'd get some more photos of him up here. We're all doing well over at 702 1/2 Rand. Simon and I get out at least twice a day to walk the Roxie dog and then at least once more on some bigger outing (Yoga on Mondays, Swimming on Fridays, a hike here and there and some good friend times with folks.) We've ridden the BART and bus together, we've been shopping at Trader Joe's and the Berkeley Bowl, we've done some itsy bitsy baby yoga, and been to a lactation support group even though everything is going super swell. Simon weighed 10 lbs 12 ounces two weeks ago so we're thinking that at our next weigh in we're hoping to surpass 11lbs. He's had a few immunization shots and has weathered them without any major side effects or even minor ones for that matter and we love our pediatrician Dr Maria.
As for me I'm figuring things out minute by minute and even when those minutes are hard or frustrating I'm still in awe at this new life (mine and his). Lots of trial and error moments, lots of sweet- my heart might explode- moments, it's all there. Simon is a little being with so much going on and amazingly enough I am his guide/protector/entertainer/food source for the moment. What?!?!?!
My heart is full.
Oh yeah, I have to give a ginormous shout out to our wonderful community. The showing up has been so incredible. Thank you Thank you Thank you. I can't say it enough.


And now some more thoughts and photos from Shimmy La (via Laura's mind)



I know that Jaime and Laura are all hip to this gender spectrum thing but I don't even know my own name yet let alone what my gender expression is gonna be.

Besides, this thing does not go with a number of my outfits. And...I gotta say it's a little tight

It's ok though cuz almost all the rest of the time I am SO on the ball



What choo talkin' 'bout diaper change?!

This is a good time! We should do this every day, all day!

Turning Out to Be Quite The Looker

What's new with him these days...sleeping longer stretches during his afternoon nap, laughing a little, he's about 11 pounds and loves to look around at his surroundings and is VERY into eye contact, which apparently is rare for boys.

He is driving people wild on the streets with his killer blue eyes and his "I'm very serious" face.

(Getting ready for his first pride, with his very "Prideful" legwarmers!)

He does smile, though as you can see!