Heart Party

Today we went to a party. Childrens Hospital Oakland had a cardiac reunion party for kids that have had a cardiac related stay here. It was incredible. There were over a hundred families of all ages enjoying a bbq, clowns, live music, and bouncehouse just out in the courtyard where Shimmy and I normally take our walk. We were invited to come down and check it out a couple of days ago and Simon woke up from his second nap just in time for the festivities. It was incredible to see all these kid running around and know that each one of them went through either heart surgery, or aggressive medication treatments like Shimmy. We met families that spent 2 weeks in the PICU and families that spent 6 months here. It was amazing. I don't even think I can say more about it other than I feel even less alone and even more hopeful. The light shining from all those kids was just brilliant. It was even more exciting to think about coming to next year's reunion only we'll come from home instead of "upstairs". Yeah.

When we got back upstairs it was nap time again from all the excitement (and more puking). When we awoke it was photo shoot time with Simon's personal bard, Cody. Simon is clearly smitten.

Tomorrow is another day and we're upping the Little Man's calories once again. I'm hoping that he'll tolerate it and settle some with the up-chucks. Two of the recognized side effects from his new drug Coreg are nausea and lethargy. Lethargy would actually be a good thing for him right now. Nausea not so much. Everything else is relatively stable. The little man is off to Nod Land right now and Jaime and I are heading home. We're hoping for good night sleeps all around.

Here's a pic from Simon and Jaime's early morning nap. Too Cute.

Ashford and Simpson

Solid as a Rock....
Shimmy's been having some solid days here in the Annex and while there's been a little more spitting up today (just a smidge more noticeable) he's in great spirits, standing like tree, playing with his toes and napping regularly. We're really getting the hang of this schedule and while I still have one toe in the pool of uncertainty and fear, I'm mostly swimming in the lake of 'loving my days' with the little man.
We continue to make friends around the hospital on our daily strolls with Osiel in the cafeteria now giving Shimmy a daily wave from behind the fryalator, Tony and Nick at the Ambassadors desk and of course Esther from Security. It's nice to have a regular route. Today several nurses were in the cafeteria after a training and when we were doing our lap Simon just kept getting stopped for smiles and cooes. He really is a love magnet. Here he is working his charm on some of the nurses.
I'm still working through some of the loss around breastfeeding and lactation but our days are filled with arms reaching out for each other, neck nuzzles, and delicious smiles when waking from naps. It's also amazing to see him respond so distinctly to Jaime when she gets here from work. We are a family. Our baby boy lives at the hospital right now but that doesn't make us any less of a family. In fact I think somehow we're all feeling the bond stronger and more distinctly now because of it or in spite of it, or something...silver lining, lemonade out of lemons, blah blah blah. Here's Simon waking up from a nap. We didn't get a BNP number this week and I'm almost glad for that. It's just a number. I would like to know if we're on an upward or downward trend but I can wait another week. I'm trying to believe the doctors when they say it's really more about his symptoms than any test results. His symptoms are almost non-existent. He'll be breathing harder after some exertion (like trying to roll over and getting frustrated) and sometimes just breathing a little harder when he's excited. Also, he'll sometimes heave a little when there's too much stimulation or when he first sees me in the morning (I'm not taking it personally). The sweating has decreased quite a bit. It's all still a bit tenuous though. I'm just working on breathing.

Napping with Simon in my arms is such a delightful thing. I imagine that my heart spends sometime talking to his heart about staying calm and beating steady and slow. I imagine my breath calling to his. Reminding his lungs to go deep but remain relaxed. I love feeling and smelling the air that goes in and out of his nose, so close to my cheek. And, I love that one hand that reaches out for my forearm or the top of my shirt to touch skin while he's just going down or having a restless moment in light sleep.
Just dreamy.
Yay for Fridays and two whole days with Jaime here.
More images from the last few days.

Simon enjoying a bath for the first time.

Shimmy making use of the flat screen TV (it's not on- He likes to look at the Good Lookin' baby in the reflection)Getting ready to head out for a meet & greet (un-official title= Mayor of the PICU)

Love and thanks to you all.

Laura

Stable like a table

Shimmy's having a lovely day. He's played, he read new books, went out for a nice walk in the sunshine, is currently taking a nice 1.5 hour long nap, and had 2, yes 2 of the stinkiest poops I have ever smelled. There are many reasons to love breastmilk but one of them for sure is for the poop. Simon's poops always smelled kinda sweet or really like nothing at all. These formula poops are wicked. The weight gain is great though. Shimmy's averaging about 40 grams a day which is 1.33 ounces. Yay!!! I appreciate all the support around the ending of my milk and each day means that Simon and I find new ways of bonding. Still feeling sad that it's something I don't ever get to have back and that the reasoning for the end is not any kind of natural occurrence but it feels fine and important to just be with the sadness and at the same time enjoy our new activities together. Simon's just inches away from rolling over and in the last day has found his feet. A new love affair has begun. One foot is usually even more exciting than the other because of the red pulse-ox light. Who knew that finding one's own feet could be so fun.
We're also allowed two walks a day now and have figured out how to manage Simon in the sling even with all his wires and lines. He's loving getting out more and has taken to watching the cars go by through the small clearing of trees at the end of the parking lot that we walk around. It's fun to watch his head snap back and forth (gently) as one car passes and then another comes. Think- watching a tennis match.
Jaime's working late tonight so it's just me and Mamaw D. I miss Jaime but I am so grateful. Not just for her but for all of you riding this ride with our family. It's incredible not to feel alone. Simon feels it. He really does. You all are such an integral part of him having these great days. Thank you.
It's later in the evening now and I would have to say that Shimmy pretty much had a perfect day. Great long nap in the afternoon, very little spitting up, another sweet walk in the early evening, and a gentle journey to sleepland right around 7:30pm.
Aside from the elbow to the head that he got from his Mommy while working on rolling over today (he actually did it with just a little anchoring help from Mamaw D!!!), today was a perfect day. Sweetness, pure and simple.

Song for Simon

(Written last night at about 8 pm)
Okay, so Laura, my mom and I just bawled our eyes out, in a really good way. Carol started her shift by telling Laura that Cody, the Critical Care Support Technician who works evening shifts, had a gift for Simon. Cody came by after I got here to see what time we were going home tonight because he wanted to come by to give us his present. I couldn't wait and kept pestering him to tell us what it was.

He told us that last night he was having trouble sleeping and was thinking about us and was messing around on his guitar and a song just came to him. He then proceeded to play us this most beautiful song on his guitar (that he brought to work just so he could play it for us). He said he's going to record it in a studio (evidently he's a songwriter/performer!).

It was about the happiness in Simon's eyes and how he's not alone and that we're all holding hands and doing this together. There's even a line in there about his Mom and Mom. He's going to type up the words for us and we'll post them as soon as we have them. In the meantime, here's the video we caught of him performing. It's dark and hard to hear, but you can definitely feel the sweetness.
http://www.youtube.com/v/O6KAJQl-c0o
I was just saying to my Mom tonight that Simon manifests so much goodness in the world. It's incredible what keeps pouring out.

Looking preppy with his Auntie Sonya

Zuzu and Simon say 'Haayyyyy"

Shimmy rocking out with his Auntie Dre

Devilish boy (click to see larger photo for full effect)

Yet another good day

Jaime: Another good day today. I'm trying not to feel like other shoe is going to drop. I've learned to not get too attached to the good days meaning anything long term. I'll enjoy them while they're here. I did freak out a little when he started breathing hard for a little bit tonight. I had a good cry- the lip out, huffing, pouty, sad kind of cry, not a big sobbing wailing one. I feel sad tonight. I really, really want Simon to get better. I really, really want Simon not to die. No one knows how this will go and it's really, really hard.



We had a meeting with our team today that was really good. Basically just a check in with our Cardiologist, the Clinical Nurse Specialist and the Social Worker. We aren't going to change anything major- down a smidge on Milrinone, up a smidge on Enalopril, stay the same with Coreg for a week or so and then eventually work towards a Milrinone wean with a goal of maybe starting that in 2 weeks or so. We talked a bit about worst case scenarios and clarified the parameters we set up (no extraordinary measures if he goes into sudden cardiac arrest, probably no intubation but depends on the cause of the respiratory distress) and then Laura asked Dr. Hunkypants what the best case scenario is for us at this point. She asked, "Is total recovery within the realm of possibilities?" He said, "yes". We were both a little shocked, I think. It's still within the realm of possibilities. Not as likely as it was 6-7 weeks ago, but still possible.



I just don't know how to sit with all the uncertainty sometimes. I want to enjoy the good days and not be so terrified of the hard days. It's just awful when the hard days have the same symptoms that he had when he was sick enough intubated.

Laura: It's funny but I'm taking the other tac and am feeling really hopeful about Simon having a full recovery. We'll know better in two weeks about whether or not we can start the Milrinone wean and then if that's sucessful heading home. On lots of meds but heading home. I just loved hearing that at one end of the spectrum is a full recovery. I know what's at the other end and it's real and it's there but just knowing that it's still a full spectrum is comforting. Yeah he was breathing hard tonight but he also went to sleep and got his heart rate down the 113. Thasss right. 113. Gotta love it.
Tomorrow is another day. We'll see what it brings. Shimmy and I did get a two walk a day pass. We went out for just one today but it was like old times with Shimmy in the sling, checking out people and trees. Granted I was pushing an IV pole, still it felt great to be walking around like that again.

Grieving...for the boob

My milk is just about done. It's been a rough day feeling such excitement that Shimmy has been tolerating the higher calorie formula (we're now at 50/50 with breast milk ) and so getting the nutrition that he desperately needs to grow and heal and also realizing that my milk is quickly drying up. It feels like this devastating loss to me that I know I can get over but it also just brings it way home that I have a Son who is so sick he can't nurse and it's been going on long enough that my milk is drying up even with the pumping, drinking (water) and supplementation that I've been doing/taking for the last 7 weeks. And straight breastmilk is not enough for him as he needs so much more to heal his very sick heart.
I can't help but remember that these days, as normal as they've begun to feel, are not anywhere near normal. As much as Simon seemed so normal and healthy and loving life today, he is battling for it with every heart beat. The end of my body making milk for my son feels huge. I know there are so many other things I can do for him but this was one of the first and kept us connected as he went from being in my body to getting his sustenance directly from my body. Even for the last few weeks as his nursing stopped I was still feeling that connection as he at least got my milk through his NG tube. I cannot stop the tears each time I think of this loss. It's nothing compared to how much I would rather have his heart heal and his beautiful growing body get the energy it needs. And, it still feels like a huge loss.
And, Simon had a great day today.

Another good day

Good day for us, hard day for a few of our new friends here. I just ran into the Mom (Coco) with the baby with no butthole. I saw her crossing the street outside our window, with her baby in a sling a few days ago and thought, "Oh, how great that they're out of the hospital and back for a check up". Turns out that she had been coming from the Family House across the street to the ER because her son had stopped breathing. He also may need a heart transplant due to a huge hole and maybe kidneys. Oy. She was in great spirits though, and very sweet- she introduced me to her new friend there and talked about Laura and I putting food out for everyone in the lounge.

Another new friend whom we met last week had some drama. Last week we were in the cafeteria in the evening and sitting next to a couple that was obviously Muslim and their toddler. We started flirting with their little boy, playing games with a Coke can, etc. Then we began a fascinating conversation with his parents. We talked about Simon and they said their 5 month old son was here due to trouble with his esophagus and possibly a few other minor seeming issues. We then started talking and I started to get a bit nervous. We were obviously a queer couple and they were obviously very observant Muslims (the wife didn't speak any English) and I was afraid that the husband would start to condem us, etc. Instead we had a most amazing conversation, talking about philosophy and religion, and the beauty of the universe/God. We've seen them a few more times and I gave Dad some food one night.

Last night a Code Blue (cardiac arrest) was paged for the 4th floor and I overheard the nurses talking later about how it was a 5 month old. We both were a bit nervous that we'd know who it was but couldn't remember any other 5 month olds that had been in the ICU. Unfortunately, this morning when I came in early, I saw Dad at the front desk on the phone and immediately knew it was his baby.

It makes me want to not talk to anyone here sometimes. I've said to Laura a few times, "it could be worse for us. Okay, not worse, but different worse". I tell you those stories only so you can send them prayers and good thoughts too when you're thinking of us. Coco's new friend has been here for at least 7 weeks with her son and when I mentioned that we were on visitor 103, she said, "wow, we just live in Santa Rosa (an hour away) and we haven't had a single visitor". I didn't even know what to say...we have such incredible bounty and I am so grateful. I'm trying to share the love.

We're going to start Coreg tonight! Very excited and a little nervous.

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

Shimmy Rockin' Out

It's been another sunny day here at CHO both outside, where we got to be for about 30 minutes, as well as inside where Simon has been a chipper little monkey all day. He's in fine spirits even after having an active night with some emesis (that's medical talk for barfing) and just general fussiness. We think some of it had to do with the three hour nap he took right before his bedtime. Somewhere we got off our schedule and Simon thought it was party time once the sun went down. We're trying to teach him that partying can happen anytime (see video below).

http://www.youtube.com/v/EosHgRW-VG0

We're gearing up for another weekend and then Jaime going back to work. Simon's pretty bonded to his Mama now so it's going to be sad to have them be separated for so many hours during the day after the bliss of the last week. I'm going to miss Jaime something wicked as well.

Really....? No winning lottery ticket from anyone? Where's the love?

I know it's hard to recognize sarcasm over the internet so let me just reiterate that Jaime, Simon, and I are very much in touch with where the love is. It's pouring in all the time in so many ways. Here are some examples...

Jubilee, one of our Fellows, came by to say goodbye as she's finally getting a day off (after 12 on). She just wanted us to know that the only thing she was sad about in terms of taking a day off was "not getting to see Simon for a whole day." The woman just worked 12 days straight and is finally getting 24 hours off and she makes a point to come by and tell us that she's going to miss seeing Simon!!

Theresa, our Stethoscope benefactor, came by again just to check on how Simon was doing.

Nurses that we've never had or even met are wearing the Team Shimmy buttons and saying hi to us in the hall. Even the parking attendant that we see every night has a button (given to her by Bruce) and asks about Simon.

Our beloved Rebbe Jhos came by and said a little (actually a large) prayer for Simon and it set something in motion for the rest of Shimmy's life and my life as his Mom.

I believe that this time of so much love, prayer, food, touch, and generosity coming to Shimmy is also speaking to what he gets to give back as he grows up. There is this amazing pool that is being filled with all of that goodness coming his way. I get it now that it's our job to make sure that as he grows he gets to "pay it forward" and spend the rest of his life sharing that love, touch, food, and amazing sweetness with anyone and everyone that he comes in contact with. I'm so looking forward to sharing that mission with Shimmy as he grows. The amazing thing is that he'll have all of your comments, cards, little notes, images, etc, etc, to know how full that pool is and how much he gets to give back throughout his life. What a privilege.

Boundless love and gratitude to you all.

P.S. Who else besides Alicia's sister in Bremin, Germany is looking from Europe? Inquiring minds want to know!

And now a funny moment from Jaime:

Our nurse said there was something leaking under the chair Laura was sitting in with Simon. She didn't seem concerned with finding out what it was but I sure wanted to know because there wasn't anything around to leak! After following the puddle on the floor of clear whitish fluid to the front of the chair, I realized that Simon's NG tube had come unplugged and he had leaked about an ounce of milk on the floor...directly from his stomach out of the tube. Yup, it was Simon that was leaking! Kinda funny, kinda gross.

A few photos from the last few days:

Us with Thomas, quite possibly the sweetest man alive (and the custodian of our unit). Today when Thomas locked eyes with Shimmy, he exclaimed "He's looking right into my soul. He's my soul brother!" We all had a good chuckle :-)

Simon flirting with Bubbi Vera

Grandpa Bruce teaching Shimmy how to blow up his head.