Kol Nidre (Rebbe Shimmy getting ready for Yom Kippur- The Holy of Holies)

Shimmy puts on his first yarmulka

Checking out his mommies Talis

What a Mensch

Ready for Services

Yeshiva boy (complete with the lopsided Kipa)

Photo Opps

Shimmy and Dr Saaba With Casey...talking about when they can go get a Guiness togetherToo cool Simon Lev getting ready for Yom Kippur Eve

Simon learning about what a Talit is

All Night Long

So we called early this morning to check on Mr Shimmy before heading over to the hospital and talked to his night shift nurse. Seems like Simon had a night with no emesis at all. Not a spit up, not a puke, no ralphing, not a barf, no blowing chunks, nothing!!! He slept the whole night through from 7:30 pm until about 5:30am. That's my little man!!
By the time we got in he had thrown up a little bit but I ain't bovered.
He's been happy and active this morning with the most gentle "going down" for his first nap I've ever seen.
He's upstairs right now with his Mamaw most likely asleep again for nap A Deux. Can I say once again how amazing it is to have the support of Mamaw D. She comes to the hospital Monday Wednesday and Friday and is just an incredible constant for both Simon and me.
We haven't gotten the official report yet but word on the street is that Simon's Echo Cardiogram yesterday looked "a little better."
We still haven't learned exactly what that means yet but I'll take it. We're going up on the Coreg tonight and not really changing anything else at this point. I suspect that we won't start any kind of Milrinone wean for a few more days but again...I'm ok with taking it as slowly as we need to.
I will say that in the last two days, more than one doctor has mentioned wanting to get us home before Flu season really hits. I suspect that if all goes well with the upping the coreg and the milrinone wean, Shimmy may be home for Thanksgiving and maybe even my November 6th Anniversary.
If not we're already imagining the Thanksgiving in the cafeteria with a mile long table and a potluck to end all potlucks :-)
I know it's far away but it feels amazing to be having far away thoughts versus the three week ago thought processes.
We'll have been here 10 weeks on Friday. We're hitting another kind of stride and I'm feeling both exhausted and rested. It's weird. I'm getting out more for hikes with Roxie, my back is feeling better, Shimmy is feeling better AND it's been 10 weeks of 15 (or more) hour days in the ICU with out a day off.
One day, one moment, nap to nap.
Love to all.

More photos coming soon. Sorry I've been slacking.

Monday Monday

Another beginning to another week. So far so good. Simon's sleeping right now and as I look up at the monitor, his heart rate is 98. I'm thinking about how in a few years I will be helping him understand double versus single digit numbers as we're getting into basic math at school. I also think about how just a few minutes ago I drew up 5 different medications that I subsequently inserted into his feeding tube.
It still blows my mind that this is my experience with motherhood. Quite different from what I imagined and I wasn't even spending a lot of time imagining anything because I knew that there's nothing like it.
My sister once said that having Maya was like having your heart walk around outside of your body. Yeah, I feel like that a lot. I love this little person so much I don't quite understand it.
This morning there was a little bump/dip on the roller coaster ride with Simon not having his regular two naps and having a much harder time going to sleep when he was obviously tired. It was hard to suss out whether or not he was just going through a growth spurt moment of fussiness (and maybe not even needing three naps a day anymore) or was there something heart related going on. Not clear just yet, but he's wearing a heart monitor halter for 24 hours so we can monitor that and I'm not worrying too much since he had a great 2+ hour nap this afternoon and as noted before his heart rate is right where it needs to be right now.
It wasn't an easy morning but both Simon and I seem to be recovering quicker from the bumps and dips.
We had a lovely walk with Auntie Dre this evening and even got to wear the same outfit all day for lack of major spit-ups. Nice.
I still don't know what to wear to our Hospital Wedding. I might try on my tux to see if these child bearing hips will fit it but otherwise will need something to at least try and match Jaime in all her splendor.
Simon's tux onesie is too cute. We'll post photos for sure.
Security said that it wouldn't be a problem to have some folks come in as long as we were staying on the 2nd floor so we just need to run it by the Social Worker to get it ok'd. If we were to open it up we need folks to know that
A) We would need to be clear that it's just for the wedding and Shimmy couldn't hang out for very long after the ceremony
and
B) We would need to ask that if folks did come by that they not touch Simon (as frikkin' adorable as he might be) so as not to overload the little man with germs and/or stimulation.
We would start right at 4pm on Sunday the 19th. How many people would be interested in coming? Email me directly at lafitch@gmail.com so we know how many cookies to have on hand.
Crazy.
Love to all
LF

Chill Sunday

Today was a pretty mellow day. Laura slept in and I came to the hospital at 7:30 and had a really nice morning with Mr. Shimmy. He was very chipper and then had a great nap. Laura came in at about 9:30 am and then our friends Anne and Eric came by to sit with Simon while we had a reconvening of our Clearness Committee at our house that afternoon. Clearness Committees are a Quaker tradition where for a year before getting married, a couple meets with a group of people from their congregation to help the couple gain clarity about what they are committing to. Laura spent every summer from age 9 until 31 at a Quaker summer camp and maintains some of those traditions. Ours consisted a group of 4 close friends who met with us monthly for the year before our wedding to help us get clarity about the basics before we married. It was very helpful and one member decided that now would be a good time to reconvene and do a check in. It was great- nothing earthshattering came out but it was a good opportunity to get some support and get some perspective on where we've come from and how we're doing. I'd say we're doing pretty darn good, despite all this really hard stuff. I think they'd agree :-)

Simon puked a little today but not terribly although the nurses reported that he threw up a lot last night. We're taking him down from 27 calories with the addition of the MCT oil to 26 to see if that helps. His stats were good all day but tonight his heart rate looks just a smidge higher (high 120s and 130s while awake) and I'm trying not to be worried. We've also been trying to accurately track his weight but it's been hard b/c he's such a wiggler.

Laura and I have decided to get legally married before the November ballot initiative and will be doing a tiny little quick ceremony at the hospital on October 19th. We thought about having all sorts of folks come and realized it would be a security nightmare for the hospital so it will just be immediate family. My grandfather and his new sweetie, and Laura's dad will be in town that weekend and our new hospital friends won't be working that day, so we picked the 19th. We also figured we had the best big fabulous wedding we could imagine almost 3 years ago, so we'll just do it really simple this time. I'm guessing 10 minutes, tops :-) I am, of course, going to wear my dress again, because...I can. Carol, Simon's PM nurse bought him an ADORABLE tuxedo onesie for him to wear. Laura is not sure what she'll wear but I keep telling her to go for a tuxedo t-shirt.

I'm really tired this weekend. I've been giving all out in all realms and I feel it. This really is a marathon...

Love the Weekends

Jaime and Simon are snoozing on the chaise lounge right now and I happened to glance up at the monitor where Simon's heart rate has hit an all time low of 91. Yeah, 91. That's so much closer to a normal deep sleeping heart rate than we've ever seen. Something is working right now and the little man is getting the rest that he needs for his heart to have the chance to heal and grow strong. What's just as amazing is that these days when he's awake his heart rate is in the 120's and 130's as well. Unless of course we're changing his NG tube or giving him a shot (we're needing to start his 6 month vaccinations and make sure that he's got a flu shot for the upcoming season). But even then he's recovering quicker.
I believe that we are on the right road.
Shimmy and I spent a good amount of time on our walks these days talking about the Jewish High Holy Days and what a wonderful opportunity this time is for deep healing, fresh starts, and taking in the sacred as it's thick in the air right now. I've been singing to him songs in hebrew and talking about all the wonderful food that comes at the end of Yom Kippur during Liz's traditional Break Fast gathering. He's not so sure about creamed herring but I've told him that we rarely see it anymore since we've stopped going to the Raliegh Hotel where PopPop used to sing for the High Holidays.
We also talk about how even though we're not moving far geographically speaking from Bed #22 at Children's Hospital that there is so much to look and wonder at. From the cars and people that go by the window, to the new scrubs that different nurses have on, to the changing leaves and flowers that we can notice on our daily but same route walk everyday.
More than anything though I have to say that these weekend days are sweet with the three of us spending such wonderful time together. Even though we are not out and about, we are together and it feels just delightful.
So...Nu? We are raising a beautiful baby boy. We are raising him in the ICU yes...But we are raising him with love and support and spirit and joy and books and baths and exciting new outfits to fit his growing body, and so many opportunities for positive connections with his world and the amazing people in it.
I feel joyous today.
Riding the wave for as long as I can.
Laura

Sweeeet!

Today was filled with sweetness.

1. Simon had a great night last night sleeping most of the night AND gaining weight.
2. His BNP came back 1500 points lower!! I know it's not about the number itself but a trend but that's still makes me want to fly to the moon and back.
3. Jaime and I got the most amazing email from the general manager at A Cote
   Dear Laura and Jaime -
   I truly hope you will forgive the intrusion. It's not everyday that we get a comment card with such a sweet and handsome picture attached to it.
   It was with great interest that I read the comment card and with even greater interest that I went to the blog represented on the button.
   Through lots of tears I read about your sweet son, Simon, and his valiant struggle with cardiomyopathy. I am so happy to see that he is doing well and hope he continues to improve by leaps and bounds.
   I have placed the button on the bulletin board by my desk and will be checking in on the blog to see his steady progress. I will be keeping him (and you) in my thoughts and prayers. . .I can't wait for the day that all three of you can return for a visit. . .please let us know so I can make something special for the occasion. . .I so look forward to it.
   Sincerely,
   
   Lainie
   Elaine Osuna
   Business Manager/Pastry Chef
   A Cote Restaurant
4. Simon and I took two great walks during the day.
5. Sonya brought Roxie to the Hospital (not upstairs) and stayed with Simon while the Pup and I got to the beach for a walk with our friends Wowlven and her daughter Elka Rose.
6. Jaime got to come back to the hospital for a couple of hours during the day instead of working 12 hours straight.
7. Shimmy started on his higher calorie formula (that's hopefully going to be easier on his stomach)
8. We got a delicious homemade dinner (and lunch tomorrow) delivered to the hospital.
9. Our most amazing Osteopathic Dr (Patricia Rochette) did a house/hospital call and worked on Simon right at his bedside. {This was so amazing to watch as Simon fell into deep relaxation sleep minutes after she started working on him and was the most relaxed I have ever seen him both with his body (allowing it to be gently manipulated) as well as in his heart rate and breathing- Rock On Osteopathy}
10. Rambod, our new Fellow, couldn't help himself and at the end of rounds said "I love you" to Simon in parting. I think he was a little embarrassed about it but it just showed once again what a love generator the little man is. You can't help yourself.

A giant hug from Shimmy (and me) to you all.

Laura

Keep on keepin' on

Another day here in the Annex and Shimmy's doing everything he needs to do. He's napping like a champ. Not hurling as much. Keeping his heart rate nice and low and having quick recovery after we do something that pisses him off (like changing his NG tube after it got nice and clogged today). So no big changes.

We're getting ready to go up on our calories again tomorrow morning and hoping to do it nice and slow over a couple of days so he'll have a chance to acclimate to the richer formula. He needs more calories but while he hasn't been gaining as much weight as we'd like, he's not losing any and that means that we can be gentle with the approach even as we're going to be aggressive with the plan. We'll hear about his BNP tomorrow and we've skipped an Echo so far this week.

Really, we're in for the long haul now and what Dr Patel said today rings very true. We're not looking at any big changes in his plan at this point so it's the little changes that are important now. Things like making sure he's getting enough calories, watching to see how he'll handle his first cold (which I think he is coming down with as I type), things like that.

We met a wonderful circle of women today in the waiting room. I was out eating a little lunch before taking Simon for a walk with Dianne. There were several women visiting a new patient and his Mom and we got to talking (one of them thought I looked familiar from around Oakland). We immediately had a great rapore and I said that I would bring Simon through on our way to the courtyard. 10 minutes later Shimmy was making eyes at all of them and they were blessing him and making sure that I knew that he was "going to be all right, that boy is gonna be just fine."

I think so too. Almost completely. Almost. We have a long road ahead of us but I think we are at least on it. There may be some detours. Rough spots. Pot holes. Construction ahead. Other byway metaphors...bring 'em.

It's been three, count 'em, three days in a row that I have gotten out for a good break in the afternoon thanks to the "get Laura out" team. Roxie and I even went to the beach yesterday and we were both overjoyed about it. My back is too.

The sad news is that I officially resigned from my job at Creative Arts Charter School and while I can't imagine going back to work even part time after Shimmy is out of the hospital (for at least a year) I do love working there and miss those folks and students something fierce.

We are privileged in that I can get on Jaime's health benefits and so don't have the added cost of Cobra right now. So far so good.

Thank you all again for taking the trip with our family through these peaks and valleys. It's been just amazing to have folks from near and far, recent and distant past, let us know that you're thinking of us.

-Laura

Baby Sitting in the ICU

So Auntie Dre and Auntie Joan told Jaime and I that they would babysit for Simon and that we should go out for dinner. Two things happened.


ONE: Jaime and I decided to go out to A Cote in Oakland. It's one of our favorite restaurants and we've gone there for many a celebration. It's also the last place that we went out to with Shimmy. We took G'Pa Bruce there for his birthday in the early part of the summer and Simon had a blast! He was the belle of the ball, making googly eyes with our servers, the hostess, and every table within 6 ft of ours. We chose A Cote tonight because it held such sweet memories for us. While we were there I asked for a comment card and decided to to relay the above story and essentially thank them for the wonderful service, the wonderful food, and holding such a wonderful memory for us during this difficult time. Our server Lydia (who I also think was a manager) was fabulous but a little busy and at the end of the meal we were feeling a little rushed to get back to the hospital before baby-sitting/visiting hours were over. Jaime walked up to Lydia with our credit card explaining that we needed to get back to the hospital. Lydia said that she understood but didn't need the credit card. Yeah, she comped us the entire meal.



I couldn't quite tell what was happening only that Jaime was hugging our server and coming back to the table crying. After hearing that. I too had a good cry and unfortunately for A Cote, we both walked out of the restaurant bawling our eyes out.



If you live in the Bay Area, please patronize this most amazing establishment. Culinarily speaking you will not be sorry.



I won't write about how I had a completely irrational response to this most amazing gift as we were crying at our table. I was looking an amazing gift horse in the mouth thinking "I don't want any more gifts!! I would give all this incredible generosity, all the food deliveries, all the dog walks, all of it back just to have Shimmy at home and healthy." It lasted just a powerful second and then I was back in the moment of feeling grateful but it was there. I had it.



I still love Lydia and A Cote.



AND TWO: Jaime and I returned to Bed #22 to find Simon sleeping peacefully in Auntie Dre's arms. But there was this...captured on film.

Yes, that's lipstick Dre is putting on Simon...

Wow...blackmail material. Lipstick from Auntie Dre and a little treat from Folsom Street fair from Nurse Jordan.

All tuckered out

Nuff said.



Other than that it's been another simple and stable day at CHO. After more puking yesterday and early this morning we reduced Simon's formula from 27Kcal formula back down to 24. I think the 27 was just too rich for him and already he's mellowed some with the gagging and puking. Mamaw D was here for almost the entire day and I got to go home and walk Roxie in the late afternoon. Shimmy's heart rate is beautifully low when he's sleeping and well within normal ranges when he's awake. Granted he's on some powerful heart medications but still...he's at least getting the chance to grow in to it and not have it be stressed or dilated even more.





On a last note, it's the Jewish New Year and aside from it being a wonderful time to think about fresh starts, it's also a time to eat Challah and Auntie Joan made the most delicious one I think I've ever tasted.


Sweetness to everyone.

Peekaboo!

Sunday nights are really hard sometimes. I've felt pretty wiped out this weekend- a lot of big stuff coming up for me right now in various realms and the intensity of the Simon experience has really tapped my buffer. Sundays are hard b/c going from 2 solid days of really getting to see how Simon is and being with Laura to working my butt off at work and being 100% present while I'm there is hard, but I just keep doing the best I can.

Cody, Simon's bard, came by tonight and played us an instrumental section of his song that he recorded, on his phone (!). Turns out he's in a band and has a bunch of recording equipment at home and also records at a professional studio. Hearing the instrumental sounding so professional was sort of mindblowing. I can't wait to hear the whole thing together.

Simon looked like a total badass today in his "bones" leg warmers although he just horked and puked and retched all day which wasn't so badass unless you pretended like he was a mini rockstar who had partied too hard.

Simon and I postbath, making googly eyes

I also discovered the power of "Peekaboo". This is stupid cute:

http://www.youtube.com/v/UU-ElZo5_1Y

p.s. I'm posting this at 5:50 am on Monday b/c the hospital just called us to say Simon has been awake and puking and crying for at least an hour, so Laura just left to go be there. Waking up to a call from the hospital is so not fun. I'm not a coffee drinker so adrenaline at 5:30 am is not my idea of a good time. I'm sure he's fine and just has an upset tummy b/c of the high calorie formula but it's still scary to wake up to a phone call.

Heart Party

Today we went to a party. Childrens Hospital Oakland had a cardiac reunion party for kids that have had a cardiac related stay here. It was incredible. There were over a hundred families of all ages enjoying a bbq, clowns, live music, and bouncehouse just out in the courtyard where Shimmy and I normally take our walk. We were invited to come down and check it out a couple of days ago and Simon woke up from his second nap just in time for the festivities. It was incredible to see all these kid running around and know that each one of them went through either heart surgery, or aggressive medication treatments like Shimmy. We met families that spent 2 weeks in the PICU and families that spent 6 months here. It was amazing. I don't even think I can say more about it other than I feel even less alone and even more hopeful. The light shining from all those kids was just brilliant. It was even more exciting to think about coming to next year's reunion only we'll come from home instead of "upstairs". Yeah.

When we got back upstairs it was nap time again from all the excitement (and more puking). When we awoke it was photo shoot time with Simon's personal bard, Cody. Simon is clearly smitten.

Tomorrow is another day and we're upping the Little Man's calories once again. I'm hoping that he'll tolerate it and settle some with the up-chucks. Two of the recognized side effects from his new drug Coreg are nausea and lethargy. Lethargy would actually be a good thing for him right now. Nausea not so much. Everything else is relatively stable. The little man is off to Nod Land right now and Jaime and I are heading home. We're hoping for good night sleeps all around.

Here's a pic from Simon and Jaime's early morning nap. Too Cute.

Ashford and Simpson

Solid as a Rock....
Shimmy's been having some solid days here in the Annex and while there's been a little more spitting up today (just a smidge more noticeable) he's in great spirits, standing like tree, playing with his toes and napping regularly. We're really getting the hang of this schedule and while I still have one toe in the pool of uncertainty and fear, I'm mostly swimming in the lake of 'loving my days' with the little man.
We continue to make friends around the hospital on our daily strolls with Osiel in the cafeteria now giving Shimmy a daily wave from behind the fryalator, Tony and Nick at the Ambassadors desk and of course Esther from Security. It's nice to have a regular route. Today several nurses were in the cafeteria after a training and when we were doing our lap Simon just kept getting stopped for smiles and cooes. He really is a love magnet. Here he is working his charm on some of the nurses.
I'm still working through some of the loss around breastfeeding and lactation but our days are filled with arms reaching out for each other, neck nuzzles, and delicious smiles when waking from naps. It's also amazing to see him respond so distinctly to Jaime when she gets here from work. We are a family. Our baby boy lives at the hospital right now but that doesn't make us any less of a family. In fact I think somehow we're all feeling the bond stronger and more distinctly now because of it or in spite of it, or something...silver lining, lemonade out of lemons, blah blah blah. Here's Simon waking up from a nap. We didn't get a BNP number this week and I'm almost glad for that. It's just a number. I would like to know if we're on an upward or downward trend but I can wait another week. I'm trying to believe the doctors when they say it's really more about his symptoms than any test results. His symptoms are almost non-existent. He'll be breathing harder after some exertion (like trying to roll over and getting frustrated) and sometimes just breathing a little harder when he's excited. Also, he'll sometimes heave a little when there's too much stimulation or when he first sees me in the morning (I'm not taking it personally). The sweating has decreased quite a bit. It's all still a bit tenuous though. I'm just working on breathing.

Napping with Simon in my arms is such a delightful thing. I imagine that my heart spends sometime talking to his heart about staying calm and beating steady and slow. I imagine my breath calling to his. Reminding his lungs to go deep but remain relaxed. I love feeling and smelling the air that goes in and out of his nose, so close to my cheek. And, I love that one hand that reaches out for my forearm or the top of my shirt to touch skin while he's just going down or having a restless moment in light sleep.
Just dreamy.
Yay for Fridays and two whole days with Jaime here.
More images from the last few days.

Simon enjoying a bath for the first time.

Shimmy making use of the flat screen TV (it's not on- He likes to look at the Good Lookin' baby in the reflection)Getting ready to head out for a meet & greet (un-official title= Mayor of the PICU)

Love and thanks to you all.

Laura

Stable like a table

Shimmy's having a lovely day. He's played, he read new books, went out for a nice walk in the sunshine, is currently taking a nice 1.5 hour long nap, and had 2, yes 2 of the stinkiest poops I have ever smelled. There are many reasons to love breastmilk but one of them for sure is for the poop. Simon's poops always smelled kinda sweet or really like nothing at all. These formula poops are wicked. The weight gain is great though. Shimmy's averaging about 40 grams a day which is 1.33 ounces. Yay!!! I appreciate all the support around the ending of my milk and each day means that Simon and I find new ways of bonding. Still feeling sad that it's something I don't ever get to have back and that the reasoning for the end is not any kind of natural occurrence but it feels fine and important to just be with the sadness and at the same time enjoy our new activities together. Simon's just inches away from rolling over and in the last day has found his feet. A new love affair has begun. One foot is usually even more exciting than the other because of the red pulse-ox light. Who knew that finding one's own feet could be so fun.
We're also allowed two walks a day now and have figured out how to manage Simon in the sling even with all his wires and lines. He's loving getting out more and has taken to watching the cars go by through the small clearing of trees at the end of the parking lot that we walk around. It's fun to watch his head snap back and forth (gently) as one car passes and then another comes. Think- watching a tennis match.
Jaime's working late tonight so it's just me and Mamaw D. I miss Jaime but I am so grateful. Not just for her but for all of you riding this ride with our family. It's incredible not to feel alone. Simon feels it. He really does. You all are such an integral part of him having these great days. Thank you.
It's later in the evening now and I would have to say that Shimmy pretty much had a perfect day. Great long nap in the afternoon, very little spitting up, another sweet walk in the early evening, and a gentle journey to sleepland right around 7:30pm.
Aside from the elbow to the head that he got from his Mommy while working on rolling over today (he actually did it with just a little anchoring help from Mamaw D!!!), today was a perfect day. Sweetness, pure and simple.

Song for Simon

(Written last night at about 8 pm)
Okay, so Laura, my mom and I just bawled our eyes out, in a really good way. Carol started her shift by telling Laura that Cody, the Critical Care Support Technician who works evening shifts, had a gift for Simon. Cody came by after I got here to see what time we were going home tonight because he wanted to come by to give us his present. I couldn't wait and kept pestering him to tell us what it was.

He told us that last night he was having trouble sleeping and was thinking about us and was messing around on his guitar and a song just came to him. He then proceeded to play us this most beautiful song on his guitar (that he brought to work just so he could play it for us). He said he's going to record it in a studio (evidently he's a songwriter/performer!).

It was about the happiness in Simon's eyes and how he's not alone and that we're all holding hands and doing this together. There's even a line in there about his Mom and Mom. He's going to type up the words for us and we'll post them as soon as we have them. In the meantime, here's the video we caught of him performing. It's dark and hard to hear, but you can definitely feel the sweetness.
http://www.youtube.com/v/O6KAJQl-c0o
I was just saying to my Mom tonight that Simon manifests so much goodness in the world. It's incredible what keeps pouring out.

Looking preppy with his Auntie Sonya

Zuzu and Simon say 'Haayyyyy"

Shimmy rocking out with his Auntie Dre

Devilish boy (click to see larger photo for full effect)

Yet another good day

Jaime: Another good day today. I'm trying not to feel like other shoe is going to drop. I've learned to not get too attached to the good days meaning anything long term. I'll enjoy them while they're here. I did freak out a little when he started breathing hard for a little bit tonight. I had a good cry- the lip out, huffing, pouty, sad kind of cry, not a big sobbing wailing one. I feel sad tonight. I really, really want Simon to get better. I really, really want Simon not to die. No one knows how this will go and it's really, really hard.



We had a meeting with our team today that was really good. Basically just a check in with our Cardiologist, the Clinical Nurse Specialist and the Social Worker. We aren't going to change anything major- down a smidge on Milrinone, up a smidge on Enalopril, stay the same with Coreg for a week or so and then eventually work towards a Milrinone wean with a goal of maybe starting that in 2 weeks or so. We talked a bit about worst case scenarios and clarified the parameters we set up (no extraordinary measures if he goes into sudden cardiac arrest, probably no intubation but depends on the cause of the respiratory distress) and then Laura asked Dr. Hunkypants what the best case scenario is for us at this point. She asked, "Is total recovery within the realm of possibilities?" He said, "yes". We were both a little shocked, I think. It's still within the realm of possibilities. Not as likely as it was 6-7 weeks ago, but still possible.



I just don't know how to sit with all the uncertainty sometimes. I want to enjoy the good days and not be so terrified of the hard days. It's just awful when the hard days have the same symptoms that he had when he was sick enough intubated.

Laura: It's funny but I'm taking the other tac and am feeling really hopeful about Simon having a full recovery. We'll know better in two weeks about whether or not we can start the Milrinone wean and then if that's sucessful heading home. On lots of meds but heading home. I just loved hearing that at one end of the spectrum is a full recovery. I know what's at the other end and it's real and it's there but just knowing that it's still a full spectrum is comforting. Yeah he was breathing hard tonight but he also went to sleep and got his heart rate down the 113. Thasss right. 113. Gotta love it.
Tomorrow is another day. We'll see what it brings. Shimmy and I did get a two walk a day pass. We went out for just one today but it was like old times with Shimmy in the sling, checking out people and trees. Granted I was pushing an IV pole, still it felt great to be walking around like that again.

Grieving...for the boob

My milk is just about done. It's been a rough day feeling such excitement that Shimmy has been tolerating the higher calorie formula (we're now at 50/50 with breast milk ) and so getting the nutrition that he desperately needs to grow and heal and also realizing that my milk is quickly drying up. It feels like this devastating loss to me that I know I can get over but it also just brings it way home that I have a Son who is so sick he can't nurse and it's been going on long enough that my milk is drying up even with the pumping, drinking (water) and supplementation that I've been doing/taking for the last 7 weeks. And straight breastmilk is not enough for him as he needs so much more to heal his very sick heart.
I can't help but remember that these days, as normal as they've begun to feel, are not anywhere near normal. As much as Simon seemed so normal and healthy and loving life today, he is battling for it with every heart beat. The end of my body making milk for my son feels huge. I know there are so many other things I can do for him but this was one of the first and kept us connected as he went from being in my body to getting his sustenance directly from my body. Even for the last few weeks as his nursing stopped I was still feeling that connection as he at least got my milk through his NG tube. I cannot stop the tears each time I think of this loss. It's nothing compared to how much I would rather have his heart heal and his beautiful growing body get the energy it needs. And, it still feels like a huge loss.
And, Simon had a great day today.

Another good day

Good day for us, hard day for a few of our new friends here. I just ran into the Mom (Coco) with the baby with no butthole. I saw her crossing the street outside our window, with her baby in a sling a few days ago and thought, "Oh, how great that they're out of the hospital and back for a check up". Turns out that she had been coming from the Family House across the street to the ER because her son had stopped breathing. He also may need a heart transplant due to a huge hole and maybe kidneys. Oy. She was in great spirits though, and very sweet- she introduced me to her new friend there and talked about Laura and I putting food out for everyone in the lounge.

Another new friend whom we met last week had some drama. Last week we were in the cafeteria in the evening and sitting next to a couple that was obviously Muslim and their toddler. We started flirting with their little boy, playing games with a Coke can, etc. Then we began a fascinating conversation with his parents. We talked about Simon and they said their 5 month old son was here due to trouble with his esophagus and possibly a few other minor seeming issues. We then started talking and I started to get a bit nervous. We were obviously a queer couple and they were obviously very observant Muslims (the wife didn't speak any English) and I was afraid that the husband would start to condem us, etc. Instead we had a most amazing conversation, talking about philosophy and religion, and the beauty of the universe/God. We've seen them a few more times and I gave Dad some food one night.

Last night a Code Blue (cardiac arrest) was paged for the 4th floor and I overheard the nurses talking later about how it was a 5 month old. We both were a bit nervous that we'd know who it was but couldn't remember any other 5 month olds that had been in the ICU. Unfortunately, this morning when I came in early, I saw Dad at the front desk on the phone and immediately knew it was his baby.

It makes me want to not talk to anyone here sometimes. I've said to Laura a few times, "it could be worse for us. Okay, not worse, but different worse". I tell you those stories only so you can send them prayers and good thoughts too when you're thinking of us. Coco's new friend has been here for at least 7 weeks with her son and when I mentioned that we were on visitor 103, she said, "wow, we just live in Santa Rosa (an hour away) and we haven't had a single visitor". I didn't even know what to say...we have such incredible bounty and I am so grateful. I'm trying to share the love.

We're going to start Coreg tonight! Very excited and a little nervous.

Another Good Day For Shimmy

Shimmy had another good night last night and a good day today. He was super alert and chipper and hardly slept, but seemed in good spirits so we aren't too worried. He slept like a log yesterday, so maybe he's just balancing things out.

He's starting on some formula mixed with breastmilk tonight. We have our fingers crossed that it doesn't make him puke because he hardly threw up today. He may start on his new drug, Coreg, tomorrow. They're playing around with levels on some of his other meds (Milrinone and Enalopril) so we'll see how this all goes and if it will really happen tomorrow.

Today was a good day for Shimmy but I feel wiped out and crabby, probably because he didn't sleep so we didn't really get any down time. I had a good week at work last week but I'm definitely tired. It's been nice, honestly, to have time in the real world to balance the craziness. I think shifting gears is hard sometimes, but I'm glad to be working. I think it's harder for Laura sometimes because she doesn't have any enforced breaks from the hospital. I know it's hard for me to get out, even just on the weekend. We've been talking about how to make it easier for her to get out and feel good about it...
Laura's college friends Maia and Hannah came by today which was sweet. That would be #102 & 103. Amazing.

Simon with Mommy's Hallelujah tattoo

Loving his Auntie Joan, Auntie Dre, but more so Auntie Joan's Hat.

Rockin' it

Shimmy with Dre giving a shout out to all his 'peeps'

Simon caught on camera with his newest lady-love Auntie Maia from Boston.

FYI 1) With Cold & Flu season coming please think about your exposure as well as whether or not you have symptoms. Both are just as important. I.E. if you have contact with lots of folks (many kids, large groups of people, etc) you may not have symptoms but may in fact be transmitting.

2) For those of you that have brought us food in your own personal containers/dishes, they are in a box outside of our door at 702 and 1/2 Rand. Let us know if you're coming by the hospital and want us to bring them in that day. Oh yeah, THANK YOU. Full bellies, full hearts.

Delicious Sweetness Over the Last Day

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

The sweetness..let's see...

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

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

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

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

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

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

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

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

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

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

Great night, Great day

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