Mommies loving Simon
The New York Contingent gets some face time
Simon wondering about his new 'do
Close up with B-squared
Thursday, August 7, 2008
And yet more
Simon stopping to smell the roses (from Mamaw D's garden)
Mommies loving Simon
The New York Contingent gets some face time
Simon wondering about his new 'do
Close up with B-squared
Mommies loving Simon The New York Contingent gets some face timeSimon wondering about his new 'do
Close up with B-squared
Big Boy Bed
Well, Simon just graduated from a super high tech isolette bed to an actual crib. Doing much better. Had a good night. He's actually crying today which is sad a little, but a bit comforting b/c it's a normal response to what's happening. Yesterday he was just pretty quiet and looking around which was a little eerie.
On another fun note...
I just got off the phone with my insurance company. Evidently Children's Hospital Oakland is not contracted with John Muir, which would have given us 100% coverage. Instead, it's contracted with Beechstreet, which is a part of our insurance, which gives us 75% coverage. I just did the math. If this costs $1 million, which I'm guessing it easily will, that's...um...$250,000 we would be paying. Uh, yeah. Not so much.
I'm praying that we can do what Laura did when she had her motorcycle accident. Her bill was $100,000 and they offered to give her ten cents on the dollar, so they only had to pay $10,000.
Simon is so going to a U.C. school. No private school unless he can write a kickass essay about this whole thing that will win him a full scholarship somewhere :-)
On another fun note...
I just got off the phone with my insurance company. Evidently Children's Hospital Oakland is not contracted with John Muir, which would have given us 100% coverage. Instead, it's contracted with Beechstreet, which is a part of our insurance, which gives us 75% coverage. I just did the math. If this costs $1 million, which I'm guessing it easily will, that's...um...$250,000 we would be paying. Uh, yeah. Not so much.
I'm praying that we can do what Laura did when she had her motorcycle accident. Her bill was $100,000 and they offered to give her ten cents on the dollar, so they only had to pay $10,000.
Simon is so going to a U.C. school. No private school unless he can write a kickass essay about this whole thing that will win him a full scholarship somewhere :-)
Wednesday, August 6, 2008
Dr. Hunkypants
Oh, and this is his Cardiologist. Dr. Howard Rosenfeld (aka Dr. Hunkypants)
Not kidding. This is not a T.V. show.
Tubin' it no more
Wow. What a difference 24 hours makes. Simon is now off all sedatives and pain killers, has had 2 IVs taken out and been fed breast milk 2x via his feeding tube.
Oh yeah, and at 10:30 am, Simon got his breathing tube out!!!!
He was a little punky right after and then just took off with flying colors. He's back. Nurses have been walking by saying, "Oh! Now he sort of looks like that baby in the pictures!" We've been in incredibly high spirits.
Laura, Laura's father and I have all gotten to hold him for hours. They took his blood gasses right after he got off the machine and they were OK, but then, after we'd held him for a few hours, they took them again and when our nurse got the results, she actually cheered out loud because they were so good. She said they were so good because of the holding and we'd like to agree.
We've had 3 new nurses today and all have been fantastic. Louanne was our nurse starting this morning and she was a total mother hen and correctly remembered which of us was "Mama" and which of us is "Mommy"- something we sometimes can't even remember. Then we had Cissel, the sweet Norweigan and now we have Kathy, the super sassy blonde with a shoe fetish who is the blonde version of our favorite night nurse, Carol.
A few highlights:
- Today our friend Eric goes to security desk to get a visitor tag. Security guard at hospital with 191 beds says, "let me guess-for the Fitch-Jenett baby?".
- Respiratory therapist chats with me at the sink and says, "wow, do you guys come from really big families or something?" I reply that I'm an only child of an only child of an only child and she shakes her head in amazement and says, "We have so many babies in here with NO visitors. You guys have a village. " I just smiled and said, "yes, we do."
- Turns out that our friend from the dog park is the head of oncology here and has been totally briefed on our situation, his patients often have this condition and he's trained 1/2 the doctors we're working with. He'll be by every day to check on things and made it clear he'll kick ass if need be (we've had the MOST amazing care so it won't be necessary)
- We're the favorite hang out spot for all the queer staff (of which there are evidently many), including the super cute resident, Dan, who is totally George from Grey's Anatomy, but gay.
- We're estimating that Simon has over 10,000 people (including 8,000 Buddhists) sending him love, praying for him, visualizing health for him and that know about him.
- Simon has had *32* visitors and he's only been here for 5 days.
- Our friend Joan's colleague at the Native American AIDS project made him a dream catcher with Hawk and Eagle feathers and their drum circle has a song just for him they'll sing every Monday and Tuesday until he's out of the hospital.
- We've put up signs in the waiting room with his picture saying that his Mommies want to share the love and support that they're getting while he's here and to PLEASE eat the food we've left out. We've gotten incredible feedback from other people waiting here that they're really appreciating the overflow of love and food.
-Dr. Mohler, the pediatrician who admitted him at John Muir, came here to see him on Saturday just because we made such an impression on her and she lives in our neighborhood. We reminded her so much of a family she worked with years ago during her residency here. The baby had the same condition and is A-OK now!
Bottom line...we have a super long road ahead of us, but we are at least on the road now. There may be setbacks, but the extubation was a big test and so far Shimmy is passing and it looks like it's only going to get better from here. Nurses keep commenting on how obviously loved he is and how much it's helping his healing. They see all ends of the spectrum and I'm going to take their word as Gospel and ask y'all to keep it coming.
I keep visualizing this intense force field around him just pulsing with a low "thrum-thrum" sound. He's so present now. It's delicious. We honestly don't know that he would be at this high point without all the goodness coming at him.
Thank you.
Thank you.
Thank you.
Oh yeah, and at 10:30 am, Simon got his breathing tube out!!!!
He was a little punky right after and then just took off with flying colors. He's back. Nurses have been walking by saying, "Oh! Now he sort of looks like that baby in the pictures!" We've been in incredibly high spirits.
Laura, Laura's father and I have all gotten to hold him for hours. They took his blood gasses right after he got off the machine and they were OK, but then, after we'd held him for a few hours, they took them again and when our nurse got the results, she actually cheered out loud because they were so good. She said they were so good because of the holding and we'd like to agree.
We've had 3 new nurses today and all have been fantastic. Louanne was our nurse starting this morning and she was a total mother hen and correctly remembered which of us was "Mama" and which of us is "Mommy"- something we sometimes can't even remember. Then we had Cissel, the sweet Norweigan and now we have Kathy, the super sassy blonde with a shoe fetish who is the blonde version of our favorite night nurse, Carol.
A few highlights:
- Today our friend Eric goes to security desk to get a visitor tag. Security guard at hospital with 191 beds says, "let me guess-for the Fitch-Jenett baby?".
- Respiratory therapist chats with me at the sink and says, "wow, do you guys come from really big families or something?" I reply that I'm an only child of an only child of an only child and she shakes her head in amazement and says, "We have so many babies in here with NO visitors. You guys have a village. " I just smiled and said, "yes, we do."
- Turns out that our friend from the dog park is the head of oncology here and has been totally briefed on our situation, his patients often have this condition and he's trained 1/2 the doctors we're working with. He'll be by every day to check on things and made it clear he'll kick ass if need be (we've had the MOST amazing care so it won't be necessary)
- We're the favorite hang out spot for all the queer staff (of which there are evidently many), including the super cute resident, Dan, who is totally George from Grey's Anatomy, but gay.
- We're estimating that Simon has over 10,000 people (including 8,000 Buddhists) sending him love, praying for him, visualizing health for him and that know about him.
- Simon has had *32* visitors and he's only been here for 5 days.
- Our friend Joan's colleague at the Native American AIDS project made him a dream catcher with Hawk and Eagle feathers and their drum circle has a song just for him they'll sing every Monday and Tuesday until he's out of the hospital.
- We've put up signs in the waiting room with his picture saying that his Mommies want to share the love and support that they're getting while he's here and to PLEASE eat the food we've left out. We've gotten incredible feedback from other people waiting here that they're really appreciating the overflow of love and food.
-Dr. Mohler, the pediatrician who admitted him at John Muir, came here to see him on Saturday just because we made such an impression on her and she lives in our neighborhood. We reminded her so much of a family she worked with years ago during her residency here. The baby had the same condition and is A-OK now!
Bottom line...we have a super long road ahead of us, but we are at least on the road now. There may be setbacks, but the extubation was a big test and so far Shimmy is passing and it looks like it's only going to get better from here. Nurses keep commenting on how obviously loved he is and how much it's helping his healing. They see all ends of the spectrum and I'm going to take their word as Gospel and ask y'all to keep it coming.
I keep visualizing this intense force field around him just pulsing with a low "thrum-thrum" sound. He's so present now. It's delicious. We honestly don't know that he would be at this high point without all the goodness coming at him.
Thank you.
Thank you.
Thank you.
It's a New Day
It's a new day and we're full of hope. We got to the hospital at about 8 am after sleeping for *9* hours at home while my Mom stayed in the hospital with Simon. He slept really well last night with one little glitch that is kind of funny. My mom said that at one point last night, she woke up to alarms going and a bit of commotion next to her, at his bed. She didn't even look over, but just sat up and announced "He doesn't LIKE that side". She knew they had tried to lie him on his left side, which he hates. He stopped breathing (I imagine it like the pissed off 3 year old holding their breath until they get their way) and was kicking like hell.
They let it ride for about 20 minutes and then readjusted him. He quieted down immediately. My mom wanted to say "I told you so" but kept her mouth shut :-)
This morning he is completely breathing on his own, at a normal pace but still through the breathing tube. It's pretty impressive when I think about it because he's actually breathing through a skinny little straw, so when they take the tube out, it will be that much easier for him. He's totally off his sedation and pain meds and is really quite content. He's awake and kicking his legs a bit but not frantically, just like normal, active baby. The cardiologist, Dr. Patel, not Mr. Hunkypants (Dr. Rosenfeld) actually gave an eyebrow raise when he said "he's doing well", like he couldn't believe quite how well he was doing. That's the first time a doctor has said something like that since we got here.
Once the tube is out and can stay out, we will get to hold him. He'll have to be on a pillow since he still has a line in his jugular vein on the right side and an IV in his right hand and leg, but we can hold him. Amen.
We've had the most incredible outpouring of support. I just got an email from a woman I don't know, from a listserv I'm on, who is in a singing group that comes to Children's to sing for kids and their families. They want to come sing for Simon. We're going to check with the nurses today to see if we can have a visit from them and get video of it.
Laura has heard from people she hasn't talked to in years...it's been so sweet.
So now we wait until the extubation happens and *don't* hold our breath :-)
They let it ride for about 20 minutes and then readjusted him. He quieted down immediately. My mom wanted to say "I told you so" but kept her mouth shut :-)
This morning he is completely breathing on his own, at a normal pace but still through the breathing tube. It's pretty impressive when I think about it because he's actually breathing through a skinny little straw, so when they take the tube out, it will be that much easier for him. He's totally off his sedation and pain meds and is really quite content. He's awake and kicking his legs a bit but not frantically, just like normal, active baby. The cardiologist, Dr. Patel, not Mr. Hunkypants (Dr. Rosenfeld) actually gave an eyebrow raise when he said "he's doing well", like he couldn't believe quite how well he was doing. That's the first time a doctor has said something like that since we got here.
Once the tube is out and can stay out, we will get to hold him. He'll have to be on a pillow since he still has a line in his jugular vein on the right side and an IV in his right hand and leg, but we can hold him. Amen.
We've had the most incredible outpouring of support. I just got an email from a woman I don't know, from a listserv I'm on, who is in a singing group that comes to Children's to sing for kids and their families. They want to come sing for Simon. We're going to check with the nurses today to see if we can have a visit from them and get video of it.
Laura has heard from people she hasn't talked to in years...it's been so sweet.
So now we wait until the extubation happens and *don't* hold our breath :-)
Tuesday, August 5, 2008
Simon's Gifts
Another day, so much love and baby steps for Simon.
Jaime and I are home once again in the hopes of getting some solid rest before Simon has his ventilator tube taken out (extubated). The loose plan right now is for extubation sometime between 4 and 7am early tomorrow morning.
Today has been all about offerings. Simon has been offering us baby steps in recovery in that he has started initiating breaths on his own, been able to be stepped down on some of his medication and has been maintaining a strong and consistent heart rate for most of the day. His ventilator is working on providing only 13 breaths per minute down from 22 and then 18 today and even though the ventilator number is at 13 the breaths are staying around the mid 20's which means that Simon is doing the rest.
He was able to get some breastmilk through his feeding tube and has already pooped his pants twice. Little shitter :-)
The catheter was taken out if his little penis and one IV was able to be removed from his left foot.
Given all this there is a good chance that they will try an extubation but we were also told that it's not unusual for baby's to need to be re-intubated three to four times.
After a wonderful breakfast of CHO cafeteria food Jaime and I both agreed that we can begin to sit in the "complete faith" place, so for right now, tomorrow is extubation day and we only move forward, however slowly, from here.
Jaime and I are slowly feeling like ourselves (although forever changed) with familiar ways of being coming back into our days. We're still feeling our hearts wrenched but we're also getting back to familiar ways of being (with each other, friends and family, Simon's nurses and doctors, and even the security guard who checks us out of the parking garage each day). So along with the heart wrenching there's some joy, some humor, some sassiness, and lots of talk about food. We even had a nurse share some of her borscht with us tonight because we've made a fabulous connection with her.
We forgot to mention that yesterday Simon got a powerful several hour healing from Vicki Noble, a dear friend and colleague of Dianne, Jaime's mom. Vicki was able to settle just about everyone within a 10 foot radius around her but more importantly Simon responded in no uncertain terms with a strong pulse right within his optimal range and several hours of solid rest.
For the most part he's continued that today and the gifts just keep coming.
Simon got some wonderful cards with hearts on them, a homemade hat, a dream catcher with hawk and eagle feathers (from a drum circle that sings for him every Monday and Tuesday), we switched out his snugglies with two new ones that Jaime and I kept in our shirts all day so that they'd be strong with Mommy smells, some wonderful fresh lavender, and of course many many emails and messages from the Army of Simon lovers that are out there.
Right now there seem to be thousands of people holding him in their hearts with so many of you sharing his name and situation with your extended communities, houses of faith, and wonderful families. The love is felt. It truly is amazing.
Thank you Thank you Thank you.
More later.
Jaime and I are home once again in the hopes of getting some solid rest before Simon has his ventilator tube taken out (extubated). The loose plan right now is for extubation sometime between 4 and 7am early tomorrow morning.
Today has been all about offerings. Simon has been offering us baby steps in recovery in that he has started initiating breaths on his own, been able to be stepped down on some of his medication and has been maintaining a strong and consistent heart rate for most of the day. His ventilator is working on providing only 13 breaths per minute down from 22 and then 18 today and even though the ventilator number is at 13 the breaths are staying around the mid 20's which means that Simon is doing the rest.
He was able to get some breastmilk through his feeding tube and has already pooped his pants twice. Little shitter :-)
The catheter was taken out if his little penis and one IV was able to be removed from his left foot.
Given all this there is a good chance that they will try an extubation but we were also told that it's not unusual for baby's to need to be re-intubated three to four times.
After a wonderful breakfast of CHO cafeteria food Jaime and I both agreed that we can begin to sit in the "complete faith" place, so for right now, tomorrow is extubation day and we only move forward, however slowly, from here.
Jaime and I are slowly feeling like ourselves (although forever changed) with familiar ways of being coming back into our days. We're still feeling our hearts wrenched but we're also getting back to familiar ways of being (with each other, friends and family, Simon's nurses and doctors, and even the security guard who checks us out of the parking garage each day). So along with the heart wrenching there's some joy, some humor, some sassiness, and lots of talk about food. We even had a nurse share some of her borscht with us tonight because we've made a fabulous connection with her.
We forgot to mention that yesterday Simon got a powerful several hour healing from Vicki Noble, a dear friend and colleague of Dianne, Jaime's mom. Vicki was able to settle just about everyone within a 10 foot radius around her but more importantly Simon responded in no uncertain terms with a strong pulse right within his optimal range and several hours of solid rest.
For the most part he's continued that today and the gifts just keep coming.
Simon got some wonderful cards with hearts on them, a homemade hat, a dream catcher with hawk and eagle feathers (from a drum circle that sings for him every Monday and Tuesday), we switched out his snugglies with two new ones that Jaime and I kept in our shirts all day so that they'd be strong with Mommy smells, some wonderful fresh lavender, and of course many many emails and messages from the Army of Simon lovers that are out there.
Right now there seem to be thousands of people holding him in their hearts with so many of you sharing his name and situation with your extended communities, houses of faith, and wonderful families. The love is felt. It truly is amazing.
Thank you Thank you Thank you.
More later.
Monday, August 4, 2008
Little Fighter
Well, we are not quite surprised but Simon Lev showed his spunkiness once again and not quite in the best way possible. Last night at around 4am Simon decided that he was done having a tube stuck down his throat and coughed out his intubation tube. His team decided to see if he could breathe on his own and very quickly assessed that was not the case and re-intubated him.
He will stay on his ventilator for a while longer and is once again heavily sedated.
I love that he's got such a strong will but I'll also love it when he stops fighting the things that may be uncomfortable for him right now but are in fact keeping him alive.
Mostly I just keep repeating "what the F***!?"
Jaime and I are trying to settle into some sense of regularity in terms of what the next long-while is going to be like. It's unbelievable to realize that for the next several weeks, months, what ever, Childrens' Hospital is where we'll be spending most of our time. That Simon won't be going to his Friday swimming class. That he can't be nursing, in his sling, or sleeping soundly in between Jaime and I.
What's harder today is that we're even discouraged from touching or talking to him as that stimulates him in ways that aren't helpful. What's hopeful is that they're thinking of giving him some breastmilk tomorrow via his feeding tube.
His heart is still enlarged but beating mostly at a consistent and healthy rate. It is still inflamed but with the ventilator controlling his breathing and the different sedatives and pain medication that he's receiving, he is resting right now and that's the most important thing.
Tomorrow is another day and we're hoping that instead of today's "just maintaining" that we might even begin to see some improvement.
Thinking about the future in the long terms runs the gamut but more than anything I want to think about telling Simon this story at different stages in his life and have it be an incredible place to have come from as he goes through other and hopefully less difficult moments.
The phone messages and emails are a gift to us for when we take a break from the I.C.U.
Thank you for all of them and the lasagnas, brownies, cookies, fruit, and most importantly the love. We all thank you for the love.
He will stay on his ventilator for a while longer and is once again heavily sedated.
I love that he's got such a strong will but I'll also love it when he stops fighting the things that may be uncomfortable for him right now but are in fact keeping him alive.
Mostly I just keep repeating "what the F***!?"
Jaime and I are trying to settle into some sense of regularity in terms of what the next long-while is going to be like. It's unbelievable to realize that for the next several weeks, months, what ever, Childrens' Hospital is where we'll be spending most of our time. That Simon won't be going to his Friday swimming class. That he can't be nursing, in his sling, or sleeping soundly in between Jaime and I.
What's harder today is that we're even discouraged from touching or talking to him as that stimulates him in ways that aren't helpful. What's hopeful is that they're thinking of giving him some breastmilk tomorrow via his feeding tube.
His heart is still enlarged but beating mostly at a consistent and healthy rate. It is still inflamed but with the ventilator controlling his breathing and the different sedatives and pain medication that he's receiving, he is resting right now and that's the most important thing.
Tomorrow is another day and we're hoping that instead of today's "just maintaining" that we might even begin to see some improvement.
Thinking about the future in the long terms runs the gamut but more than anything I want to think about telling Simon this story at different stages in his life and have it be an incredible place to have come from as he goes through other and hopefully less difficult moments.
The phone messages and emails are a gift to us for when we take a break from the I.C.U.
Thank you for all of them and the lasagnas, brownies, cookies, fruit, and most importantly the love. We all thank you for the love.
Sunday, August 3, 2008
What's to Come
Breathing is hard to remember to do but Jaime and I and Simon are all working hard tonight to gather our strength, breathe, and get ready for tomorrow which could potentially be a really big day (and if not tomorrow then pretty soon thereafter).
Simon has stabilized to the point that tomorrow morning they will assess whether or not he can begin the extubating protocol that will eventually result in him being back to breathing on his own. It's a several hour protocol and will only begin if he can make it through the night relaxed and stable with some, if any, of his stats improving (including his heart rate, respiratory rate, blood oxygen levels, and blood pressure).
He has had two transfusions of blood and has begun to get what is essentially gatorade through his I.V.
Jaime and I spent some time at home this afternoon gathering things to make his stay just a little bit more pleasant and in the picture you can see that we've plastered all the available space on his equipment with photos of himself in more robust times as well as the many folk that just love the bejeezuz out of him. He's also surrounded but his pony and duck that hopefully have the strong scent on Jaime and I on them as well as the birthing beads that were made at his Baby Shower (that we never got to cuz the little bugger shot out so fast)
He's already become a darling of the ICU and has the most amazing nurses looking after him (us too).
If he does in fact get the tube out tomorrow and get off the ventilator it also means that for the remainder of his recovery he will remain on sedatives but be much more aware and in touch with what's going on in terms of the number of needles in him, where he is, and the fact that he's not going about his regular business of swaddling, cuddling and canoodling with his mommies. In other words we are getting ready for little Shimmy to be letting us know in no uncertain terms that this time sucks buckets. For those of you that have been lucky enough to be around him when something is not going according to his plans know that he speaks his mind loudly, in such a way that not only are your heart strings tugged upon but they in fact feel like they are being ripped from your body in terribly painful ways.
Can't wait.
Really though it does mean that we are all on an active road to recovery, whatever kind it may be, AND that Shimmy can soon be held and eventually get back to nursing and looking into his Mama and Mommy's eyes.
We're off to bed now.
There are not enough words to thank everybody for the messages, emails, and palpable love that seems to be flooding in.
Are hearts are full, and keep it coming.
Todah Rabbah ("huge thanks" in hebrew)
Laura, Jaime, & Shimmy
Simon Update (warning, graphic pictures)
Simon is stable.
He's going to stay intubated and sedated at least until tomorrow morning to give him time to rest. Tomorrow they'll assess and maybe begin the process of extubating. We're in no hurry b/c it's helping him gather his strength.
His stats now are good. His pulse is now normal, about 120-140 (yesterday morning it was about 200), his respirations, with the ventilator, are about 25/minute which is the low end of normal (were at about 90 yesterday morning) and his bp is normal. He's got 13, count em, 13 lines attached to him.
He's going to stay intubated and sedated at least until tomorrow morning to give him time to rest. Tomorrow they'll assess and maybe begin the process of extubating. We're in no hurry b/c it's helping him gather his strength.
We think we're going to sleep at home tonight, at the very strong urging of his nurse, because once they stop sedating him, he'll know if we're there or not and we'll want to be there. We know that at some level he is aware right now of love coming his way, either through sound or touch, and so much appreciate the fact that with the overflowing of people showing up, he's not been alone for more than a few minutes since this whole thing started.
We've had the most incredible support. We had 12 people at the hospital today, which was amazing for us and annoying for the hospital staff :-) Visiting hours are 8am - 8 pm and we're going to have people hang in the cafeteria until they come up to see us (limit of 4 on the floor at a time).
If you're praying or visualizing, we asked the doctor what to think about. He said "getting the bad humors out of his heart". He also said that his heart is inflamed and exhausted, so send it cool and calm energy and strength. He must chill.
Trying to settle into some routine...
Here's some pics of Mr. Simon
His Pony and Zackies are providing warmth, smells of home & mommies for him all the time.
Day 2 of Hell
Jaime speaking...I just got back to the ICU here at 2 am after sleeping for about 5 1/2 hours. I hadn't slept in 36 and was starting to lose it so I went home while Laura's sister stayed with her here. I don't have words for any of this but I'll try because it helps me to tell the stories.
He's sedated right now which is so much better and so much worse than before. He can rest now, doesn't fight his tube, gives us a little break since he has to be in his isolette and can't be held and is HORRIBLE because he can't be held, in almost no way resembles himself and if you catch him, as I just did, in between doses when he's slightly lucid and making eye contact, he thrashes around a bit (he's still the same scrappy baby) which isn't actually good for him.
I just got here and went to check on him and his eyes were open. At first they seemed a little vacant and I wasn't sure he really knew I was there but then he started moving. I kissed his head and talked to him and could tell he knew it was me. But then he got so agitated that his nurse (he's so sick he has his OWN nurse) had to check on him b/c his heart rate monitor started alarming. I stepped back and sat down in the rocking chair in our area, out of line of sight so he could calm down. I have just been crying and crying (and I'm not really a crier, for those of you who know me). The nurse came over with tissues and said to not be afraid to touch him (I think she meant in a general sense), but when I asked if I should leave him alone right now, she said I could be near him but it was better to let him rest so probably best not to touch him right now.
To feel like showing affection to your own child can hurt him is just about the worst feeling I have ever had.
Any light at the end of this tunnel feels too far away to be something to hold onto. If he's going to get better, it won't be apparent for at least 5 more days and he'll be here for at least 3 weeks. That's the best option. I have no idea how we will make it through 3 weeks of this kind of hell but people do it all the time. We just have to pace The biggest thing for Laura and I is not wanting to be separated from each other. Leaving tonight to go sleep almost killed me but I knew if I didn't I might just completely fall apart and that's not really helpful for anyone.
I feel a little more human now. I'm a little less numb with more sleep which is good and bad. I just sort of have tears streaming down my face as a state of being. I hope things feel better in the morning.
I will say that we have THE most incredible support I can imagine. When the social worker came by yesterday morning and asked what kind of support we have, we actually laughed. I don't think they've seen the likes of us before :-)
Keep the love coming, keep the visits coming, and most of all keep your loving, grounding, stay-in-your-body energy for Simon coming. He's the scrappiest, strongest baby I've ever seen and I'm thinking if any baby has a chance to make it through this, it's this guy.
With all my love
Jaime
He's sedated right now which is so much better and so much worse than before. He can rest now, doesn't fight his tube, gives us a little break since he has to be in his isolette and can't be held and is HORRIBLE because he can't be held, in almost no way resembles himself and if you catch him, as I just did, in between doses when he's slightly lucid and making eye contact, he thrashes around a bit (he's still the same scrappy baby) which isn't actually good for him.
I just got here and went to check on him and his eyes were open. At first they seemed a little vacant and I wasn't sure he really knew I was there but then he started moving. I kissed his head and talked to him and could tell he knew it was me. But then he got so agitated that his nurse (he's so sick he has his OWN nurse) had to check on him b/c his heart rate monitor started alarming. I stepped back and sat down in the rocking chair in our area, out of line of sight so he could calm down. I have just been crying and crying (and I'm not really a crier, for those of you who know me). The nurse came over with tissues and said to not be afraid to touch him (I think she meant in a general sense), but when I asked if I should leave him alone right now, she said I could be near him but it was better to let him rest so probably best not to touch him right now.
To feel like showing affection to your own child can hurt him is just about the worst feeling I have ever had.
Any light at the end of this tunnel feels too far away to be something to hold onto. If he's going to get better, it won't be apparent for at least 5 more days and he'll be here for at least 3 weeks. That's the best option. I have no idea how we will make it through 3 weeks of this kind of hell but people do it all the time. We just have to pace The biggest thing for Laura and I is not wanting to be separated from each other. Leaving tonight to go sleep almost killed me but I knew if I didn't I might just completely fall apart and that's not really helpful for anyone.
I feel a little more human now. I'm a little less numb with more sleep which is good and bad. I just sort of have tears streaming down my face as a state of being. I hope things feel better in the morning.
I will say that we have THE most incredible support I can imagine. When the social worker came by yesterday morning and asked what kind of support we have, we actually laughed. I don't think they've seen the likes of us before :-)
Keep the love coming, keep the visits coming, and most of all keep your loving, grounding, stay-in-your-body energy for Simon coming. He's the scrappiest, strongest baby I've ever seen and I'm thinking if any baby has a chance to make it through this, it's this guy.
With all my love
Jaime
Some Tough News About Simon
Dear Friends and Family
Jaime and I needed to get out an update about Simon as he is in serious need of your loving thoughts right now.
We're still in a huge amount of shock but on Friday afternoon Simon was admitted to Children's Hospital Oakland in critical condition. In less than 24 hours Simon went from being our lovely fabulous healthy little boy to having heart failure and needing critical medical attention. We're not entirely sure of how it all happened but with shortness of breath and a simple visit to the pediatrician to rule out Pneumonia, we've somehow ended up with our little boy having Cardiomyopathy meaning that his heart is not functioning well enough.
They're doing all kinds of tests to find out where the condition came from (likely not from a structural defect but possibly from a virus or metabolic anomaly). Simon is on a ventilator right now and will be for at least the next 48 hours with three possible outcomes. A) He will recover from this in a few months with no lasting symptoms. B) He will mostly recover and need to be on some medications for the rest of his life. Or, C) His heart will not recover and continue to function poorly, he will not be able to get off the hospital regiment and may or may not be in line for a heart transplant.
Our cardiologist says that we can be optimistic that Simon "looks like he's not dying" and is young enough that option A is something we can really focus on.
With him being on a ventilator and having two major lines for medications, observation, sedation and pain medication, he is right now resting relatively peacefully after about 30 hours of putting up a massive fight. He is truly incredible and if I never have to see him being that "incredible" again I'll be most pleased and grateful.
For those of you that are in the area and would like to visit, Simon will be in the hospital for the next three weeks at least and we'd love for you to be able to have him hear your voice and know that you are present. Visiting Hours are 8am to 8pm and our friend Dre will be setting up a visiting schedule as there isn't much room in the Pediatric ICU. Her # is 510-499-7590 or andreanaclay@gmail.com
Jaime and I appreciate your loving voicemails and messages thus far. We're not going to be that good about getting back to folks right now. Our world has turned upside down and we're working on holding on.
Our friend Joan tells us that her tradition says that once a person laughs for the first time that means that they are anchored to this world.
Little Shimmy is well anchored then...just in time.
We are all grateful for your loving thoughts helping to hold him tight.
From the three of us.
Jaime, Laura and Simon
Jaime and I needed to get out an update about Simon as he is in serious need of your loving thoughts right now.
We're still in a huge amount of shock but on Friday afternoon Simon was admitted to Children's Hospital Oakland in critical condition. In less than 24 hours Simon went from being our lovely fabulous healthy little boy to having heart failure and needing critical medical attention. We're not entirely sure of how it all happened but with shortness of breath and a simple visit to the pediatrician to rule out Pneumonia, we've somehow ended up with our little boy having Cardiomyopathy meaning that his heart is not functioning well enough.
They're doing all kinds of tests to find out where the condition came from (likely not from a structural defect but possibly from a virus or metabolic anomaly). Simon is on a ventilator right now and will be for at least the next 48 hours with three possible outcomes. A) He will recover from this in a few months with no lasting symptoms. B) He will mostly recover and need to be on some medications for the rest of his life. Or, C) His heart will not recover and continue to function poorly, he will not be able to get off the hospital regiment and may or may not be in line for a heart transplant.
Our cardiologist says that we can be optimistic that Simon "looks like he's not dying" and is young enough that option A is something we can really focus on.
With him being on a ventilator and having two major lines for medications, observation, sedation and pain medication, he is right now resting relatively peacefully after about 30 hours of putting up a massive fight. He is truly incredible and if I never have to see him being that "incredible" again I'll be most pleased and grateful.
For those of you that are in the area and would like to visit, Simon will be in the hospital for the next three weeks at least and we'd love for you to be able to have him hear your voice and know that you are present. Visiting Hours are 8am to 8pm and our friend Dre will be setting up a visiting schedule as there isn't much room in the Pediatric ICU. Her # is 510-499-7590 or andreanaclay@gmail.com
Jaime and I appreciate your loving voicemails and messages thus far. We're not going to be that good about getting back to folks right now. Our world has turned upside down and we're working on holding on.
Our friend Joan tells us that her tradition says that once a person laughs for the first time that means that they are anchored to this world.
Little Shimmy is well anchored then...just in time.
We are all grateful for your loving thoughts helping to hold him tight.
From the three of us.
Jaime, Laura and Simon
Saturday, July 26, 2008
Shimmy Makes Some Friends
Here's Mr. Simon snuggling with his sister, Roxie
We just had our 2nd reunion from our childbirth class today. The boys are so darn cute. Here is Simon with his buddy Theo.
Here is a video of 4 of the 6 boys getting up close and personal
Thursday, July 24, 2008
Laura Speaks
So Simon is sleeping now and I thought I'd get some more photos of him up here. We're all doing well over at 702 1/2 Rand. Simon and I get out at least twice a day to walk the Roxie dog and then at least once more on some bigger outing (Yoga on Mondays, Swimming on Fridays, a hike here and there and some good friend times with folks.) We've ridden the BART and bus together, we've been shopping at Trader Joe's and the Berkeley Bowl, we've done some itsy bitsy baby yoga, and been to a lactation support group even though everything is going super swell. Simon weighed 10 lbs 12 ounces two weeks ago so we're thinking that at our next weigh in we're hoping to surpass 11lbs. He's had a few immunization shots and has weathered them without any major side effects or even minor ones for that matter and we love our pediatrician Dr Maria.
As for me I'm figuring things out minute by minute and even when those minutes are hard or frustrating I'm still in awe at this new life (mine and his). Lots of trial and error moments, lots of sweet- my heart might explode- moments, it's all there. Simon is a little being with so much going on and amazingly enough I am his guide/protector/entertainer/food source for the moment. What?!?!?!
My heart is full.
Oh yeah, I have to give a ginormous shout out to our wonderful community. The showing up has been so incredible. Thank you Thank you Thank you. I can't say it enough.
And now some more thoughts and photos from Shimmy La (via Laura's mind)
I know that Jaime and Laura are all hip to this gender spectrum thing but I don't even know my own name yet let alone what my gender expression is gonna be.
As for me I'm figuring things out minute by minute and even when those minutes are hard or frustrating I'm still in awe at this new life (mine and his). Lots of trial and error moments, lots of sweet- my heart might explode- moments, it's all there. Simon is a little being with so much going on and amazingly enough I am his guide/protector/entertainer/food source for the moment. What?!?!?!
My heart is full.
Oh yeah, I have to give a ginormous shout out to our wonderful community. The showing up has been so incredible. Thank you Thank you Thank you. I can't say it enough.
And now some more thoughts and photos from Shimmy La (via Laura's mind)
I know that Jaime and Laura are all hip to this gender spectrum thing but I don't even know my own name yet let alone what my gender expression is gonna be.
Besides, this thing does not go with a number of my outfits. And...I gotta say it's a little tight
It's ok though cuz almost all the rest of the time I am SO on the ball
What choo talkin' 'bout diaper change?!
This is a good time! We should do this every day, all day!Sunday, July 20, 2008
Turning Out to Be Quite The Looker
What's new with him these days...sleeping longer stretches during his afternoon nap, laughing a little, he's about 11 pounds and loves to look around at his surroundings and is VERY into eye contact, which apparently is rare for boys.
He is driving people wild on the streets with his killer blue eyes and his "I'm very serious" face.
(Getting ready for his first pride, with his very "Prideful" legwarmers!)
Sunday, July 13, 2008
Amazing Photos from Simon's Bris
I posted on my other blog about our decision to circumcise Simon. Feel free to read it at http://jaimejenett.blogspot.com/2008/03/can-lesbians-ethically-circumcise-their.html .
Amy Jeffries, a Journalism student (now graduate!) at UC Berkeley did a photo essay about us and was able to be present for the Bris. Here are the incredible photos she took...
Amy Jeffries, a Journalism student (now graduate!) at UC Berkeley did a photo essay about us and was able to be present for the Bris. Here are the incredible photos she took...
Tuesday, June 24, 2008
Simon expresses himself
First off, I'd like to say that the faux hawk is NOT going out of style
And if anyone thinks otherwise they should put up their dukes.
Then there's my leather look courtesy of my Unk Skeeter. Maroon is the new black.
Wait, I'm not ready for pictures yet...my hair isn't quite right.
C'mon baby, let's do the twist!!Sunday, June 15, 2008
More Simon Lev to love
Jaime, Simon, and Grandpa Bruce out for Grandfathers day lookin' good.
Grandpa Bruce is in solidarity with Simon Lev
Simon says "Hey GB, pull my finger, no wait, let me pull yours." Instead of tooting, Simon lets out a big Yawn. Aaaah babyhood, we'll see how long that lasts.
Grandpa Bruce is in solidarity with Simon Lev
Simon says "Hey GB, pull my finger, no wait, let me pull yours." Instead of tooting, Simon lets out a big Yawn. Aaaah babyhood, we'll see how long that lasts.
Friday, June 13, 2008
Simon's Master Plan
Mostly I'm growing into a happy go-lucky kinda guy. I'm spacing out my meals more and every once in a while I even throw my mommies a bone by sleeping 5 hours in a row (that was a couple of nights ago- now I'm back to 2-3 in a chunk. I like to keep those punks on their toes).
But sometimes Mommy Laura catches it on digital film that I am in fact hatching an evil plan to take over the world. No, not the world..the universe...yes, the whole universe shall be mine. Mwaa haa haaaa.Peas out to all my fans.
SLFJ
Monday, June 9, 2008
New Pictures of Simon Lev- Lookin' Goood
Look at me Folks!! I'm learning, growing and getting my smile on.Wednesday, May 21, 2008
Losing it just a little
Here's a funny little story about how sleep deprivation affects your powers of perception.
Last night Laura and I were in the living room, watching American Idol on DVR while she nursed Simon for the last time before he went to sleep. We're about halfway through the show when she said, "pause it for a minute" and cocked her head like a dog. I paused it and said, "what? What are you listening for?". She didn't answer me, kept listening intently, and then whispered, "I thought I heard Simon". I thought she meant she heard him making some weird, scary, trying-to-die noise from her lap. I looked at her, quite concerned, and the realized she thought she heard him from the bedroom.
Trying not to laugh at her, I said, "um, Babe...he's in your LAP. On your BOOB".
She looked down and then, shaking her head said, "Shut up. Shut up. Don't even say it".
We burst into our old familiar hysterical laughter and finished watching the Davids duke it out.
Last night Laura and I were in the living room, watching American Idol on DVR while she nursed Simon for the last time before he went to sleep. We're about halfway through the show when she said, "pause it for a minute" and cocked her head like a dog. I paused it and said, "what? What are you listening for?". She didn't answer me, kept listening intently, and then whispered, "I thought I heard Simon". I thought she meant she heard him making some weird, scary, trying-to-die noise from her lap. I looked at her, quite concerned, and the realized she thought she heard him from the bedroom.
Trying not to laugh at her, I said, "um, Babe...he's in your LAP. On your BOOB".
She looked down and then, shaking her head said, "Shut up. Shut up. Don't even say it".
We burst into our old familiar hysterical laughter and finished watching the Davids duke it out.
Monday, May 12, 2008
Welcome Hysteria, Sweet Sister of Sleep Deprivation
Last week Laura and I met Hysteria.
It was about 8:30 pm and we were just trying to settle down to go to bed. I was so tired I was literally almost drooling. I was exceptionally desperate to sleep because I needed to wake up at 10:40pm to go pick up my dear friend Abby from the airport.
Laura had just gotten Simon to sleep and put him down in his co-sleeper. I was sliding down the delicious off ramp to sleep when Laura's voice brought a halt to my journey.
"Do you want to sing to him?", she asked so sweetly.
Let me explain. Many a well meaning infant care book and website has talked about the critical need to develop a "bedtime ritual". Give a bath, sing the same lullaby, have a little catch phrase- whatever you do, do the same thing every night. Makes sense, right?
This is all well and good unless bathing your child makes him scream so hard he turns into a purple faced creature that looks like something Pixar developed for Monsters, Inc. We DO always manage to get our phrases in. Mine is "Sleepy time, little boy" and Laura's is "Lila Tov, Simon. Sweet Dreams". Super easy to squeeze in as you're losing the capacity to speak English/Hebrew due to exhaustion.
But the singing. Last week the singing prompted hysteria.
Laura says, "Do you want to sing to him?" I respond, "Isn't he already asleep? which probably sounded like "mrflegurfl". Then I fast forwarded to Simon in therapy at 20 saying, "I remember Mommy singing to me every night, but where was Mama?". Fine.
Laura takes a breath to start singing and suddenly my mind is a complete blank. You could have offered me $1 million dollars at that moment and I couldn't have told you what our lullaby song was (James Taylor's "Close Your Eyes") nor sung you the first line. The song finally starts to sound familiar and I chime in after a verse. Then I whisper to Laura, "I forgot what the song is!". Mind you, we've sung this song every single night for almost a month at this point.
Laura starts to chuckle. I start to chuckle. Suddenly I am hysterically laughing. Laura tries to soldier on with the song. I am gone, now laughing so hard I am silent. Despite what they say, losing one's mind IS contagious. Laura's delightful song collapses into more hysterical laughter. I try to pull it together and start over. I fail. Laura tries. She fails. I start to feel like my head might explode as we try not to wake up Simon with our hilarity. I'm having flashbacks to moments of the uncontrollable laughter in church with my cousins in Texas. Is God going to strike us down for failing to sing a lullaby to this sleeping baby?
We finally stopped laughing, ditched the song (he was asleep already, OKAY?) and slept like the dead. For 2 hours.
It was about 8:30 pm and we were just trying to settle down to go to bed. I was so tired I was literally almost drooling. I was exceptionally desperate to sleep because I needed to wake up at 10:40pm to go pick up my dear friend Abby from the airport.
Laura had just gotten Simon to sleep and put him down in his co-sleeper. I was sliding down the delicious off ramp to sleep when Laura's voice brought a halt to my journey.
"Do you want to sing to him?", she asked so sweetly.
Let me explain. Many a well meaning infant care book and website has talked about the critical need to develop a "bedtime ritual". Give a bath, sing the same lullaby, have a little catch phrase- whatever you do, do the same thing every night. Makes sense, right?
This is all well and good unless bathing your child makes him scream so hard he turns into a purple faced creature that looks like something Pixar developed for Monsters, Inc. We DO always manage to get our phrases in. Mine is "Sleepy time, little boy" and Laura's is "Lila Tov, Simon. Sweet Dreams". Super easy to squeeze in as you're losing the capacity to speak English/Hebrew due to exhaustion.
But the singing. Last week the singing prompted hysteria.
Laura says, "Do you want to sing to him?" I respond, "Isn't he already asleep? which probably sounded like "mrflegurfl". Then I fast forwarded to Simon in therapy at 20 saying, "I remember Mommy singing to me every night, but where was Mama?". Fine.
Laura takes a breath to start singing and suddenly my mind is a complete blank. You could have offered me $1 million dollars at that moment and I couldn't have told you what our lullaby song was (James Taylor's "Close Your Eyes") nor sung you the first line. The song finally starts to sound familiar and I chime in after a verse. Then I whisper to Laura, "I forgot what the song is!". Mind you, we've sung this song every single night for almost a month at this point.
Laura starts to chuckle. I start to chuckle. Suddenly I am hysterically laughing. Laura tries to soldier on with the song. I am gone, now laughing so hard I am silent. Despite what they say, losing one's mind IS contagious. Laura's delightful song collapses into more hysterical laughter. I try to pull it together and start over. I fail. Laura tries. She fails. I start to feel like my head might explode as we try not to wake up Simon with our hilarity. I'm having flashbacks to moments of the uncontrollable laughter in church with my cousins in Texas. Is God going to strike us down for failing to sing a lullaby to this sleeping baby?
We finally stopped laughing, ditched the song (he was asleep already, OKAY?) and slept like the dead. For 2 hours.
Sunday, May 4, 2008
Our Trick Pony
So our little Shimmy (his new nickname) has some really fun tricks up his sleeve these days.
Trick #2 Waiting just until you're about to fasten the diaper and then peeing everywhere. Bonus trick- after you clean that up, have changed clothes and are about to fasten diaper #2, repeat pee trick.
Trick #1 (Our current favorite) being full of gas, both burps and farts, that won't come out so he's up all night (I got 3 hours and Laura got 2 hours of sleep last night- took turns sleeping in the living room). Not sure if it's sensitivity to dairy that Laura's eating or just typical gassy baby. It sucks a little but so satisfying when he lets one rip. Sometimes we cheer. Must be the sleep deprivation.
Trick #2 Waiting just until you're about to fasten the diaper and then peeing everywhere. Bonus trick- after you clean that up, have changed clothes and are about to fasten diaper #2, repeat pee trick.
Trick # 3 Burping so loudly that Laura thinks it was Jaime burping.
Trick #4 Sleeping with hands up by head, most often in a "oh the world is so cruel, I just can't take it anymore" position. (See photo for example)
Trick #5 Losing his baby hair so he now REALLY looks like a little old man with a receeding hairline. (See photo for example) Sometimes, when he's sleepy and his eyes are rolling around in his head his movements are slow and uncoordinated looks like a drunk old man. His little old man name is Irving.
Tuesday, April 29, 2008
A little field trip to CHO
We had to take Simon to Children's Hospital Oakland today for a follow up blood test (nothing major-just following up on a slightly high reading on one of the standard newborn metabolic panels). It was such a great experience in some ways- I had none of the usual anxiety I usually feel in hospitals. It's so well designed to be kid friendly and not feel super clinical.
On the other hand, it was very painful to be surrounded by sick and disabled kids. It is almost unfathomable to me that every day people deal with the combined stress of having a newborn and dealing with it/them being critically ill. I honestly don't know how parents of multiples (or anyone!) that have one or all kids in the hospital ever make it through that experience. I was so grateful today to have a healthy baby...
Simon is getting little leg creases and a belly but he still sort of looks like a grumpy old man named Irving. But sometimes he looks like a sweet little baby named Simon :-) More photos coming soon...
On the other hand, it was very painful to be surrounded by sick and disabled kids. It is almost unfathomable to me that every day people deal with the combined stress of having a newborn and dealing with it/them being critically ill. I honestly don't know how parents of multiples (or anyone!) that have one or all kids in the hospital ever make it through that experience. I was so grateful today to have a healthy baby...
Simon is getting little leg creases and a belly but he still sort of looks like a grumpy old man named Irving. But sometimes he looks like a sweet little baby named Simon :-) More photos coming soon...
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