Saturday, August 16, 2008

Ahhhh Saturday

Lots of visitors today. Simon mostly slept and ate today- as Laura said, it's like he's regressed a few months. We're going to have a Child Life Specialist come by next week- they can tell us what milestones/skills he might be missing while he's here and how we can help him catch up. He's still dependent on his heart medication and essentially still in heart failure but stable. Every day that he's stable is a day towards recovery.

Another amazing of my coworkers came by today, which was very sweet. She said she was talking to her friend Michelle about what her (my coworker's) plans were for the weekend. She mentioned that she was going to Children's to see her coworker's baby, Simon. Michelle said, "wait! Simon with 2 mommies, Laura and Jaime"? She works at a church in Danville and evidently the sister of one of our friends (we haven't figured out who yet) called in to put us on the prayer list for this Sunday. Michelle took that call!

We really are connected to everyone through this little boy.

Okay, another really funny and not really funny story, depending on what end (no pun intended) you might be on. Just met a mommy in the waiting room who is here 48 hours after she gave birth because her child...wait for it...has no butthole. I'm not kidding. If she seemed upset I wouldn't even be telling this story but she didn't seem super concerned. Laura and I had a good chuckle and then felt a little guilty, but...come on. What an awesome story that will be for that kid when he gets older. It totally trumps a weak heart.

Friday, August 15, 2008


I felt so defeated this afternoon. I felt overwhelmed by work, and trying to get out at 1 pm was nearly impossible. I made it out at 1:15 and left feeling like I couldn't imagine being able to balance this all and do any of it well. Laura had been at the hospital all night and I figured really needed a break and my summer interns were having their last day with us and we were doing a little celebration. I had a great cry in the car once I got into the garage. That alone time in the car driving from work to the hospital is good cry time. Then I'm done and can be here. I'm definitely an alone crier and the confined space of the car is good. I've even got my cry stoplight and cry song set. It's almost funny :-)

They've almost 100% ruled out metabolic stuff (had a few questions in the last couple of days, but they've mostly decided no). They may have to re-do his PICC line in the next day or so which sucks, but I knew they'd have to at some point. They've taken him down one more step on the Milrinone and are starting to wean him down from Heparin. So far so good.

One of our friends, Justyn, told us the sweetest story about her daughter Amira who is a little over a year. Amira loves to come over to our house and play with Roxie and likes to look at Simon. The last 2 weeks, evidently, she's been "talking" about us, even when they're not near our house, which she doesn't usually do. Mostly this involves saying "Woof woof" "ball" "wah" which means she wants to come to our house to play ball with Roxie and see Simon. Her parents haven't told her anything about what's going on with Simon...she's just been vibing him. It's pretty sweet and a little magic.

Simon is doing a little better each day, I think. He's certainly no worse which is really good. Less sweaty today, slept more, nurses are more hands off which feels better all around. Getting geared up for social time this weekend and some good break time with Laura, which we really need...

Thursday, August 14, 2008

Day 2 of Back to Work

So day 2 of work was pretty good. It's going to be really hard not to feel like I'm responsible for a full day's work in 5 hours. However, I can only do what I can do and while my job is really important to me, my family is more important. I brought some work home with me and haven't gotten to it and I'm really okay with that. I want to be at work when I'm at work and fully present when I'm here at the hospital.

I was saying to Laura that the highs and lows of this are unlike anything I've experienced except maybe all the drama in coming out, etc in my first year of college. Late in the afternoon/early evening yesterday we were freaking out about Simon getting warm and his heart rate being so high and then after we moved to bed 22, we were delirious with joy last night when we were trying to go to sleep. It's really a trip. In some ways I feel more alive- I'm feeling more extreme feelings than I ever normally do. I'm usually very even keeled and this is hard but it's also sort of like living on the East coast versus California. I'm having some pretty extreme emotion weather and it makes you stop and pay attention. In some twisted way I appreciate it.

The support just continues. Friends brought our garbage cans up to the street for us last night and we came home to an overflowing gift basket from one of my troupe mates. Someone else brought down our garbage cans tonight. I can't believe it's been almost 2 weeks and the love just keeps coming. I feel like there needs to be some award for "best community network" or something. Seriously. Simon's first birthday is going to be one mother of a party for all y'all.

I'm home by myself tonight and off to bed soon after I call to check on my fam. It's settling into a sort of weird normalish routine now- it feels like we're just raising our son in another place and I almost can't see all the wires and tubes attached. I go off to work and drop Laura at her "job" at the hospital in the morning. We bounce him and swaddle him to get him to sleep, he goes to the breast when he's's all just got an extra edge of anxiety because we're looking at a monitor for his vitals and we're doing it all in a 10 x 10 curtained off space with no control over noise or light (although it's much better in the Annex) and we have a nice lady who helps us here and there (our nurse).

I forget how adaptable I am until I'm doing insane things like this and they feel pretty normal after a really short period of time. Maybe it's just good coping skills but sometimes it feels like I should be more unsettled and fight somehow instead of just resigning myself to things being the way they are. I could probably be brainwashed really easily :-)

Okay, off to bed. Hugs and kisses all around.

Sticks, Stones and Breast milk

Today I felt like I had fire in my belly for the first time since all this mishegas started. All day yesterday Simon wasn't that interested in nursing. We learned that what they were fortifying his breast milk with (for extra calories) was in fact just formula powder. Well, we know that Simon does not take well to formula and after a wonderful conversation with Amrit, our midwife and lactation professional, we decided to try ask (or gently demand) that they stop adding bovine powder to his milk and that he'll no doubt be getting his extra calories from the extra nursing that they're saying that he can do (but won't do while he's having such wicked digestion issues with the fucking formula that they're adding to my breast milk...derrr). Who wants to eat when it feels like there's a rock in your stomach? (That's my stone reference)
There was some initial resistance to it and I got to practice my non-defensive communications skills with our fabulous but sometimes 'set in their ways' practitioners. Instead of needing to beat it into their heads (I was imagining holding a bat and swinging away- that's my stick reference) I waited calmly and talked with the resident, then with the Fellow, then the attending, and last but not least our primary cardiologist (both of them, Hunkypants & Newkhumet-the Cardiologist on call).
There was some concern about him not getting the calories that he needs but if he can nurse on demand AND he's not spitting up, which he was starting to do, then that's taken care of.
Huge thanks for Amrit, our midwife, lactation specialist, wise woman extraordinaire for not only giving me the info that I needed but also reminding me that I can partner with these amazing medical practitioners in getting what's best for Little Simon Lev. So we'll do this for a couple of days, make sure he's gaining weight and go from there. If my milk sits around for more than a few minutes outside of my body or Simon's it starts to separate and I can literally see the fatty goodness that he's getting with every feeding. Go Breast Milk!
And there you have it...Stones, Sticks, and Breast Milk.

I'll be staying the night in the ICU to be able to give the little man the boob on demand tonight and we'll see how it goes. A night with out Jaime- not so much fun. But, our days are going well and with my Dad and other folks showing up while Jaime's at work it's feels manageable.
I think we can hunker down now, make bed #22 home, and work some healing magic. The ICU was for saving his life and getting him stable. Now comes the work of getting better.
Love to all


Notes from Bed 22

(written mostly last night, posted this morning)

What a delightful end to a very rocky day. I’ll start with the good. We just got moved to the Annex which is a step down from the regular ICU. The scary part for me is that the nursing ratio is 3:1 versus 1:1. The fabulous part is that it’s quiet, we can control the lights so we can make it dark, we have a huge window with REAL LIGHT and about 1/3 more space than we had. We don’t have neighbors on either side so it feels like even more room. We keep saying we moved into the Ritz. It’s kind of sick how easily we adapted to life here and how incredible this curtained off 10 x 10 room feels like we could live here for a zillion years.

Today Simon was very extreme- very smiley and laughing for about 10 minutes at a time and then miserable for about 3 hours. Repeat. Our day nurse changed the dressing on his scalp IV and evidently it moved a tiny bit. His IV pumps kept alarming and they ended up having to x-ray him to see how much it moved. It was fine and they didn’t need to do anything else. I keep thinking about how he’s going to have 2 heads from all these x-rays. I think we’re up to 4 at this point. Thank god it’s not 1960 and they’ve figured out how to lower the dose…

He had an echo today and it showed no major change in the pumping function but other stuff looked a little better. They started weaning him down from Milrinone very slowly so he went from 1.0 to 0.9 units today. They want him to gain an ounce a day so they are feeding him more.

Dr. Hunkypants came by and it turns out he’s a chocoholic (he gave me a piece of chocolate!) so now I know how to keep him happy- Trader Joes chocolate aisle, here I come.

All day yesterday and today, his baseline heartrate and respirations have been at a much higher level than the last 8 days or so. All day his heartrate was in the 160s to 170s (it had been as low as 106 when he was sleeping before). This afternoon, he busted a major sweat and we were completely freaked out that he had a fever and an infection. However, five minutes after we moved to the annex, his rates have been dropping and right now he’s at 127. As Laura said, “Simon can heal here”. The other unit was so noisy and stressful with bright lights, loud alarms, suction, post op patients waking up, etc. This feels like heaven by comparison.

The extremes of him being the most smiley and laughing that he's been and then miserable and seeming like he's going to die from an infection/fast heartrate/etc are killing us. I keep telling him "No More Drama!"

My first day at work was actually managable. I ended up having to give a presentation to about 50 people that I thought I'd gotten out of, but it was really fine. It feels like 2 days in one, though, to do 1/3 of my day at work and 2/3 at the hospital. I can do this and we can do this.

Okay, off to start all over again.

p.s. If you come to visit, turn left instead of right, where the reception desk is, and go all the way to the window and we're on the right.

Tuesday, August 12, 2008

Another day...

Well, a bit more progress today. Simon is completely off oxygen and also now can breastfeed whenever he or Laura wants! He also is off one of the carriers for his IV so he only has one IV (the PICC line) with only 3 things going through it (Milrinone, Heparin and the carrier). He had much more alert time today and also squawkier time which is pretty normal.

Geraline, one of the nurses that hasn’t been his nurse but is often near us, had a dream about us all last night. In her dream, she was our personal nurse at home and she was going to have the great honor of giving Simon his first feeding. She got to go into a special room with a big throne like chair with lots of pillows and a very special bottle. She said it was SO vivid and we (including grandparents) were all in it. I told her she needs to start dreaming about a super strong heart, since today was the day he got to have unlimited feeding and she dreamed about his feeding last night. Pretty cool…

The doctors talked about weaning him down from IV Heparin (blood thinner) soon and maybe getting him on oral Cumidin soon. He’s off one of his diuretics and the other 2 are now oral since his new IV isn’t compatible with Heparin/Milrinone and the IV versions of the diuretics (kind of a blessing in some way, since it pushes him moving to more oral meds versus IV).

He’ll have another echo cardiogram on Thursday and then they'll decide whether or not to start weaning him from the Milrinone based on that. That process alone takes about 2 weeks.

Laura says: Today was the first day since Friday before last that the day felt somewhat familiar in terms of Shimmy and I having regular rhythms. He clearly wants to be at the boob for more than just nourishment and I am more than happy to have some soothing techniques back. Throughout though, Jaime has been the master rocker/napper and that’s been so great. I felt for the first time today that we’re back in some way to our regular times together. Simon spent several moments standing (with assistance) in my lap just looking out and enjoying the business of the ICU. He laughed, he smiled, we read a book. He got fussy when he was hungry. He fought going down for a nap…all familiar activities.
His heart rate and respirations have been a little elevated since he got off the oxygen but still within the normal range and when they shoot up because he’s upset, once he’s calm again they go back down. Not as much as we’d like but they do. Jaime and I can't help but feel worried about the #'s and hopefully tomorrow we'll hear that it's nothing to worry about or that it's something and here's what they're doing about it.
All the nurses and doctors keep telling us that it’s a good thing that he’s so vocal and fussy and letting us know he’s so over this. It’s the babies that just lie there and whimper that they really worry about. That is definitely NOT our little Shimmy. It’s sad to see all the leftover tape remnants but not as sad as when he had lines coming out of every limb and neck. Still fucking crazy that he has a line in his one of his scalp veins that threads down to his heart. Again…what?!!!
Slow and steady wins the race. Slow and steady. He’s more Yurtle the Turtle in his recovery now than the jackrabbit he seemed to be embodying during and just after his birth (First there was the five minute labor and delivery and then there were those feet of his).
Jaime heads back to work tomorrow and it feels a lot like when she went back after the first seven weeks with Simon. It was a hard adjustment for every one and we just have to be very care-full with how we handle this transition. Time together is so important. Any one wanting to visit the hospital between the hours of 8 and 2 is most welcome. Shimmy was awake and alert for most of the day so that Alli in the early afternoon and Anna in the early evening were both greeted with smiles. So dreamy.
Tomorrow is yet another day.
Amazing gratitude to all.

Small Victory

I forgot to mention that last night they took him completely off oxygen, so we have a small victory! One less thing attached to our little man.

I go back to work part time tomorrow. It feel so insane and like I've been gone for months. I'm planning to work from 8 am to 1 pm and then come to the hospital. It will be really hard to switch gears between three worlds- work, hospital and home with Laura at night. That said, I think it's for the best because I can't just sit in the hospital for 6 weeks even though I want to.

We just got the itemized cost of the ER visit just to John Muir (all covered by insurance). Just the visit there was $7000. I kind of can't wait to see the ICU itemized bill that our insurance better cover *100%* or I'll sic all our attorney friends on them. I'd sure hate to be the medical biller who has to go through Shimmy's chart aka the Tome.

Just going to shower and head back over there today for my last full weekday at the ICU. I'm totally going to miss it in a sick way. We have our chums that we greet every morning as we go to "work" and nice afternoon breaks in the cute neighborhood nearby. It's had brief moments of vacation like feeling when we have minutes lying in sun together or a nice snack outside a cute cafe. Now I'll be cramming everything into their little pockets instead of just rolling around in the misery of what's happening. Even my ICU time with my critically ill son will have to be scheduled and measured to some degree.

Not sure how this will all work in the long run, but we're every bit as scrappy as Shimmy so we'll make it happen- hopefully with grace and humor.

Monday, August 11, 2008

A Little Bumpy Today

Today was a bumpy day. Simon slept really well last night and then was a bit fussy this morning b/c we kept having to screw with him. He was scheduled to have his PICC line inserted and Laura was feeling a bit overwhelmed with assisting with that process so she went to the cafeteria to hang with her parents for a bit. I stayed with him while we waited for the nurse from the NICU to come by to assess him for the PICC insertion. He was not happy about having each arm, leg and head ultrasounded to look for veins. At one point they had to put a rubber band on his forehead to try to get the veins to pop up. I wanted to laugh and I wanted to cry. It was pretty absurd.

Of course it wasn’t easy and they ended up having to put the central line in through a vein in his SCALP. He got his first haircut here…they had to shave the area on the left side of his head and gave me the hair. We’ll put it in the scrapbook that may end up being bigger than his chart right now, which is in a full 2 inch 3 ring binder. Here is Simon's chart for 9 days:

While we were waiting for the PICC team to get ready, our nurse tried to draw blood from the IJ line and realized it was totally coming out. It took me and 3 nurses to deal with the situation which involved sterile gloves, trying to thread the line back in a bit, snipping the one suture left and a lot of wiggling. Simon eventually had the fantastic coping response to just go to sleep. I praised him mightily for that. I do it when there’s turbulence on an airplane and it works like a charm. Sometimes you just have to check out.

They eventually got the line in and I’m just praying that his sweaty little warthog head will hold the tape, etc that’s keeping it in place. That said, my mission for the day was accomplished- one less thing or one thing better than what he has. The damn IJ is gone and now he has a PICC. Hopefully they won’t have to re-do it anytime soon or if they do it will be even better than the one they have (ie, maybe in a limb next time instead of his head). This kid is going to have some ridiculous war stories.

Talked to Dr. Rosenfeld aka Dr. Hunkypants again today. He said we may start to try to wean him off the IV Milrinone next week. This is the biggest test so far because if he can’t be weaned from the IV Milrinone, he can’t go home and eventually we may have to decide if we want to do a heart transplant. When we asked for timeframes for when we’d need to start thinking about whether or not to make that decision, he said if he’s on Milrinone for 2 months or so and can’t be weaned off, we would need to think about transferring him to Stanford and putting him on the transplant list. That said, there is a perfectly healthy 6 year old patient he has who was here for months on Milrinone and recovered completely. This is all just about waiting and seeing. This is my ultimate challenge in just letting go and not being able to control anything.

Our goals right now are to avoid any complications like an infected line and to get him ready to get off Milrinone and onto oral Digoxin and Nalopril (?). Think good strong thoughts for his heart and immune system. We passed the extubation challenge with flying colors and this is a huge next step. The overarching idea is that at about 6 months we’ll have a pretty good idea of what we’re working with and what 30% Shimmy will fall into (a) complete recovery, b) partial recovery with some residual damage and c) no recovery- awful decisions to make). We’re still shooting for a) and would settle for b).

Did a tally last night of his visitors. Mr. Shimmy Lavage has now had 50, that’s right, *50* visitors in a little over a week. And that doesn’t count the folks that have showed up more than once or the folks that have been to our house as garden/ yard angels. Today friends who are moving to Canada stopped by with their packed truck before they drove out of town.

Chatted with a very sweet woman in the stairwell who asked about Simon (never seen/met her before- she’s seen our signs in the shared waiting room offering food). She has a 3 week old in the NICU with sleep apnea and they’re going home tomorrow (yea for them!!!). She has 5 kids and lives on a farm in some far away town. He husband is having to take off work to do the morning and evening feeds on their farm and her 2 older kids are staying with her mom. I know what we are going through is horrible, but mostly I think about how totally blessed we are.

Here’s a little tally of some of our many blessings:
Our house is literally 5 minutes from the hospital
We have a HUGE network of support
We have health insurance
We both know how to navigate the healthcare system
We can schmooze with our doctors about travel and private schools and religion
We speak English
We have 2 cars
99% of what the medical teams are telling us we understand and if we don’t, we know what to ask to clarify or where to get more information.
We have friends who are medical social workers who can help us deal with insurance/disability questions.
Our midwife came to see us to help us with lactation.
Our parents can take off work to come be with us
Our friend Reid moved 5 houses away a few weeks ago and can take care of Roxie
My work is flexible and letting me go back to work part time until we know more about what’s happening
Laura wasn’t scheduled to go back to work till November anyway
The director of Oncology/Hematology is a friend from the Dog Park AND the Executive Assistant to the CEO of the hospital is a friend.
GOD FORBID we have to think about transplantation and decide to do it, the hospital will be in the home town where I grew up and we can stay with my parents

For these and so many other things, I am thankful…

Sunday, August 10, 2008

Simon Laughs!!

Simon had a pretty ok night last night. He had some trouble sleeping but was calm for most of the night. We think he’s really coming down off his drugs from the intubation and given the fact that they didn’t really wean him, it really was cold turkey for him. Friday was really rough, yesterday better and for most of today he was either sleeping or chillin’ in somebody’s arms. We’re really getting the transfer down so that moving from one person to another is not so traumatic. This means that he can spend most of the day being held. He’s getting better with his “recreational” time at the boob and I feel so great that he’s getting that time with me, plus some extra booby juice. I’m getting some skin to skin with him plus the prolactyn for keeping up my milk supply. Pumping sucks. Breastfeeding is wonderful. Pumping sucks.

Jaime has been getting some amazing smiles and this evening after Simon got dinner and transferred to Jaime’s lap we got a full on chuckle! Simon is loving his Mama right now.

We’re just trying to settle into some kind of long term rhythm as we come to the beginning of week 2. Certainly the first week was high energy and moving at an incredible pace with the onset of things, intubation, extubation and these last couple of days with detox and the getting rid of some lines (his arterial line came out today and they’ve said that most they can replace his jugular line with a PICC line (most likely to his inside elbow) tomorrow. Dr Saaba (the cardiologist on this weekend) said that after a patient gets to Simon's place of being somewhat stable but not nearly well enough to leave the hospital, that's when it can be most difficult for the family. I get it. It felt a lot like a sprint for the last week. Now we're in for the marathon and pacing is the key.
It's so funny to have the olympics on as all of this is going on. Sometimes with Simon sleeping in one of our laps we'll turn them on with the sound off and just watch some amazing (and bizarre) competitions. I've never really gotten into them before but watching the swimming has been a treat while the air pistol competition just confused me.

I think Jaime and I are doing really well in terms of taking care of each other, trying to get some sleep (even though it's so hard to go home at night it makes us that much stronger during the day), remembering to reach out and touch each other, get a little kiss in here and there, go for a walk, hold hands, and be our full sad, silly, irreverent, communicative selves.
Having our people "show up" in such consistent ways has truly helped. Thank you all so much for the visits, the messages, the food, the emails, txt messages, comments left here, yard work, doggie care, and all the other ways that we feel the love. We've known that we have great community but holy crap!! This is abundance. It's sometimes hard to accept all of it. Hard but impossible not to in this crazy crazy time.