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

Transformation

Laura here.
I learned a while ago that transformation is not simply the act of changing one's mind or learning something new. It's the process of understanding your world, yourself, as something completely different. I am going through transformation right now. It hurts, I'm scared, it's not chosen, it just is.

And, at the center of the powerful but slow moving storm is this amazing blue eyed being that I grew and housed in my body. My love for him is so tidal. At one moment it feels like slow moving chocolate. So thick and sweet. And then in a moment it changes to feeling like a line of gasoline lit on fire, moving me to quickly find that next move that will stop the pain, discomfort, stop Simon from dying.

And it feels like it's just me now. There are no monitors, no nurses, no team of cardiologists coming around two or three times a day. There is Jaime and Dianne and so many of you that will come and visit and spend time and even spell me (and Jaime) and see Simon and how he is growing and changing for better or for worse. But there is no one but me that will be his primary. I am a stay at home mom again. I am a stay at home mom for a baby that is very sick. I am the stay at home mom for Simon who is still in heart failure and doesn't look like it or act like it but is. He is. His heart is not functioning any better than it was November 19th before we left the hospital. His medications, his naps, his feeding pump those are all keeping him alive right now. And, I am the one in charge of all of those things. I may get some (a lot of ) support with all that but I am in charge and there is no doctor, no nurse, no one that is more in charge, more aware, of all of those things than me.

I was supposed to go back to work November 17th. In some alternate universe I was going to go back to Creative Arts three days a week to work with children, teachers, families, and a community that I love being a part of. That is not happening. It's not happening now, and it may not be happening for a long long time. What will Simon's function be like in three or five years? Will I ever get to finish my licensure hours? Will I be home-schooling Simon because he won't be able to handle regular schooling? Will I ever get to exercise those parts of myself that I really love (being a counselor, children's advocate, anti-racism trainer, outdoor educator) that are not a part of being a stay at home mom for a child with heart failure?

I am different now. Even more so than after the moment that Simon and I were no longer connected through an umbilical cord. So much more so. My life path looks so different that it did four months ago and even then it looked so different than it did before April 9th.
Sometimes I don't feel it at all and am just there in that moment of playing peek-a-boo and making my son laugh enough that I can see the two new teeth that he's growing. Other times I feel like everything is so elementally different I don't know who I am or will be for the next, day/week/month/year/lifetime.

Jaime goes back to work tomorrow and I feel like the last week has been this dream of time together. I am so excited for her to start this new job, meet new wonderful colleagues, and work again in an environment that grows passion. And I won't deny that there is a sliver of me that is jealous and resentful. It's there. It feels awful. How could I even think about being away from Simon at this time in his life, in his healing. But I miss that too. I miss that part of my life that I may or may not get back. I miss working with challenging children that sometimes just need someone to play some Uno with them and listen to who and where they are. I miss being a part of a team that is looking at how to turn a school into a working community with accountability, activism, and all kinds of learning going on.

And I can not imagine being away from Simon. I can not imagine giving up one moment with him, one piece of his care, his growth, his healing. I would and will do whatever it takes to give him the best chance at a full and rich life, whatever final recovery looks like for him full/partial/?

My life is changed and won't change back. I'm swimming in it right now. It's so much bigger than me, affecting all aspects of my life. And it's not even about me. I know, I know, welcome to motherhood. Only this feels a lot like motherhood plus and it's the plus that's feeling so overwhelming right now.

Just some of the time. Most of the time it's about the moment. A medication moment, a doctor appointment moment, a feeding moment, a nap, a bath, a walk, a smile a giggle, a new sound. Moment to moment. People keep asking what do we need? Visits? Food? A winning lottery ticket (where is that one?), and I honestly don't know. The question is hard, the offers are great. The winning lottery ticket would always be welcome (Jaime earning a little less, me not going back to work, expensive medications, insurance premiums, formula, etc) are an added stress but not a huge one. We are blessed with privilege and resources that so many other families are not. It's not going to be super easy but what has been lately?

Oh wait, this. This has been super easy; loving Jaime, Simon, our family and friends. Also delightful; delightful bringing Simon into our bed each morning for snuggles, delightful seeing Simon's little naked body in all it's newly rounded, line-less, glory during bath time. And of course delicious; delicious touching him, smelling him, watching him experience the whole wide world (or at least the much wider than Children's Hospital world) as we walk down Lakeshore, take a hike in the woods, look out at the Bay from the Albany Bulb, or simply eat dinner in a circle in our living room. Simply delicious.

We are approaching the Solstice this coming month. I am working hard at internalizing what it all means. Hanukkah, Christmas, the Solstice, it's all about the returning of the Light. I stand open armed to welcome it.
C'mon, bring it.

A Little Slice of Heaven

Today was my idea of heaven. Our best friend Dre came over at about 9:30 a.m. for breakfast and didn't leave until 8:45 p.m. tonight (after baking the most ridiculous cake at our house- a Peanut Butter Chocolate cake). Our friends Anne and Eric came over at 11:30 a.m. and brought us turkey soup and homemade biscuits. We went on a walk and then they stayed until 3ish, playing with Simon and making homemade wreaths on our deck. Then Alicia and Karen came over and made us a delicious dinner of cheese, bread and salad and then we almost killed ourselves eating cake. Here's what almost killed us.

The cake is 3 layers of devil's food cake with peanut butter frosting between each layer and on top and then topped with dark chocolate ganache. Even *I* could only eat part of a slice it was so intense.

Dre took a bath with Simon, Laura put him down, we all watched part of a movie and now Laura and I are getting ready for bed.

We HAVE to have a date tomorrow. Part of the deal of not being in the hospital is that we have to schedule alone time and so far we suck at it. We're going to have Dre watch Simon for a few hours tomorrow and reconnect a little before I start my new job and go on a business trip Tue-Thursday. Exciting and daunting to think about starting something new.

Friends. Food. Home. There is nothing I like better and I had a delicious drink of it today.

Damn it feels good to be home.

I Knew I Felt At Home For Some Reason...

Okay, Shimmy woke up REALLY early this morning and I went on the CHO website to putz around while he played in his saucer.

Reading the "About Us" section, I found this:

In 1912, Mabel Weed and Bertha Wright, a nurse, founded Children's Hospital, then called the "Baby Hospital." Its first home was the stable of the old McElrath mansion. Today, with 191 licensed beds,Children's Hospital's medical center offers outstanding patient care,and also supports nationally recognized pediatric teaching andresearch. (http://www.childrenshospitaloakland.org/about/about_history.asp)

All my red flags went up about 2 women of that era doing a venture like this together with no mention of a husband so I typed in the two founders' names and the word "lesbian". Look what I found!

Bertha Wright (1876-1971), known as the West Coast's Lillian Wald and Jane Addams, pioneered public health nursing in California in the first decades of the twentieth century. Her life partner was social worker Mabel Weed. They lived together for over 40 years, adopting and raising three children and providing foster care for many more.
(http://www.glbtq.com/social-sciences/nursing,2.html

How awesome is that? I love it.

Had a pretty mellow day today. Went on a dog walk and on the way home, Simon was in a stellar mood and decided, after some prodding, to show me his teeth. He has a chapped upper lip which looks deceivingly like a tooth but you can see the two little nubbins on the bottom.

http://www.youtube.com/watch?v=NfQ1FHmL7wU

I tried a number of variations on the "Show Me Your..." command including one often heard during Mardi Gras. It brought chuckles from the front seat AND the car seat.

We had Alex and Jake from our birth group come over and we had a nice time. Roxie thought Jake was another puppy and tried to clean his ears:
http://www.youtube.com/watch?v=xP6zd_4YklI

Karen, Fred and Zuzu also came over and brought yummy Thanksgiving leftovers. It was very sweet.

Turns out MCT oil is not the source of all evil. Simon booted all over the place today even with no oil. Not quite as much as he has been, but MCT is not the lynchpin, evidently. Also, I never really thought I'd use San Pellegrino to flush nasty crud out of my baby's NG tube. Gross. Effective. Thank god for cases of it at Costco.

I have been remiss- weeks ago I promised one of our favorite nurses, Kathy, that I'd post a picture of her puppy Brutus on the site and ask for good thoughts for both of them. Brutus has cancer of the tongue, I believe, and will probably need to be put down soon :-( We're hoping for very sweet time until that point, a quick passing and comfort for Kathy when that day comes. She's had Brutus since he was an itty bitty puppy and I can only imagine how hard that is. Big love for Kathy and Brutus please!


p.s. yes, Kathy is that hot in person.

Giving Thanks

So much to be grateful for...

Had a really nice Thanksgiving at my Mom's house with 14 of us. Simon got to have a whole suite in the master bedroom upstairs and had a few good naps. He sat at the table with us and played with some cranberry sauce, turkey and mashed potatoes (didn't eat anything but got to mush it around a bunch).

Then, tonight when we got home, Laura checked his heart rate before giving his Digoxin and, for the first time in probably 3 weeks, his heart rate was under 100 while he was sleeping. This is AWESOME! We had to call the cardiologist on call and get approval to give it to him anyway and had a nice chat with the doc. She was happy to hear that he was doing well.

We also forgot to bring the MCT oil with us to Palo Alto and lo and behold, Simon did not throw up all day. We are going to check with the team to see if we can stop giving it to him and see if he can still gain weight. That would be awesome because he pukes about every hour or two and it's really messy, not to mention unpleasant for him.

We didn't get a chance to say what we were thankful for at dinner so I'll reflect a bit now:

Simon is out of the hospital

Simon's heartrate is under 100

My Mom's house turns out to be a great place to be with a baby

We can afford (barely) to have Laura stay home with Simon

My new health insurance, while costing 8 times my other coverage, will cover all Simon's doctors

We have incredible friends and family who are helping us get through this

We both have great coping skills (that are being thoroughly tested)

I was able to find a new job that I'm excited about

Simon is alive

Roxie was an awesome dog at Thanksgiving

Laura and I are healthy

All of our parents are alive

We have two cars we like that are reliable and affordable

We have a fantastic apartment that fits us and all our stuff

Our kid is not half as sick as a lot of the kids still at CHO

Simon got to meet his great grandfather on his last visit a few weeks ago

We have a washer and dryer

We have a dishwasher

I am not doing this as a single parent

We have a fridge full of food and more coming

For these things and so many more, I am grateful. More to come in a few days, perhaps...

photos from home

Here are some photos from the last couple of days.

Simon meet Bacon. Bacon meet Simon

And a new great love affair has begun

Lookin' Good In Pink

The onesie says it all

Add the leg warmers and Richard Simmons Watch Out!!

Still working things out with meds and naps and outings and such.

Our cardiologist visit today was smooth with no big surprises or changes ('cept for Simon's weight which was nicely up).

Thanks to all for the inquiries of how best to support us. However you can, the answer is yes, we'll take it.

It's a time of huge Thanks Giving. We give lots and lots of thanks for all of you.

I'll (Laura) write more when I feel like it won't come out like a tidal wave and crash the blogspot server.

Love to all.

Good News Not Related to Simon

(Jaime speaking)

I have a new job! I will soon be working for the Contra Costa County Health Department. Leaving is a bittersweet thing. I loved my coworkers and what I actually did in my old job. However, this new position will have a much more manageable pace (I switched tasks approximately every 3 minutes at my former position- not kidding, I timed it once) and is much more in line with my training in and passion for public health and reducing racial and ethnic health disparities.

For my beloved colleagues and associates far and wide who may be reading this and may not know I've moved on, don't be strangers. My personal email is jaimejenett@gmail.com.

We just keep getting great support and love and we totally need it. I start my new job Dec 1st, so Laura really just has a week to work out the routine before she's on her own to get his meds in, keep his feedings on schedule, and figure out how to get out of the house with all of this stuff. It's the level of detail that other folks can't really help with. We're trying to figure out what we really need help with since our beloved folks keep offering. One of the big ones is probably just to come by the house and *be* with her while she's doing all this. It was easy in the hospital to forget that there were always an extra set of eyes, ears, and hands when we needed them. We are also missing the social time and just the feeling that we aren't alone, from the hospital.

We both have been talking about what this all means long term.

We are applying for disability benefits for our baby.

We have a severely disabled child.

Our kid is special needs.

One part of me really wants to reject these labels and just think about this as a temporary thing and just think about Simon, not about how he will or won't fit into all these systems that make up the world. But then I have to remember that he really is ill and there are some programs and systems in place to help families like us. And we're going to need that help.

One of the things that is hard is that a few of folks have said things like, "Oh great! They're out of the hospital. Phew". I always feel like "Debbie Downer" when I have to set them straight and explain that it will be years (at least 2, I think) until we know if Simon will a) continue to stay alive b) get any better and how much better or c) stay as impaired as he is right now. He's out of the hospital and he's not quite sick enough to be in the ICU but he's still really, really sick. When we went to our pediatrician appointment today for a (ha ha) "well" check up and listed all the meds he's on, she was a little shaken. It's times like that I really get it.

Laura today said, "Sometimes I forget that I have to treat him like he's an invalid and not push him too much". He IS. This is sort of the classic invalid illness, right? Pale, clammy, needs to rest all the time, sort of skinny, can't do anything like normal kids, etc. It's so cliche and so goes against my deeply ingrained "tough it out, it's not that bad" thing with illness. Right now and maybe not ever, we can't push him. We can't let him get really frustrated trying to roll over or learn to do something new or his heart gets too stressed. We have to treat him with kid gloves a little bit and it's so ironic. I really wanted to be one of those Moms who could be the safe landing pad for a big boo boo but who would not make a big deal out of bumps and bruises. It's going to be a very tight channel between real concern for his health and letting him take the chances he needs to take to be a well adjusted kid.

We go to Cardiology Clinic tomorrow. Hopefully that will be uneventful and just a nice reunion with folks. Probably some lab draws, maybe an Echo. Who knows what else. It really is a gift to go to this first series of appointments as a whole family so Laura doesn't have to feel like she's navigating this whole thing by herself.

P.S. Thank you to the muffin fairy who dropped off Banana Nut muffins today! Who are you?

As for what folks can do now that we are "out". Pretty much the same thing as before. Just show up as you can. Food is great, visits are great, offers for things are great whether or not we accept them (always greatly appreciated though). Oddly, nothing has really changed healthwise for Simon except for his location. That, and his increased love for bathing...check him out.

"yee haw, living large"

"Wait, what do you mean Carol's not coming to bathe me?!"

For us, a lot has changed.
One step at time.

Adjusting...

So we learned a few things today, or rather confirmed them.

We really can't do anything else while Simon is getting his morning meds other than sit quietly and read books. This takes about a hour. Yesterday we tried it while we were out on a walk (I was pushing meds into his NG on the sidewalk, to slightly horrified stares) and he puked his little guts out about 10 minutes later.

Two outings is too much for the little man. One is probably just fine. We went on a big dog walk at Pt. Isabel this morning with Shimmy in the stroller. I thought he'd sleep but he wanted, of course, to see everything. He had about an hour nap in the car seat once we got home.Then we decided to go to 4th street at about 2 pm to pick up some organizing crate thingys and walked aroud a little. He took another nap, about an hour and then woke up really cranky and pukey and went back down, after a fight at about 5:30ish. We both were a little freaked that he was so cranky and pukey.

This is what makes this harder than normal parenting. Normal parents take a zillion years to get out of the house. They have a trillion things they have to take with them. We just have more that the average parent. Still feels within the realm of normal.

But unless you're SUPER neurotic and hopefully getting help for it, most parents don't fear that every time their kid is cranky or won't go to sleep or pukey or sweaty that the kid is about to end up in the ICU and maybe die within a few days.

We do.

I know (or maybe just really hope) that the longer time goes on, the less intense this will be, but right now it's like there's a big awful thing just under the surface and if you scratch at all, something sinister oozes out and forms grey, icy little crystals.

I consider myself an optimist. I don't really walk through life waiting for bad things to happen. If I'm spinning about something bad I'm afraid of happening, I can usually use my powers of rational thought and catch myself.

But this is different. I've already seen the monster. I know it's there and alive and well. I don't want to think that it's got nothing better to do than to just wait to gobble Shimmy up but I'm not sure he's like Santa and has lots of other kids to worry about.

Hey, it's like the Grinch that Stole Parenting!

God I'm glad I can laugh about this.

Day 2

Just a quick update before we fall into bed exhausted...another good day. Lots of smiling, got to ride in his fancy stroller face forward for the first time (had a good nap), still working out all the logistics with the meds and pump, etc.

It's starting to sink in for both of us, but especially for Laura, the magnitude of what this means for us long term. It's really daunting to do all of this ourselves (and soon Laura by herself) without hospital eyes/ears/hands. Plus we're back to being sleep deprived by our precious boy :-)

Hoping the high lasts a bit longer. I think we're starting to come down a little and reality is sinking in a bit. This could be harder than the hospital in some ways. In a lot of ways it's 10 times better, but it's a lot of work instead of a lot of suffering. When things are in crisis, sometimes the rules are lifted, you are able to call in help, you may get a free pass here and there. We're now settling into WORK. We're (hopefully) moving past the crisis phase into the next one which I think may officially be called "Reality Check".

Feeling tired, hopeful, worried, overwhelmed, joyous, apprehensive, triumphant to have made it this far and terrified of what will or won't happen in the next 2 years or so.

Off to bed so we can get some zzzzzzzzzzz's before Shimmy wakes up.

Much love to y'all

Day 1 (at home!)

Wow. Wow. Wow. So tired. So happy. Still trying to believe it's real.

I had been seriously considering going to work today and this morning I thanked whomever that I didn't. It was a little like having a newborn again last night. We woke up about every 2 hours- sometimes for Simon, sometimes for his equipment. My first words to Laura this morning were, "did you see the truck that ran over me?". Her response, "no, but it got me too".

Still, it was such a joy to wake up, bring him into bed, get Roxie up there and all just be a family.

We're working out all the kinks- still being tethered to a pump, working the pump, calculating how long it will take to get out the door in the morning when we have to draw meds and give them with 10 minutes in between each one so he doesn't puke (he still does but it helps a little), figuring out where to put all his STUFF. We realized we have to get a baby monitor (anyone have one they don't use anymore?) because we need to hear if he's puking in his bed when we're in the living room or kitchen. It looks like a pharmacy exploded in our house, plus there's a stack of chucks by his crib and a stack of towels in the living room for puking. My big challenge this weekend is trying to create some sense of order and make a place for everything. He has mountains of toys to clean and sort, I Clorox wiped all his books that were at the hospital and we're washing everything that was fabric that was there. It's sort of like tackling a lice infestation times 100.

We went on a dog walk today, my mom came by, a home health nurse came by, Carol and Megan (our 2 primary nurses) came by, we went to get groceries and then my stepmom and a friend came by. It's so great and I'm so exhausted. It's like when he was first born- we have to nap when he naps, etc but he's WAY more fun then he was when he just came out. He has been so smiley and happy the last 24 hours. More than I've ever seen. It's magic. I hope we can keep this good trend going. I really, really don't want to go back to that life. I figure we'll end up there at some point for a short stay (a bad cold they want to monitor, etc), but I really don't ever want to be in Room 1 again or stay for long. Ick.

What an incredible thing this all is...it's better than I could have hoped. We can do this. It's hard as hell and still really, really scary, but we have our baby back.

Home is where the Heart is, Shimmy's heart that is.

When we got to the hospital this morning, they said they were sending us home at around 11 or noon. I went to work for about 90 minutes and then came back to help Laura pack up and BOOM we were home by 12:10 pm. Evidently they really needed to boot us out b/c they had so many post op admissions coming in.

Dolores, who works the front desk on days, make an announcement over the ICU loudspeaker that Simon was leaving and anyone who wanted to see us off should go see us. We ended up with about 10 visitors!

Simon started smiling as soon as we got in the car and has hardly stopped since. He grinned as we drove down in the parking structure. He smiled while he watched Roxie.

But he really smiled when he pulled his NG tube out less than 2 hours into being home. Stinker. I ran for the camera to get a non-noodle-nose picture. Here he is.

He took a nap, threw up here and there and we went on 2 walks around the neighborhood to see local shopowners and such.

I took a bath with him tonight and literally for 20 minutes he barely stopped smiling. He splashed and played with toys and would look up at me and grin and go back to splashing. I (like a dummy) am surprised by how happy he is. I think I thought he a) wouldn't notice or b) would be so used to the hospital that this transition would be hard on him. We'll see how tomorrow goes, but so far, he's a grinning fool. Only one projectile vomit (that Roxie promptly cleaned up). Blech. It *is* good to have a dog, though, in situations like that :-)
It looks like a pharmacy exploded in our house. There are syringes and bottles and tubes and crap everywhere. I'm itching to get lots of containers tomorrow.
We're both a little weirded out by the fact that we're about to go back to having interrupted nights of sleep. One of the silver linings of this whole thing has been that we've typically gotten 8 or so hours of sleep. Those days are likely over for a while. I'll take it.
This morning, one of the cardiologists saw Laura and said, "We didn't think he'd make it this far. This is a VERY big day.". That about sums it up. I keep saying that no matter what happens, getting to this point is a victory. Two months and even 2 weeks ago when he was so sick again, I really wasn't sure if we'd ever see this day. Simon is the hardiest little weed I've ever seen...
It's all very surreal and so, so beautiful.

Hours Friends, Hours Away

So it's Wednesday evening and we are still very much on the going home track. I won't really believe it until we are in the car with Simon in the back seat but we're closer than we've ever been. It's been a little rough going with Shimmy being a little more pukey than we've seen, a higher heart rate, he's lost weight since Friday, and we just heard that his BNP is in the 1600's up from 1129. So what are they thinking? I started the day feeling so hopeful and good and have been getting consistently more and more frightened as the day wore on. We regressed on the feeds two steps back and he still had projectile vomits throughout the day so we're going back to continuous feeds for a while to see how he does.
I know that vomiting and weight gain are things that we can manage at home but I won't pretend that the other things aren't freaking me out more than a little. I was talking to my sister today and I realized how tense I was thinking about going home. Then I realized I'm not tense, I'm frightened.
I don't get frightened really. I've been run over by a car, I've lost brain cells, I gave birth on the floor of my living room. Things might sometimes be hard to go through, I know hard. I've done it.
I'm scared right now. I'm scared that Simon is not on the upward trajectory that he seemed to be on even just a week ago after his serious bacterial infection. I don't feel frightened about going home even. We are so close to the hospital and being home where we can have some control over his environment can only be good for him.
I'm scared that he's not getting better. That's what I am terrified of. And, as much as I love all the messages of faith and dreams and visions, I am not clear today that that's the road we're on, not clear at all. If it were just one thing, the weight loss, the heart rate, the puking, the BNP, then I would be less inclined towards tonight's pessimism. But it's not. It's all of those things and they are of course all intertwined. I don't want it to be a trend. I want it to be just a bad week. We'll have good weeks and bad weeks. I want it to be different once we get home. I want him to feel it the same way that he seemed to respond to moving from the ICU room 1 to the Annex.
I do not want to come back here. I want all our new CHO friends to come to us but I do not want to come back her other than for outpatient visits and the yearly heart party.
AND, I am thrilled to be going home and have control over lights, sounds, when we go out, what we all get to eat and spending time with Roxie, Jaime, and Simon as a family.
Family. Home again. Unreal.
Hopefully tomorrow we post from home.

Laugh and whole world laughs with you

Here is one of the very funniest videos of Simon ever. Check out the tongue!
http://www.youtube.com/v/Fu_HuePtU_k


Still looking at going home the end of the week. Still a little freaked out that Simon's heart rate is about 10-20 points higher than it has been. Still really ready to get out of the hospital. We've started Regalin to get his upchucking under control (he didn't gain any weight between Friday and Monday) and hopefully get him really stable and in a good place before Friday. Fingers crossed, prayers sent out, visions of Simon home. Please.

Sunday Update

For all you Microbiology nerds: Simon's 2 major bacteria in this last infection were Enterococcus faecalis and Enterobacter. Both are very common in the ICU. They're icky and glad they're being killed by all the antibiotics.

Speaking of antibiotics- Simon's IV conked out yesterday, on day 9 of 14 for his antibiotics and the Infectious Disease team made the (I think very wise) decision, to not put in another IV and instead do his antibiotics in a once a day Intramuscular injection. It hurts like hell for about 2 minutes but then it's over and we don't have to worry about another infection via a line in him. We're seriously looking at Friday for a departure date. Again, I'll believe it when I see it, but so far so good and we're reducing the ways Shimmy can catch cooties by keeping his skin mostly intact.

He's been a tiny bit more symptomatic in the last 24 hours (slight bump in heart rate and very light sweat a few times). We're not sure if it's just an off day, if they need to increase his meds or if it's something bigger. I (Jaime) choose to go with the "off day" theory.

Laura and Simon hung out in front of the hospital for the first time and *2* staff members who were driving by, off duty, pulled over and got out of their cars to say hi. One of them was our dear, sweet Thomas, our area custodian, who has been off with a back injury. We were afraid we'd go home before he came back- we were thrilled to see him and meet his wife in person. She was actually the one that spotted us, recognized us from the blog (that she's been following), and pulled them over.

Here are some cute pics from the last few days. Simon is loving his tongue, rocking the urban cowboy look, digging baths and strolling in a doll size stroller.

More wedding pics and a few thoughts

Link to more wedding pics:

http://www.kodakgallery.com/ShareLanding.action?c=31lz39b.2x55x23f&x=0&y=-lig5q3&localeid=en_US



I also forgot to mention a dream I had Thursday night. In the dream Laura, Dre and I were in the bedroom with Simon. Dre was holding Simon and in the dream he was dying. His breathing was getting slower and slower and finally it stopped. I went into the living room to tell my Mom and Stepdad and then went back into the bedroom. He sputtered, took a deep breath and clear as day said "Spinning Fishes". I couldn't believe that he had spoken so clearly and ran intot the living room to tell my Mom. She said, "Jaimer, I think that means it's not his time and he plans to stay." The spinning fishes in the dream were a reference to the message the Yoruba Priestess, Tisch, got in her communication with Simon a few posts ago. I woke up feeling very excited.

Also, we realized we ended up in bed 7 when we were moved back into the ICU and left that bed on the 7th. Tisch had talked about the power of the # 7 for Simon. Again, who knows about any of this, but it was interesting...

Hee Hee Hee

Simon had his first full on laughing session today. Laura and I were in the cafeteria with him and Laura made a funny, loud, high "Boop" noise, almost like an old computer. Simon grinned, stuck out his tongue and started to laugh. She started to combine it with Hide and Seek and he just laughed and laughed. We played this game for at least 20 minutes.

I've never seen Simon laugh. I've seen him chuckle. I've seen him smile (not much until this last week). I've heard him grunt/laugh/grimace when I've tried tickling him. But I've never seen him really laugh until tonight. It was glorious.

I had a long venting session tonight with Laura (poor thing's ears are probably bleeding). I had a 12 hour day yesterday and only saw Simon for a hour yesterday morning and then only for 30 minutes this morning before I had to go to work. I ranted about that a little. Then the hospital called tonight with something slightly concerning but really nothing major and I had a big adrenaline rush and got furious. We're so close to coming home and I will be SO pissed if something happens again.

I'm seriously at threshold. My mantra is "I'm doing the best I can. I'm doing the best I can. That's all I can do". I've been horrible to Laura the last 48 hours or so and feel terrible about it and then I go back to my mantra. Things have been a bit stressful at work. Back to the mantra. I can't do more than I can do. If it's not good enough, it's still all I can do. You can't get blood from a stone, especially when the stone's baby has been in the ICU for 15 weeks. Sometimes I can't believe *I'm* still alive. I can't believe that I'm happily married, even in the midst of all of this. This is the kind of stuff that breaks up marriages. We just have bumps here and there but we work it out quickly. It's pretty awesome.

Simon is turning out to be a really fun kid. I was afraid he'd be grumpy his whole life, but this last week has shown me what is possible. It's really exciting as his personality is emerging. Plus he's turning out to be such a dreamboat- I thought he was sort of scary looking for a while there when he was scary skinny and mad all the time :-)

We can't find out f****ing camera again so no pictures tonight. Here's for hoping the patron saint of cameras put it in a safe place that we're too wiped out to remember.

Hugs all around.

TGIF

By Sophie

Sophie- my God Daughter and first cousin once removed wrote this for her "important person" essay at school. She's a very wise 12. Grab a hankie

My second cousin Simon Lev Fitch Jenett is one of the most important people in my life. Simon was born on April 9, 2008 at home to Laura, my godmother (and first cousin once removed) and her wife Jaime. This August, at the age four months, Simon’s breathing became shallow and rapid. His alarmed and anxious mothers took him to Children’s Hospital in Oakland where he was diagnosed with an enlarged heart. Now, Simon is 6 months old and continues to stay at Children’s Hospital in the ICU (intensive care unit).
Even with his condition, Simon is a very chipper baby. I usually visit him once a week, often on Sundays, and every time I enter the ICU he looks up and grins at me and his big blue eyes brighten. It’s almost like he’s trying to tell me that he is all right. Simon is also a very curious baby. When I hold him, he usually explores my face and sticks his fingers in my mouth. One time, my friend Ellie Portnoy and I went to go visit Simon and Ellie gave him her favorite bear. Laura was showing him the bear and Simon leaned forward and tried to bite its nose off and hug it.
Simon has a major influence on my life as well as my family’s. My extended family has come from everywhere to visit him, which allows us all to spend more time together, though many times when I see my family, everybody is really depressed. As a result of Simon’s illness, I think more about how lucky I am to be alive and healthy. He teaches me to see the good in everything, I mean, he’s the most cheerful baby I know, especially if you look at his current state. Also, Simon teaches me to develop patience and not always rush things, to just enjoy them. Over all, Simon teaches me to appreciate every moment of my life.

Quote of the Day

Margaret, one of our nurses from the first few days in the ICU was working in the Annex today. She's been a nurse here for a long time and has actually trained some of our other nurses. She loves hanging with Mr Shimmy (even though she wasn't his nurse today) and was commenting on how far he's come. She was saying how he really is a miracle boy with everything that he's gone through. She also knows some of what I've gone through (with motorcycles and horses) and came up with a most unique title. She called me a Miracle Whore.

Let it sink in for a minute.

Miracle Whore. I like it.
It was on par with Sister Bernice (the Hospital Chaplain) coming by the other day (after Prop 8 passed and Shimmy got sick again just before we were supposed to go home). She came over as Simon and I were hanging on the chaise lounge (our fold out chair) and just looked at me and said "Dammit! Dammit to Hell." No 'hello', no 'how are you guys doing today' just that.

In other news Simon has cut two teeth now. The bottom two have busted through and he's deep into teething. He's also been happier than he's ever been and is clearly feeling good. It's a joy to see. He's more smiley and laughing at all sorts of different things. He's also doing an incredible job of getting himself to sleep in his crib. Most of the time.

This is Simon about 10 minutes into being quiet in his bed, looking over at me with a "I'm not asleep yet, I'm cute, but not asleep" glance.

His peripheral IV has lasted yet another day and they're still talking about sending us home Monday or Tuesday if it makes it till Sunday. I'm not talking to Simon about it.

We've contracted his feeds another 1/2 an hour and so far he hasn't thrown up. Yeee haw. We're at 2.5 hours on and 1.5 off. Today we went for a walk during one of his off times and it was amazing to just have him in the sling and be completely wireless. AND tonight's weight....7.14 kilos! That's 15.7 pounds. Back on the weight train. Yay!!

Love to all of you for keeping up with us (for 103 days!)

Oh yeah and here's the video of Simon after only being on IV fluids for 24 hours. I especially like the last few seconds where he's realized where the sweet taste is coming from. http://www.youtube.com/watch?v=NLO8bn9Dqis

Off the bottle but someone found their tongue

So Mr Man stopped taking the bottle but I'm not surprised. I think he just got so hungry coming off his infection and 24 hours of just IV fluids that he was acting on instinct alone. Now that he's back to feeling better (and boy is he feeling better- see pictures) he's more aware of the noodle in his nose and throat. I ain't bovered. We have time to work with him around that once we've really bulked him up and are home and can work with more than just gross tasting formula (that must really only remind him of puke since that would be the only time in his life that he's tasted it- remember that he hasn't taken anything by mouth in the last 9 weeks and so the only time that he would have had formula in there would have been when it was coming back up- real pleasant). He's still really interested in things oral (you'll see in the pictures) and yes, today he discovered his tongue and how it's actaully something that he has control over and is kind of fun to move around. It's toooo cute. He's seconds away from blowing his first razberry and I can't wait to see who it's directed at.

So we're off Milrinone, down to a more specific anti-biotic, back to building up to bolus vs continuous feeds, back to standing, getting to sleep on our (his) own, sitting up and playing again, and just generally getting cuter and more interesting with each passing day.

We're somewhere between 7 and 11 days away from going home depending on whether or not his PIV lasts or we need to put in a PICC line. If he's PIV lasts until Sunday they're ok with him just getting a 10 course of anti-biotics but if it collapses and they need to put in a PICC line then they're thinking that they might as well give him a full 14 days. I get it. I'm ok either way. It's a win win.

Simon's PICU "sister" Jasmine went home today (YAY!!!) and came by to say goodbye. Simon was thrilled to see her again but sad that he won't get to for a while. He fully intends on coming to one of her basketball games in the future and cheering the loudest as she scores with slam dunks.

Here are some pics of the Shimster in all his recovering glory

Lookin' Good Like A Strawberry Should

Forget the Formula I want ScharfenbergerI Love me some Jasmine- I'll drink from a Sippy cup for her anytime

I think that Jacuzzi's are great. Can Carol come home with us?

100 Days!

Today we have been in the hospital for 100 days.

*100*

We came in to a really cute sign on the crib and another one on the chair from our nurses. Simon is "back". He was smiling and alert and playful today. It's incredible how obvious it is when he's "here" and when he's not. It makes me realize how present he is when he's awake and feeling well.

Laura says:
Little bit of a rough night last night in terms of puking but we challenged him with a greater increase in volume as well as richness of formula. Pretty amazing that given that, he was so chipper and active this morning when we came in.

He's back to standing and playing with us and toys and enjoying music. I'm a little nervous about the PICC line that we'll need to put in to finish the course of antibiotics. He's still a hard "stick" and I'm wondering how many times they'll need to try before they get one in and where it'll be. If it's in his head again that'll suck. If it's in his leg then no baths for a while which he's been enjoying so much lately. If it's in an arm then then I guess it's no different than the IV right now but either of those options require a poke and trauma. I feel so mixed that we're back to that. The Broviack was so great in that Simon hadn't been poked in months. Of course the fact that it got infected and caused him to go septic was not such a great thing- much worse I know. Still it's hard to watch him scream even if it's for just a few minutes. I have to contextualize it in that it's at least him fighting pain and showing a preference for no pain versus the other day when they needed to draw blood (not from the Broviack- it was still in) and he didn't even flinch when the needle went in.

The plan today is to turn off the Milrinone and go back up on the Enalapril. I'm hoping that we can get back to our daily passes for walks and get the little man out in the sun for a little bit. I can tell that he's feeling a little penned in because every time we even just open the curtain he gets all excited to see further and more than he can when it's closed and the world is just bay #22.

We're on day 5 of antibiotics so really only 9(?) more to go and the team is already talking about being somewhat aggressive with getting him off his other IV drugs (Lasix). I know now that kind of talk is the precursor to the going home kind of talk. That's a good thing.

In some weird way I think we needed this (big) bump to really get us to that place of being ready to go home.

Jasmine, our former neighbor, who moved the other day :-( and her mom sent us a sweet email. This side of the annex is a little less warm/home-like without her. Such an incredible journey with so many wonderful people coming into our lives in the midst of this terrible time. Jasmine and her family really have become a central part of this story of ours and my days will be so different without them there in #21. I will say however that I am thrilled to the core that they are on their way home. That is a wonderful thing. May that someday be us.