Another Good Day For Shimmy

Shimmy had another good night last night and a good day today. He was super alert and chipper and hardly slept, but seemed in good spirits so we aren't too worried. He slept like a log yesterday, so maybe he's just balancing things out.

He's starting on some formula mixed with breastmilk tonight. We have our fingers crossed that it doesn't make him puke because he hardly threw up today. He may start on his new drug, Coreg, tomorrow. They're playing around with levels on some of his other meds (Milrinone and Enalopril) so we'll see how this all goes and if it will really happen tomorrow.

Today was a good day for Shimmy but I feel wiped out and crabby, probably because he didn't sleep so we didn't really get any down time. I had a good week at work last week but I'm definitely tired. It's been nice, honestly, to have time in the real world to balance the craziness. I think shifting gears is hard sometimes, but I'm glad to be working. I think it's harder for Laura sometimes because she doesn't have any enforced breaks from the hospital. I know it's hard for me to get out, even just on the weekend. We've been talking about how to make it easier for her to get out and feel good about it...
Laura's college friends Maia and Hannah came by today which was sweet. That would be #102 & 103. Amazing.

Simon with Mommy's Hallelujah tattoo

Loving his Auntie Joan, Auntie Dre, but more so Auntie Joan's Hat.

Rockin' it

Shimmy with Dre giving a shout out to all his 'peeps'

Simon caught on camera with his newest lady-love Auntie Maia from Boston.

FYI 1) With Cold & Flu season coming please think about your exposure as well as whether or not you have symptoms. Both are just as important. I.E. if you have contact with lots of folks (many kids, large groups of people, etc) you may not have symptoms but may in fact be transmitting.

2) For those of you that have brought us food in your own personal containers/dishes, they are in a box outside of our door at 702 and 1/2 Rand. Let us know if you're coming by the hospital and want us to bring them in that day. Oh yeah, THANK YOU. Full bellies, full hearts.

Delicious Sweetness Over the Last Day

Good lord it feels better to have a good day in the ICU than a bad one. There's not much like a bad day in the ICU. No puking last night on the 24 hour feed and he slept through the whole night! Looking much better today, more chill breathing, etc. I think part of it is that they switched his NG tube to the other side

The sweetness..let's see...

Starting with tonight- friends brought us Shabbat Dinner complete with Chicken Pot Pie, challah, grape juice and candles.

Another friend brought a 2 pound tub of red vines, not even knowing that those are Laura's FAVORITES plus trashy magazines and new pacifiers.

Another friend brought his teddy bear, Boo, that was his special stuffed animal when he was a kid for Simon to have while he's here and his girlfriend brought the squares people made at our shower, now sewed into a prayer flag type rig that we can hang up in our space here.

His Great Cousin Sol from Canada sent a Canadian Mounty Beaver Doll.

Carol, our regular evening nurse, brought in a bag for us to have a "date night" that had all sorts of sassy things including chocolate sauce, a tart, chocolate covered chili spiced mango and her very racy naughty boots to borrow. I think I'll do a little sashay through the Annex tomorrow night when she's back on.

Simon is really close to rolling over. Laura and her Mom and my Mom had him playing on a blanket on the floor and he just swung back and forth, side to side. Soon!

Laura also said that today he was really into looking out the window at the cars and people passing by. I guess he can see that far now!

He's been sleeping since I got here tonight, but I'll take that 100x over his being awake and in distress. God, that's horrible.

Much love to everyone. Tomorrow is another day and hopefully a good one!

9:42pm- The little man is awake after a long 5 hour nap that we hoped would just be an exceptionally long night's sleep. No such luck. His circadian rhythm is way off right now but I'd rather he sleep when he's tired than not. Jaime's reading him "Good Night Moon" and I'm hoping that will give Shimmy some good ideas. Alas he looks just pleased as punch to be gnawing on the pages instead of taking the message to heart (hah).
It almost feels normal and just typical baby sleep stuff right now. He had such a solid night last night, I'm still really holding on to that for tonight as well. If he can manage to hang in there GI wise for another 24 hours (till tomorrow night) then the plan will be to start mixing the breastmilk with formula so we can really up his caloric intake. Aside from the heart medication stabilization, weight gain is something that are going to get more aggressive about. It's been an incredible journey to this point and I have to say that I'm feeling really at peace with moving away from the breastmilk/nursing attachment and more toward the "lets get some meat on those bones and around that heart" place.
Turns out that the fabulous weight gain that we thought we had over the last three days was actually some mistaken weights what with his new paraphernalia (eg his halter was on when they weighed him yesterday- derr). I'm still pumping and working on keeping my milk supply up holding on to that connection even without nursing and while it's hard I think I'm going to keep going as long as I can squeeze out even a teaspoon to add to his rice cereal. Yesterday I was almost ready to give up. Pumping is hard. Pumping sucks.
Simon still getting my breastmilk is worth it right now.
Visitor 100 and 101 were here today. Jasmine and Nathan- Congratulations!!! And visitors 1-99, thank you too.
Here's to a good weekend and coming week.
Night Night.

Great night, Great day

Simon had a great night's sleep last night, didn't puke and had a great day with Laura today. We'll write more later, but just wanted to let folks know it's not so scary right now. What a difference a day makes...jeez.

Another bit of rough road

Here we are again with another really rough day. Simon had a tough night with waking and vomiting at 1am and not getting back to sleep for a couple of hours and then a repeat performance at 7am.

Starting at 9 we went back to the three hour feeds of 100ml and he took that really well with just a little bit of retching but not losing any volume. He took an hour and a half nap right after and I thought we were in for a good day. Sadly enough things just went downhill from there. Not a steep incline but downhill. We learned that Simon's BNP has increased (about 1000 points) instead of the slow but steady decline we were hoping for, he was breathing harder, and at the 12pm feed he vomited up quite a bit of it.

Dr Rosenfeld said that it's not so much the # itself that we're worried about week to week but what we're looking for now are trends that fall in the 4-6 week range. Simon's only 2 weeks into this new regiment of medication so while it's not what we'd like to see it's also not anything that the doctors here are interested in acting on. I hear the words but my heart still feels like it all of a sudden is made of lead.
Although now (four hours later) we're talking about putting him on another strong heart med Coreg that one Cardiologist has had success with but hasn't really been tested on babies as young as Simon. The unfortunate trend on Milrinone is that Simon's heart rate is creeping up. Not drastically but it is. Simon got an NG break after the 12pm feed when we pulled it out and slept for four and a half hours and was happy as a clam until we had to put it back in for his next feeding. He threw up again and both Jaime and I as well as the team feel like it's time for one last ditch effort (24 hour feeding with a lot less each hour) before we go to an NJ tube and take his stomach out of the equation completely. That also means putting splints on his arms so that there's no chance that he could grab it.
For my sweet beautiful book reading, pacifier mastering, starting to wave goodbye and hello to people boy, my heart is breaking.
I don't quite understand what's happening but we're back at the point where they've asked us to have in his chart our wishes in case of emergency. They keep saying it's not because they're imagining something happening but they want it in there so just in case Jaime and I don't have to make a decision in the moment over the weekend when our regular doctors aren't here. It's completely unreal to have to verbalize once again essentially a DNR for my son. It's insanity. I've had some really good cries today with my mom, alone in the car, and in the hallway when I just couldn't be there for another procedure that was pissing off Simon (just changing the dressing on his face and his Broviac).
I don't know where we go from here. Shimmy is so beautiful sleeping in Jaime's arms. You can't tell that his heart is failing. He is perfect and so much love in such a small package.
Thank you for reading, thank you for leaving comments, thank you for being connected to this amazing being.
Thank you.

Laura

Tinkering

So Dr Newman just came by to check on Simon and talked to us so sweetly about how she sees our family and our care for Little Shimmy. She gave some wonderful advice about not getting stuck on the details as we tinker but to really be with him in each moment. For me it's the balance between being able to do that and still focusing and advocating for Simon throughout the day for quality of life.

She also mentioned again how sucking and swallowing is really hard work when you're doing them together. He's still very oral and can do one or the other, but put the two together and he's got a serious aversion (certain people and you know who you are...should please refrain from commenting on the previous sentences). He'll suck on his pacifier and swallow some rice cereal but won't do both at the boob. I got it tonight when he was really interested in a bottle of milk but only for gnawing and then equally excited to get a spoonful of rice cereal. However the 30 minutes that I offered him the boob when he should have been most hungry he was shaking his head fairly emphatically 'No I don't want that'.

My job right now is to let go of the intense desire to want to nurse him and know that I can offer him comfort in other ways. Dr Newman said he will write his own story and right now it's not about nursing for comfort. He does other things for comfort and some of them are even things that only I can provide. Speaking of, Simon did his first double take when Jaime arrived tonight. It was amazing to see. He was in his Mamaw's arms (Jaime's mom) and when Jaime walked in and sat down in front of him he turned his head from the book that he was reading, glanced at Jaime, went back to his book and then realized who he had just seen and turned back for a good long eye contact session with his Mama. It was a beautiful thing.

From a more medical front, he's still gagging and heaving some around feeding times but not really losing any volume which is great. He put on 80 grams this morning (about 2.5+ ounces) and seemed to do well with the overnight feeding making it through 8.5 of the 10 hours before waking up to puke a little. We're still on %100 breastmilk and have put on over three ounces over the last three days. Go Gordo!

We're still concerned about the stomach upset and considering an NJ tube versus the NG but not sure about what it would mean for his quality of life (really needing to take precautions that he not pull it out including mittens for the little man and/or even splints so he can't bend his arms to get to his face to pull the tube out). The GI doc made a point of asking how active he was and when I replied "very" she said that it was likely that he would need mittens and/or arm splints. Not my first choice for the little boy that just worked out getting his pacifier back into his own mouth. We're not in any rush so we're holding off on making a decision about that and seeing if he can settle some. The difference is that an NJ tube bypasses the stomach and delivers food right to the small intestines where it's immediately absorbed and since breast milk (or most liquids really) don't need to be broken down it's just that much easier on his body.

We know that we're in for a long haul and I'm still figuring out how to manage the 15 hour days with out frying to crisp. It's challenging. I'm working on it. I did manage to take three separate breaks today and get outside for almost an hour at a time. Jaime and I are still loving each other so strong and as for little Shimmy, he is doing exactly what he needs to, just taking it all in, drawing love and light to him. Even Dr Newman said that stopping by to see Simon was a highlight of her day. I love that he does that for folks. Love it.

Simon had his 99th visitor tonight with his Uncle J (Jamison) visiting. Simon was way into his uncle's sense of style as illustrated by the picture below.

Now the question is who will be lucky 100.

Love and gratitude to all of you out there.

Laura

One more Video

Here's Shimmy getting some grub from his MM (Mommies Mommy) Eileen.

http://www.youtube.com/watch?v=ODRh0DvwIqI

Big Picture Little Picture

Jaime and I got to go home early last night as the little man fell asleep around 7:30 and we figured (correctly) that he was probably down for the night. We made the mistake of watching some TV and while we got home around 9:30 somehow we didn't' get into bed until 11.

Stupid. I was already feeling tired today and it didn't help that when I arrived I heard that Simon's Broviac line wasn't working for blood draws and they had to poke him just before I arrived. I couldn't believe we were back to the poking times. I couldn't even bear to ask how it went knowing full well that it was terrible.

The rest of the morning was rough going too with Simon being more fussy and me trying to talk to doctor after doctor about tweaking his care. It was just a little more exhausting than usual. What was great was that our day nurse got the broviac drawing blood again and Simon didn't vomit at all today. He also put on 20 grams from the day before which was great.

Simon is still on a nursing strike which breaks my heart and contributes to the feeling of helplessness. He loves his pacifier though. Little Shit. Who knew I'd be insanely jealous of a pacifier?

I don't mean that but it's so hard not to be able to nurse him or even just offer him comfort in that way. It's not unusual for a five month old baby to go on a "nursing strike" it's just that much harder under these circumstances and I don't have any control over it since he HAS to get nourishment and can't wait to get hungry like a healthy baby would at home.

Tomorrow though the team wants to see how we can get him back on the boob both for nourishment as well as to try and challenge him a little given how well he seems to be doing.

He's going to get a 10 hour continuous feed during sleeping time and then just get two bolus feeds at 10am and 5pm during the day. That means that he has 7 hours to get hungry and work it out himself (with the boob right there for the taking).

We'll see.

The other great bit of the day was some amazing memory work on my part (not easy given my history). Dr Patel came by late in the evening and I asked him if he'd seen the Echo from earlier in the day since Dr Hunkypants hadn't been by to give us a report (after telling us that he was going to look at it and then come back and talk to us about it- what like he's busy or something?).

Dr Patel called Dr Rosenfeld right there on his cell phone (they're buddies- I caught them having lunch together the other day, sharing a chicken Quesadilla and fries- too cute) and got a quick report.

I also let him know that they were planning on poking Simon again later tonight for Coags, a test that for some reason didn't get done this morning when they poked him because of his Broviac not working. I reminded him that his broviac was working again and that we had started Cumiden again in the last 48 hours. He looked somewhat surprised and said "then why do we need to poke him tonight?" Right then and there he canceled that order and canceled the one for the Cumiden tonight so that we could get a better read for tomorrow. I'm sure I'm messing some of the medical details up but the jist is that I was really glad to have been there and asking the right questions to help Shimmy have to deal with one less procedure.
Almost made up for the lack of nursing.

As for the Echo, no real changes, no further deterioration, and maybe even a hairline bit of improvement. I'll take it.

Tomorrow I must get out and take a break. It's hard. It doesn't feel good while I'm doing it. It doesn't even feel good after I've done it. Why do it then? Beats me but people I love and trust keep telling me to do it.

One last thing: If you're leaving a comment and we've never met, we'd love to know how you came to us. We like to talk to Shimmy about how wide the web is.

Many many thanks.

Laura

Here's Simon eating more Rice Cereal. Mmmm Mmmm Good

Umm maybe not so good

Eileen giving our Nurse Carol a private Pilates Lesson (that's coming right off our hospital bill)

Another Mellow Day

My first day back at work was a little overwhelming in the morning but felt better by the afternoon. Laura said Simon's morning was a bit rough too. He was puking pretty hard and they finally figured out that his NG tube was in too far. Once they fixed it, it seemed to be a fairly smooth day. We've also decided to give Simon only the banked breastmilk until Laura can clear the Vicodin and Ibuprofin from her system. We realized that that may have been contributing to his stomach upset too.

Haven't had our fabulous, kooky, bathing-obsessed nurse Carol in a few days and Simon is FILTHY! Carol needs to come back on shift and scrub that baby from head to toe :-)

Oh, and mystery solved. My friend Cherry was the Trader Joe's elf! *Mwah*

Trader Joe's Elves?

The Trader Joe's elves came tonight! We just got home and someone clearly stocked our refrigerator and freezer. Who was it? Fess up! We want to thank you properly!

Had a mellow day today- all about grandparents. Had all my parents visit today and Laura's mom came in around 5 and I (Jaime) got to clean the house a bit before starting work again. Feels much better.

A few photos from today:

Us on a walk

Grandma Nola holding the little man

Trying to eat a toy from Liz. Mmmmm dinosaur eggs.Reading the sweet letter from his Great Uncle Barry

Lightening the Load

We just had a visit from Dr Patel, one of Shimmy's Cardiologists, and we worked out a slight change in his regiment. Simon's been throwing up more and we've been thinking that it's likely because of the iron that we've been giving him two times a day. It's an oral medicine and the nurses keep telling us that it's hard on the stomach and even few adults tolerate it well. Simon's puking seems to be clustered around the morning and evening feeds with some spit up happening in between but the significant up-chucks are right around the iron-in-the-stomach times. Dr Patel explained that along with the EPO shots that he's getting there's always the iron supplement that goes along with it but that maybe we could stop both of those.
WooooHoooo!! Those are the most difficult stresses on Shimmy right now. A shot twice a week and iron in his stomach off the table :-) I like it.
We're also moving from Simon getting his Lasix (a diuretic) through his IV to giving it orally three times a day. The less that's going through his IV the better. Dr Patel said that next week we may even start to let Shimmy get a little hungry and see if we can get him back on the boob for nourishment instead of just comfort. He's really only been nursing maybe once a day and only really in his sleep which I think is about instinct more than anything.
I do want to write something specific about how in the last week or so I've felt an even greater partnership with the folks here at CHO. During the first month I would hear from them "you know him better than anyone so let us know what's going on." I definitely heard them but thought yeah yeah you're saying that but what could I possibly have to add to his healing at this time given how sick he is. I know, I know. That's just me feeling inadequate and helpless about this whole thing and I've always been an important part of is recovery.In the last couple of weeks it's really felt like that much more of a partnership with folks here. Nurses really understand that we've been trained and can do a lot of basic nursing care for him and the doctors really do want to hear our observations about him given that we're here with him 15 hours out of every day. We can say that his vomiting seems to be clustered around a specific time. We can report that he's sleeping more but that his sleeping is restful and not fitful. We can say that he tolerates his feeding better over 45 minutes or an hour instead of 20 or 30 minutes. AND, they take all of that into account as they're prescribing or discontinuing medications for him.
It feels good.
Love to All

More pics from another solid day

Having a pretty mellow Sunday morning. Simon was very clever and got his NG tube out this morning so we had to put it back in. It was time for a new one anyway, so while it wasn't fun for him to have it replaced, it was going to have to happen soon. Laura's Mom comes in today for a week which is great timing as I'm going back to work tomorrow and my Mom's schedule is picking up now that her academic year is starting (she's a professor). These next few months are going to be very interesting trying to balance everything.

(Anyone available Monday Sept 22nd to spend some time with Laura/Simon? My Mom will have to work all day and I'd love to get a little coverage).

I'm freaking out about our house looking a bit like a disaster zone. It's just a matter of putting things back in their place- our dining room table is full of folded clean laundry (thanks for doing the laundry, Mom!), there are about 15 glass bottles from Simon's milk in the kitchen, etc. Spending a hour or two at home will probably help me feel a little more settled before I jump back in the work river. It's so intense to shift gears back and forth. I've been really grumpy the last day- once I'm doing both (work and hospital) it's fine, but it's the gearing up that is really stressful.

Off to snuggle the baby to sleep so Laura can pump...

A little rice cereal
Adorable pair, no?
You talking to me?
I LOVE grabbing Mama's nose!
A little sweet snuggle time