A Little Reflection

Deciding not to go the transplantation route and talking more with the doctors about considering palliative care feels liberating in some way, tonight at least. It feels like we now have a little more leeway in deciding what we want to happen with him. It's like the pressure is off somehow and is making space for other possibilities. Our focus isn't on "go, go, go! Get better quickly because the clock is ticking".

The appeal of the transplant option, to me anyway (Jaime), was that it was something to *DO* instead of just waiting. I was against it in the beginning and then was grateful when it got to be a closer option because it was an ACTION. Now I feel good that I know definitively whether or not it's really an option for us. It makes things more simple in some ways.

It feels like we've stepped out of the race and now can really surrender to what is supposed to happen and make space for miracles, whatever they look like. I now know that I don't need to save my 5 weeks of unpaid leave for a transplant possibility. I can start to use some now, after I talk to my boss, to be present for my son who may be dying or may be healing. Either way, I need to be there to help him as he begins to go down the fork in the road he will be on.

This whole experience has been the most intense "be in the moment" practice. Last night through this afternoon, I was in such deep despair that the room felt wobbly. Tonight I am filled with a little glow of hope that something is shifting- cosmically, in Simon's body, in our approach, something. Tonight something felt different and I am waiting to see what it is.

It's like I had to completely surrender to this experience and now I can let it flow instead of holding tightly to what I want. With the "action" option taken away, we now wait to see where Shimmy will take us instead of dragging him there.

Here he is tonight, feeling better than he has in a few days, with Auntie Alicia:

I (Laura) just came in from a brief moment of lying out in the back yard. Roxie came out and sat next to me knowing that this was time to be still and not necessarily time for the late night
wrestling that we've been fitting in to a very full day.
I lay looking up at the stars remembering that this is all so much bigger than just myself.
Arms up I let it be known that I surrender.
I just give it up.
I will do my best to ride this wave of love, and support, and pain, and unknowing.
I felt the night sky heard me and took my surrender in to her vastness.
Tonight I feel lighter than I have in a long time.
Tomorrow we will see.


Some one wrote to us:
"wow! what a powerful little soul. Look at all the good and loving intentions he's drawing from others. The undeniable power of sisterhood in the selfless giving of gifts. This generosity of spirit is the foundation for a better world. It seems to me that Simon is summoning the healing energy in everyone around him. His life, is already a wonderful example of love."
I love that last line. I love Jaime so much, I love Simon, I love our family. So much love.
Thank you

Coming to a Crossroads

After a very hard meeting with the Stanford doctor, we have decided with 99.9% certainty that we will not pursue a heart transplant for Simon. It's an experience that we wouldn't wish for Simon and wouldn't wish for our family, nuclear and extended.

There are many reasons, but the bottom line is that it is a life-long, trauma-filled, pain-filled process with no guarantee of outcome. Some of the most unappealing portions:

- almost guaranteed cognitive impairment (level unknown until after surgery)
- likely months long wait for a heart and Simon would have to be transferred to Stanford to be on the list which would mean Laura in Palo Alto and Jaime in Oakland, potentially for months.
- Lifelong medications without which he would die. Kids often hit adolescence and have normal rebellion and decide they WON'T take them. As the surgeon said, "they die".
-Some of the mandatory drugs frequently cause cancer
- Cardiac catheterization to do biopsies of the heart at least 12 times in the first year

We know that many of you may have very strong feelings about this, in all sorts of directions. We really aren't in a place to answer questions about why we decided what we did. Just know that this is the most difficult decision we have ever had to make and need love and support, regardless of how this goes.

This leaves us with two possible outcomes.
1. Simon stabilizes and stays on Milrinone in the ICU and gets better. He may get much better (not very likely at this point but what we want) or a little bit better and be very sick all his life.
2. Simon continues to get worse and we decide it's time for palliative care/hospice and have to say goodbye.

It's impossible to convey the level of grief we are feeling right now. We're unclear how long it will be until we know how this will go. We will continue to update you all as we have more information. We're still holding a flame of hope for his recovery and beginning the process of accepting that he may not stay with us for much longer.

Simon had a relatively great day today.

And so we end this post today with a ray of hope.

With all our love

Laura and Jaime

Rough Night

We went home around 9:30 last night and went to bed, exhausted at about 10 or 10:15. Roxie, our dog, woke up at about 1:30 and Laura went out and sat on the deck with her for a while because she couldn't sleep. (I slept thorough it) Then I woke up, wide awake at about 2:15 am. Roxie needed to be let out again, which isn't typical, and I just couldn't sleep. I had a very strong urge to call the hospital but tried to sleep. At about 3 am we decided to call just to check in.

Every other time we've called at night before we go to bed or first thing in the morning, they say, "he's just been sleeping- he maybe needed his pacifier once or twice, but otherwise slept". Ashley, his night nurse, said that actually he'd had a pretty rough night and had been throwing up continuously starting at around 1:30 am (also unusual) but had just fallen asleep. We asked her to call us the next time he woke up and then cried and talked until about 4, when we fell asleep again and no one called us so we slept until about 6:30 am.


When we got here this morning, Ashley said they had tried to give him Tylenol and he puked it up. Then they had everyone hold him and try to soothe him, including Dr. Williams who was the ICU doc that admitted him. No dice. He finally did fall asleep but not easily. One of the nurses said, "he missed you" or something to that effect, which felt like a dagger to the heart. I'm not sure if we'll sleep here tonight or go home and have them call us if he wakes up miserable again.


He's okay this morning, but definitely more grouchy and clearly doesn't feel well and his stats aren't great.


We're trying to set up a meeting with the ICU attending, the Cardiology attending and social work to talk about our options. Whatever they are they don't seem good. We both feel like we did the first week we got here- like a truck ran over us and then backed up and did it again.


It's not likely that he would have a complete recovery, but we haven't heard that it's off the table. He seems to be getting worse, which is scary and sad and horrible. What we need is for him to stabilize and then get better. I really hope that's what happens.

Went to Stanford

We've just learned more than any parent should about heart transplants.

Now we have some very difficult decisions to start to think about.

This is truly horrible.

Simon is so full of life...

We will try to keep people up to date on the day to day but our process re: this decision when/if we have to make it is likely to be private.

Thank you all for all your continuing love, support, energy, joy, hugs, food, dog walks, emails, comments, calls, smiles and thoughts. Thank you for all of it. We couldn't have made it nearly this far without it nor would we be able to go the rest of the way of this journey without you.

Taking a Turn

When Laura got to the hospital this morning and they did rounds at about 8:30 am, they had some labs back. The most dramatic information was that his BNP, which measures the hormone released when the heart is in failure, was about 2800-2900. In normal hearts, it's 100. Last week, it was 1100.

We will be meeting with Dr. Clifford Chin, a transplant doctor at Stanford, this afternoon at 1:30 pm. Our cardiologist called him and they got us in today. They're not necessarily saying that we're needing a transplant, but he's definitely getting worse and it's on the table.

The thing that we're looking for over the next couple of days is for Simon's symptoms to lessen. They've upped his Milrinone and put him on IV diuretics to help ease the load. We got to see xrays from a week ago compared to this morning, and his heart is considerably more dilated, even to the untrained eye.

We're just in a 2-3 day holding pattern. Our 2 options seem to be a) back on Milrinone, stable here or b) moving more quickly towards a transfer to Stanford and getting on a transplant list. It is possible to stay on Milrinone for months and then get better.

Stay tuned...

Some Adorable Pics to Lighten The Mood

This little Piggy is trying to eat his way out

Simon had a few too many drinks after a long day at the office

(One of his nurses, Sara, made this onesie for him!)

Mamaw and Shimmy, making googly eyes

Simon, putting his hand on Jaime's during sleep

This video is Simon on Sept 2nd playing his new favorite game, "Hair"

http://www.youtube.com/v/Vjq7CiIsQTw

Rough Road

I may start dreading these weekly family conferences.

Not because there are any real surprises but because there are often things spoken out loud that, when I'm going feeding to feeding with Simon, I don't keep so much in the front of my mind.

Turns out that while we've been told that there hasn't been "much change" with his Echo cardiograms, that the "much", in fact, has been a trend towards not getting better versus getting better. His heart has slowly been getting more and more dilated and although the ejection fraction has improved a tiny bit the fact that it's getting bigger means that his heart is getting sicker. While this is not an emergency it's not a good sign for complete recovery. It also means that we should begin to prepare for the *possibility* of a transplant.

Dr Rosenfeld has put Jaime and I in touch with Dr Rosenthal at Stanford for a preliminary meeting about transplants. Hunkypants (Rosenfeld) said that we're not that much closer to needing to get on the list but he'd rather we have the information in our heads than not. Really in his mind, a transplant was never completely taken off the table to begin with.

Simon has been gaining weight but they'd like to see him gain more so we're upping his fortifier again and hoping he'll tolerate it. So far so good and he hasn't thrown up the bovine laced breastmilk yet. Holy cow does that stuff stink- it's really no wonder that his farts are even that much more potent and that those videos of father's passing out or wearing gas masks while changing their babies are making so much more sense to me now.

Jaime had to leave shortly after the family conference to get to work and that sucked, so if anyone wants to buy us a winning lottery ticket I wouldn't say no.

It's still so hard to reconcile this amazing little baby that's reaching and grabbing for things with increasing dexterity, talking up a storm, showing preferences for certain books and toys, and bestowing the most amazing smiles, with the test results that say that Simon Fitch-Jenett, medical record # 916792, is in heart failure and after almost 5 weeks has not improved at all and in fact gotten worse.

I don't understand it.

I had a really good cry this morning and now am back to the nap-to-nap rhythm of the day.
The short term goals for the next week are to wean him off the Milrinone, get him up to his maximum dose on Analapril (one of his take home meds), observe him for an additional week and if all that goes with out a hitch, think about sending us home. That's not to say that he's better in any way but that we can at least be at home as we head into the longer term (3-6 month) observation period. That means that if everything is PICTURE PERFECT we can maybe look at going home in 2 weeks. A frightening silver lining around all the transplant talk.
I am heart heavy. Kind of an ironic saying given what's happening to our little boy.

Jaime speaking:
Wow. Leaving Laura after the family meeting at the hospital and going right into a work meeting that was already running was brutal. Coming back to the hospital this evening was also really hard b/c Simon is definitely breathing harder. It's so scary and feels like we're back to square 1 in some ways. I just have flashbacks of holding him that night while he was panting and gasping and staring me right in the eyes, looking terrified and there wasn't anything I could do.

I had another episode like that tonight a little when he couldn't breathe b/c he had a bunch of snot and needed to be suctioned. It was a terrible cycle that he couldn't breathe through his nose so he couldn't go to sleep with his pacifier, which upset him more, which made it harder to breathe, which make me freak out. Laura wasn't in the room (she was grabbing a few bites of dinner in the conference room down the hall) and I hadn't been with him all day so I wasn't sure if he was breathing a lot harder than before or just a little. I was feeling a little panicky and our nurse (a float we'd never had) wasn't near by. I kept saying I was worried about his breathing and wondering out loud if we should get a doctor and she kept saying he was fine and I wanted to punch her. He hadn't breathed that hard since we first came in. I'm NOT into having new nurses at this point.

I finally had to put him down and got her to suction his nose. which pissed him off in the extreme and made me wonder if he was going to go off the charts and then he settled down. I was shaking almost the whole time.

I don't realize how much I'm lulled into a somewhat false sense of security and peace when he's acting like a normal baby. Maybe that's just good coping- I'm in the moment. When he's good, I'm good and not really worried. When he's not doing so well, I'm vigilant. I just know that vigilance will be a double edged sword if/when we go home.

Laura writes a few hours later:
Theresa, Shimmy's nurse tonight, was talking to us about her children, the youngest of which was born just a few weeks before Simon. I asked to try her stethoscope as it was one of the ones that was recommended to us for when we go home (we have to listen and count heart beats before administering one of his drugs). The free one that they gave us is kind of crappy and we were told that investing in a hospital grade one for our situation would be more than worth it). When I commented to Jaime that she had the exact one that had been recommended to us, Theresa said "here, you try it and then you keep it. I have more at home".
She just gifted us with a very expensive piece of equipment. Top of the line, perfectly suited to little Shimmy. We also learned that she has more milk than Berkeley Farms and is more than likely supplying Simon with some of his banked breastmilk.
I don't quite understand it, this whole situation. The hell of it and then the moments of graciousness and beauty. It's all more than a little overwhelming, confusing, horrific, and beautiful.

More Questions More Love

So, no real answers from yesterday and Simon's still a little "off". His chest x-ray didn't show any new concerns and they haven't really seen his numbers climb to great proportions he's just still breathing harder with his heart rate in the upper range of acceptable.
Acceptable, to whom is my question? Both Dianne and I are a little more exhausted today than other days knowing that something isn't quite right but we can't tell what and the medical folks here can only put it on their radar since there's no real action to take.
It could also just be that at 5 months Shimmy is going to start teething any minute and/or getting ready for a growth spurt. Or, he's in greater heart failure. His Echo also showed no real change, either way so there's just no real telling what's going on.
He's just been a tad more fussy today with a slightly higher temp but not quite in the "fever" realm. The one thing they are doing is upping his medications to suit his new weight. We'll see in the next 24 hours if that makes a difference.
Aaargh. It's almost harder than when there's something clearly wrong. Almost... but thank you to whomever for it not being something clearly wrong and perhaps just the 5 month old fussies.
Yup, Simon turns 5 months old September 9th. He's also put on 2 pounds and 12 ounces since we've arrived here. That's quite a bit considering that he came in at 11.0 and then lost a bunch of weight within the first week.
That's my little porker.
On the "more love" note, we got a special delivery of balloons and a mirror toy from the farther reaches of our family. Jaime's stepsister's husband's parents sent us the sweetest email and delivery today. We met and bonded with them at Meredyth and Jamison's wedding last year and had kept in sporadic touch immediately after the wedding. When Simon was born our announcement and subsequent notice of our medical issue was sent out by Jaime's email (which unfortunately reads as spam sometimes) so they didn't get it.
As soon as they heard via the family grapevine they emailed and sent sweetness. Read above- they're Jaime's stepsister's husband's parents. Too sweet.
It's moments like that, along with the cooing and smiling that try and match the other thousand that are heavy and hard. Some days the latter win out. I think today is a close call.
Love to all

Laura

The Continuing Bounty and Roller Coaster Ride

Today has been quite a mix with some bumps in the road and then the continuing tsunami of love and support.

I arrived this morning to find Shimmy asleep peacefully for his early morning nap. The timing was just right in that I got to pump while he stayed asleep and then woke up for some snuggling and playing before his feeding. We had to dole out my breastmilk over the last 24 hours (even halving it with formula) because the Breastmilk bank was closed over Labor Day and there wasn't an order put in in time for the extra. Since I can't keep up with what they're gavaging him these days they were all set to start him on straight formula but I finagled a middle ground where they would wait for me to pump and then mix my breastmilk with the formula so that he at least got a mix and didn't have to deal with learning to digest straight formula during this time. The balance worked out perfectly, even overnight when I wasn't there to pump, until this morning when I got to the Hospital again and could pump enough again to last us until the banked milk came in for the 3pm feeding.

As we were settling in to our morning routine there was a little tickle in the back of my brain that Shimmy was just a little more fussy than he'd been for the last couple of days but wasn't quite something to speak out loud just yet. In addition, he didn't nurse at the 9am feeding but that's not unusual. When I got back from my break this morning and Dianne mentioned that he seemed to be more fussy and hadn't slept as peacefully as he'd been doing, the tickle became more of a magnifying glass and when Simon didn't nurse again at the 12 o'clock and was breathing harder during the following nap I was concerned. While he slept for his typical 2 hours it was not the usual as of late deep restful sleep but more of a twitchy, labored breathing sleep without the drop in heart rate that we've been seeing for the last 4 or so days. By 4:30 when he was ready to wake up I was ready to have a doctor look at him. I needed to step out for a pee break and to stuff some food down, while I was out one of his docs actually came and sat with me letting me know that he'd looked in on him and he seemed just fine.

When I got back in with Dianne, Simon was still breathing hard and I was surprised given what the Doc had said. Dianne let me know that it was a very brief visit so I asked "did he listen to his breathing?" She said No. I said "did he put a stethoscope on him at all?" She shook her head no and that's when I said it didn't count and went on a doctor hunt.

Carol, bless her heart, saw the look in my eye and heard the tone in my voice and got the Fellow on call right away. Jubilee came by within minutes and did a thorough examination of Simon and promptly ordered a chest x-ray to check for fluid around the heart and lungs. We're still waiting for the results and Shimmy's not too uncomfortable or fussy, he's just clearly not quite where he was yesterday and not in a good way either.

After last Tuesday, I'm not fucking around anymore when something doesn't seem right. It's a fine line between not wanting to be a bother or high maintenance parent for the very busy and wonderful folks here AND feeling that Mama Bear force inside and knowing that I would do anything for this little man.

Then comes the bounty...

This evening we were planning on defrosting some frozen lasagna for dinner and just as I was heading out to get it, two folks came by the curtain, neither of whom Jaime nor I recognized. However, they were clearly here to see us (Visitor passes have the patients name on them).

Turns out that they are a couple and one is part of Jaime's online"Other Mother" listserve (so we'd never met them facet to face) and the other was a student's of Dianne's at New College. They had read about us on the listserv when Jaime posted and then Dianne sent out an email to her former students and they put 2 and 2 together. They have 11 week old twins and still managed to bring us the most plentiful dinner with snacks included for another time. Amazing.

Amidst all the insanity, trauma, fear, and pain, there has been such grace. Jaime and my gratitude to you all is ginormous.

Thank you. Thank you. Thank you.

X Ray of Simon's Heart

We just finally got a copy of the DVD that has the image taken at the ER at John Muir. As you can see, his heart takes up a HUGE part of his chest cavity.

Simon's X Ray

Normal Chest X Ray

A Good Day!

Dr. Hanson, head of the ICU, just came by to check on Simon. When he saw how happy and smiley he was and we reported all his new developmental milestones he said, "Honestly, that's more important to us than what the Echo shows. Obviously *something* is working".

Having a great today with a baby happier that we've ever known him to be. I think now, post Staph, he's feeling better than he has felt in months. We're going to have another Echo on Tuesday and they'll look at weaning the Milrinone so he can be back on all oral meds.