A Sweet Day and a Poem

(Jaime writing)
I started writing this poem yesterday when I was freaking out a little about his BNP number and that it would mean he won't get better, etc. I feel better now, especially since he's gone through this incredible developmental surge today- he suddenly is playing with his tongue (making raspberries, sticking it out , etc), flirting, getting his thumb in his mouth and so much more "talk". He's been chipper and happy so much more today than probably any day until this point- hospital and before that. That said, I know what a roller coaster ride this is and have no idea what tomorrow will bring. I almost expect a hard day after a day like today and also expect a day like today after a day like this past Tuesday when he started getting his Staph infection. We truly have to live in the moment...

Untitled

Death is sleeping gently
Outside the window
Holding vigil with us
As the baby tosses and turns
Tangled up in fate

Some mornings rays shine in clean and clear
Other mornings the light dims
Mottled and blurred by nose prints
Left from her watchfulness

She sits patiently
Holding her post
As threads
Wind and weave

When they pull apart
Like spider webs brushed by a shoulder
She opens her old, strong arms
To catch and soothe the spirits as they
Stumble
Lost without a body

Some mornings
I nod to her and carry on about my business
Other mornings
I press my face to the window
Peer out
Eyes squinting
With equal parts
Malice and gratitude

If his ties begin to bind and cut
Torturing
I will rap on the window
Call to her and
Nod

I hope that day will never come
But now I know her
I felt her fingers on my shoulder that night

And was oddly comforted to know

We are not alone

Gifts Continue

Today our neighbor Jen came by and we ended up ditching her with Simon to go on a quick walk. When we came back she was SOUND asleep with him in her arms which was absurdly cute. Also absurdly cute was the fact that the mom of our next door neighbor in the ICU for the last 2 days left us a gift of 2 books for Simon and a card. Laura had forged a connection with them- checking in to say hi when she went by, offering the little girl Simone a softie to borrow to sleep with her first night when another kid was screaming bloody murder and generally being her cute self.

Then the nurses changed shift and Carol, our regular evening nurse, came bearing gifts. She had gone out and gotten Shimmy two onesies. One said "I might barf" and the other one says "I heart my moms". Plus she got this totally outrageous coloring book with racy, inappropriate pictures and comments. It was so totally fabulous and unexpected. She shopped for us and Simon on her day off!

Another cute thing- Dan who was our resident when we first came in, has now posted a comment on one of our posts. These docs and nurses are crazy sweet.

We're having a big family dinner in the cafeteria with Laura's sister Jen, her husband Frank and their daughter Maya (up visiting from L.A.) and Laura's cousins. Should be fun!

A Quick Shout Out to the (Grand) Parental Units

My Dad (Bruce) wins the award for Perservering Through the Most Annoying Situations.
Last weekend he drove all the way here (an hour one way) and realized he left his briefcase back at his starting point, drove all the way back to pick it up and then drove *back* here to bring us Sushi. Then, today, it took him 2 hours to get here because the restaurant where he was going to pick up dinner gave him crappy directions. He still made it here and went out and got us food even though it was 8 pm by then and he had been driving for forever.

My Mom (Dianne) wins the award for the Most Hours Logged at the Hospital.
She has taken an indefinite break from work to come stay with Laura at the hospital during the day when I'm at work. She also stayed over at the hospital a lot when he was first here (I wouldn't let anyone else do it because I knew she could sleep through ANYTHING and would suffer the least of all our dedicated folks doing that task). Oh yeah, and she's putting on a wedding at her house this weekend for my Aunties, Kris and Judy.

Nola wins the award for Best Brownies. I think we're going on 3 batches now and they are killer. She may have to buy us all new clothes when this is over b/c we're seriously going to be 9 trillion pounds. She's been up to visit a lot and it's been very sweet (literally and figuratively).

Ed wins the award for Best Shop Talk with the Doctors. He's been so cute asking the doctors all these techinal physics questions about the monitors and Echos, etc. I'm convinced it's winning us points with the nerdlings and we're taking all the points we can get!

Bernie wins the award for Most Clothes Removed and tied for Furthest Travelled with Eileen. He had a very sweet afternoon with Simon having some skin to skin time after Laura made him take off his shirt. He is also the baby whisperer. The nurses all think so too. He really wants to come back soon but has to go be a fancy pants opera singer.

Eileen wins the award for Best Animation of Inanimate Objects and tied for Furthest Travelled with Bernie. She spent many hours bringing a little bit of Broadway to Simon with all his various and sundry toys and stuffed animals. She is also coming back from NYC in September which will be great!

For these people and so many others, we are grateful.

Simon Hits Seventy!

Today Simon had his 70th visitor to the PICU! That's right. The little man has had 70 visitors (many of them multiple times) since August 1 when all this mishegas began.
It's really so bittersweet to even think about. So amazing that so much love and support has come our way and so bitter to think about the situation that is inspiring so much love- not that there wasn't the love there when Simon was born and for the first 3 months and 23 days- it's just quite the tidal wave of love that we've been experiencing for the last 4 weeks.
Yup, today four weeks ago was when this all began.
And where we are today versus 4 weeks ago is also pretty amazing. Simon is stable and responding so well to his new regiment of anti-biotics. He's still on the Milrinone and will be through the weekend but since he's been weaned once, we're hoping that it should be a relatively similar wean again and that he'll just start over again with showing us that he's ready to stay off it. His BNP score was quite high this morning- that's the test that lets us know how distressed his heart muscle is and unfortunately the higher the score the weaker the muscle. Dr Patel was surprised once again to get that score given how alert and happy Shimmy was this morning when he came in before 'rounds. Simon is just a living contradiction. We had a lovely morning with smiles, page turning, lots of eye contact with visiting nurses and doctors, lively conversation, and even a solid poop and dream feed (just one nursing session and that was in his sleep).
AND
Simon's heart was pretty wrecked to start with and the staph infection just kicked him while he was down. We're technically still in heart failure and waiting to see some kind of improvement on an Echo Cardiogram after four weeks. It hasn't happened yet. It's more than likely that it won't for a long time to come if it's going to happen at all. We're still not sure what camp Simon's going to end up in- a) Full recovery b) Partial recovery or c) Needs a heart transplant to keep going.

Day to day is manageable. Today was better than yesterday which was better than the day before. It's the roller coaster ride I never bought a ticket for.
(We'll write more later about the price of this ticket)

Love to all

Laura

He's back

For the most part, Simon's back to where he was on Monday. Tuesday was wicked scary, yesterday all about sleeping and today he seems almost back to where we were before the staph infection really hit.
He's still feverish but we're controlling that with Tylenol and Motrin. He's on a 10 day regiment of anti-biotics but they've switched it from Vancomyecin to Oxycillin as they were able to isolate the bacteria and find the most effective treatment for it. The nice thing is that the infection at the Broviak site is in fact the same that was found to be in his blood and it's not the resistant to anti-biotic kind which is great.
The bummer is that this is a set back in terms of when we might be able to leave the hospital but since we weren't really working off any kind of time frame it's not that palpable just that it's a set back.
I got some smiles and chuckles this morning (Simon is working on his "razzberry" and was enjoying my mock sneezing) and Auntie Dre, who has been an amazing constant for little Shimmy (really since his birth but even more so during this time) was the perfect snooze pillow.
We've misplaced our camera :-( so no pictures right now but Simon's looking good.
Love to all his fans out there.

Laura

A Little Better This Morning

The ICU docs just rounded and the gist is that he looks a lot better which means he's responding to the broad spectrum antibiotics which is a REALLY good thing. They're guessing it's a Staph infection that he got when Staph from his skin (we all have it) got introduced through one of his lines. Now they're just trying to find out what type of Staph it is so they can pick the right antibiotic. This is the hazard of IVs and invasive procedures, but they HAD to do it, so...

They have to keep the Broviac so they'll try treating the infection through it instead of pulling it. It will be longer than a week of treatment (if it were just a regular IV, that's about how long the antibiotic treatment would be). Dr. Hansen also talked about a new/ancient treatment for an infected line which they call an Ethanol Lock. They basically pump the line full of concentrated ethanol which kills just about everything (they don't pump it all the way through, so Simon won't actually get drunk. Poor guy, I bet he could use a drink).

His cousin Caleb came by with Cathy and he read Simon about 4 books. Simon was fascinated with Caleb and turned the pages quite eagerly. It was adorable...

I'll be going back to work tomorrow assuming we have no other drama. I'm way over the drama, but I know it will be weeks, possibly months and possibly years of this up and down ride, so I just have to roll with it.

Until later...

At least we know

So Simon's infection is systemic not just localized to his incision. They're still trying to identify the bacteria is his blood and will hopefully find the right antibiotic. The culture they took grew some yuck in ten hours which is unfortunately fast. It seems like he's responding to the broad spectrum antibiotics that they started yesterday. He's resting better and his heart rate is in the 160's today instead of the 200's. He's still warm but not anywhere near as feverish as yesterday afternoon.

We think that Simon was fighting something from even before his surgery on Saturday. Who knows where it came from. They said it could be some kind of urinary infection or from one of the many lines, line attempts, or PICC. He's compromised in general from his heart needing work so hard to just maintain. Any thing on top of that is just too much for him. Folks here are doing an amazing job on working to be on top of it quickly and comprehensively.

Jaime's here for the day and we're doing well ourselves in terms of maintaining. I think our love is the best thing around and that just means that along with his Milrinone, antibiotics, and numerous medications, Simon is getting the best thing around. Not to mention the sweet sweet lovin' that's coming his way from all of you.

I think often of the army of supporters that are standing behind, and beside us as we're going down this road. It's like on a ropes course when you have folks spotting you as you're taking the big climbs, leaps and falls. The hands are there not touching you but just a few inches away should you need them.

Ginormous gratitude.

P.S. The "Team Shimmy" buttons are in. Bruce is bringing them to the hospital today. Get em' while they're hot.

One step Forward, Two Steps Back

Today was a rough one. Jaime dropped me off this morning at the usual time and when I got upstairs Meghan our wonderful day nurse mentioned that Simon seemed a little more fussy than usual and was having a harder time taking his early morning nap. I get in around 7:30 in the morning and Simon has usually been woken up around 6am had some smiling time with visiting nurses and then is napping when I arrive or is just ready for a little snuggling with me and then goes right down.

He was clearly happy to see me but almost immediately let me know that something was making him unhappy. We sat for a while and I checked all the regulars (diaper, boob, book, etc) to see what he wanted. None of them seemed to work and then I saw that he was definitely tired, but having trouble sleeping. I thought that he felt warm and was wondering if Simon was teething. He wasn't interested in chomping on anything and then he puked up almost his entire 9 o'clock feeding. That's when I noticed that the redness that I saw yesterday right around his Broviac line (and attributed to changing the dressing) had gotten bigger and now there was some "juice" underneath the dressing as well.

And that's when the fun started.

We went through several folks on the ladder trying to get them aware of something going on (that I thought was serious right away. Neuroses and/or mother's instinct) and also that Simon was getting more and more worked up and so his heart rate was just going up and up. Simon was also feeling hotter and hotter to my touch but his core temp was saying that he wasn't really feverish. He wasn't that interested in nursing around his 12 o'clock feeding which I thought was weird since he'd puked up most of his earlier feeding and the fussiness just increased. His heart rate kept creeping and when it hit 190 I called for Meghan and asked her to get a Dr. She did right away and things picked up from there.

Simon got a whole blood workup sent out and folks finally seemed concerned with the incision site at his Broviac line. Two folks from the OR came looked at the site and they checked his core temp again. When it didn't show that he had a fever I asked that they check his axillary temp too (that's the underneath the armpit one which is supposed to be less accurate) since he's core one (through is little poop shoot) wasn't showing that he had a fever but the little man was wicked hot. Turned out that for whatever reason his core temp wasn't showing it but his axillary temp finally showed that he'd spiked a fever of 102.6

They gave him another dose of Tylenol that didn't seem to touch him and we went for another couple of hours in the same cycle of fitful napping and inconsolable waking periods. His next temp reading was 104 and they added a dose of Motrin overlapping the Tylenol. I think that was the scariest time of the day. Things just seemed way too familiar with Simon presenting much the way that he did that first night. His heart rate was around 216 (120-140 is normal) and his breathing was getting faster and more labored (not as bad as that first night but still not anywhere near the low numbers that we've seen in the last week or so).
Dr Patel and Rosenfeld confirmed what our Cardiac nurse Susan already told me, which is that Simon was going to need to go back on Milrinone and if his breathing picked up more then he might need to be intubated again but that it didn't look like we were quite there yet.
Fuck. Back on Milrinone.

That and they even had to say "intubation".

It was hard that Jaime was at work. Dianne was amazing to have here and by this time Jaime was able to leave early and come right to the hospital. By the time she arrived the Motrin and Tylenol seemed to start taking effect and Simon conked out into a finally restful sleep. It took another hour or so but his fever finally came under control and we got our first smiles of the day. He's resting now with a sleeping heart rate of 132 (it's been in the one teens before this but I'll take it) and even nursed for a brief minute at the 6 and 9pm feedings).

Holy Crap. So much for no more drama. I'm tired. I'm scared. And we're still waiting to know if this is a localized infection or something more systemic. Either way it's a delicate balance of still needing the Broviac line and that's where the infection is. Simon's getting two doses of anti-biotics, he's back on Milrinone but he's resting. So who knows what tomorrow will bring. Things feel relatively under control. Relatively, that's the key term. Nothing has really felt under control since August 1st but....I don't know. Some days are better than others. Some hours are better than others.

Today was a hard day. Simon is a very sick little boy and with as much spirit and fight that he's got, he doesn't need any more on top of what he's already dealing with.

Jaime says: I'm not going to work tomorrow. My manager had to tell me point blank not to come in. She's a nurse so when she tells me I need to be at the hospital...I need to be at the hospital. Of course I want to be here 24/7 but it's a very delicate process trying to figure out what warrants using my PTO when it's already getting low. When we're coasting I feel ok about being at work but when we have a bump, that puts everything into perspective. This really is a matter of life and death.

People keep saying to me "How are you doing this (working/living/functioning) while Simon is as sick as he is?" And I just say I have no other choice. You do what has to be done. I think my greatest life accomplishment this far will be to have weathered this with some kind of grace, humour and compassion for other people. Sometimes I just want the world to stop. I want all work responsibilities absolved. I want to wear a sandwich board that says what's happening. But instead I'll go to work and when people say "how's Simon?" I'll say "he's sick" with a little nod and half smile and then go about my business because life must go on. This is hopefully the hardest thing that Laura and I will have to do.

Anybody know any one that does Reiki? He could probably use a little.

Huge thank you's for all the meals as of late. They are much appreciated.

Simon's First 1/4 Pounder

Simon hadn't pooped in two days so he got some Glycerin to get things moving.
Simon got moving all right.
Simon pooped a quarter pound! A quarter pound of poop.
The little man only weighs 11.8 pounds. Well...now he only weighs 11.4
Jaime did that diaper change.
She gets a medal.

A Quiet Sunday

Another weekend gone by and Simon is recovering well from his surgery yesterday. He's a little sore and so has been getting regular doses of Tylenol but really that's about it. We're done with one dose of lipids and Simon already put on four ounces in the last two days. They're going with the all fat, all the time diet for at least another day and we're thinking of changing Shimmy's name to Gordo to suit him better. It's really exciting to see new rolls around his thighs and wrists. It's even been said that his cheeks are larger :-)
He also seems to be sweating less hopefully meaning that his heart isn't working quite as hard.
It's been quiet with visitors today and Jaime and I even got to go down to the cafeteria to enjoy some delicious food (Thank you Alicia!!) while Simon took a nice long nap in his bed.
Carol our nurse and new best friend is sitting here shooting the poop with us and just informed us that the lipids are in fact fat drawn from Soy. Not the Crisco can that I thought but close to it. I swear to god that's just what it looks like.
My hope now is that we're done with major interventions and are in for a long but steady recovery with no bumps but simple days of napping, reading, taking short walks, smiling, the occasional giggle and hitting new developmental milestones (hello...turning pages in a book!)
Ridiculous Sweetness: One of our nurses showed up today for her shift and stopped by to stay Hi. Yeah, not even his nurse and she came by to say hi. That's been happening a lot.
Anyway, she came in and said that she had a present for us. She handed over this awesome blanket that she'd made!!
It's orange with soft soft fleece on the inside. She said that sometimes nurses make blankets for babies that have been in the ICU for a while. She said that she thought that Simon hadn't been in THAT long but she wanted to give him something.
The love just continues to flow in and out and all around.

Laura