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.