Returning to routine

Still phone blogging. I can use the laptop but I have to hook it up to a monitor and I just don't have patience for that. So please excuse any typos.

The release yesterday came somewhat suddenly. The doctors don't tell you when you're being released. But we had a good feeling so we packed up the car, packed up the suitcases and threw out all leftover garbage. Gd's gift to nurses came in and ask Fraidy why she is packing up? "did you get letter of release from doctor?" she asked in an accent inherited from years of communist Soviet rule. Fraidy explained that we didn't get it yet, but there's no reason we need to stay longer. "we'll see..." and she whisked out of the room like a KGB officer in a prisoner of war camp.
Lo and behold we were released. The greatest nurse in the world, an Arab women named Sahar, did the release and she is excellent. The reason is because she sits and patiently explains each little item that parents need to know. She is very clear and concise and doesn't move until you know everything you need to know. There was even one time when during the explanations Stalin's mother came in and told her she is needed in the conference room and Sahar told her she will have to wait until she is done.   We liked her!
Fraidy took her phone number and praised her and thanked her for explains everything so patiently.
And so it was, at 1230pm, we took our heart warrior and went home.
After stopping at the toy store on the way home, we got home, unpacked our mountain of suitcases and slowly started to bring back routine.
The kids came home and were ecstatic.  For some reason they looked bigger to me. Especially their heads. I guess after spending two weeks staring at a new born, four and seven year heads look strangely huge.
Of course SuperPharm called one hour after we got home to say the prescription was ready. But we had enough medicine for yesterday that I didn't need to drive to petach tikva to pick it up.

Today I went back to work. Hard to get back into things as my head isn't really there. Hopefully soon I'll be able to jump back into it.

Bris details are on hold until the echo next Sunday.

The baby is taking bottles better than nursing, so we're still giving home bottles. Fraidy is working hard to pump and give bottles. Her days are busy.  We hope within a week he will be strong enough to nurse better.

That's it for now.

Home...

There's No Place Like Home

Release letters in hand. Finishing up the process. We hope to be home in a few hours.
Ecstatic is an understatement.

Baruch HaShem.

Blogging from my phone

Good news for you guys, broken laptop means shorter blogs.

-we are feeding him 70 & 80 ml bottles with a cup of similac to fatten him up.
-Fraidy is pumping now while we give him bottles. This way we know how much he eats.
- his weight is "stable" according to the nurse.
- things are looking good.
- Fraidy's amazing family made us all of shabbos.
-my amazing parents are joining us for Shabbos.  Our room is quiet, with one very nice mother occasionally sharing it with us.
- the electric wires just came off and the IV is on its way out right now.

Baruch HaShem...

Annnnnnnnd I just broke my laptop

This sucks.

The Envelope Please...

We just got back now from an Echo.  The echo is a major point of progress checking.  Its basically when they review the results of the surgery and check to see if the repair went well.  This was a little nerve wracking with it hanging over our heads the whole day.  In the meantime we will be doing our hishtadlus to make him gain weight, so I'm back on nursing duty, every other feeding.  When its my turn, we give him a bottle with 60ml, and half a cup of similac.
Thank Gd, they moved one bed from our room, then one baby that was here is in the ICU now, so besides us it's only the Ethiopian mother, and she's nice.  Which means we've equipped ourselves with two couch/bed/sofa whatnots, and are making the most of our room.  I really hope no one else moves in here before Shabbos.  Fraidy says I have to sleep here tonight so I can do a feeding.  Great.  Anyone wanna tag team with me instead?
The doctor came in to check on Norman today.  He said he looks very good and he did some sort of "doctor's examination" which included squeezing his stomach from the sides, and looking around at the baby.  He said he wants the baby to start to gain weight and then we could go.  So I asked if that means like Sunday, assuming he starts to gain weight, and he said yes.  So there's a chance we could come home on Sunday.  Another Shabbos here, that stinks.  My parents are going to try and join us here, and Fraidy's family is kind enough to make us all the food for shabbos.  The kids will be by my mother in law in Har Nof.  The chessed is bursting at the seams here.
In case you're wondering the echo came out good.  The doctor we like, Dr Amichai, did the echo.  There is still a slight regurgitation, but its the same as before the surgery and not any worse, so he isn't concerned about it.  I asked about a bris and he said shouldn't be a problem, we should verify again when we come back a week after release and do another echo then.
One more thing, during the echo, as the baby was lying on a table, shirt open, shmeared with cold gucky stuff he started to cry.  I asked Fraidy to bring up the pacifier, but in the meantime I put on some music.  He immediately went quiet and stayed that way as long as the music was playing.  At first it was Pachabel's Canon, but Vivaldi Winter was also calming.  I highly recommend it when you need to chill.

Enjoy...

Eight Days of Channukah

(Please pardon the origin. This was fun to write.)

Eight days of channukah

On the day before channukah my baby gave to me, an open heart surgery.

On the first day of channukah my baby gave to me, one day in the ICU and an open heart surgery.

On the second day of channukah my baby gave to me, two extraction tubes, two days in the ICU and an open heart surgery.

On the third day of channukah my baby gave to me, thirty ccs of pish, two extraction tubes, three days in the ICU, and an open heart surgery.

On the fourth day of channukah my mother in law gave to me, four shabbos challah, three pieces of chicken, two gefilte fish, and a grandson recovering from open heart surgery.

On the fifth day of channukah my baby gave to me, five breathes on his own.  Four IVs, three boxes of chocolate from work, two stuffed animals and an open heart surgery.

On the sixth day of Channukah my baby gave to me: six stitches from extraction tube removals, point five miligrams of morphine drip, four electric wires attached to his heart, three total scars, two stuffed animals to watch over, and big ole respirator tube removed.

On the seventh day of Channukah my baby gave to me, an exit from the ICU.

On the eighth day of Channuakh my baby gave to me, eight dirty diapers, seven pieces of tape removed from his scar, sixty ccs drank on his own, five bottles polished off, four changes of clothes, three hours between each feeding, two arteries working very well, and a strong perfect repaired beating beautiful heart.

On this year Channukah HaShem gave to us, a strong, beautiful well behaved boy.

The Way Home is Riddled With Nurses and Doctors

There was a small chance that maybe we could have gotten out today.  That was clearly very premature.  I'm not sure how we got that feeling, I don't even remember now.  Life here is so full with ups and downs, its hard to remember what happened an hour ago.
I think the reason why we thought there was a chance we could go was possibly because he was eating nicely, nursing nicely, not crying from pain and managing good stats.
Today, there seems to be a different story. And part of it is because today's nurse is a real class act.  We had our first run in with her when she saw we had bathed the baby.  She asked us if we knew how to bathe, and we said we got instructions yesterday, but now she said those instructions were wrong.  And continued to berate us about how we don't listen, do whatever we want and kept saying over and over "חבל" and then told us to wait for her.  So we wrapped him in a blanket and put a diaper on him, and waited.  And waited.  And waited.
This morning we also weighed him and he was down 50 grams from yesterday.  Thats not a great thing.
After waiting for her royal majesty we decided it prudent to dress the baby and cover his war wounds. 

When the nurse finally came (the topic of today's Far Side comic) she told us about how to clean the cut on the chest, and bathe him.  Let it be noted publicly, we had done everything right, except cleaning the cut.  (that's not to say we didn't need to bathe him, but we certainly didn't deserve the russian disciplinary actions.)  Then we talked about his weight.  She said it could be because of the fusid that he is pushing out more than he is getting in.  We asked her what we can do about it.  She said we can supplement with some formula between feedings.  But left the issue very vague and didn't give an opinion one way or the other. 

We decided we would give a half milk bottle and half formula and see if that helps at all. 

Today is also test day. We did an EKG and a blood test, and now we're waiting for an xray and echo.  Who knows? Maybe everything everything will go well and we can go home.... Wishful thinking right? 

We're pros now

The end is near.  Rumors are flying that very soon we will be released and let loose like canadian geese flying south for the winter.  (There isn't something deeper to that metaphor, it's the first thing that came to my mind, and I don't know why).
The baby ate well today, both from bottles and he nursed three times today from Fraidy.  He is making nicely, and he didn't lose weight which is a good thing.
They told us today that in order to give us our freedom, we will need to show we have the medications.  I went for a wild goose chase to get them all.  Luckily I brought with us the Fucid that I had from the house, because that will take 2-3 days to prepare at SuperPharm.  But just in case I needed another newer model, I did my due diligence to get the prescription.  But there is also a prescription for another medicine, Medicine #2.  Its also a diuretic.  Apparently, he needs two kinds of medicine to really get everything out.  Here is a summarized play by play of how I finally got the medication:

1. I was given the clalit prescription from the doctors here.
2. I scanned it into my phone and emailed it my pediatrician.  (I need meuhedet prescriptions of course).
3. I waited until 3, and called the doctor's office.
4. 1500, 1505, 1510, no answer.  I called the doctor's personal cell.  He told me the office opens at 1600.
5. Meanwhile I went down to the pharmacy here in the off chance I can afford to buy the drugs privately.
6. The drugs cost ~400 shekels!
7. I went back to the secretary, told her it will cost 400 shekels!
8. She yelled: "400 SHEKELS! HAVE THEY LOST THEIR MIND?!"  She called the pharmacy.  Confirmed.  sorta.  between 280 and 400 shekels.  yes, they've lost their mind.  To prepare syrup medications for 1 month babies who do not have clalit, need a second mortgage on their home.
9. I waited till 1600.  Called the secretary, asked her to remind the doctor to prepare the prescriptions.
10. 1620 - the doctor emailed me the prescriptions were on the way. 
11. Ran upstairs, no fax.  Called the doctor's office, asked for the fax.  Got the fax.
12. Went to maariv.
13. Went to the biggest freaking mall in the world, called: The Petach Tikva Big Mall.
14. SuperPharm doesn't have medication #2 in pill version, and it will take at least 2 business days to make medicine #1 and medicine #2 syrup versions.  They "may" have it ready Sunday.  I ordered it.  48 shekels.
15. Went to get supper.  Still nervous about the medicine #2, the pills.
16. Called a pharamcist in Jerusalem. He has it.  Searched on google for pharmacies in Petach Tikva that take meuchedet.  Started making phone calls.  
1. no answer.
2. he has it, too far away, will be closed in 15 minutes.
3. Looked on map for a place nearby, found one.  called them, he's got it.  Waze: 7 minutes.
17. Zaidy returns with dinner in hand, off to the pharamacy.
18. No parking spots in site... shocker.
19. Park in the bus lane to the central bus station, blinking lights, Zaidy and the food in the car.
20. Run into the pharmacy.  BAM!   i just stepped into 1960s Petach Tikva.  Two people by the counter.  186 years old.... each.  moldy shelves.  dusty shampoo.  BenGay box, manufactured: 1913. 

 

1. Hand him the paper.  
2. He wont accept a fax.  Only originals.
3. Tangential conversation about whether or not my personal physician would accept non original checks.  Pull them back to the issue.
4. They warn me I will have to pay for the pills.  Fine.  How much?
5. They prepare the order... how much?
6. I could have run to Yerushalayim in the time it takes Miracle Max and Valerie here to prepare this.  How much?
7. 11.80 NIS.  ok, I think i can manage that.
8. Long needless conversation about how to cut up the pills.  Apparently a pill cutter is no good.  I need to use box cutters.  I say no thank you, I'm not trying to hijack a plane.
9. He tells me to have fun storming the castle.
1. And that's how I got medicine number #2.  The shwarma was delicious, thank you Zaidy.

We have a roommate now, a nice Ethiopian women who's baby was taken in for surgery today.  She thought they would have a cathertization, it turns out it was open heart and she wasn't prepared for that.  Thankfully the baby came out of surgery alright, but now she wasn't prepared for how she looks. We showed graphic pictures of Norman, and then showed her our beautiful prize sleeping peacefully.  I think she liked that.

Fraidy is sleeping with Norman tonight, she's back on nursing duty.  I get to sleep in a comfortable bed tonight.

Nursing Dad

I forgot to explain why I am doing all the feedings for now.  Yesterday, Fraidy and I cut a deal.  Since she had spent most of the day suffocating inside the ICU and hospital and I got to escape for 5 hours when I drove the kids home, that I would sleep with the baby and she would get a good night's sleep.

This turned out to be a fortuitous decision, as I was much more successful giving the baby a bottle than Fraidy was.  We are theorizing two possible reasons: 1 - The baby smells Fraidy and would prefer to nurse from her, rather take a bottle.  But we aren't allowed to nurse the baby yet, until we know he is strong enough to take from a bottle for 24 hours.  2 - I seem to be better at handling the gaging.  I take the bottle out and try again slowly, and eventually he starts to grab suction on the bottle.  Fraidy has a harder time with it, since she is a loving caring mother, for some reason she has trouble shoving a silicon top into a babies mouth when he is gaging and making sad faces.  I seem to be the more abusive one here.  Norman is learning his first lesson in life: If you wanna eat, you gotta learn to control your gag reflex.  So I am on call every three hours to come feed him.  Thats leaves me 1 hour and 40 minutes until the next call.  This is ridiculous.  How do women live like this??

A New Life in a Free World

 

Norman is doing great.  After spending the night waking up his Abba every three hours, and gulping down 40ccs of milk, we upped him to 50 ccs today at 7am and he just now polished off another 50ccs.  He no longer has the zonda wire (the wire straight to his esophagus) and now all he has left are his stitches, a single IV wire just in case, and my personal favorite, four emergency starter wires connected to his heart.  Its a strange phenomenon to consider the fact that my 4 week old son is walking around with 4 wires hanging out of his chest.  Consider the possibilities.  Can i charge my phone from it?  Can i connect him to FM radio?  Can we attach him to an app that will allow us to travel through the arteries and veins inside of him?  The future is here now, and its connected to a four week old.  

Alas, when he leaves they will detach the wires.  Then the future will be behind us.  

He is behaving very well, Baruch HaShem, we have no complaints.  The No Gagging Allowed rule that Fraidy and I enacted yesterday is being respected moderately, he is trying his best to not let it affect his eating.

On Shabbos we met a mother who's daughter is checked into the hospital for some treatments.  On Friday night she brought the baby to The Old Apartment and we mentioned that it was very nice that the hospital let her take the baby out. She looked at us confused and said: "They didn't let me, I just took her out without asking."  Ahhh... Israeli Parenting.  These same mothers will grow up to the be the ones that will walk into a war zone in order to bring her soldier son food for Shabbos.  Its starts with birth.  So yesterday Fraidy mentioned that she had run to The Old Apartment to get the stroller and some food, and I asked how she did that, assuming that she would never take the baby out of the hospital.  She told me she took the baby with her.  I paused.  Asked her to repeat herself.  She laughed, and said she didn't take the baby, she asked the nurse to watch him for a minute, as he was sleeping in his cage.  My heart restarted and I complimented her on the practical joke.  

The current issue now is weight gain.  They want to see him gain weight, and the last weighing showed he lost a few grams.  So now we hope that he upps his weight, keeps eating well, and Gd willing, we'll be home before we know it.

Stay tuned.

And now this blogger is going to a take a nice long nap.  Till next feeding time.  Man, being a nursing dad is tough!

0421: Done and How?

Second bottle, done. Down the hatch. Polished off. Hit him with another. Fraidy is going to be ecstatic. Nurse says 24 hours of this and they take the nose tube out.  Also next feeding she's upping it to 50.

How do women wake up for their babies every three hours? This is some terrible kind of torture...
Why do nurses scream across the hallways? I mean I know they are working, but they don't realize everyone else is sleeping?

0130: Down the Hatch

After filling up a diaper nicely, the baby just polished off 40cc from the bottle! The nurse, Norman and I just had a celebratory dance.
Norman is back in his cage and I'm going back to sleep.

He's Out!

It's late. It's been a super long crazy day. Here's some quick updates.
After getting a blood transfusion they finally got around to releasing Norman from the ICU.  It was about 4pm when we got our room.  The timing while hectic, was also great because the kids and my parents were here so they all got to see him.
All medications were removed, and now it's a question of eating. Unknown to us at the time, that's turning out to be a more difficult question than we hoped. The baby is having trouble taking down a bottle, as he keeps gagging every few milliliters. After five to ten minutes of trying, if it doesn't work, the nurses pull out into the infuser and infuse it into the pipe still connected to his nose.
Tonight we are roommates. The nurse will come in in an hour and a half for the first feeding of my shift, and then again three hours later. It's gonna be a busy night. Fraidy is sleeping peacefully in the apartment. She deserves it.  Tomorrow she will releive me while I go get a little nap.
That's the plan. That's how we survive. Norman is having pep talks to explain how serious this is and how the gagging must stop.  So far the success rate is about as good as my high school basketball team... Not very.
Better get to bed. I'll try more tomorrow, or perhaps during the night if im wide awake.
Why is it so hot in here?
Why do my roommates think it's OK to have two adults in their space and talk the whole night?  Not ok.

Of Nurses and Men, The End is Near

The Morphine and Dormicum has been turned off.  The baby cries and his voice is scratchy and weak, but its there.  The nurse felt he was probably in pain from something so she brought him some Acomal.  We tried giving him a pacifier, but I didn't want to force it, and he kept pushing it out.  Looks like he's going to need a little sucking therapy.  We'll know more when we try to feed him.
They told us his bilirubin count is too low (its at nine), I find this quite ironic, since we spent his first three weeks fighting a high bilirubin count.  The doctor explained that after surgery, the body is in shock and slows down blood production. Therefore they want to push some more blood into him, so he is getting a liter of fresh blood now.
The good news is the doctor confirmed he will likely be out of the ICU today, sometime in the next few hours.  At that point we will be able to hold him and dress him and show him off to his family.
His nurse today is getting negative parents points from us.  She's terse and impatient with us, making us feel like she'd prefer we weren't in here.  After a week, she was the first who told us we can't eat in here.  Nevermind the other nurses all eat and talk on their phones.  Hopefully, we'll be out of her hair soon enough.
The baby switches between sleeping and awake often.  I think he is either uncomfortable or in pain from something.  Plus you know, a big wire going up his nose down his esophagus might be uncomfortable.
Thats all to report for now.  Happy Channukah everyone.

The Monday Evening Post

The baby is doing well.  The pipe from the left is oxygen blowing on him, and he has a food tube infusing into his nose. He is currently eating 20 ccs of milk, his first meal for today. They had to make him fast today because of the respirator extibation.  He is still on morphine and Dormicum, that will hopefully be turning off tomorrow.
Tomorrow, assuming his numbers keep up, they start disconnecting him and move him out of the ICU.  Man, that will be nice. It just so happens the kids and my parents are coming tomorrow, so Norman has excellent timing.  A beautiful way to celebrate our anniversary and the seventh day of channukah, all of us together.
Here is a picture (approved by the censors as ready for release), sleeping with his train blanket and next to his animals, Norman and Rockwell.
Sleep well our beautiful hero, tomorrow will be a busy day, Bezrat HaShem.

He's off the respirator!

We're very excited. Twenty minutes ago they took the baby off the respirator.  He has an oxygen mask now and he is still on a small amount of Morphine and Dormicum. They have assured us this is the home stretch, the removal of the respirator was the last major hurdle.
Almost done.... Almost there.
Almost home.

Norman and Rockwell are standing by his side in full support.

Day 7 in the ICU

They removed the second draining pipe from the baby today.  Now he has 3 IVs, one central line, 2 emergency wires (connected to the heart just in case) and still on the respirator.
He often lies awake in bed looking around.
Doctors want to keep the respirator in a little longer, although he is doing all the breathing on his own.
More updates if anything changes.

Evening update

The baby is doing wonderful.  They moved the respirator breathing down to 8, and as of publishing time, his RR (respiratory rate) is 28, which means he's putting in 20 breaths per minute on his own! That's great! The nurses are very optimistic that he will be off the respirator tomorrow morning. Optimism is a good thing. I like optimism. 

He is wide awake now and has been for the last couple of hours. Unfortunately he doesn't make a sound when he cries, (which is so sad) because of the pipes in his throat. He also has a lot of fluids in his mouth so he looks like he's gagging sometimes. That's pretty scary. The nurses insist it's OK.
He is down to 0.30mg/hr of Morphine and 0.2mg/hr of Dormicum.  Almost there..

The baby has on his waldo hat, so they all call him Waldo here in the machlaka. All the nurses love him. They say he is the cutest.  Yesterday in a shift change I overheard the nurse saying, "this cutie here... is really cute."

We got a beautiful gift from my work today. Meet Rockwell the camel. Rockwell brought with him several boxes of chocolate. It's too bad the baby can't enjoy the chocolate. Most likely we will eat all of it for him.

Don and Sara, Maya, Dafna and Raina shlepped all the way out to the hospital to visit with us for over an hour.  That was so nice.  Anytime someone visits, it cheers up our mood.  They brought us more chocolates (we can never have enough) and the most adorable outfit for the baby.  Thank you to them.

Tonight is the sixth night of channukah.  The kids are coming Tuesday, I hope we can light with them.

       

Lunch Break

Quick update.  Just before we went to take lunch, they let me watch as they replaced the tape around his respirator tube and took out one of the drainage tubes.  First time I saw his face without tape on it since before surgery.  He looks great.  They removed one of the drainage tubes from his chest, which is great. It means most of the fluids are out from inside his body.  He still has a drainage tube in, on the right side.
The good news for today is that the baby is on half the respirator and half his own breathing.  He is doing about 15-22 reps per minute and the respirator is giving him between 15 and 25 reps per minute.  I'm excited about this, it means he's closer to breathing on his own completely.  He is currently on 0.5mg/hr of both morphine and Dormicum.  (Until now it was 1mg/hr).  Dormicum is the drug they use to sedate him.  Cutting it down means slowly waking him up.
I doubt they will remove the respirator today.  My guess is tomorrow, assuming the rest of the day and the night passes without incident.

Small edit: the respirator is giving him 12 breaths per minute. Then sometimes he adds anywhere from 1-10 more breaths, making it a 15-22 total respiratory rate. Less when he's sleeping, jumps up when the nurses bother him.

Parenting in the ICU

One of the main discussions that keeps popping up from the nurses, as each new one comes on to a new shift goes something like this:
Nurse: "Is this your first?"
Us: "No, our fourth."
Nurse: "So why are you here?  Go home to your kids."
Us: "How can we?  Our baby is lying here on a bed in the ICU!"

There are about 8 babies right now in our ICU ward.  Last week, it was very quiet here.  It seemed like we were the only parents who were around most of the time.  This week is a little busier.  I think for about 5 of the kids at least one parent, sometimes two, are here most of the time, or at least much of the day.  There is a mindset that parents don't need to sit with the kids all day, and certainly don't need to be around all that often.  The rumor is that one family is not even in the country right now and they call in to see how the baby is doing.  Other families come in for a few hours and then leave.  Only two or three of us are here sleeping either in the ward or in an apartment nearby.  There is a degree of logic to it... there isn't much for us to do.
Nevertheless, its something we have trouble wrapping our heads around.  How can you not stay with your baby?  No matter what, wouldn't you want to be with them as much as possible?
Compounded with the question of how much parental presence is necessary is the question of how involved parents should be.  Some nurses were pleased with us when we rearranged his blanket or brought his hat, (one even praised us and asked if we wanted to become ICU nurses, saying they are short staffed :-))  Others answer our questions, but give the impression they don't need our help.  I've heard nurses (or nurses in training) tell me that parents should be very hands on and involved, and one mother tell us to never leave him and constantly make sure everything is ok.  We ask questions a lot, and ask about whats going on and what's the plan, but we try not to nudge too much.  Last week when they were monitoring his temperature regularly (which they stopped doing now), whenever he went into low 36, I asked the nurse if we could warm him some more.  Some nurses appreciate it, others I think feel they don't need the reminders.  But all of them here are kind to us.
Part of the reason parents are more or less involved depends on the case of the child.  Unfortunately, one nurse explained to us yesterday that some cases here in ICU are not as promising as our son.  The rumor is that the baby in the room next to us who's parents are not in the country, is a very complicated case.  I saw a conversation going on yesterday between parents and either a nurse or a doctor that looked very intense.  The nurses explained that some cases, the parents can't handle and just need to stay away.  They have a life, a family, and other things that they need to block the pain out and move on.  Obviously its frightening and terrible, and never anything that anyone should have to go through.  There's no question that the trials and tribulations that some of these parents have to live with, not to mention the decisions they have to make will haunt them for years.  I think this is part of the stigma in ICU parenting.  There isn't too much we can do here anyway; the beeps, buzzing, bubbling, doctor nurse traffic and intensity of being here doesn't make for a pleasant environment.  So some nurses recommend and some parents prefer to just stay away, and continue with life until there is something for them to do.
Baruch HaShem a bizillion times for our family.  Thank you to my sister in law for taking the kids the first few days.  Thank you to my parents for flying in to watch our kids.  Thank you to my brother and sister in law for hosting them and helping out.  Thank you to my in laws for the food and for coming for shabbos, and for watching the kids next week.  Thank you to all our family for the support, visits, gifts and food.  Thank you to all our friends for the help and support and offers for assistance.  We are able to be with our son and to talk to him, care for him and watch over him because everyone else is pitching in.  We couldn't do it without all of you, and we appreciate it so much.  From Norman's heart, and from ours... to yours.  Thank you.

Day 5 in the ICU

812am: I walked into the room right after shachris, and he was half awake, his eyes peeking through beneath drooping eyelids.  I walked in and started talking to him and immediately his eyelids popped up and he started looking around.
815am: I was just kicked out of the ICU for doctors rounds.  Fraidy and I are a bit on pins and needles, as we're hoping today will be a big day.  The baby's numbers look good, his diapers are full, and the wheels have been set into motion to begin taking him off the sedation medication and begin letting him breathe on his own a little.
Yesterday afternoon, the nurse said that she turned the respirator down a notch to see how his breathing would be, but she didn't like the results, so she put it back up.  This doesnt surprise me, he is still on a heavy sedative, so I wouldn't expect his lungs to be pushing too hard.  After doctor's rounds, we should know more about what the plan is for today, but we're hoping its all good news.

Here's hoping for the best.

He's awake!

When we arrived this morning at 9am they told us they were taking him off the tracrium and slowly wake him up. 

After davening he was moving slowly and we saw his eyes moving around under his eye lids.
He completely opened his eyes shortly after that. After a few minutes of open eyes, he was tired so he went back to sleep.
Fraidy and I spent the afternoon taking turns with him watching him sleep. After maariv I ran up to check on him. The nurse wanted to wake him up so she could wash and moisturise his back. She was talking to him but he didn't open his eyes. I walked in, started talking to him and rubbing his forehead. He opened his eyes right away. Big blue crystal clear eyes.
We're very excited.
Tomorrow they will start taking the extracting tubes out of him and letting him breath more.

More later.

Shabbos Channukah, The Old Apartment and Norman's 4th Shabbos

First updates on Norman since this morning:
When we were sitting there this morning speaking to the doctor, we noticed there wasn't much urine coming out.  Since this is the only metric holding us back from waking him up, we watch it constantly.  We came back to the apartment around 10 for some things, and at around 1045am Fraidy went back to the nurse.  They told her the catheter had a blockage in it, so they took it out.  Now they will use the weight of a wet diaper to measure his urine once an hour.  Grandma, Grandpa and the kids and Meirav came to visit (more on that later) and when we returned to the ICU around 130pm, the nurse said she would check his diaper now.  There was a little bit of pish in it, so she started to push down on his bladder and urine came out like high pressure stream from a garden hose.  Another push on the bladder, another stream of pish coming out.  (This whole experience was very weird... very...)  She weighed the diaper and it was over 30 ccs.  So was the diaper before that one.  Which means that we have now started to hit the cc metric we wanted, as long as we rely on the diaper weights.  Also the color of the urine is a good color.  He was cold again, down to 35.6 degrees Celsius, so time for the warm blow pump again.  Fraidy and I are placing bets that Sunday morning, if all goes well over Shabbos, they will start to wake him up.  We hope... We daven.
Enough about pish.

The kids came by today, chaperoned by Grandma and Grandpa.  We gave them gifts, and ran through the sculpture garden.  I showed Naama how to look at a Van Gogh (up close, far away, up close, far away).  We got ice cream (naturally) and enjoyed a nice lunch of toasts, exotic sandwiches, and Eliyahu and Batsheva ate my salad, so I had some soup.  We took some nice pictures and gave hugs and kisses for shabbos.  We would love to be with them for shabbos, but its clear to us that we need to be on top of the nurses here and we need to be with our baby.  Everytime we aren't there, there are more surprises.
Bubby and Zaidy are kind enough to join us for Shabbos in The Old Apartment.  (They are in room 10, we've got room 9.  Its like we're in an old western inn on Main Street.  I feel like going down to the bar, ordering whisky and asking the piano player for an old piano rag.  This goes well with theme of Norman being the first Kutliroff "cow"boy).  We're looking forward to some nice hot home cooked food, not to mention egg salad.  Some of our fellow apartment mates showed up an hour ago.  Two very chassidish men.
I commented early that I fear the spirituality of this shabbos, as the ICU is filled with monitors, lights and computers, not to mention all the automatic doors in the hospital.  A friend of mine disagreed, and said the diversity of people mixed with prayers made for one of his most powerful Shabbosim.  I wont be opposed to that.
Coincidentally my brother and his family are in Israel and are with my brother in Alon Shvut for shabbos.  My parents are there caring for my children and enjoying the warm family fun.  I wish we could be there too.

Tonight we light 4 candles of channukah.  Lets keep these lights going, and may they strengthen our ill and bring forth complete healing.

Have an amazing shabbos everyone.

PS - Today was a day of sunshine between rain clouds.  Getting to see both my parents again, spending time with the kids, and getting outside a little was wonderful.  Additionally I ordered two things that my mother brought with her.  6 bars of World's Finest Chocolate (YUM!) and the second two books in the Trilogy: William Shakespeare's THE EMPIRE STRIKETH BACK and THE JEDI DOTH RETURN.  I will leave you with a few lines for you to contemplate over shabbos:

page 155 of THE EMPIRE STRIKETH BACK
Act V, Scene 3, line 135.
LUKE: O, he hath spoken much.  And he hath told
           Me of the truth - that thou didst slay him, aye
           And without cause or mercy, murderer
           Most vile and wretched!
VADER:                                       --No, I am thy father.
LUKE: Nay, 'tis not true!  Its is impossible!
VADER: Pray, search thy feelings, Luke.  Thou knowest it
                Is true.
LUKE:              --Nay!


Classic. That William Shakespeare.

Doctors update

Right now, three days after surgery, they want him to get more fluids out of his system.
They aim for 30-50ccs an hour. Currently Norman is doing ten ccs an hour.
This is OK.
They aren't taking him off paralysis yet because they feel they want the fluids out of the body first, so the movements don't put too much demand on the heart.
So first fluids, then removing paralysis.
He also said that if it was 7 days since surgery and his output is still only 10ccs an hour then they would wake him even so. But for now, they prefer to be extra cautious since its only three days and wait longer for more fluids to extract.

I asked about the respirator. He said after the paralysis is removed, they will allow him to breath a little on his own and if it's OK they will eventually remove the respirator.

He also added that considering the surgery his numbers look very good. Also, he's not as blown up as other kids he's seen. He admits he is swollen, but not as much as other kids.

Day 3 in the ICU

Day 3 and all is quiet.
We basically spent the day watching the baby's pish bag fill up.  When we arrived in the morning, it was below 100, and now its holding at 250 and increasing.  (If you wish, you may take a moment and contemplate the idea that we are watching a plastic bag... fill with urine.  So... we are watching urine flow.  That's correct).  We do believe Norman has been doing a great job at it, and we are rooting him on to keep it up.
This is all we know really.  The ultrasound results came back around 345pm,  They told us everything was fine with the kidneys.  We asked what's next and they said they just want him to keep getting the fluids out of his body.  So there you have it.
By the time we got back from candle lighting and dinner, it was the first time I noticed the baby is really blown up.  We were warned that they blow up like the Stay Puff Marshmallow Man and that's not so far from the truth.  The baby had skinny chicken legs when we checked in, and he had a small narrow face.  Now his face is more like a big round ball, and he has large delicious pokeys.  (Apparently, no tickling is allowed in the ICU... who knew?)
They put a strange cream on his eyes.  I guess its to keep them hydrated since he doesn't move his eyelids at all, but its a little strange.
The baby is eating more now.  About 10 cc's infused every couple hours.  This is great.  This means he's eating mother's milk now, and we are happy about this.
We had to bring our own bag of wipes.  They seem to feel wiping his tush with a tissue would be comfortable, but we as parents, seem to feel different.  We offered to sponsor a bag of wipes to be used for each wiping session.  Social medicine, being what it is and all.  I mean consider the hundreds of thousands of dollars of equipment in these rooms, but soft baby wipes is over budget.  Go figure.
During the day we talk to the baby, we play music for him.  We fix his blanket and straighten his hat.  Much of the conversation between us and the nurses today was devoted to how parents react to babies in ICU that are sedated.  Fraidy and I don't see many parents here during the day.  Its a bizarre thought.  We don't want to be farther away than 5 minutes at any time, and yet there are babies here that we have not ever seen their parents yet.  One nurse said the parents: "call in once a day".  To be fair, some kids are here for several months, but still.  We are so thankful to our families and parents for watching and taking care of our three children at home - there is no doubt in our mind that without them we wouldn't be able to be here with the baby.
We're not huge fans of tonight's night nurse.  Since I've been here, she hasn't walked in the room once.  She was also trying to convince Fraidy earlier today to go home and be with her other kids.  I guess there is an Israeli mentality at play here, but we don't have it.

As far as we can tell, in our vast medical knowledge (sarcasm) there's no reason to not take him off Dracrium and start getting him to move around a little.  I imagine we will wait until the doctors examine him tomorrow.  Shabbos I expect will be one of our less spiritually fulfilled shabbosim.  I'm sure I'll have a blog post about it after Shabbos.

We lit three candles tonight in honor of the third night of channukah.  It's sad to light without the kids.

That's all I got for tonight.
May we all hear only good news.

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What does waking up mean?

I've been talking a lot about "waking him up".  I wasn't completely sure what that meant, though I thought it meant removing him from the respirator.  It doesn't.  At least not entirely.  It's a process, and Ill go through the process now.

The baby is currently on 5 medications.
Tracrium - This keeps the baby from moving around.
Dormicum - This is the sedative, keeps the baby sleeping.
Morphine - Obviously.  Helps Norman fly the friendly skies.
(Similar to Adrenaline) - He was on adrenaline until this morning.  Now they moved him onto something else (forget the name) which helps the heart muscles to pump.
Milk - He is starting to get his mother's milk on a regular basis.
Pishing Meds - The nurse explained that after heart surgery, babies have a hard time urinating on their own.  The baby is on medications to help him pish more.
So now what?  Basically, when they feel all his stats are good, meaning his blood pressure, heart rate, blood test results, o2 sats, temperature and urine are all looking good they will begin to to remove the tracrium medication and allow the baby to move around a little.
If his moving around is looking good, then they will begin the process of the respirator.  They let his lungs breathe a little, and let the respirator breathe a little less.  They play with it enough until they are completely satisfied that he can breathe on his own, and then they remove the respirator.  If i remember correctly, then they will remove the sedation and let him officially wake up.

When he was in post-op he had three tubes in him, they have removed one now.  Progress.

The current status as of right now is that they didn't like his recent blood work, and they ordered an ultrasound for his kidneys.  I asked why, and the nurse explained that it has to do with the output of the kidneys.  So we're ultrasounding now.

Quick morning update

The night passed well, Baruch HaShem.   He has more pish in his bag than when we left last night.   The nurse says they already took an xray and the doctors should be here within the hour. If he has less (or no) fluid in his lungs and his pish has improved, they will begin to wake him up. If not, they will wait another day.

More updates after the doctor's visit.

Norman the dog is wearing a diaper in solidarity for Norman's pishing. 

On a lighter note...

I think of this comic every time the cleaning lady comes in to clean the rooms in the ICU.  Do you think there is a special course for Janitorial ICU Cleaners?  They never mentioned that on career day.  I wonder if there is special certification for it.

End of the day... it could be better

Today went well.  Two and a half hours ago we came to visit and sit with the baby a little.  The nurse informed us then that his potassium output isn't great.  They would like to see more urine coming from him, especially since they gave him milk a few times today.  We saw the baby had pished a little, and the doctor came in and saw the 15cc's and said: "good, לאט לאט".  Meaning: "Good, slowly but surely."  We left in a good mood, happy to go light candles and eat dinner.
We came back and asked the nurse how he's doing.  She responded: "No pee pee", and it was a very disappointed tone.
Uh oh.
If he doesn't produce enough urine, he certainly won't be ready to come off the respirator tomorrow, and I don't want to think what else that might mean.
We sat down and started saying tehillim some more.
I put on some music for the baby to listen to and decided to blog this update.

Please keep davening for him.  Thank you.

Update: The nurse just came in and said: "Its ok.  His numbers are very good, and its not unusual for a baby in his condition, considering the pressure on his heart, to have a hard time with output.  We just need more patience."
Life is a roller coaster ride.  In the ICU, its a roller coaster ride, during an earthquake, in a hurricane.

A Word About Service at Schneiders

 I've mentioned it in passing before, but I'll mentioned it again now.  We're very impressed with how the staff here relates to parents.  I've never spent long periods of times in ICUs at children's hospitals, but compared to my experiences at Alyn and Shaarei Tzedek, as well as my own experiences in a former life at Haddasah Har Tzofim, something is better here.
In short, its so much better here.
In the past, I'm used to a "if you ain't holding your intestine in your hand, don't bother me" attitude, Schneiders seem to turn bedside manner on its head.
From the first day we had our echo, to all the action in between, the doctors and nurses have been patient, kind and calming.  Sure, its a hospital, so everyone is busy.  But they are always kind to our questions and prodding and its such a relief.
A few examples:
When we arrived to check in on Monday, the cardiology secretary had a list of things to do, and made sure that list was getting checked off.  She called departments, pushed us in, got us our room, asked if we needed anything else.  Living in Israel ten years, I've never experienced that before.
Before the surgery, all doctors came in to explain the procedure.  We met in a private room.  We talked.  The doctors did not move from their seat, until we gave the ok.  No question was too small, no issue not discussed.
At 1245pm the day of surgery, as we were getting ready to come and ask the nurses to call into the OR, they preempted us and asked us to come in to talk to the doctor.  They assured us 5 times everything was "בסדר".  That didn't help.  We ran to the hospital, our hearts beating louder than an african jungle tribe, and banged (politely) on the Department of Surgery doors (which were locked).  We were buzzed in, the secretary asked what we wanted, we answered huffing and puffing and pale faced that we were called in to speak to the doctor.  We waited five minutes and out came Dr Birk, head of cardiology at the hospital.  Shorter than I thought... profile pictures don't show height.  She told us immediately everything is great, the surgery went well, and they were closing him up now.  Then she asked us why we were so nervous, she told the nurse to tell us everything was ok.  We told her that we didn't expect a phone call, and she had effectively scared the wits out of us.  We then talked.  For at least ten minutes.  We talked about where we were each from (she has a close friend who lives in Providence!  I always win at Jewish Geography.), we talked about Truncus all over the world, and we talked about how she took her procedure from the States, and has been very pleased with it's results.  She didn't not flinch to move until we were calm.    Still having two hours to kill, we went to daven Mincha, and visit to the hospital mall.
Same thing happened in the ICU.  The nurses explained everything to us, kindly and with patience.  We never feel like an outsider, and are always welcome to ask anything and get the answers we want.

I have to say, the hospital is doing something right.
Now, we need to talk about parent's hospital beds.  These chair/sofa/cot things are not beds.

Day 2 in the ICU

We passed a relatively peaceful night in the apartment while the baby was being taken care of in ICU.  After going to minyan in the morning and eating some breakfast we came over at about 8am.  He was being examined and poked and xrayed and and taken pictures with circles and arrows and a paragraph on the back of each one explaining what each was about.  While the doctors are doing their rounds and while there is an Xray being taken, parents are not allowed in the ICU  (they explained to us that if a parent faints while something is occurring in the ICU, they prefer to focus their attention on the child, not on fainting parents.  This was reassuring).  So we had to wait outside impatiently wanting to go in.
Finally we got in.  The nurses and doctors updated us that the night went well.  His measurements for oxygen weren't great, and they wanted his O2 sats to go up.  (I think I got that right).  I asked why there was a difference if he is on a respirator and they said its because they are letting the lungs work a little, and the respirator to work a little less.  Thats why the o2 metrics weren't great.  But they assured us it's ok, and all it means is they will let him rest another day before starting to wake him up.  So currently he is in stable condition, and they are letting him rest today.
Meanwhile, when we arrived his temperature was 35 degrees celsius and falling slowly.  They gave him an warm air pump to heat up his blanket and that was keeping him warmer.  35 degrees is not a concern, but they do want him to warm up, not cool down.  We brought him his waldo hat today and gave him is warm train blanket.  The nurses were pleased and allowed us to give them to him.  Additionally last night we left the baby with a soft, cuddly dog, which we will call him Norman.  So now Norman has a pet dog named Norman.  And Norman sits at Norman's side.

We went down to get something to eat, and Eli and Shragi came over which was nice.  When we came back we were pleased to see his temperature is up to 36 now.  Also they gave him 5cc's of milk, which is holding down nicely.  They also reduced some medication, which results in lower blood pressure, so his blood pressure fell a little (which they said is fine).

The beeping has stopped for now.  We just finished another respiratory cleaning, and all is quiet on the Norman Front.

Life in the ICU

Baby Norman right before surgery

Now that we've moved past the anxiety of waiting, now we have the anxiety of the ICU.  A roller coaster ride of beeps, suctions, watching, and cleaning.  The baby is in a forced comatose state now, and on a respirator, because they are concerned how strong his lungs are considering all the non-oxygenated blood that he was breathing for the past three weeks.  (Thats part of the reason why they wanted to rush to do the surgery and not wait longer).  So now they put him on a respirator, let the lungs relax, and then they will slowly find a time to test the lungs and see how he is doing.

Some good news is that nothing went wrong during the surgery, and we were shocked as to how quickly he came out.  We were expecting to not hear anything until 4pm, but we got a call at 115pm to come speak to the doctor.  (They said everything was fine, but they wanted to speak to us.  The phone call was a minor heart attack for us, but everything was fine! ).

And now we are in the ICU.  They gave us a tour when we got here.  Besides the respirator, the baby is on several medications, one of which is adrenalin for the heart to get it pumping well.  Some are pain medications and some are ... other stuff.  I wasn't taking notes!  It was a lot to handle!  He has three main tubes coming out of him along with a catheter.  There is a nurse assigned to him and she is working on him now.  Her name is Soha.  She's nice.

 They will suction his breathing every hour or two, since while he is on a respirator he can't clear out the mucus himself.  That leads to alarms once the respirator is taken out.  The automatic medicine machines are constantly monitored, and some beep when the battery runs low, or whatever power line they are getting.  I can see, this is going to be an exciting time.

We will likely be sleeping in the apartment tonight, since there isn't really anything we can do right now away.

Thank you to everyone for your prayers and learning.
Thank you to my wonderful family for taking care of my kids while Fraidy and I are out.
Thank you to HaShem for watching over and taking care of our baby.

Channukah candles in less than an hour...

He's out!

Baruch HaShem, our little heart warrior is out of surgery and he is doing great.  He received a 12mm cow's carotid (I think i understood the Hebrew correctly), and he is currently in the ICU.  This is a critical time now as we treat him and watch him, and slowly pull out tubes and medicines.  Baruch HaShem, everything went well in surgery, and everything should continue to go well now.
Please continue to daven for Tinok ben Fraida Ahuva.

The Bellinson art museum

As we waited for news on the surgery, Fraidy and I went over to check the works in the art museum next door.  I have to say, the works are really high class and quite stunning. There are more than a few Van Goghs, some Monet and Manet, I saw a Renoir and many others.  Its certainly worth trip out, and most importantly its a wonderful addition to a hospital.  Outside, between the buildings is a sculpture garden and its a lovely place to sit and relax.  Makes a big difference on a stressful day....

...And he's in

The nurse and anesthesiologist just came over, verified his tags, took him out of the stroller and took him in.  That was mortifying.

Waiting to go in

We are in the waiting room by surgery.  The baby has been fasting since 330am, and he is absolutely the most precious baby.  He hasn't cried or asked for anything.  He is just sitting in his car seat sucking his pacifier... waiting.

I've set up a page that tracks tehillim: tehilimyahad.com/mr.jsp?r=aX402W0toq

Please help us finish the entire sefer.

May all go well today and we hear only good things.

Summary of the Day

As the day winds down, and the hospital floor is filling up with snoring women and kvetching babies, I will sum up the last 5 hours of the day and finish up with some thoughts and bullet points.

When we arrived we were given a schedule for the day (or a "tofes tiyulim" for you israeli people).  We were actually impressed.  We were so used to hospitals finding every way possible to make you get lost, we were shocked that the nurses were very on top of us all day.  When we finished one thing, they made sure the next thing was ready to go.  So here's a list of today's events:

1 - The E.K.G.  That I mentioned before.  Hard to believe in 2014 we are still using tools that look like they were developed in communist russia.  But that may just be a socialist medicine thing.
2 - Getting the room.  We were not pleased to find our room has two other inhabitants.  Not to mention that they are of a different Middle Eastern ethnic variety.  Plus she's snoring now.  But, what can you expect?  We were very pleased to find out that we wont be here again until the baby is out of ICU.
3 - The Xray.  Norman (we call the baby Norman) didn't like holding his head up straight.  He prefered to look sideways.  We made it through.  They had some interesting artwork on the walls.  Xrays of cellphones, mixers, watches and milk bottles.  Cool concept!
4 - Doctors and nurses meetings:
a - We started with the anesthesiologist.  I have to admit, I've never met an anesthesiologist who is a fun and exciting guy.  Either its an occupational hazard or I've met the wrong anesthesiologists.  But this guy had the bedside manner of a brick wall.  Not to say we wasn't a nice guy.  He was.  I also think he is a mountain biker - he had a large scab on his arm - he must have fallen off a bike.  But he was very clear about the procedures involved, we talked about when to stop feeding the baby (not later than 4am) and we talked about how the anesthesia will work.  Norman will also be in an induced coma state for a few days following the surgery.  Signed the form.  Good luck.
b - We spoke for a while with the nurse.  (I got scolded for using the meeting room for personal blogging time, but to be fair... there really isn't anywhere else to sit!)  She did a medical background (that must be the 27th time since Norman was born), and then we discussed how the unit will work once surgery is over.  At first we didn't like her, but she started to grow on us.  Turns out, she doesn't talk very much, but she is very nice.  Also, she's Arab, so there's that too.  We got a tour of the ICU and learned that beyond sitting watching your baby sleeping, there is nothing for a parent to do until he is released from the ICU.  This turned about to be good news for Fraidy and myself, since that means we can go sleep in the apartment at nights, and get much needed rest.  (We aren't allowed to sleep in the ICU).
c - We met with Dr George Francis, the "surgeon".  This was by far the highlight of our day.  He was kind, patient and fun to talk to.  Not in a joking way, more like we can ask him anything and he answered seriously, honestly and waited till we understood.  (Even when I got his Hebrew wrong, he explained it again in a slower more concise Hebrew).  We talked about what he will do during surgery, and some of the risks.  We talked about post surgery, and some of the not so pleasant details about the first few days after surgery.  We were very pleased with him, and look forward... well no... we are ready, as ready as we can be, to give him our son to slice him up, fix him, and put him back together.

Some thoughts from the day...

• There's an art museum in Belinson!  The hospital next door has an extensive art display.  Its really nice.  Not to mention a very relaxing sculpture garden.  Its really very nice.
• Hospitals in Israel don't do enough to make parents comfortable.  A horrible bed/chair next to the baby, with the possibility of maybe getting linen (maybe not....) fit for only one parent, is not a positive experience.  I know hospitals aren't meant to make people comfortable, but at least don't torture them.  Once the baby is in ICU, the parents don't have many options for sleeping.  There is a terrible "parent's room" which I am sleeping in tonight.  I will not discuss it.
• I like that there are more than 3 minyanim a day here.  Its nice.
• Fraidy and I were extremely impressed with how patient the staff is here with parents.  They sit down and don't leave until the parents are satisfied all questions have been answered and discussed.  Then they sign the papers.  If you have to slice up your kid, this is the way to do it.
• Hospital rooms are hot.
• Its weird to sleep in rooms with complete strangers who are only inches away from you.
• Its disconcerting to not be able to sleep next to your baby in the ICU.  I understand it, but its hard to leave the baby here alone.
• Truncus is more rare than I thought.  Dr Francis said they only do 2 or 3 a year.
• We are touched, honored and pleased by all the tehillim and learning being organized.  Thank you so much!

The Old Apartment

Make a note of this: when a family member gets married, be sure he brings someone valuable to the family.  Such is the case with my newly married brother in law.  My sister in law has hooked us up, big time.  Her grandfather is the Rav of Bellinson hospital, of which Schneiders is a part of that network.  He referred us to a Arik Cohen, who manages a "chareidi apartment" across the street from Schneiders.  I wont say its the grandest place I've ever had the pleasure of visiting, but it certainly is significantly better than any option of sleeping in the hospital.  We've parked are overloaded luggage and four months of food at the apartment.  There is a fridge, AC and heating, the bathroom has been redone, which is nice, and the beds are fine.  A private room, with a shared kitchen and bathroom is a wonderful wonderful find.  So thank you Tamar!  Now we just have to decide who gets to sleep in the quiet room across the street or in a room with some cousins of ours we prefer not to be with.  I'm sure there will be more on that later....
Meanwhile we've done a E.K.G. (called an "eh-ke-gay" in Israeli) and an XRay.  Now we are waiting for doctors, nurses and the impending request to change rooms to be with people more of our direct ethnic background.  Its now 238pm in the afternoon.  I would love a nice nap now...

Signing in

We have arrived at Schneider's hospital.  As far as hospitals go, it could be worse.  (Alyn, for example, is worse).  We've been put into the system, and are now waiting for the battery of tests scheduled for today to begin.  They gave us a nice checklist of activities that we will check off for today, including meeting with the doctors, surgeon and nurse, as well as an Xray and miscenallaneous other activities.
Either way, we're waiting.  Waiting to be called to start the tests.  In the meantime our overloaded car is waiting in a hot parking lot, and I'm anxious to unload it.  Some wonderful people have hooked us up with a "chareidi apartment".  Supposedly it's nice.  If we can unload our stuff there, and its a comfortable place, that will make these next few weeks much more bearable.

Next update, once i've got time to sit and ponder...

The journey begins...

Our son was born on November 26, 2014 with a heart defect called Truncus Arteriosus.  Its a congentative heart defect where the pulmonary valve is not completely formed correctly, and open heart surgery is required to create a pulmonary valve and repair a heart wall.
I've created this blog to share my thoughts, update family and friends and watch as his story and journey progresses.
May this be a journey of success and good fortune for him and all of us.