Today Simon had his 70th visitor to the PICU! That's right. The little man has had 70 visitors (many of them multiple times) since August 1 when all this mishegas began.
It's really so bittersweet to even think about. So amazing that so much love and support has come our way and so bitter to think about the situation that is inspiring so much love- not that there wasn't the love there when Simon was born and for the first 3 months and 23 days- it's just quite the tidal wave of love that we've been experiencing for the last 4 weeks.
Yup, today four weeks ago was when this all began.
And where we are today versus 4 weeks ago is also pretty amazing. Simon is stable and responding so well to his new regiment of anti-biotics. He's still on the Milrinone and will be through the weekend but since he's been weaned once, we're hoping that it should be a relatively similar wean again and that he'll just start over again with showing us that he's ready to stay off it. His BNP score was quite high this morning- that's the test that lets us know how distressed his heart muscle is and unfortunately the higher the score the weaker the muscle. Dr Patel was surprised once again to get that score given how alert and happy Shimmy was this morning when he came in before 'rounds. Simon is just a living contradiction. We had a lovely morning with smiles, page turning, lots of eye contact with visiting nurses and doctors, lively conversation, and even a solid poop and dream feed (just one nursing session and that was in his sleep).
AND
Simon's heart was pretty wrecked to start with and the staph infection just kicked him while he was down. We're technically still in heart failure and waiting to see some kind of improvement on an Echo Cardiogram after four weeks. It hasn't happened yet. It's more than likely that it won't for a long time to come if it's going to happen at all. We're still not sure what camp Simon's going to end up in- a) Full recovery b) Partial recovery or c) Needs a heart transplant to keep going.
Day to day is manageable. Today was better than yesterday which was better than the day before. It's the roller coaster ride I never bought a ticket for.
(We'll write more later about the price of this ticket)
Love to all
Laura
Friday, August 29, 2008
Thursday, August 28, 2008
He's back
For the most part, Simon's back to where he was on Monday. Tuesday was wicked scary, yesterday all about sleeping and today he seems almost back to where we were before the staph infection really hit.
He's still feverish but we're controlling that with Tylenol and Motrin. He's on a 10 day regiment of anti-biotics but they've switched it from Vancomyecin to Oxycillin as they were able to isolate the bacteria and find the most effective treatment for it. The nice thing is that the infection at the Broviak site is in fact the same that was found to be in his blood and it's not the resistant to anti-biotic kind which is great.
The bummer is that this is a set back in terms of when we might be able to leave the hospital but since we weren't really working off any kind of time frame it's not that palpable just that it's a set back.
I got some smiles and chuckles this morning (Simon is working on his "razzberry" and was enjoying my mock sneezing) and Auntie Dre, who has been an amazing constant for little Shimmy (really since his birth but even more so during this time) was the perfect snooze pillow.
We've misplaced our camera :-( so no pictures right now but Simon's looking good.
Love to all his fans out there.
Laura
He's still feverish but we're controlling that with Tylenol and Motrin. He's on a 10 day regiment of anti-biotics but they've switched it from Vancomyecin to Oxycillin as they were able to isolate the bacteria and find the most effective treatment for it. The nice thing is that the infection at the Broviak site is in fact the same that was found to be in his blood and it's not the resistant to anti-biotic kind which is great.
The bummer is that this is a set back in terms of when we might be able to leave the hospital but since we weren't really working off any kind of time frame it's not that palpable just that it's a set back.
I got some smiles and chuckles this morning (Simon is working on his "razzberry" and was enjoying my mock sneezing) and Auntie Dre, who has been an amazing constant for little Shimmy (really since his birth but even more so during this time) was the perfect snooze pillow.
We've misplaced our camera :-( so no pictures right now but Simon's looking good.
Love to all his fans out there.
Laura
Wednesday, August 27, 2008
A Little Better This Morning
The ICU docs just rounded and the gist is that he looks a lot better which means he's responding to the broad spectrum antibiotics which is a REALLY good thing. They're guessing it's a Staph infection that he got when Staph from his skin (we all have it) got introduced through one of his lines. Now they're just trying to find out what type of Staph it is so they can pick the right antibiotic. This is the hazard of IVs and invasive procedures, but they HAD to do it, so...
They have to keep the Broviac so they'll try treating the infection through it instead of pulling it. It will be longer than a week of treatment (if it were just a regular IV, that's about how long the antibiotic treatment would be). Dr. Hansen also talked about a new/ancient treatment for an infected line which they call an Ethanol Lock. They basically pump the line full of concentrated ethanol which kills just about everything (they don't pump it all the way through, so Simon won't actually get drunk. Poor guy, I bet he could use a drink).
His cousin Caleb came by with Cathy and he read Simon about 4 books. Simon was fascinated with Caleb and turned the pages quite eagerly. It was adorable...
I'll be going back to work tomorrow assuming we have no other drama. I'm way over the drama, but I know it will be weeks, possibly months and possibly years of this up and down ride, so I just have to roll with it.
Until later...
They have to keep the Broviac so they'll try treating the infection through it instead of pulling it. It will be longer than a week of treatment (if it were just a regular IV, that's about how long the antibiotic treatment would be). Dr. Hansen also talked about a new/ancient treatment for an infected line which they call an Ethanol Lock. They basically pump the line full of concentrated ethanol which kills just about everything (they don't pump it all the way through, so Simon won't actually get drunk. Poor guy, I bet he could use a drink).
His cousin Caleb came by with Cathy and he read Simon about 4 books. Simon was fascinated with Caleb and turned the pages quite eagerly. It was adorable...
I'll be going back to work tomorrow assuming we have no other drama. I'm way over the drama, but I know it will be weeks, possibly months and possibly years of this up and down ride, so I just have to roll with it.
Until later...
At least we know
So Simon's infection is systemic not just localized to his incision. They're still trying to identify the bacteria is his blood and will hopefully find the right antibiotic. The culture they took grew some yuck in ten hours which is unfortunately fast. It seems like he's responding to the broad spectrum antibiotics that they started yesterday. He's resting better and his heart rate is in the 160's today instead of the 200's. He's still warm but not anywhere near as feverish as yesterday afternoon.
We think that Simon was fighting something from even before his surgery on Saturday. Who knows where it came from. They said it could be some kind of urinary infection or from one of the many lines, line attempts, or PICC. He's compromised in general from his heart needing work so hard to just maintain. Any thing on top of that is just too much for him. Folks here are doing an amazing job on working to be on top of it quickly and comprehensively.
Jaime's here for the day and we're doing well ourselves in terms of maintaining. I think our love is the best thing around and that just means that along with his Milrinone, antibiotics, and numerous medications, Simon is getting the best thing around. Not to mention the sweet sweet lovin' that's coming his way from all of you.
I think often of the army of supporters that are standing behind, and beside us as we're going down this road. It's like on a ropes course when you have folks spotting you as you're taking the big climbs, leaps and falls. The hands are there not touching you but just a few inches away should you need them.
Ginormous gratitude.
P.S. The "Team Shimmy" buttons are in. Bruce is bringing them to the hospital today. Get em' while they're hot.
We think that Simon was fighting something from even before his surgery on Saturday. Who knows where it came from. They said it could be some kind of urinary infection or from one of the many lines, line attempts, or PICC. He's compromised in general from his heart needing work so hard to just maintain. Any thing on top of that is just too much for him. Folks here are doing an amazing job on working to be on top of it quickly and comprehensively.
Jaime's here for the day and we're doing well ourselves in terms of maintaining. I think our love is the best thing around and that just means that along with his Milrinone, antibiotics, and numerous medications, Simon is getting the best thing around. Not to mention the sweet sweet lovin' that's coming his way from all of you.
I think often of the army of supporters that are standing behind, and beside us as we're going down this road. It's like on a ropes course when you have folks spotting you as you're taking the big climbs, leaps and falls. The hands are there not touching you but just a few inches away should you need them.
Ginormous gratitude.
P.S. The "Team Shimmy" buttons are in. Bruce is bringing them to the hospital today. Get em' while they're hot.
Tuesday, August 26, 2008
One step Forward, Two Steps Back
Today was a rough one. Jaime dropped me off this morning at the usual time and when I got upstairs Meghan our wonderful day nurse mentioned that Simon seemed a little more fussy than usual and was having a harder time taking his early morning nap. I get in around 7:30 in the morning and Simon has usually been woken up around 6am had some smiling time with visiting nurses and then is napping when I arrive or is just ready for a little snuggling with me and then goes right down.
He was clearly happy to see me but almost immediately let me know that something was making him unhappy. We sat for a while and I checked all the regulars (diaper, boob, book, etc) to see what he wanted. None of them seemed to work and then I saw that he was definitely tired, but having trouble sleeping. I thought that he felt warm and was wondering if Simon was teething. He wasn't interested in chomping on anything and then he puked up almost his entire 9 o'clock feeding. That's when I noticed that the redness that I saw yesterday right around his Broviac line (and attributed to changing the dressing) had gotten bigger and now there was some "juice" underneath the dressing as well.
And that's when the fun started.
We went through several folks on the ladder trying to get them aware of something going on (that I thought was serious right away. Neuroses and/or mother's instinct) and also that Simon was getting more and more worked up and so his heart rate was just going up and up. Simon was also feeling hotter and hotter to my touch but his core temp was saying that he wasn't really feverish. He wasn't that interested in nursing around his 12 o'clock feeding which I thought was weird since he'd puked up most of his earlier feeding and the fussiness just increased. His heart rate kept creeping and when it hit 190 I called for Meghan and asked her to get a Dr. She did right away and things picked up from there.
Simon got a whole blood workup sent out and folks finally seemed concerned with the incision site at his Broviac line. Two folks from the OR came looked at the site and they checked his core temp again. When it didn't show that he had a fever I asked that they check his axillary temp too (that's the underneath the armpit one which is supposed to be less accurate) since he's core one (through is little poop shoot) wasn't showing that he had a fever but the little man was wicked hot. Turned out that for whatever reason his core temp wasn't showing it but his axillary temp finally showed that he'd spiked a fever of 102.6
They gave him another dose of Tylenol that didn't seem to touch him and we went for another couple of hours in the same cycle of fitful napping and inconsolable waking periods. His next temp reading was 104 and they added a dose of Motrin overlapping the Tylenol. I think that was the scariest time of the day. Things just seemed way too familiar with Simon presenting much the way that he did that first night. His heart rate was around 216 (120-140 is normal) and his breathing was getting faster and more labored (not as bad as that first night but still not anywhere near the low numbers that we've seen in the last week or so).
Dr Patel and Rosenfeld confirmed what our Cardiac nurse Susan already told me, which is that Simon was going to need to go back on Milrinone and if his breathing picked up more then he might need to be intubated again but that it didn't look like we were quite there yet.
Fuck. Back on Milrinone.
That and they even had to say "intubation".
It was hard that Jaime was at work. Dianne was amazing to have here and by this time Jaime was able to leave early and come right to the hospital. By the time she arrived the Motrin and Tylenol seemed to start taking effect and Simon conked out into a finally restful sleep. It took another hour or so but his fever finally came under control and we got our first smiles of the day. He's resting now with a sleeping heart rate of 132 (it's been in the one teens before this but I'll take it) and even nursed for a brief minute at the 6 and 9pm feedings).
Holy Crap. So much for no more drama. I'm tired. I'm scared. And we're still waiting to know if this is a localized infection or something more systemic. Either way it's a delicate balance of still needing the Broviac line and that's where the infection is. Simon's getting two doses of anti-biotics, he's back on Milrinone but he's resting. So who knows what tomorrow will bring. Things feel relatively under control. Relatively, that's the key term. Nothing has really felt under control since August 1st but....I don't know. Some days are better than others. Some hours are better than others.
Today was a hard day. Simon is a very sick little boy and with as much spirit and fight that he's got, he doesn't need any more on top of what he's already dealing with.
Jaime says: I'm not going to work tomorrow. My manager had to tell me point blank not to come in. She's a nurse so when she tells me I need to be at the hospital...I need to be at the hospital. Of course I want to be here 24/7 but it's a very delicate process trying to figure out what warrants using my PTO when it's already getting low. When we're coasting I feel ok about being at work but when we have a bump, that puts everything into perspective. This really is a matter of life and death.
People keep saying to me "How are you doing this (working/living/functioning) while Simon is as sick as he is?" And I just say I have no other choice. You do what has to be done. I think my greatest life accomplishment this far will be to have weathered this with some kind of grace, humour and compassion for other people. Sometimes I just want the world to stop. I want all work responsibilities absolved. I want to wear a sandwich board that says what's happening. But instead I'll go to work and when people say "how's Simon?" I'll say "he's sick" with a little nod and half smile and then go about my business because life must go on. This is hopefully the hardest thing that Laura and I will have to do.
Anybody know any one that does Reiki? He could probably use a little.
Huge thank you's for all the meals as of late. They are much appreciated.
He was clearly happy to see me but almost immediately let me know that something was making him unhappy. We sat for a while and I checked all the regulars (diaper, boob, book, etc) to see what he wanted. None of them seemed to work and then I saw that he was definitely tired, but having trouble sleeping. I thought that he felt warm and was wondering if Simon was teething. He wasn't interested in chomping on anything and then he puked up almost his entire 9 o'clock feeding. That's when I noticed that the redness that I saw yesterday right around his Broviac line (and attributed to changing the dressing) had gotten bigger and now there was some "juice" underneath the dressing as well.
And that's when the fun started.
We went through several folks on the ladder trying to get them aware of something going on (that I thought was serious right away. Neuroses and/or mother's instinct) and also that Simon was getting more and more worked up and so his heart rate was just going up and up. Simon was also feeling hotter and hotter to my touch but his core temp was saying that he wasn't really feverish. He wasn't that interested in nursing around his 12 o'clock feeding which I thought was weird since he'd puked up most of his earlier feeding and the fussiness just increased. His heart rate kept creeping and when it hit 190 I called for Meghan and asked her to get a Dr. She did right away and things picked up from there.
Simon got a whole blood workup sent out and folks finally seemed concerned with the incision site at his Broviac line. Two folks from the OR came looked at the site and they checked his core temp again. When it didn't show that he had a fever I asked that they check his axillary temp too (that's the underneath the armpit one which is supposed to be less accurate) since he's core one (through is little poop shoot) wasn't showing that he had a fever but the little man was wicked hot. Turned out that for whatever reason his core temp wasn't showing it but his axillary temp finally showed that he'd spiked a fever of 102.6
They gave him another dose of Tylenol that didn't seem to touch him and we went for another couple of hours in the same cycle of fitful napping and inconsolable waking periods. His next temp reading was 104 and they added a dose of Motrin overlapping the Tylenol. I think that was the scariest time of the day. Things just seemed way too familiar with Simon presenting much the way that he did that first night. His heart rate was around 216 (120-140 is normal) and his breathing was getting faster and more labored (not as bad as that first night but still not anywhere near the low numbers that we've seen in the last week or so).
Dr Patel and Rosenfeld confirmed what our Cardiac nurse Susan already told me, which is that Simon was going to need to go back on Milrinone and if his breathing picked up more then he might need to be intubated again but that it didn't look like we were quite there yet.
Fuck. Back on Milrinone.
That and they even had to say "intubation".
It was hard that Jaime was at work. Dianne was amazing to have here and by this time Jaime was able to leave early and come right to the hospital. By the time she arrived the Motrin and Tylenol seemed to start taking effect and Simon conked out into a finally restful sleep. It took another hour or so but his fever finally came under control and we got our first smiles of the day. He's resting now with a sleeping heart rate of 132 (it's been in the one teens before this but I'll take it) and even nursed for a brief minute at the 6 and 9pm feedings).
Holy Crap. So much for no more drama. I'm tired. I'm scared. And we're still waiting to know if this is a localized infection or something more systemic. Either way it's a delicate balance of still needing the Broviac line and that's where the infection is. Simon's getting two doses of anti-biotics, he's back on Milrinone but he's resting. So who knows what tomorrow will bring. Things feel relatively under control. Relatively, that's the key term. Nothing has really felt under control since August 1st but....I don't know. Some days are better than others. Some hours are better than others.
Today was a hard day. Simon is a very sick little boy and with as much spirit and fight that he's got, he doesn't need any more on top of what he's already dealing with.
Jaime says: I'm not going to work tomorrow. My manager had to tell me point blank not to come in. She's a nurse so when she tells me I need to be at the hospital...I need to be at the hospital. Of course I want to be here 24/7 but it's a very delicate process trying to figure out what warrants using my PTO when it's already getting low. When we're coasting I feel ok about being at work but when we have a bump, that puts everything into perspective. This really is a matter of life and death.
People keep saying to me "How are you doing this (working/living/functioning) while Simon is as sick as he is?" And I just say I have no other choice. You do what has to be done. I think my greatest life accomplishment this far will be to have weathered this with some kind of grace, humour and compassion for other people. Sometimes I just want the world to stop. I want all work responsibilities absolved. I want to wear a sandwich board that says what's happening. But instead I'll go to work and when people say "how's Simon?" I'll say "he's sick" with a little nod and half smile and then go about my business because life must go on. This is hopefully the hardest thing that Laura and I will have to do.
Anybody know any one that does Reiki? He could probably use a little.
Huge thank you's for all the meals as of late. They are much appreciated.
Sunday, August 24, 2008
Simon's First 1/4 Pounder
Simon hadn't pooped in two days so he got some Glycerin to get things moving.
Simon got moving all right.
Simon pooped a quarter pound! A quarter pound of poop.
The little man only weighs 11.8 pounds. Well...now he only weighs 11.4
Jaime did that diaper change.
She gets a medal.
Simon got moving all right.
Simon pooped a quarter pound! A quarter pound of poop.
The little man only weighs 11.8 pounds. Well...now he only weighs 11.4
Jaime did that diaper change.
She gets a medal.
A Quiet Sunday
Another weekend gone by and Simon is recovering well from his surgery yesterday. He's a little sore and so has been getting regular doses of Tylenol but really that's about it. We're done with one dose of lipids and Simon already put on four ounces in the last two days. They're going with the all fat, all the time diet for at least another day and we're thinking of changing Shimmy's name to Gordo to suit him better. It's really exciting to see new rolls around his thighs and wrists. It's even been said that his cheeks are larger :-)
He also seems to be sweating less hopefully meaning that his heart isn't working quite as hard.
It's been quiet with visitors today and Jaime and I even got to go down to the cafeteria to enjoy some delicious food (Thank you Alicia!!) while Simon took a nice long nap in his bed.
Carol our nurse and new best friend is sitting here shooting the poop with us and just informed us that the lipids are in fact fat drawn from Soy. Not the Crisco can that I thought but close to it. I swear to god that's just what it looks like.
My hope now is that we're done with major interventions and are in for a long but steady recovery with no bumps but simple days of napping, reading, taking short walks, smiling, the occasional giggle and hitting new developmental milestones (hello...turning pages in a book!)
Ridiculous Sweetness: One of our nurses showed up today for her shift and stopped by to stay Hi. Yeah, not even his nurse and she came by to say hi. That's been happening a lot.
Anyway, she came in and said that she had a present for us. She handed over this awesome blanket that she'd made!!
It's orange with soft soft fleece on the inside. She said that sometimes nurses make blankets for babies that have been in the ICU for a while. She said that she thought that Simon hadn't been in THAT long but she wanted to give him something.
The love just continues to flow in and out and all around.
Laura
He also seems to be sweating less hopefully meaning that his heart isn't working quite as hard.
It's been quiet with visitors today and Jaime and I even got to go down to the cafeteria to enjoy some delicious food (Thank you Alicia!!) while Simon took a nice long nap in his bed.
Carol our nurse and new best friend is sitting here shooting the poop with us and just informed us that the lipids are in fact fat drawn from Soy. Not the Crisco can that I thought but close to it. I swear to god that's just what it looks like.
My hope now is that we're done with major interventions and are in for a long but steady recovery with no bumps but simple days of napping, reading, taking short walks, smiling, the occasional giggle and hitting new developmental milestones (hello...turning pages in a book!)
Ridiculous Sweetness: One of our nurses showed up today for her shift and stopped by to stay Hi. Yeah, not even his nurse and she came by to say hi. That's been happening a lot.
Anyway, she came in and said that she had a present for us. She handed over this awesome blanket that she'd made!!
It's orange with soft soft fleece on the inside. She said that sometimes nurses make blankets for babies that have been in the ICU for a while. She said that she thought that Simon hadn't been in THAT long but she wanted to give him something.
The love just continues to flow in and out and all around.
Laura
Saturday, August 23, 2008
Miracles Happen Every Day
The little girl in the bed across from us drowned in the family pool 3 days ago. Her father and a neighbor rescued her after she had been in the water for an unknown period of time (maybe 5 minutes or more). She was LifeFlighted here the night before last from Santa Rosa. Here's a link to the newspaper story about what happened to her: http://www.pressdemocrat.com/article/20080823/NEWS/808230328/1033/news&title=Young_girl_pulled_from_pool__resuscitated
Yesterday she was clearly out of it - very quiet, greyish, crying. Today she is a totally normal seeming 3 year old- chatty, singing, going on walks, telling her parents what to do.
It's unbelievable to see what can happen here. We have beds facing each other and have had a few conversations with the Mom to help her get through the first 36 hours after something horrible like this happens. Her parents are doing so much better and really wanted to take a picture of us since we have developed a little bond. We thought we should take one too!
Here is Haylee and her parents tonight, quite alive and happy and probably going home in a few days. Yea Haylee!!!
It's amazing what happens here at CHO- the most incredible stories and the hardest ones. These are the scrappiest kids I have ever seen. A lot of the children here are making it through the most horrible, impossible things and so are their parents. We are doing all we can to support the people that are suffering and borrow joy from those who are making progress. This is truly community in the making.
Yesterday she was clearly out of it - very quiet, greyish, crying. Today she is a totally normal seeming 3 year old- chatty, singing, going on walks, telling her parents what to do.
It's unbelievable to see what can happen here. We have beds facing each other and have had a few conversations with the Mom to help her get through the first 36 hours after something horrible like this happens. Her parents are doing so much better and really wanted to take a picture of us since we have developed a little bond. We thought we should take one too!
Here is Haylee and her parents tonight, quite alive and happy and probably going home in a few days. Yea Haylee!!!
It's amazing what happens here at CHO- the most incredible stories and the hardest ones. These are the scrappiest kids I have ever seen. A lot of the children here are making it through the most horrible, impossible things and so are their parents. We are doing all we can to support the people that are suffering and borrow joy from those who are making progress. This is truly community in the making.Pro Bro(viac)
The line is in. After a roller coaster of a day Simon's line is in and he will no longer have to get poked every day for labs and blood work. It's a little intense to see a line that's bigger than his NG tube coming out of his chest but there it is. Yay!! No more poking, no more looking for veins 3,4, 5 times and not getting one!!
It was a tough day indeed with Simon getting his last feeding at 6am, thinking that his surgery would be around 10am and then having it get pushed back to 12 and then pushed back again to 2. I was joking that he must be getting weak with hunger but with the fever that developed and his high level of irritability mixed with exhausted waking and sleeping that's exactly what he was. It seemed even harder given that I was right there with two days of fabulous nursing sessions just behind us. I remembered that Dr Casey (one of his ICU cardiologists) had mentioned that one of the benefits of the Broviac was that if they needed to, they could administer lipids (straight fat) right to his blood stream. Thinking that Simon went 8 hours without eating as well as having a fever and fussing for the entire time, this might be a good thing to get started with once the Broviac line was in. I mentioned it to Dr Hanson who agreed that it was a great way to catch him up on the calories that he'd missed (plus some). The tube of lipids just arrived and really, it looks just like Lard. I can't believe that they're going to pump that right into his blood. Jaime keeps saying that we could walk out of here with a chunky baby. I can't even imagine what that would look like.
Jaime's so tired right now she can't even dictate a blog entry to me.
Hey one more thing. To all you fabulous readers out there, when you're leaving comments on the blog, please let us know who you are. We've had some very sweet comments left by Anonymous and we're just wondering who you are.
So much gratitude.
Laura
It was a tough day indeed with Simon getting his last feeding at 6am, thinking that his surgery would be around 10am and then having it get pushed back to 12 and then pushed back again to 2. I was joking that he must be getting weak with hunger but with the fever that developed and his high level of irritability mixed with exhausted waking and sleeping that's exactly what he was. It seemed even harder given that I was right there with two days of fabulous nursing sessions just behind us. I remembered that Dr Casey (one of his ICU cardiologists) had mentioned that one of the benefits of the Broviac was that if they needed to, they could administer lipids (straight fat) right to his blood stream. Thinking that Simon went 8 hours without eating as well as having a fever and fussing for the entire time, this might be a good thing to get started with once the Broviac line was in. I mentioned it to Dr Hanson who agreed that it was a great way to catch him up on the calories that he'd missed (plus some). The tube of lipids just arrived and really, it looks just like Lard. I can't believe that they're going to pump that right into his blood. Jaime keeps saying that we could walk out of here with a chunky baby. I can't even imagine what that would look like.
Jaime's so tired right now she can't even dictate a blog entry to me.
Hey one more thing. To all you fabulous readers out there, when you're leaving comments on the blog, please let us know who you are. We've had some very sweet comments left by Anonymous and we're just wondering who you are.
So much gratitude.
Laura
And So We Wait
So, Simon was supposed to get his Broviak line at 10 this morning, then maybe noon, now maybe 2pm, but who really knows. They're trying to fit him in between surgeries. The hardest part is that he's HUNGRY! He last was fed at 6 am and they won't let him eat. He's supposed to be gaining weight so not feeding him is really frustrating. Argh.
The main possible complications of this procedure involves his blood pressure getting low, which they can deal with and his coming out of anesthesia (he'll be intubated). They have to extubate slowly and I'm hoping we aren't going to have an intubated baby for hours. They initially said the post-op process is about 30 minutes and I'm really hoping that they get the damn tube out as quickly as possible. It sounded like a pretty quick procedure but there's so much to get into and out of it that makes me a little nervous. The reality is that we don't really have a choice, so it's what we have to do.
That's kind of the name of this whole game, right?
Laura Says:
All of that is very real AND the hardest thing for me right now is being around my hungry baby and not being able to feed him. It's gets worse when I get closer to him since he can smell me and clearly associate comfort/relief from hunger with me. It was quite intense for a moment there when my head was telling me all the very real reasons that Simon shouldn't eat anything but my body was saying "fuck that, feed the baby".
I had to leave the room and that's stupid hard given the fact that Simon is about to have surgery.
Fuck this is hard.
The main possible complications of this procedure involves his blood pressure getting low, which they can deal with and his coming out of anesthesia (he'll be intubated). They have to extubate slowly and I'm hoping we aren't going to have an intubated baby for hours. They initially said the post-op process is about 30 minutes and I'm really hoping that they get the damn tube out as quickly as possible. It sounded like a pretty quick procedure but there's so much to get into and out of it that makes me a little nervous. The reality is that we don't really have a choice, so it's what we have to do.
That's kind of the name of this whole game, right?
Laura Says:
All of that is very real AND the hardest thing for me right now is being around my hungry baby and not being able to feed him. It's gets worse when I get closer to him since he can smell me and clearly associate comfort/relief from hunger with me. It was quite intense for a moment there when my head was telling me all the very real reasons that Simon shouldn't eat anything but my body was saying "fuck that, feed the baby".
I had to leave the room and that's stupid hard given the fact that Simon is about to have surgery.
Fuck this is hard.
Friday, August 22, 2008
Other Great Pics From The Last Few Days
Simon's Auntie Winter, scaring him for life
Mamaw, Mama, Shimmy and Mommy displaying their fabulous hairdo's, courtesy of Carol(Simon's primary nurse). Note Simon's 2 little pigtails which started this whole thing.
Simon, touching a tree on his walk outside
Our kooky nurse, Carol
Mr. Diva, post spa treatment a few days ago
Simon, touching a tree on his walk outside
Our kooky nurse, Carol
Mr. Diva, post spa treatment a few days agoGreat pictures from today
Simon with Mamaw
Dr. Reed (one of the ICU attendings)
OUTSIDE!!!
Simon, trying to eat Mama's face
Mama, eating Simon's faceIrreconcilable Truths
Simon is still in heart failure.
Simon had a *great* day.
He laughed
He played.
He went for a walk outside.
He was as happy today while in the hospital as he's been out of the hospital.
He nursed like a champ.
Simon is a VERY loved baby. See exhibit A from his friend Theo
Simon is still in heart failure.
TGIF x 3
Wow, what a day. Very good and very hard. After a meeting with my boss, I've decided to start back to work full time starting Monday. I've still been responsible for all my regular work but trying to cram it into 5 hours a day and it just means no one is happy. I'm not quite sure how to not lose my mind, but the demands at work aren't flexible so it's better to just go back to work.
I had a very good cry in the car at the hospital and then, as I was walking down the hall to the ICU I had an experience that made me cry even harder. As I turned the corner from the stairwell, a woman was standing against the wall. I She saw my visitor badge that I put a picture of Simon on. After I had passed her and was about 20 steps away, she said, "Is that your baby?". When I said yes, she said "he's beautiful. What's wrong with him?". I said, "He's in heart failure." Then there was a pause, as it was obviously her turn to say why she was there and she said, "My baby passed. She passed the day before yesterday"
I dropped my bags on the floor and walked over to her and asked her if she wanted a hug. She nodded and we held each other and swayed and didn't cry and didn't talk for about 20 seconds. Then I asked "what was your baby's name?" She told me and we hugged some more. Then I stepped back and told her my name and she told me hers and we shook hands. She told me how hard it is to lose a child. She had to pull the plug and was holding her child when she died. She didn't cry or really even show any emotion the whole time. I gave her another long hug and then I walked down the hall to Simon.
I walked in and Simon was super chipper and cute, hanging with Laura and my Mom. He fed and then we went on a WALK! We were allowed to walk outside of the ICU for 10 minutes so we went to the courtyard and Simon was in heaven in the sun. We get to do that every day! We'll upload pics of the adventure when we get home.
The other news is that Simon is having surgery tomorrow to put in a more permanent IV. It's scary because of course there is some risk involved, but really we have no option and it will mean that they can draw blood and give him meds if they need to without having to stick him anymore. They tried to draw blood 2x today without success and haven't been able to get a PICC, so it's really time.
So so glad it's the weekend.
I had a very good cry in the car at the hospital and then, as I was walking down the hall to the ICU I had an experience that made me cry even harder. As I turned the corner from the stairwell, a woman was standing against the wall. I She saw my visitor badge that I put a picture of Simon on. After I had passed her and was about 20 steps away, she said, "Is that your baby?". When I said yes, she said "he's beautiful. What's wrong with him?". I said, "He's in heart failure." Then there was a pause, as it was obviously her turn to say why she was there and she said, "My baby passed. She passed the day before yesterday"
I dropped my bags on the floor and walked over to her and asked her if she wanted a hug. She nodded and we held each other and swayed and didn't cry and didn't talk for about 20 seconds. Then I asked "what was your baby's name?" She told me and we hugged some more. Then I stepped back and told her my name and she told me hers and we shook hands. She told me how hard it is to lose a child. She had to pull the plug and was holding her child when she died. She didn't cry or really even show any emotion the whole time. I gave her another long hug and then I walked down the hall to Simon.
I walked in and Simon was super chipper and cute, hanging with Laura and my Mom. He fed and then we went on a WALK! We were allowed to walk outside of the ICU for 10 minutes so we went to the courtyard and Simon was in heaven in the sun. We get to do that every day! We'll upload pics of the adventure when we get home.
The other news is that Simon is having surgery tomorrow to put in a more permanent IV. It's scary because of course there is some risk involved, but really we have no option and it will mean that they can draw blood and give him meds if they need to without having to stick him anymore. They tried to draw blood 2x today without success and haven't been able to get a PICC, so it's really time.
So so glad it's the weekend.
Thursday, August 21, 2008
Reality Check
Simon is really sick.
I keep wanting to not stay with that information, in general. That's made even easier by the fact that for all intents and purposes he looks and acts like a normal baby. We had a team meeting with our cardiologist, social worker, and the two clinical nurse specialists to discuss his weight gain or lack thereof and to touch base about short term and long term goals.
The short term goal is that he needs to gain at least 15-30 grams a day and this week we've averaged 10. So to accomplish more weight gain, we need to seriously bump up his calories and the only way to do that without stressing him too much is formula fortifier. Laura's really concerned that this will mean the end of breast feeding because the fortifier keeps him feeling really full but they're keeping him on the every three hour schedule so he might not ever really get hungry. We're having to let go of what we want ideally in favor of what's medically necessary for him to have a better chance to heal.
We're definitely not going home next week. Dr Rosenfeld explained whywe might have gotten that message from other doctors. For other cardiac patients the criteria for going home is usually are they gaining weight and not much else. Simon's not dealing with a structural defect or post op recovery, he's dealing with weak, sick muscle and that's different and more complicated than a surgical recovery where the muscle is basically healthy but injured in some way. Ultimately Dr. Rosenfeld is the final say in whether Simon stays or goes, which is good to know, b/c there are so many people in the mix right now. It was a good meeting with a lot of information, some pieces harder to hear than others.
It was really challenging to go immediately from this team meeting about Simon not really being much better, directly into a work conference call that I was already late to. I feel like I should almost just go back to work full time because who knows how long this will go on and at the same time how can I possibly leave Laura and Simon in the hospital for that many hours and not be with them. This whole thing just feels insane. Methinks I should play the lottery.
There's been discussion about Simon getting a more permanent IV line which would involve a surgical procedure (since they can't seem to get a PICC line in despite at least four attempts). It's both terrifying and a little bit of a relief to think of that type of IV. He'd have it for up to 6 months and they'd be able to draw labs and give him medication should he need it. We'll find out in the next day or two. Kind of a rough day.
A sweet note today- Our friends Angie and Elizabeth who have two small boys (four months apart!) brought us homemade food. (You can read their article in the latest Curve magazine as to why it's such a big deal that they made us homemade lasagna complete with noodles that they made themselves).
Laura says: I don't really know what to write. I'm a little tapped out right now. The visits and gifts are amazing.
My heart doesn't know what to do with the sweetness of time with Simon where he presents somewhat normally, nuzzles into my neck, takes better and better to nursing, AND still is a very sick boy on the inside who's heart is not working any where near well enough.
That's all I got right now.
p.s. just had an experience that made me laugh so hard I cried. I was dictating this blog post to Laura while I held Simon and when I went to re-read it, I realized she had types "all intents and purposes" as "all intensive purposes". We had a back and forth for a few minutes before she conceeded that, in fact, the phrase might really be "all intents and purposes". It was one of those classic things like learning as an adult that unicorns, in fact, do not exist (there is a great "This American Life" on NPR about this type of thing that is hi-larious).
I keep wanting to not stay with that information, in general. That's made even easier by the fact that for all intents and purposes he looks and acts like a normal baby. We had a team meeting with our cardiologist, social worker, and the two clinical nurse specialists to discuss his weight gain or lack thereof and to touch base about short term and long term goals.
The short term goal is that he needs to gain at least 15-30 grams a day and this week we've averaged 10. So to accomplish more weight gain, we need to seriously bump up his calories and the only way to do that without stressing him too much is formula fortifier. Laura's really concerned that this will mean the end of breast feeding because the fortifier keeps him feeling really full but they're keeping him on the every three hour schedule so he might not ever really get hungry. We're having to let go of what we want ideally in favor of what's medically necessary for him to have a better chance to heal.
We're definitely not going home next week. Dr Rosenfeld explained whywe might have gotten that message from other doctors. For other cardiac patients the criteria for going home is usually are they gaining weight and not much else. Simon's not dealing with a structural defect or post op recovery, he's dealing with weak, sick muscle and that's different and more complicated than a surgical recovery where the muscle is basically healthy but injured in some way. Ultimately Dr. Rosenfeld is the final say in whether Simon stays or goes, which is good to know, b/c there are so many people in the mix right now. It was a good meeting with a lot of information, some pieces harder to hear than others.
It was really challenging to go immediately from this team meeting about Simon not really being much better, directly into a work conference call that I was already late to. I feel like I should almost just go back to work full time because who knows how long this will go on and at the same time how can I possibly leave Laura and Simon in the hospital for that many hours and not be with them. This whole thing just feels insane. Methinks I should play the lottery.
There's been discussion about Simon getting a more permanent IV line which would involve a surgical procedure (since they can't seem to get a PICC line in despite at least four attempts). It's both terrifying and a little bit of a relief to think of that type of IV. He'd have it for up to 6 months and they'd be able to draw labs and give him medication should he need it. We'll find out in the next day or two. Kind of a rough day.
A sweet note today- Our friends Angie and Elizabeth who have two small boys (four months apart!) brought us homemade food. (You can read their article in the latest Curve magazine as to why it's such a big deal that they made us homemade lasagna complete with noodles that they made themselves).
Laura says: I don't really know what to write. I'm a little tapped out right now. The visits and gifts are amazing.
My heart doesn't know what to do with the sweetness of time with Simon where he presents somewhat normally, nuzzles into my neck, takes better and better to nursing, AND still is a very sick boy on the inside who's heart is not working any where near well enough.
That's all I got right now.
p.s. just had an experience that made me laugh so hard I cried. I was dictating this blog post to Laura while I held Simon and when I went to re-read it, I realized she had types "all intents and purposes" as "all intensive purposes". We had a back and forth for a few minutes before she conceeded that, in fact, the phrase might really be "all intents and purposes". It was one of those classic things like learning as an adult that unicorns, in fact, do not exist (there is a great "This American Life" on NPR about this type of thing that is hi-larious).
Wednesday, August 20, 2008
Two Steps Forward, One Step Back
Another big day in the ICU. We're back in the Annex in our luxurious bay #22 complete with picture window and while it was so exciting to be "wireless" for a while, it was not to last. I came in this morning and had a delightful two hours with Shimmy walking around his bed, dancing, looking out the window, rubbing heads, and just loving not being concerned with tubes. During rounds though a couple of things came up and Simon needs to have his PICC line reinstated and go back on Heparin. His Cumiden levels were not quite up to snuff (that's the oral substitute for Heparin that thins the blood so it can be pumped easier) and the PICC is also an essential piece of equipment on the off chance that Simon's heart gets tired again.
So Toshi was called and I started to feel nauseous just thinking about the 4 hours it took last time to get the fucking line in. It didn't help that at just about the same time all this was decided it was spoken out loud that Simon is in fact still a "very sick baby."
Right. He is.
He's presenting so normal, even better than normal with the turning pages in a book (see video), the more smiles that he's giving, and the new chunkiness he's sporting in his midsection and thighs.
And...he's still weak of heart and not able to sustain his high spirited self without major intervention.
When Toshi came by to do the PICC Simon was fast asleep and that was the condition that I got to hand him off in which was great.
I got a call less than 20 minutes later saying that the line was in and I could come back up and nurse him and gavage him. I was amazed that it took such a short time. When I got back upstairs I was surprised to see his head still free of a line. Meghan the nurse looked a little sad when she saw me and delivered the unfortunate news that Toshi couldn't get the line in but mercifully decided to stop after just two tries. They got a shallow line in to his arm which is a good thing but will be trying to get a PICC in asap which is a crappy thing. It's good that they got a line in because they can start him on the Heparin again which he needs AND when they try for the PICC again they can give him some sedation to make the process a little easier for him (although last time they did the PICC little SHimmy was way pissed and showed it even though he was on at least two doses of different sedatives). The bad news is that they're planning on trying first thing tomorrow and that means that the little man can't catch a break.
My plan is to advocate for them waiting at least a day so that we can space out his more traumatic moments. The nurses say that the shallow line will last at least a day or three and that if need be you can administer Milrinone through it as well a Heparin (the two drugs that he would need to be getting should his status deteriorate). If that's the case then why not wait a day or two before we need to put him through another session of being poked, bled, and crazy out of his mind for possibly hours at a time??
Really, why not?
In other news, we're up to 65 visitors and every body that works here comments on how loved this baby is. They say that they've never had a baby held so much and I can't tell if it's with admiration or some annoyance that they comment "that boy doesn't touch his bed from 7:30 in the morning until 10 at night."
Jaime would like to retract some of the flippant comments regarding the butt hole-less baby. It's quite a bit more serious that we (and the mom) thought and if folks reading could also send some love to baby Brandon and his mom Coco that would be great. He's got a rough road ahead.
My mom and dad are vermont bound and it's been so amazing to have their support through all this. Shimmy had some great moments today soaking up the Fernie and Feileen energy. We'll be conjuring up the Poppa and Mmmmm all the time.
Nursing news: Simon is still challenged and is now liking the pacifier more than the boob. I'm trying hard not to take it personally and not freak out that he's missing out on vital calories. We only get one or two sessions in a day but so far he's still gaining weight at a respectable rate. Amrit says that this is not uncommon and when we're home again we can quickly get right back to it. It will also bring back up the dwindling supply which I'm also trying not to dwell on. Simon is still getting gavaged no matter what every three hours so he's not quite hungry when he's put to breast. And apparently nursing is work.
I never thought so. I leave it at that.
Friends from far away are visiting and it's wonderful to see folk. Hard that it's not a simple catch-up kind of visit but none the less wonderful to see dear friends. (Winter, thank you so much for the Wonder Woman under-roo show. Simon is going to have some odd fetishes when he grows up)
Love to all
Laura
So Toshi was called and I started to feel nauseous just thinking about the 4 hours it took last time to get the fucking line in. It didn't help that at just about the same time all this was decided it was spoken out loud that Simon is in fact still a "very sick baby."
Right. He is.
He's presenting so normal, even better than normal with the turning pages in a book (see video), the more smiles that he's giving, and the new chunkiness he's sporting in his midsection and thighs.
And...he's still weak of heart and not able to sustain his high spirited self without major intervention.
When Toshi came by to do the PICC Simon was fast asleep and that was the condition that I got to hand him off in which was great.
I got a call less than 20 minutes later saying that the line was in and I could come back up and nurse him and gavage him. I was amazed that it took such a short time. When I got back upstairs I was surprised to see his head still free of a line. Meghan the nurse looked a little sad when she saw me and delivered the unfortunate news that Toshi couldn't get the line in but mercifully decided to stop after just two tries. They got a shallow line in to his arm which is a good thing but will be trying to get a PICC in asap which is a crappy thing. It's good that they got a line in because they can start him on the Heparin again which he needs AND when they try for the PICC again they can give him some sedation to make the process a little easier for him (although last time they did the PICC little SHimmy was way pissed and showed it even though he was on at least two doses of different sedatives). The bad news is that they're planning on trying first thing tomorrow and that means that the little man can't catch a break.
My plan is to advocate for them waiting at least a day so that we can space out his more traumatic moments. The nurses say that the shallow line will last at least a day or three and that if need be you can administer Milrinone through it as well a Heparin (the two drugs that he would need to be getting should his status deteriorate). If that's the case then why not wait a day or two before we need to put him through another session of being poked, bled, and crazy out of his mind for possibly hours at a time??
Really, why not?
In other news, we're up to 65 visitors and every body that works here comments on how loved this baby is. They say that they've never had a baby held so much and I can't tell if it's with admiration or some annoyance that they comment "that boy doesn't touch his bed from 7:30 in the morning until 10 at night."
Jaime would like to retract some of the flippant comments regarding the butt hole-less baby. It's quite a bit more serious that we (and the mom) thought and if folks reading could also send some love to baby Brandon and his mom Coco that would be great. He's got a rough road ahead.
My mom and dad are vermont bound and it's been so amazing to have their support through all this. Shimmy had some great moments today soaking up the Fernie and Feileen energy. We'll be conjuring up the Poppa and Mmmmm all the time.
Nursing news: Simon is still challenged and is now liking the pacifier more than the boob. I'm trying hard not to take it personally and not freak out that he's missing out on vital calories. We only get one or two sessions in a day but so far he's still gaining weight at a respectable rate. Amrit says that this is not uncommon and when we're home again we can quickly get right back to it. It will also bring back up the dwindling supply which I'm also trying not to dwell on. Simon is still getting gavaged no matter what every three hours so he's not quite hungry when he's put to breast. And apparently nursing is work.
I never thought so. I leave it at that.
Friends from far away are visiting and it's wonderful to see folk. Hard that it's not a simple catch-up kind of visit but none the less wonderful to see dear friends. (Winter, thank you so much for the Wonder Woman under-roo show. Simon is going to have some odd fetishes when he grows up)
Love to all
Laura
Tuesday, August 19, 2008
Progress!
So...no Milrinone today, no Heparin today, moved back into the Annex and no PICC LINE!!! It closed off and they decided to just take it out and see how he does (after a 5 hour power struggle with our nurse and the resident, not to mention Laura holding Simon through a partial removal that was aborted midway. Simon did not appreciate it).
If he does need another IV, not sure if it will be a PICC or a regular IV. We think PICC because Milrinone needs to be given into a central or close to central vein. Hopefully we won't have to worry about that.
Those of you have visited in the last few days will be very happy to know that Simon got his stinky, smells-like-frat-house head washed.
See exhibit A (favorite nurse Carol after she washed his little head and wrapped it like a diva).
Then we put him to sleep without having to swaddle him or tie his little hands down because the only bad thing he could grab is his NG tube and that's not a huge deal.
If he does need another IV, not sure if it will be a PICC or a regular IV. We think PICC because Milrinone needs to be given into a central or close to central vein. Hopefully we won't have to worry about that.
Those of you have visited in the last few days will be very happy to know that Simon got his stinky, smells-like-frat-house head washed.
See exhibit A (favorite nurse Carol after she washed his little head and wrapped it like a diva).
Then we put him to sleep without having to swaddle him or tie his little hands down because the only bad thing he could grab is his NG tube and that's not a huge deal. Before PICC removed- see crazy ports and smelly, smelly tape
After PICC- smelling good, silly bald spot, peaceful baby, happy Mommies
Our nurse gave me the ports (they separate) so I can make pasties out of them someday. I think I have a naughty nurse costume in the works. How wrong is that?
Laura's parents leave tomorrow which feels pretty crazy. They've been our right hands through this whole thing. Laura now will be at the hospital most mornings from 7:30 am to 1:30 pm by herself. That might be a good time for visitors if people have mornings free.
P.S. Simon learned how to turn pages while in the ICU. Seriously- look at the video.
Terror and Delight
It's been quite a day here. The biggest news is that this morning around 10am Simon was taken off his Milrinone. He will be closely observed for about 48 hours but if his numbers stay stable and we don't really see a change in his fussiness, sleep, or regular personality, we are that much closer to going home. I have to say that when I heard that a part of me wanted to jump for absolute joy and another part of me wanted to yell at the doctors that they must be crazy and have their heads up their asses.
We're learning how to administer his oral medications (he'll have 4-5) and he may be sent home with an NG tube (feeding tube through his nose). I can't believe that they may discharge him at some point next week. It feels sort of surreal. We still don't really know what the limitations will be in terms of if/where we can take him outside of the house but it's incredible to think that we could have a little bit more normal.
He totally smells like a frat boy right now b/c they don't want to change the dressing on his PICC line because it makes it move and he's a sweaty cardiac baby so he's a little funky. Guess it's just a warm up for Junior High. I can't wait to take a shower with him again and wash all this hospital off...
Another funny note-
Last week Laura called Verizon to see what we could set up for the next month because we were over on our minutes with all this happening. She ended up talking to the rep for like 20 minutes and the woman wanted to know all about Simon and what was happening. We gave her the blog address and yesterday she left a comment. Even the Verizon lady is thinking about him!
We're learning how to administer his oral medications (he'll have 4-5) and he may be sent home with an NG tube (feeding tube through his nose). I can't believe that they may discharge him at some point next week. It feels sort of surreal. We still don't really know what the limitations will be in terms of if/where we can take him outside of the house but it's incredible to think that we could have a little bit more normal.
He totally smells like a frat boy right now b/c they don't want to change the dressing on his PICC line because it makes it move and he's a sweaty cardiac baby so he's a little funky. Guess it's just a warm up for Junior High. I can't wait to take a shower with him again and wash all this hospital off...
Another funny note-
Last week Laura called Verizon to see what we could set up for the next month because we were over on our minutes with all this happening. She ended up talking to the rep for like 20 minutes and the woman wanted to know all about Simon and what was happening. We gave her the blog address and yesterday she left a comment. Even the Verizon lady is thinking about him!
Monday, August 18, 2008
Shuffle, Shuffle
So...just as we were getting cozy, they decided the census in the Annex was so low that they needed to move the 2 of us left (out of 6 beds) back into the main ICU where they had empty spots. ARGH!
Simon seems fine over there but it bites for the adults who have to cram and move all the crap we brought to the hospital (taking 1/2 of it home tonight) and deal with the noise and crazy energy. Hopefully it will only be for a day or 2.
Had a bit of drama today, mostly caused by me (Jaime). Laura has had pain in her calf on and off since her pregnancy and it' s back. It was a bit swollen behind her knee and hurt so badly she was limping so I forced her to go to the doctor to rule out a blood clot (my boss had one that caused a pulmonary embolism and put her in the hospital). She's fine and it's probably just a pulled muscle but I was not about to have her drop from an embolism in the middle of all this. I told her it's the price she pays for being married to a slight hypochondriac. It spills over sometimes.
Also, unfortunately, between when she called the doctor and we got to the doctors office, Laura lost her wallet. We're in the cafeteria calling all our dang credit card companies and bank.
Today's theme has been chaos.
Simon seems fine over there but it bites for the adults who have to cram and move all the crap we brought to the hospital (taking 1/2 of it home tonight) and deal with the noise and crazy energy. Hopefully it will only be for a day or 2.
Had a bit of drama today, mostly caused by me (Jaime). Laura has had pain in her calf on and off since her pregnancy and it' s back. It was a bit swollen behind her knee and hurt so badly she was limping so I forced her to go to the doctor to rule out a blood clot (my boss had one that caused a pulmonary embolism and put her in the hospital). She's fine and it's probably just a pulled muscle but I was not about to have her drop from an embolism in the middle of all this. I told her it's the price she pays for being married to a slight hypochondriac. It spills over sometimes.
Also, unfortunately, between when she called the doctor and we got to the doctors office, Laura lost her wallet. We're in the cafeteria calling all our dang credit card companies and bank.
Today's theme has been chaos.
Sunday, August 17, 2008
Settling in
Sunday Night:
So here we are at the beginning of week three and Simon, Jaime, and I seem to be settling in here in bay 22 in the ICU Annex. Simon will have another echo tomorrow but we're not expecting to see anything different which is actually a good thing given that they're slowly weaning him from the Milrinone. The wean has also begun on the Heparin (blood thinner) with a subsequent substitution to the oral medication that we can take him home on. It's all good. It's not great but we're hanging on to the theory that every day that he's stable he's actually another day into his recovery.
Monday Morning:
So his echo cardiogram doesn't look any different but they weren't expecting it too (slow and steady, slow and steady). The big news though is that they're starting a more aggressive weaning of his two heart medications. The hope is that if he tolerates that, we can get rid of his PICC line by the end of the week!!! No more needles in his head!! They'll need to give him his Heparin via a subcutaneous line but that's tiny compared to the cyborg like set up he has right now.
The other crazy thing is that they're starting to let Jaime and I take over a lot of care so right now I have three syringes waiting beside me for when he wakes up that I will personally administer to him. Simon will be getting most of his meds orally right now and those are things that they encourage parents to be doing even before he leaves the hospital. It's funny to think that all of a sudden Shimmy's flavor experience is about to triple. He's going from knowing just what breastmilk tastes like to experiencing a minty flavor and couple of different fruity flavors. That's crazy. I guess he also knew what Symethicone tasted like but that was mostly just a sweet tasting gas-be-gone thing that we used to treat him with when he was super farty.
He's still nursing somewhat inconsistently throughout the day but better when he does in fact latch on. The little sucker nearly emptied my boob this morning and took his 75 ML's via his NG tube too. He's gaining weight a little slower than when he was on fortified breastmilk but still at a more than respectable rate. Yay for no bovine powder (for the time being at least- I can be happy with that and just fine if he needs it again).
Still no answer as to how this all started. They're closer to ruling out metabolic with just a test or two due to come back this week and the viral test results should also be back sometime in the next week or two. Dr Kate, when asked by my mom to say the most positive thing she could, said "I think we can be cautiously optimistic." Cautious feels right. I love thinking about Shimmy's first birthday party and his first steps and what type of pork product he'll enjoy the most (remember he doesn't need to be worried about a low fat diet :-) but I am also feeling very tender and raw about what we've been through and don't want to get blindsided by bad news. I want to be somewhat prepared. It's a delicate balancing act and while I'd much rather live in the place of birthday parties and first steps I feel a little need for the protective armor of the other side.
So, I think we're still here for a couple of weeks or more but the sun is breaking through the clouds.
Love to all
Laura
So here we are at the beginning of week three and Simon, Jaime, and I seem to be settling in here in bay 22 in the ICU Annex. Simon will have another echo tomorrow but we're not expecting to see anything different which is actually a good thing given that they're slowly weaning him from the Milrinone. The wean has also begun on the Heparin (blood thinner) with a subsequent substitution to the oral medication that we can take him home on. It's all good. It's not great but we're hanging on to the theory that every day that he's stable he's actually another day into his recovery.
Monday Morning:
So his echo cardiogram doesn't look any different but they weren't expecting it too (slow and steady, slow and steady). The big news though is that they're starting a more aggressive weaning of his two heart medications. The hope is that if he tolerates that, we can get rid of his PICC line by the end of the week!!! No more needles in his head!! They'll need to give him his Heparin via a subcutaneous line but that's tiny compared to the cyborg like set up he has right now.
The other crazy thing is that they're starting to let Jaime and I take over a lot of care so right now I have three syringes waiting beside me for when he wakes up that I will personally administer to him. Simon will be getting most of his meds orally right now and those are things that they encourage parents to be doing even before he leaves the hospital. It's funny to think that all of a sudden Shimmy's flavor experience is about to triple. He's going from knowing just what breastmilk tastes like to experiencing a minty flavor and couple of different fruity flavors. That's crazy. I guess he also knew what Symethicone tasted like but that was mostly just a sweet tasting gas-be-gone thing that we used to treat him with when he was super farty.
He's still nursing somewhat inconsistently throughout the day but better when he does in fact latch on. The little sucker nearly emptied my boob this morning and took his 75 ML's via his NG tube too. He's gaining weight a little slower than when he was on fortified breastmilk but still at a more than respectable rate. Yay for no bovine powder (for the time being at least- I can be happy with that and just fine if he needs it again).
Still no answer as to how this all started. They're closer to ruling out metabolic with just a test or two due to come back this week and the viral test results should also be back sometime in the next week or two. Dr Kate, when asked by my mom to say the most positive thing she could, said "I think we can be cautiously optimistic." Cautious feels right. I love thinking about Shimmy's first birthday party and his first steps and what type of pork product he'll enjoy the most (remember he doesn't need to be worried about a low fat diet :-) but I am also feeling very tender and raw about what we've been through and don't want to get blindsided by bad news. I want to be somewhat prepared. It's a delicate balancing act and while I'd much rather live in the place of birthday parties and first steps I feel a little need for the protective armor of the other side.
So, I think we're still here for a couple of weeks or more but the sun is breaking through the clouds.
Love to all
Laura
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 story...one 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.
Another amazing story...one 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
TGIF
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...
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 hungry...it'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.
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 hungry...it'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
Laura
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
Laura
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.
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.
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.
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:
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.
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.
Saturday, August 9, 2008
Up and Down
As Jaime said today had it's moment's. For the first 3/4 of the day it was really about feeling like I was going to lose my mind (seeing Simon with unadulterated fear in his eyes) but then we ended the day on a huge high note complete with photos. Check him out...
I think it all started with a little Pop Culture. (You need to click on this one to see his expression)
Until finally he could repress it no longer....that smile!! The one that we'd been missing for the last week. It's back.
Granted it's well balanced with lots of other expressions letting us know how he's feeling about the needles and lines and poking and prodding but holy crap the smiles tonight were a huge gift. It's kinda like when he wasn't in the hospital and would take us right to the edge (with sleeping, baths, etc) and then throw us a bone. Big bone today :-D
I think it all started with a little Pop Culture. (You need to click on this one to see his expression)
Then...tucked neatly into his bed, Shimmy enjoyed some lullabies from his Mama
Until finally he could repress it no longer....that smile!! The one that we'd been missing for the last week. It's back.
Granted it's well balanced with lots of other expressions letting us know how he's feeling about the needles and lines and poking and prodding but holy crap the smiles tonight were a huge gift. It's kinda like when he wasn't in the hospital and would take us right to the edge (with sleeping, baths, etc) and then throw us a bone. Big bone today :-DLove to you all.
One week later
Today has been a little rough. When Laura and I called in this morning to check on Simon to see how his night was, the nurse said he was pretty agitated all night and didn't really sleep. My poor Mom was at the hospital with him, so she didn't get much sleep either.
I kind of think it's the "he's getting better so he's feeling worse" thing. He hasn't slept all day so far, minus a few minutes here and there, despite a sedative! He's mostly just crying and irritated and it's making Laura feel like she's going to lose her mind. I feel mostly terrible for him and occasionally a bit woozy from the stress of it.
We have turned the right side of his head into a freaking arts and crafts project, trying to keep his Intra-Jugular line (IJ) from getting pulled out. The kid has an IV in his jugular. It's so crazy. We've tried everything from rolls and rolls of tape to what I thought was our piece de resistance last night- wrapping gauze around his head until he looked like a WWI fighter pilot who crashed down in some foreign land.
I kind of think it's the "he's getting better so he's feeling worse" thing. He hasn't slept all day so far, minus a few minutes here and there, despite a sedative! He's mostly just crying and irritated and it's making Laura feel like she's going to lose her mind. I feel mostly terrible for him and occasionally a bit woozy from the stress of it.
We have turned the right side of his head into a freaking arts and crafts project, trying to keep his Intra-Jugular line (IJ) from getting pulled out. The kid has an IV in his jugular. It's so crazy. We've tried everything from rolls and rolls of tape to what I thought was our piece de resistance last night- wrapping gauze around his head until he looked like a WWI fighter pilot who crashed down in some foreign land.
Unfortunately, he was not pleased about our artwork and stayed up, furious and scowling (it pushed his little eyebrows down so he looked like a menacing prizefighter) until we ditched it this morning. The nurse added a spacer so the big arm of the ports is a little further down the line and pulls less at the site where it's attached to him. He already pulled out one of the sutures that was holding it in, days ago. Scrappy little baby.
I also decided on his stage name. When he gets fed anything through his Naso-gastric tube (NG tube) it's called lavaging it (pronounced leh-vahge), so I think he shall henceforth be known as Shimmy Lavage while on stage.
Presenting Scarlett Bottoms and her son, Shimmy Lavage!
It's got a nice ring to it, dontcha think?
The bounty just keeps coming. Had biscuits, raspberry empanadas and a plate full of bacon dropped off for breakfast, got incredible pulled pork with all the fixins plus cookies at lunch and a bunch of lovelies from my dance troupe attacked our backyard. This morning they weeded, mowed and planted indigenous blueberries while Roxie ran around with her best friend, Murphy, and one of my troupemate's children picked blackberries and fed them to the puppies. Seriously, the love is out of control.
We're going to stay over tonight and just take turns holding him. Dr. Newman, one of the ICU doc whom we love, heard about his night and said she just thinks he wants to be held. We were pretty "attachment parenting" before all this, so I'm sure sleeping alone in his bed all night is a rude shock. I think that's the thing I miss most right now- I love just throwing him in the orange sling and walking around with him, snuggled against me, watching everything passing by until he falls asleep. I keep going on little walks around the neighborhood near the hospital and thinking, "Oh, I can't wait to take Shimmy on this walk" and then realizing that that's not going to happen any time soon. Ah, that it were so simple as an IV pole.
My goal is one thing removed every day. They took him off the positive pressure oxygen, which basically means he's now breathing on his own, without any air being forced in through his nose. Which reminds me of a really funny thing that happened in the first few days here.
The nurses were changing shifts at one point and our nurse was giving the new one all the relevent data. The new one asked if he was on "Roumaire" and our nurse said no. I knew he was on a lot of meds, but didn't remember hearing about that one, so I asked what Roumaire is for. She looked at me funny and then, realizing my confusion, said, "Room air". I just about fell on the floor laughing. Reminds me of a funny story about my stepdad and lasagna, but that's for another day...
I also decided on his stage name. When he gets fed anything through his Naso-gastric tube (NG tube) it's called lavaging it (pronounced leh-vahge), so I think he shall henceforth be known as Shimmy Lavage while on stage.
Presenting Scarlett Bottoms and her son, Shimmy Lavage!
It's got a nice ring to it, dontcha think?
The bounty just keeps coming. Had biscuits, raspberry empanadas and a plate full of bacon dropped off for breakfast, got incredible pulled pork with all the fixins plus cookies at lunch and a bunch of lovelies from my dance troupe attacked our backyard. This morning they weeded, mowed and planted indigenous blueberries while Roxie ran around with her best friend, Murphy, and one of my troupemate's children picked blackberries and fed them to the puppies. Seriously, the love is out of control.
We're going to stay over tonight and just take turns holding him. Dr. Newman, one of the ICU doc whom we love, heard about his night and said she just thinks he wants to be held. We were pretty "attachment parenting" before all this, so I'm sure sleeping alone in his bed all night is a rude shock. I think that's the thing I miss most right now- I love just throwing him in the orange sling and walking around with him, snuggled against me, watching everything passing by until he falls asleep. I keep going on little walks around the neighborhood near the hospital and thinking, "Oh, I can't wait to take Shimmy on this walk" and then realizing that that's not going to happen any time soon. Ah, that it were so simple as an IV pole.
My goal is one thing removed every day. They took him off the positive pressure oxygen, which basically means he's now breathing on his own, without any air being forced in through his nose. Which reminds me of a really funny thing that happened in the first few days here.
The nurses were changing shifts at one point and our nurse was giving the new one all the relevent data. The new one asked if he was on "Roumaire" and our nurse said no. I knew he was on a lot of meds, but didn't remember hearing about that one, so I asked what Roumaire is for. She looked at me funny and then, realizing my confusion, said, "Room air". I just about fell on the floor laughing. Reminds me of a funny story about my stepdad and lasagna, but that's for another day...
Friday, August 8, 2008
Endless Bounty
I just stood in the living room with my head thrown back, laughing, at the overflowing bounty. We just walked in the door at 10 pm to get some sleep, after stopping by the security desk to give them cookies that Joan baked (need to butter those guys up since we're making them work overtime with our entourage).
We called our friend Robert to see how Roxie is doing (he and his boyfriend Reid are taking acre of her) . He mentioned that he didn't have a chance to put the food that got left for us into the fridge. We'd already been home 10 minutes and hadn't even seen that we had food and if we hadn't called him, we would have just gone to bed and let a delicious meal from Alexis go bad (split pea soup, salad, homemade goat cheese and mozzarella pizza and cookies!). Then I walked into the backyard to see that Cherry had mowed our lawn. This is just today...
We went on a walk today to Bake Sale Betty's and a complete stranger said, "Jaime and Laura? I'm a friend of your friend's friend and I just wanted to say hi and ask how Simon is doing". I'm beginning to feel connected to every single person on the planet through Simon. It's the most amazing feeling.
I can't begin to describe how it feels to have so much love coming to us, from so many different directions, in so many different ways. Everyone is showing up in their own way. Folks that can't handle the hospital are helping us at home. Folks that bake are baking. Folks that know and love our dog are taking care of her. Folks that don't even know us are sending us messages from all over the planet, just to let us know that they're there and they know. That's the best thing for me right now. To know that thousands of people know and are sharing our burden with us.
I just keep whispering to Simon when he cries, "I know. I know this is happening to you. I see it. I'm right here and I know". I want him to know that this is really happening and that he is not alone. I plan to keep talking about this experience long before he has words- tell him the stories again and pave the way for him to process it all because he's going to have some serious shit to work out.
The things that have happened to him (and to us) I wouldn't wish on my worst enemy...
I do think that this is one of those experiences that will make our family stronger. One of our doctors had a little chat with us about how things like this bring some people together and tear others apart. It was a wise word of warning...
The very first night (or morning) when Laura and I sat in the conference room off the ICU and lost our shit as they intubated our son to keep him alive, I grabbed her face, looked her in the eye, and told her that the most important thing to me through all this is our relationship. I am not willing to be one of those couples that falls apart. Shimmy came to us because we are a powerful force *together* and anything I can do to keep us going strong, I will do. Not splitting up at night is the most obvious way we are doing this. Sometimes it physically hurts to leave him by himself in the hospital overnight, but some nights we just have to. He has a nurse just there to watch him (the highest paid babysitter we'll ever have, one of them said) and I think it's more important for us to be intact. It's a horrible choice to have to make but it's one I can live with...for now.
Okay, off to watch the finale of "So You Think You Can Dance" and then to sleep.
We called our friend Robert to see how Roxie is doing (he and his boyfriend Reid are taking acre of her) . He mentioned that he didn't have a chance to put the food that got left for us into the fridge. We'd already been home 10 minutes and hadn't even seen that we had food and if we hadn't called him, we would have just gone to bed and let a delicious meal from Alexis go bad (split pea soup, salad, homemade goat cheese and mozzarella pizza and cookies!). Then I walked into the backyard to see that Cherry had mowed our lawn. This is just today...
We went on a walk today to Bake Sale Betty's and a complete stranger said, "Jaime and Laura? I'm a friend of your friend's friend and I just wanted to say hi and ask how Simon is doing". I'm beginning to feel connected to every single person on the planet through Simon. It's the most amazing feeling.
I can't begin to describe how it feels to have so much love coming to us, from so many different directions, in so many different ways. Everyone is showing up in their own way. Folks that can't handle the hospital are helping us at home. Folks that bake are baking. Folks that know and love our dog are taking care of her. Folks that don't even know us are sending us messages from all over the planet, just to let us know that they're there and they know. That's the best thing for me right now. To know that thousands of people know and are sharing our burden with us.
I just keep whispering to Simon when he cries, "I know. I know this is happening to you. I see it. I'm right here and I know". I want him to know that this is really happening and that he is not alone. I plan to keep talking about this experience long before he has words- tell him the stories again and pave the way for him to process it all because he's going to have some serious shit to work out.
The things that have happened to him (and to us) I wouldn't wish on my worst enemy...
I do think that this is one of those experiences that will make our family stronger. One of our doctors had a little chat with us about how things like this bring some people together and tear others apart. It was a wise word of warning...
The very first night (or morning) when Laura and I sat in the conference room off the ICU and lost our shit as they intubated our son to keep him alive, I grabbed her face, looked her in the eye, and told her that the most important thing to me through all this is our relationship. I am not willing to be one of those couples that falls apart. Shimmy came to us because we are a powerful force *together* and anything I can do to keep us going strong, I will do. Not splitting up at night is the most obvious way we are doing this. Sometimes it physically hurts to leave him by himself in the hospital overnight, but some nights we just have to. He has a nurse just there to watch him (the highest paid babysitter we'll ever have, one of them said) and I think it's more important for us to be intact. It's a horrible choice to have to make but it's one I can live with...for now.
Okay, off to watch the finale of "So You Think You Can Dance" and then to sleep.
Too Hard
How different a post from this morning. Simon is still stable and his stats aren't any different but F***'n A, the ups and downs are really hard.
He started to pull on his jugular line again and Maria (tonight's nurse) and I worked for about an hour taping the shit out of the little man. Once again I was holding my son down while he cried and used every sad angry pissed off expression he knew how to let me know that this was something that he hated. Again, there's that impulse in me to rip out all the lines, scoop him up and just wrap him in my arms take him home and stay in the shower with him for days to wash all this away. Since I can't do that and he's not going to be better anytime soon the impulse then is for me to run and simultaneously hate myself for wanting that. Holy shit this is hard. Hardest thing ever.
How do you handle this for 4-6 weeks? (That's the newest timeline). I mean, I know how. I know that there are more ups and downs to come and it's the ups that feed you and taking care of ourselves is so important. And with the downs, I have to lean on folks that are here and cry and know that it's a marathon. Yeah that.
Simon is resting now and we're going to keep in his bed and just do a bottle feed tonight so as to avoid the disruption of transferring him from the crib to my lap. With so many lines coming out of the sweet little boy it's hard to reconcile the bliss of having him at my breast with moving him and the risk of dislodging his jugular line.
Tonight the risk wins out and we bottle feed. Tomorrow, we'll see. It's so clear that he loves being back on my boob and it's so good for both of us. We'll see.
Thanks to all for reading and sending love and light.
He started to pull on his jugular line again and Maria (tonight's nurse) and I worked for about an hour taping the shit out of the little man. Once again I was holding my son down while he cried and used every sad angry pissed off expression he knew how to let me know that this was something that he hated. Again, there's that impulse in me to rip out all the lines, scoop him up and just wrap him in my arms take him home and stay in the shower with him for days to wash all this away. Since I can't do that and he's not going to be better anytime soon the impulse then is for me to run and simultaneously hate myself for wanting that. Holy shit this is hard. Hardest thing ever.
How do you handle this for 4-6 weeks? (That's the newest timeline). I mean, I know how. I know that there are more ups and downs to come and it's the ups that feed you and taking care of ourselves is so important. And with the downs, I have to lean on folks that are here and cry and know that it's a marathon. Yeah that.
Simon is resting now and we're going to keep in his bed and just do a bottle feed tonight so as to avoid the disruption of transferring him from the crib to my lap. With so many lines coming out of the sweet little boy it's hard to reconcile the bliss of having him at my breast with moving him and the risk of dislodging his jugular line.
Tonight the risk wins out and we bottle feed. Tomorrow, we'll see. It's so clear that he loves being back on my boob and it's so good for both of us. We'll see.
Thanks to all for reading and sending love and light.
A new day, a new dawn
Short and sweet since I want to get back into the ICU. Our amazing midwife and lactation specialist Amrit came by yesterday (she stayed for hours) and as usual worked some miracles.
Simon got on the breast last night (just for suckling while my breast milk went into his NG tube so that he didn't have to work so hard) and the little man just settled into a blissful state for about 15 minutes. They've upped his intake from 15cc's to 18cc's and then again this morning to 24cc's!! Yay breastmilk!!
This morning Simon got on the boob again and is now napping in his Mama's lap. Before falling asleep though he was giving both of us amazing eye contact and with just a little coaxing, gave both of us an incredibly familiar full face light up his eyes SMILE!!! We nearly burst from joy.
His echo cardiogram isn't looking that different but they said that's to be expected and that his other functions and demeanor are getting that much stronger is something to hold dearly on to.
The other amazing news is that they are thinking about moving him next door which although is still the ICU is called the Annex and is a small but definite step down in the care that he needs.
Jaime and I are well rested today and really feeling the 8/8/08 luckiness that's supposed to be in the air.
Rock on Little Man!!
Thursday, August 7, 2008
Long Journey thoughts
The day has been a long one and while Simon is still stable and getting stronger on a minute level there are moments that are just frickin' hard.
This afternoon after Simon spent a wonderful hour+ in my lap napping he got his first bottle feed!!
He had five minutes to see how much he could drink out of 15cc's. Only five minutes so that he wouldn't tire himself out and only 15cc's as to not overload his exhausted little system. For the first 2.5 minutes it seemed like he had just forgotten what to do with something in his mouth. Then he started to chomp a little getting a few drops here and there. And then during the last 15 seconds he all of a sudden remembered that he likes breastmilk quite a bit and sucked about 10 cc's down in three strong gulps. Later today we'll up the amount and then give Little Shimmy some "recreational time on the breast." That might be my new favorite-est combination of words ever. Say it out loud. It just rolls off the tongue
That was a wonderful high point.
Then came the harder part. Simon's jugular line was being pulled taut and actually started to pull out a little and we needed to tape that F****er down so as not to risk needing to re-poke him. It took both Jaime and I assisting Margaret, another amazing nurse, several minutes of holding, taping, re-taping, maneuvering, and repositioning Simon to get a somewhat stable set up. I thought I was going to lose it by the time we were finished. I don't know that I can do that again. It just hurt my heart to be holding him down and causing so much pain and frustration for him.
My head knows that it was imperative but my heart felt torn from my body and I thought I might faint and/or need to run out of the room- something I never ever imagined that I would feel in connection with my sweet little boy Shimmy. Blech blech and double blech.
The shine from yesterday has worn off a little and there's more of the realization that we are just in for a very long journey with so many ups and downs in store for us. Our work is to relish and delight in the highs and try and move quickly through the harder times, being as present as possible for them and then looking towards that next chance to celebrate his indomitable strength and spirit.
Love to you all out there pulling for him.
This afternoon after Simon spent a wonderful hour+ in my lap napping he got his first bottle feed!!
He had five minutes to see how much he could drink out of 15cc's. Only five minutes so that he wouldn't tire himself out and only 15cc's as to not overload his exhausted little system. For the first 2.5 minutes it seemed like he had just forgotten what to do with something in his mouth. Then he started to chomp a little getting a few drops here and there. And then during the last 15 seconds he all of a sudden remembered that he likes breastmilk quite a bit and sucked about 10 cc's down in three strong gulps. Later today we'll up the amount and then give Little Shimmy some "recreational time on the breast." That might be my new favorite-est combination of words ever. Say it out loud. It just rolls off the tongue
That was a wonderful high point.
Then came the harder part. Simon's jugular line was being pulled taut and actually started to pull out a little and we needed to tape that F****er down so as not to risk needing to re-poke him. It took both Jaime and I assisting Margaret, another amazing nurse, several minutes of holding, taping, re-taping, maneuvering, and repositioning Simon to get a somewhat stable set up. I thought I was going to lose it by the time we were finished. I don't know that I can do that again. It just hurt my heart to be holding him down and causing so much pain and frustration for him.
My head knows that it was imperative but my heart felt torn from my body and I thought I might faint and/or need to run out of the room- something I never ever imagined that I would feel in connection with my sweet little boy Shimmy. Blech blech and double blech.
The shine from yesterday has worn off a little and there's more of the realization that we are just in for a very long journey with so many ups and downs in store for us. Our work is to relish and delight in the highs and try and move quickly through the harder times, being as present as possible for them and then looking towards that next chance to celebrate his indomitable strength and spirit.
Love to you all out there pulling for him.
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