Update for ShimmyLa

So we're 24 hours into not feeding Simon and he's not eaten anything by mouth. I can't say that I'm not surprised although I can say that I'm terribly disappointed. I didn't even know how much I was holding on to the idea of him getting hungry like he did with his last bacterial infection and drinking like a rock star. He is for sure still my little rock star and I am also clearly not nearly as close to being Buddha as I thought. I so wanted Simon to clear this last hurdle of looking and acting completely healthy.

I can handle that his Echo still shows him to be a very sick boy. I get that. I'm not forgetting it. I just love getting to live in the present with him when it's so lovely moment to moment. He is hysterical with his tongue, affectionate with his hugs and the laying down of the head on my chest, his new sounds crack me up, and his wiggly body is just yum yum yummy. That is where I live.

So this was the last hurdle in getting to live in the moment with him and it probably made it worse that I now have lots of images of friends babies (a month younger or older than Simon) taking to solids and sippy cups so beautifully)

Breathing in, breathing out. Breathing in, breathing out.

Yeah, doesn't help. I just wanted him to eat by mouth, continue to gain weight, cancel the G-Tube surgery, and have his sweet face back. Yesterday.

I'm ok. It's not happening today. It's probably not happening tomorrow and most likely we are moving forward with surgery scheduled for January 23rd.

In fact we are moving forward with a more conservative surgery approach than previously expected but one that I think is in Shimmy's best interests.

So HunkyPants called me this morning and let me know that he had conferred with Dr Rosenthal down at Stanford as well as Dr Su who would be performing the surgery and they think this is the best plan:

Have Simon be admitted on the Wednesday before his surgery, stop taking his Cumiden (blood thinner) and Carvedilol (heart med) and start him on Milrinone and Heparin again. Have the Surgery on Friday and then wean off those two drugs again for two days and be out by Monday. So....6 days back in the ICU. No deep line just a simple IV and all the nurses (and Dr Patel who apparently asks Rosenfeld about Simon a fair amount) can get their fix.

I can't deny that I'm having some reaction to going back in for that long but exactly what it is, is not simple. Terrified that we will once again be around very sick germs that love to make my son bacterimic, frustrated that I don't get to control his basic environment again, happy to get to see all of our lovely folk and have them see Simon, and just freaked out that we're going back to the Hospital.

AND how the fuck is it all going to work?! We have a routine at home now. We have wiggle room- literally.

Should be interesting. So...that's the plan right now.

Simon had a great day though. He was happy and active. There was some fussiness in there but he never really got to the "I'm frikkin' hungry mom and I don't know what to do about it" state. We even pushed his bedtime a little with an exceptional dinner at A Cote to celebrate Jaime's birthday, my mom's birthday, and Ed's birthday. Also yum yum yummy (special shout out to Lainie the manager there who baked us a special dessert for celebrating). Holy Chocolate Cake. We took most of it home so come on over if you want a chocolate experience like no other.

What should we order Mama?

Sweet right?

As for me, Gallbladder infection under control. Still not feeling 100% but 75% is better than last week. We're putting off surgery until the infection is long gone, at least a month, and then bye bye Gallbladder. I asked my surgeon if I could at least keep the stone to make a rattle for Simon. Negative. Pooper.

I think that's all for now. I'm a little hopped up on Chocolate and need to watch Top Chef to come down. Simon was so tired that we just put him to sleep in his dinner outfit- apologies to Jaime in regards to the late night diaper change.

Love to all

Laura

Uncommon Baby

Sorry to leave everyone hanging- we have Laura's family in town and it was my birthday yesterday (it was great!) and we just didn't get a chance to blog.

Laura has a consult tomorrow with the surgeon re: removing her gall bladder. Her infection seems to be getting better because she's less uncomfortable so we probably have some time until she needs to get it out.

Simon had a cardiology appointment today and Laura managed to get a consult with the surgeon who would do his G-tube. The surgeon had a little come to Jesus with Laura about the seriousness of the surgery. Here's Laura:

Hi all

Sorry to be lax on the blogging as of late but it's not my fault. Talk to my Gallbladder.

Shimmy and I arrived at CHO at 9:50 ready for our appointment. While waiting for our first activity (the Echo) Simon was pretty happy and excited with his tongue sticking out in all kinds of directions. He also got to watch a full 10 minutes of animated dinosaurs on the fancy plasma TV in the waiting room and was loving it. He was amazingly relaxed through is echo and Sarah the tech let me know that really there was no obvious difference. (However, Dr Casey, who popped his head in to say Hi said "looks like there might be more of a wiggle there eh?")

We then headed back to cardiology and were almost immediately put in a room to wait for Howie (Aka HunkyPants/ Rosenfeld). We had to wait almost 20 minutes (what? Like he has other patients??) and Simon got weighed (18 pounds 3.5 ounces my friends!!) and then proceeded to go crazy with excitement at getting to play with those eye and ear checker thinger magigggers. He was cackling up a storm, rolling his tushy off, smacking his lips with a kissy sound, and generally having more fun than any cardiac patient ever should at an appointment. Luckily Howie got to witness the last little bit of it (he found it terribly endearing that Simon was blowing him kisses and I didn't have the heart to tell him that it wasn't really a kiss specific to him) before we went for the 'Oww' part of our visit.

But before I get to that, let me tell you the most exciting part of our time with HunkyPants. He said that Simon was looking so good and that his weight was firmly in line with his height so.....we could start playing with his feeds and see if we could get the little man hungry!!! Yay!!

So tonight we are just giving him pedialyte and seeing if he'll wake up hungry enough to suck down some formula, nibble some avocado, or slurp some cereal. I'm a little nervous about it. Isn't that crazy?! I give my son several different medications that could potentially harm him if not given correctly and I'm worried about trying to give him food. Well, it has been months (except those weird days after his last bacterial infection) since he's taken anything by mouth AND it feels like the last frontier in terms of getting Simon deeper into "normal baby" life. I get why I'm feeling like it's so charged and it seems weird to me.

On to Lab draws. They suck and I hate holding him while the very skilled nurses try and try to get blood from my small veined son. This time only took two tries and the most amazing happened during the actual blood draw.

Shimmy was screaming his head off, tears falling down his sweet little face landing on my hand that is holding his small body still, while Trudy filled the numerous vials for his numerous tests. At one point, with the needle still in, Simon's attention was caught by the movement of the 2nd nurse changing the blood filled vials for empty ones. For a solid 4-5 seconds Simon stopped crying and simply watched her move the deep wine colored vials around. It was incredible.

I told him "yeah, it's ok to be distracted and really once the needle is in, it doesn't really hurt, it's the going in that hurts." At that point Trudy had to move the rubber band around his arm and the wailing and tears started up again, with good reason I think. But, it was an incredible moment of Simon being aware of what he was actually feeling and not just riding the wave of what had transpired. Very cool in my mind. Again, his bounceback was almost immediate once we were done and he almost smiled at the nurses as we waved goodbye and thanked them for the most unpleasant job that they do really well.

We then headed across the street to outpatient services to meet with Dr Su who will most likely perform Shimmy's G-tube placement surgery. While we were waiting to meet with her (it was an impromptu consult that she agreed to over the phone- she was on call and not in her office) Simon fell asleep and I covered him up in the stroller with a blanket. She came in and we started starting quietly as to keep the little man asleep. It was already 1pm and he was completely off his rocker with exhaustion.

Dr Su started in right away with some very clear concerns. She said that she'd talked to Dr Gleghorn and Dr Rosenfeld and while she heard from them that they thought Simon was a fine candidate for such a surgery she "really didn't want to do it."

She went on saying that she'd seen his Echo and remembered him from the ICU (she was the surgeon to take out his Broviac line when it was infected) and was very worried about how sick his heart was. She went on to say that any surgery right now given that was a serious risk and that the worst case scenario was that being put under anesthesia could kill him.

Words like that make my heart freeze and feel leaden in my chest. It wasn't anything that I didn't know or that Jaime and I have talked about but she was no joke and shooting straight from the hip. She went on to say "Dr Gleghorn and Rosenfeld told me that they don't think it such a big risk and that really I needed to see him and meet with you but I have to tell you what I think." On she went, "They both told me that I shouldn't put so much on the Echo since nobody thought Simon would be around this long especially after you both opted to not go the transplant route but here he his and not only here he is but he's doing so well...."

(This came up more than once in our conversation- I don't know if I hate hearing that or love it).

At this point Simon started to wake up and start fussing. I removed the blanket covering him and picked him up from the stroller into my arms. "Oh my, he looks good!" were the first things out of her mouth when she actually saw him. "He's gotten so much bigger and his cheeks are so big and full of color." She went on and on cooing in his general direction (you gotta remember the last time she saw him he was bacterimic and almost buying that farm that he's been toying with purchasing for over 5 months). She said that given how he looks and acts, we could move forward with meeting with a cardiac anesthesiologist and scheduling the surgery but with a couple of weeks of seeing if we could get Shimmy eating by mouth that hopefully we might not even need to put in a G-tube.

The little man works his magic again!!

Later in the evening Dr Gleghorn called to check in on the progress of scheduling the surgery and when I mentioned the whole 'maybe not needing it if we can get him eating' thing she said, "that would be uncommon for a patient to be able to get back to eating." I said, "well, he is an uncommon baby" to which she replied, "well, yes, given his history, he certainly is".

Like I said before, it's both wonderful and hard to hear that. Especially coming from medical folks that really know what they're talking about. Simon is so alive right now, in his body, in his energy output, in his wiggly tongue AND he is not that far from being just the opposite. His heart, held so carefully in his beautiful strong little body is still very, very sick. It's hard to reconcile his amazingly strong legs and arms, head and neck, great grasping hands and curling toes with the idea of a stretched, weak, inconsistent but so very essential heart muscle.

He is an amazing being that keeps everybody around him so viscerally holding the notion of balance. In every moment there is light and dark, sweet and sour, joyful and sorrowful. I love him so fiercely for that and so many other things.

Today's highlight was the teething biscuit. Check it out:

Love to all

laura

Photos from the last few days

Lovin' the family visits

Yes, I'm doing yet another dental exam on PopPop

Ooops, sorry mom. I didn't mean to throw up on your chin. But hey, that's better than in your mouth right? Count your blessings woman!

I love me some cousins

Oh for cryin' out loud, are we back to this hair style?!

Dim Sum is Grrrreat!

Oooooh Scallion Pancake

Hey this chopstick isn't bad either


I'm french and I stick out my tongue at you


Hey is our table ready yet?

Simon seems to be thriving. Cardiologist appointment on Tuesday. We'll update you of course.

Love to all

Laura sure has a lot of gall...

in her gall bladder that's infected and hanging with a gall stone. Seriously. Today Laura was diagnosed with an infected gallbladder and gallstone and has a surgery consult on Monday. Uh huh. That's right. Laura probably needs surgery. Next week.

For cryin' out loud.

I started laughing hysterically tonight when the doctor called back after getting the ultrasound results. Here's what Laura's end of the conversation sounded like:

"You want me to go to the ER tonight and be ADMITTED?"

*Pause*

"Uh huh"

*Pause*

"You're worried about it rupturing?"

*Pause*

"Okay but I'd really rather not"

A long pause while she listened

"Okay, then I'll do the surgery consult Monday and if I'm in severe pain, we'll go right to the ER".

We then filled her prescription for 2 antibiotics and pain meds. The vicodin she had taken a few days ago didn't touch it so they gave her something stronger.

Laura is not writing because we don't want to offend your delicate eyes with the expletives that might come out.

Simon, by the way, is awesome and is now over 18 pounds and can barely see his feet over his huge gut.

After his G-tube surgery, he and Laura can have matching scars on their bellies.

How sweet.

Good 1st Day of 2009

I got to be the parent I planned to be today. It was awesome. Laura went to go visit her sister who is visiting and Simon and I were on our own. He woke up and I make the snap decision to walk about a mile to our friend's house to go to their brunch. I grabbed him, the stroller, the pump and food and we were off. It was brilliant. We're settling into a new normal, in a lot of ways.

On another front, Laura has been having really intense stomach cramping, only at night, that sometimes lasts ALL NIGHT, meaning she gets no sleep. This is a problem. She's going to the doctor on Friday to rule out something physiological and then we're going to figure out how to tackle the stress that is most likely causing it.

Tonight I was saying that I wonder if now that things have settled down and we're not in constant crisis mode if her body is trying to re-create the cortisol/adrenaline experience. That's often what happens to me- I'm awesome in the middle of whatever hell is breaking loose but when it's over, I'm a mess. Seems like so far I'm doing okay, but I also bear so much less of the brunt of all this. It's been very sweet to have lots of time with Simon while Laura is out of commission, but it is definitely a lot of work. I can only imagine how much more so if he's symptomatic and/or there are places to go and things to do.

Simon is so much fun right now. He really hardly ever cries- when waking up and sometimes if something is uncomfortable and other than that, hardly ever. What a change from the inconsolable 4 month old who went into the hospital. He's got personality but we don't have to chase him or worry about baby proofing yet. Soon. That's coming soon. He's starting to look like he's going to crawl and he's getting really wiggly and wants to stand a lot. I think he's going to be a mover.

This is so much harder and so much more fun than I thought it would be. Ultimate parenting cliche, right? It's true though. I just keep saying to Laura, "I really LIKE Simon." He's a very cool little guy with a ton of personality...

Laura is trying to sleep through some stomach cramps and I'm back to obessively trolling Facebook for people I know. I've created a monster by getting on Facebook. Seriously.

Life on the Coast

We are having such a sweet time in Gualala. Simon is loving it up here and our easy schedule of beach walks, food, movies and lots of laying around. And it's really scary to be far from the hospital. Simon has been a little more symptomatic the past couple of days and I'm terrified and furious. He's been panting a little and today started to break a little sweat. I paged Cardiology and the doc on call basically said it's normal for him to pant while he's active because his body is trying to compensate for his dimished cardiac output. If he's panting all the time, then that's a different story i.e. not so good. For right now it seems to be just with activity. We're planning to stay until Monday but I'm really steeling myself to pack up in a hurry and get the hell out of Dodge.


We've DVR'd all the Harry Potter movies and have been watching them lately, in chunks. I had a funny thought this morning that Simon is like Harry Potter. He survived an attempt on his life in early August and now the evil spirits keep trying to get him but he keeps battling them off. It feels like Dementors are always swirling around like the the Turkey Vultures we see up here on the coast, though. I hate it. I hate the spector of death always at his neck.


One of my mom's friends, a Yoruba Priestess, essentially said the information she's getting about him is that he's going to make it for now but that every 7 years he's going to have to decide whether or not to stay here. I so wish I could just wholeheartedly believe her and chill for 7 years. I could put up with so much hell cheerfully if I knew he wasn't going to die from his symptoms for at least 7 years. I could battle for his life again if I knew to steel myself but what feels like the daily assault is sometimes so exhausting.


(3 days later)

It looks like Simon is having a little growth spurt! He's been very active, very cute, liking tummy time and in fact fell asleep on his belly the other day. Laura heard a "gallop" in his heartbeat a few days ago and we both freaked out a little. She called Cardiology and they said that actually it might be a sign that his heart muscle is thickening, which we want, and not to be worried to much and just keep a close eye on him. We would really, really love that...

Shimmy in his fancy Xmas outfit

Look what we got for Xmas!

Sweet shot of the kids

Shimmy's first Christmas tree

Holiday...celebrate

Simon seems to be enjoying the holidays so far. He has now had his first Solstice, his first First Night of Hanukkah (he LOVED it) and his first early Xmas with my Dad and Stepmom. On Saturday, my Dad and Nola came over for a pre-Christmas/Hanukkah get together. We had lunch and opened presents and Simon was so happy and content and playing for the 2 or so hours. He got some very cute things :-)

Sunday we went to a Latke Party with about 20 people. He was a little fussy and seemed a little overwhelmed but when it was time to light the menorah and sing, Simon stood stock still in my lap, eyes wide as saucers and watched everyone. Then the men started doing the hora right in front of us and he watched with big eyes as I bounced him in my lap to the music. As soon as the festivities were over and things returned to regular party hubbub, he was done.

We stopped by the hospital today to drop off cookies for the staff there and had a really nice reunion. The annex was closed due to low admissions, so we got to visit bed 22. I didn't feel even the slightest twinge of icky feelings there. As Laura said, "that's where he started to heal". Bed 4 in the regular ICU is a whole other story. Ugh.

We had another sweet evening tonight with some family as you can see:

Here's my latest dream life that Laura cooked up for me...I work 4 days a week at my awesome new day job, bake up a storm on Fridays and sell my goodies at the Farmer's Market around the street on Saturdays. I've been baking lately and I forgot how much I missed it. Someday I'll find a way to do more of it...in the meantime I'll enjoy the holidays as an excuse to fatten everyone up :-)

We're off to Gualala tomorrow (up the Mendocino coast) to hang with my Mom and Stepdad in their cabin. We're looking forward to 4-5 days of eating, watching movies, hot tubbing, beach and general chillness. Ahhhhh.....

Medical Update and more

Got a call from HunkyPants this morning. All of Simon's tests came back normal with his BNP going lower.

Yay!!

We went from 1457 from two weeks ago down to 1149 this past week. I'm loving it. Shimmy's BNP can go as slowly as it wants so long as it keeps going down. Very very very pleased about that. We are also moving forward with a Gtube placement sometime early in the new year. I need to double check but I'm pretty sure that it's an in-patient procedure and means at least an overnight in the hospital, most likely the ICU annex- won't they all be thrilled.

I won't pretend that I'm not having a reaction about that, going back there. At least it's for something that we are choosing and will ultimately and hopefully be a step forward in healing. It's still a surgery though and those always come with risks. The cardiologist and the GI specialist have both said that he's in good condition for the procedure AND that doesn't mean that there aren't any risks. He's going to be "under" for almost an hour and that's hard on his little body and systems.

The other bit of good news is that it also looks like we could do it in one surgery instead of two short ones spread out over 3 months and go right to the button. The first picture is the button itself (the little balloon at the bottom is what lies underneath the skin and keeps it in place). The second picture is what it looks like once it's placed. Not too bad right? Supposedly after it's had some time to heal and settle it shouldn't preclude Shimmy from doing anything including bath and tummy time. Sweet.

I am still a little freaked out about him 'going under'.

In other news...

We are figuring this home thing out slowly. I'm getting some good cries in. Shimmy is getting some social time in. We are getting out. We are staying warm. It's all coming together.

And it's frikkin' hard. I am Simon's ICU, his monitor, his nurse. It feels like a lot when I think about it all, or sometimes just around 4pm when I can look back at most of the day and see everything that I've done to keep him alive, gaining weight, comfortable, not to mention learning and growing like a regular baby should be. But the moment to moment isn't really hard at all (tiring, frustrating maybe, but I wouldn't say hard). So I clean up vomit a bit more than most moms, big deal. Watching Simon learn how to self soothe himself to sleep and really respond to a regular schedule is a delightful thing. And, I cannot wait to get his sweet face sans noodle back.

...

Just got off the phone with Children's Hospital and the initial word is that there is no surgical opening until Feb 2nd. I'm hoping that's not really the case but simply what the receptionist was saying given that she hadn't even gotten the referral yet. 6 more frikkin' weeks?!! Blech.

We had a lovely date with Baby Julian and his Big Daddy Tanner. And last night Shimmy got more facial hair time with two other big Daddies, Robert and Reid. That boy does love him some facial hair.

Here are Julian and Simon playing at holding handsNear.......FarHere is Simon realizing that Julian is still fresh faced where as Poppa Tanner has a Goatee

And then there's Robert's full on Beard

Which is even longer than Reid's. Simon, "Gee you remind me a little of my PopPop Bernie." Jaime's home now so it's family time. It's family time for 2.5 weeks!! Yeehaw.

Happy Happy to everyone.

Laura

Some photos from the last week

It's been a little hectic. I'm sorry we haven't done an update since the 11th. I was waiting for Shimmy's BNP from the last visit but it's still pending. Everything else looks good though.

We've had some sweet visits with other babies and while it's a harsh reminder that Simon has some serious catching up to do (why? well cuz he has a heart condition and spent 4 months in the icu) it's also been really great to have some baby social time. That's what Simon is, a baby, not just a cardiac patient with lots of meds and Dr visits and limitations. He's a delicious baby who can learn and play and grow along side his fellow babies. Next time we'll get some photos of him with his baby friends.

Here are some photos of the last couple of days to tide you over.

Love to all

Laura

Snuggle time with Auntie Manders

This Hat is so cool, look what happens when I turn it!

Ah, yes the festival of lights is approachingLook Mom, I can pull your glasses off

Tickle Me Simon

Settling in

Laura Here

Home for a while now and finally things are starting to feel more real than life in the hospital. We've had a bevy of visitors showing up with incredible gifts and of course I don't just mean of the material nature. We've got a new street stroller (versus the off-roading one from G'Pa Bruce and Grandma Nola) that we've already been cruising the neighborhood in. Some great new bath toys (See photos- how many boys that age can say they've bathed with so many beauties that aren't their mothers?!). A well stocked fridge with delicious easy food for us to make. And wonderful people galore stopping by to keep me company during the day.

That's Auntie Dre in the bath with Shimmy

That would be Carol

And this would be Auntie Abby out for a hike with the Shimster (after her bath with him)

Shimmy and Jaime are in the bath right now (the boy does love his baths) and I'm taking a moment to add my two cents to the blog. I wish I would write more but it seems like the times where Simon and I are home together and there's a bit of down time for me are more about laundry, dishes, maybe a nap, or simply catching up on emails.

Things have been working themselves out in terms of a rhythm to our days Monday through Friday and Jaime and I are working on the weekends where there's not too much disruption but certainly a shift for Shimmy so that Jaime gets as much face time as possible.

Simon seems in good spirits and mostly stable health. We're still working on figuring out how to keep as much formula in him as possible for weight gain. The pukes are still a-plenty and this coming Tuesday we have a cardiology appointment where we'll have another conversation with HunkyPants about switching over from the NG tube to a more permanent G-tube for Simon. A G-tube is surgically placed and essentially is a direct line through the abdomen to the stomach for enteral feedings. A small plastic plug lies on top of the skin with a port in it to attach the line from the pump.

This would mean that Shimmy would no longer be a noodle nose boy (Hello Supermodel) but more importantly he wouldn't have a tube going up his nose and down his throat. Some parents on our support list serve said that just for fun (hah) they tried to put an NG tube in themselves to see how it felt and they understood immediately why kids with NG tubes are even less likely to want to take anything by mouth. Derr.

The only downside is that it is a surgical procedure and Simon would be completely sedated and there are always risks with that. Once the Gtube is in though the risk of infection is minimal and he can do just about anything he would otherwise (baths, tummytime, etc).

Jaime and I have been doing our homework about it in the last couple of weeks and I think we're feeling fairly pro G-tube at this point. Quality of life. As for Simon, he's growing, making new sounds, practicing his razzberry, and working the "ole Blue Eyes" magic every where he possibly can. He's becoming a fabulous napper and get-himself-to-sleeper. A delicious snuggler. And an all around magical boy who delights and amazes most folk that come in contact with him.

As for me. Jaime's posts speak for me as well. This is fucking hard. I'm still uncovering what it means to be home with Simon, to be his primary caretaker, to struggle with the bandwidth involved in doing all of this, how to share it, how to care for myself, be in relationship to Jaime, co-parent with Jaime (and those are different), enjoy each moment, find time to eat, grieve the loss of my job, stay in contact with friends, get enough sleep, let people help, ask people not to visit sometimes, manage bills, apply for disability insurance, work a homophobic/heterosexist system that chooses when it will and won't recognize us as a family, miss going to the movies, eating out, and other things that I'm not even aware of missing but will more than likely come up sometime soon.

It's such a mixed bag. Simon and this whole experience, have, of course reaffirmed that deep learning about celebrating each moment including the unbearably hard ones (what, because I didn't quite get it before with the motorcycle and horse accident?), embrace the people that love you and let them embrace you, and just slow down and feel the blessings. Oh yeah, and the blah blah blah lesson of sometimes just being in the shit and not letting anybody talk you out of it until you're ready.
Yesterday a sweet friend from long ago visited and got to meet the Shimster and hang out some while he napped. She was catching me up on her life (mine's on the Internet) and I was loving hearing how she's moved full time into the life of a farmer. Forgive the pun but it sounded like a wonderful and organic experience. She spends most of her time figuring out how to nurture and harvest, doing the former so she can have the latter be as great as possible.

I feel like I am doing that with Simon too. Spending this time nurturing my little seedling during this very fragile time in his growth, hopefully to have a strong and bountiful future. His roots are not yet sunk that deep and any big change in his environment could be too much.

I just want him to grow strong, like any farmer wants their planted seeds. Simon is just requiring a lot more attention and diligence during this early growth period.
Maybe he'll be like the cantaloupe that we never thought would grow in our backyard beds but was discovered one day not only to have spread across the lawn but fruited several delish large cantaloupes (as evidenced by the Roxie photo).
Ok enough. I'm off to eat donuts and watch Angelina Jolie kick butt with my wife on the couch whilst the little man slumbers.


Love to all and thanks for keeping up.


Laura

Feeling Blue

Jaime here:
Sad tonight...both of us. I'm really feeling a new phase of acceptance/grief/loss in this whole thing. I'm meeting new people that don't know I have a baby. They haven't been with me through this journey and I have to integrate this new identity into my first meetings.

I feel like I can't just say, "oh, yeah, I have an 8 month old" and leave it at that. What that implies is so far from our reality that I would feel like an imposter. The reality that we have a pretty severely disabled kid and it feels so overwhelming sometimes. It's like there's some really long, exhausting road ahead of us and it feels sort of bleak and oppressive.

The other hard part for me is the uncertainty of it all. This could be what our lives look like forever. Or, in 2 years Simon could be totally recovered. Or, in 2 years Simon may not still be with us. I have no idea what is coming and it's different than if he had, say, Down's Syndrome and I had some semblance of what things might be like in 2 years. We could adjust, accept, find community with others who are struggling with the same thing. This illness is really isolating in a lot of ways- we can't go out, hardly anyone else has this problem and once he gets his NG tube out it won't be obvious that there is anything wrong so we will just pass for a normal family which I think actually will feel lonlier.

We've become a sort of "high maintainance" family. We have all these restrictions now- people have to come to us, we can't go to certain types of events, everyone has to be super anal about washing their hands, etc, etc. It's so not what I envisioned. I thought I'd be the kind of parent who walked out the door with my kid in a sling, a diaper in my pocket and a few dollars, not a backpack with a pump, a towel to catch puke and a sign that warns people away from touching him.

Adjusting to a new environment and a new "normal" at work is so great and hard because it means I am integrating Simon being sick long term into this new identity. It's really, really sad and people have been awesome. But even that is hard- a coworker used to work for CSS- California Support Services, and was talking about how Simon is so disabled that we probably qualify for all sorts of stuff and that because he's obviously at risk for Developmental Disabilities (not necessarily cognitive, just delays in other areas) that we might qualify for other programs. Whether or not we really do qualify for the programs, it's really intense to hear people who have knowledge about disabilities immediately identify and categorize him as so vulnerable. Ugh.

Hopefully a lighter post next time, but we are where we are. It's been a hard couple of days of reality check.

Coming Home

Jaime here...

I just had an incredible week at my new job. I had a few epiphanies this morning about the last few years. My last job was great in a lot of respects, and my former coworkers are very dear to me and I'm still in touch. However, for the last 2 years it's felt a bit like I've been a visitor from another planet in a lot of ways culturally. I realized how much so after the conference this weekend.



I was at "Smokefree California" which was a conference for all the people in the state involved in Tobacco Control. These are all public health/social justice oriented people. I sat in the room the first day and almost teared up looking around- there were people of color everywhere I looked and identifiably queer folks. At one point on the last day, a not so great speaker from a Landlord group tried to draw a parallel about tenants and smoking with illegal immigration. She kept using the term "illegal immigrants" and there was a buzz in the room. Afterwards, someone at my table was talking about it and saying how upset she was that the woman even used the example and that she wished the woman hadn't said "illegal immigrant" but rather "undocumented person". Again, I almost cried. To a lot of people, it just seems like semantics, but to me and a lot of others, the difference in those words speaks volumes. I haven't heard that term "undocumented person" in a workplace setting since graduate school and it was MUSIC to my ears.



At this conference, there were at least 10 identifiably queer people out of a few hundred. I just left an agency that had thousands of employees and in 2 years, never met anyone who was "out" until I came out to them. I had conversations with a few who talked about needing to stay in the closet because it wasn't culturally acceptable there. Everyone was cool with me and always really supportive of Laura and Simon and I, but it's really different to work with people who are "of" your people rather than "support" your people. I love allies- I totally appreciate all the love and support I got and validation of my relationship with Laura AND there's nothing like being around people who you know "get" you and your family in the way someone who is living it does.



Today I realized I've felt like I've been living in a foreign country. I spoke the language and could really function and be an active pariticpant. But this last week has felt like I was finally around English speakers. I experienced this when I lived in Paraguay for a summer- I didn't realize how much extra energy it took to be "other" in a foreign culture until I was with other Americans or English speakers. Then I felt an incredible sense of relief and sort of dropping away of a cloak. I felt like that this week.



I learned about 6 months worth of information in 3 days but I didn't feel overwhelmed at any point because everyone was speaking the same language I know (public health/social justice). I was just learning new strategies, not a new culture. I hadn't realized how much I was trying to learn a completely new culture the past 2 years- really business and sales, which I actually wasn't much interested in. It was exhausting and hard to be/feel successful. This was such a good move.

Also, Simon had his first poop in the bathtub and his first poop in the potty. I knew this day was coming. I mostly just laughed at the beginning and held him over the toilet for the rest of it. Such a big boy :-)

Flyin' Solo (Not really)

It's been a whirlwind of a couple of days with Jaime off on a work conference (starting Tuesday morning before we even woke up), a cardiologist appointment (BNP results in a moment), a blood draw, an Echo cardiogram (nothing worse or different really), a fabulous Mamaw sleep over, a increase in formula volume for the little man overall, visits here and there, a long dog walk, some short dog walks, lots and lots of snuggles, lots and lots of medications given and pukeage cleaned up, some good nights sleep for Shimmy, a little less good for Mommy, an occupational therapy appointment, a home nursing visit (shimmy's put on 1/2 pound in just under 2 weeks- not bad, not great but not bad), and finally a lovely car ride with coos and fwapps of his hanging toys to go and pick up Mama from the airport.

All in all an utterly exhausting three days that we not only survived but I think managed pretty well. A huge shout out to all the single parents out there. That was just three days for me with lots and lots of help. I cannot imagine doing it solo. Just can't.

Jaime is home now and I am overjoyed to have my partner in all this back. She's my partner in so many other things but we are joined with Simon in a way that feels exceptional to all the other ways. This is true since he arrived for sure but even more so since August 1st. Hard to believe but it's true. Love me some Jaime Jenett.

So here's the update on Simon. His BNP was down (from 1690 to 1457) and his weight is up (16.5 pounds). His labs came back just fine (HunkyPants even called to say that they were almost "too normal") but that we should just be careful about his output so we upped his Lasix just a little so that he'd be peeing more. Given that he peed on me twice today ("you're taking off my diaper mom? Sweet. Here's a little treat for you!") it's hard to imagine that he needs to pee more but that's a micro assessment versus the bigger picture that says that too much fluid is hard on the heart.

Also I wanted to take minute to write about the "how are you?" or "how's Simon?" phenomena. Those are two common questions to ask and I know that they are rooted in care and love. They are however very hard to answer. It's almost like the way I am sometimes asked "how're you doing?" when really the person is just using that in the place of a "hello" and doesn't really want or wait for an answer. I hope that sounds familiar and makes sense.

It's hard on me and I know that it's meant to be just the opposite. But it taps a well of feeling and sometimes I don't want that well tapped. Sometimes I just want to shoot the shit before talking about my son in heart failure and if I'm asked how I'm doing or how Simon is doing it means that I have to go right there. I'm not sure what a good response is since "fine" doesn't really cut it anymore (although a wise woman I know says that can also be an acronym for Fucked Interior, Normal Exterior- love that). Not sure what to do about that.

Other than that we are all settling into a regular rhythm, as regular as can be with Dr's visits, nurses coming over, meds, pumps, and blah blah blah.

Really, that's all I wanted to say this whole time. Blah Blah Blah.

Love all out there.

Laura

Here are some photos from the last few days.

Simon loves him some buzz cut

Homecoming