Merry Christmas!!!

I can't believe that Christmas is just around the corner (4 more sleeps as Caine would say).

It has been 4 1/2 months since Brody had his surgury and you would never even know he has a heart problem.  He is growing and developing great (except he doesn't like being on his tummy as we couldn't do tummy time for like 6 weeks after surgury).

We went for a check up in Saskatoon at the end of November.  Everything looks great.  His oxygen stats are 93 and everything looks great on the ultrasound.  I really did enjoy going to Saskatoon to get this done as they have people who only do ultrasounds on children so they know what they are doing and were done in like 10 - 15 minutes.  Not like in Regina where it is a generic ultrasound tech so it takes a long time to get it done (45 mins to an hour).  They are very happy with how is doing and we don't have to go back for 6 months.  The nurses and doctors in Saskatoon we amazed that his surgury was in August as to how well his scar has healed.  By the way it is healed they would have thought that his surgury was over a year ago.  That says great things about the surgeon, Dr. Ghandi, that we had in Vancouver.  So glad that fate took us to Vancouver :)

Here is a picture of Brody today and his scar...you will be amazed as we always are when we see it.....

MERRY CHRISTMAS FROM THE WEBERS!!!!!

STAY TUNED FOR MORE UPDATES IN 2012!!!!!

Check up looks good

We went for a check up on Thursday in Regina.  We had to get an ECG and ultrasound done.  It all looks good.  They are all impressed about how nice and clean his scar is.  It will probably be 2 months or so until we have to do another ultrasound which may be in Saskatoon in order to get all the accurate pictures required.  We just thought that may be a good time to take another family over night trip then and visit Fuddruckers if that happens.

Brody is such a little trooper.  In the 4 and a half months that he has been with us he has been through so much.  Not only has he gone through his gas spells, and the surgury he is now fighting the pain of cutting teeth.  He is so strong that sometimes I feel like I pull on his strength to make it through.  I was putting him to bed tonight and just watching him sleep and thought to myself I am not sure why God gave me such a special little guy but I wouldn't give him up for anything.  He is such a ray of sunshine every morning and nothing beats those little dimples to make you smile :)

FINALLY HOME :)

Sorry for the late post... we have been running ever since we got released from the hospital so I will start back at Sunday.

We went in for a chest xray to ensure all was clear and it was so we got released on Sunday.  What a feeling I think even Brody felt better getting outside.  We found that Brody was a different kid.  He didn't cry while we were driving around in his car seat and was happy just to be out.  Then we all got to the airport to pick up my Mom and Caine it was a great day.  We went for a walk on the seawall when we got back to the room.  It was great.

On Monday we all went to the Aquarium.  Caine loved it and his goal was to get through it quick to see everything quickly.  Even Brody was a different kid.  He didn't get upset with being in his car seat and just loved watching the fishes.

On Tuesday we went back for our follow up appointment.  His chest XRays were clear and his oxygen stat levels were 94 so great results.  They were happy and said we could go back to Regina and follow up with our cardiologist there.  Caine actually liked hanging out at the children's hospital because there were alot of new toys to play with.  We all went back that day and had 3 hour naps.

On Wednesday we just hung out.  I took Caine to the park and Brody slept most of the day away.  Poor little guy didn't get much sleep in the hospital so we didn't have the heart to wake him to take him out.  Also on Wednesday night Jerry and his wife Andrea came to our place for supper.  We loaded them down with our extra groceries that we didn't need anymore. 

On Thursday we were excited as were were heading home.  We decided to go to Science World in the morning as our flight did not leave until 6pm.  What a waste of time and money.  Although the dinosaur exhibit was cool the whole place was under construction and not much to do.   We then had to make our way back to the Children's Hospital to get Brody's special formula as for some reason Saskatchewan couldn't figure out how to get it.  What a gong show that is!!!!!!  We finally got on our airplane and the pilot came on the intercom to tell us that there is a freak storm going through Calgary and they could not take off until they got clearance from Calgary.  We had to sit on the plance on the tarmac at the gate for an hour before we even took off.  A one hour flight took 3 hours.  By the time we got to Calgary our connector flight had already left for Regina so we were stuck in Calgary for the night.  They booked us in at the Delta at the airport (which is a very nice hotel and has very comfortable beds) and booked us on the early morning flight on Friday.

We got on our flight on Friday and finally arrived back in Regina at 9:30.  It was a very long day as none of us got much sleep the night before. 

Now we are working on trying to get everyone back on a schedule and routine.  It is tough right now as Brody is completely messed up and for some reason his bad gas issues have just come back since we have returned home.  Hopefully that is a phase and they will go away as I am not sure we can survive that again...2 hours of sleep a night.

We have our next appointment with the cardiologist on Thursday and I will update after that.  For now here are some pics of or last week.

DAY SIX....We are getting out :)

The day has finally come that Brody is well enough to be released.  We talked to the doctor this morning and he feels that Brody is good to leave.  We had to go for a chest X-Ray first to ensure there is no fluid build up around his lungs or heart.  Once they have a look at those (and they are anticipating no issues) we will be released.

What a long road in such a short period of time.  Brody has gone from being on a ventilator to being back to his normal self in 5 short days it is amazing... the Surgerion, Dr. Ghandi, is fabulous and has taken great care of him since we have been there.  We have a bit of comfort knowing that when we come back Brody will be in great hands.

We are sticking around Vancouver for a few days to enjoy some sites with Caine and my Mom and are heading back on Thursday night.  Can't wait to get home and back into our normal routine again.

DAY FIVE...AT LEAST I THINK IT IS

I can't believe it has been 5 days since Brody's surgery.  The time just kind of balls up into one big day when you are in here.   You never really realize the time or even understand the dates while you are here... wierd feeling.

Brody is doing very good today he is just really tired.  Hospitals are definately not the place to get rest.  Last night they didn't bother him as much so he got pockets of sleep but still a bit unsettled.  This morning they removed his final tube...and this upset Brody alot but he is much happier how as there is nothing left to cause him any discomfort. They only have little stickers on him which are monitoring his heartrate and breaths per min.  What a long way he has come in a VERY short period of time.  He is such a strong little guy. 

Last night he was actually watching the Rider game and talking to the TV like they sucked (which they did).  He is smiling and kicking and playing today almost back to his old self.  We should be out tomorrow if all looks good with his chest xray tomorrow.  Then we hang out here until our appointment on Thursday morning and then we are heading out Thursday night.  We can 't wait to get home to our life.

Caine and my Mom are coming to Vancouver tomorrow so it will be great to see the little man and hang out as a family.  We miss Caine greatly.  Leaving him was almost as painful as letting go of Brody for surgery.  I now see what they mean by kids are your life :)  We love our boys to pieces and would have it no other way.

I thought I would share a picture of Brody today vs 5 days ago.  I hope this brings a smile to everyone's face like it does to ours.

Hopefully our post tomorrow will be that we are being released....

DAY FOUR....

Brody was better yesterday just really uncomfortable.  He would have had a great sleep if the nurses weren't coming in every two hours to check his vitals.  So we would get an hour or two of sleep then they would wake us up.  It sucked.  You could even see it in Brody's face...like Mom why aren't they letting me sleep.

This morning he got out one of his two drain tubes.  Hopefully the other one will be out by the end of the weekend and we can get the heck out of the hospital on Monday.  We will still have to stay in Vancouver for a few days to come back and have Brody checked out but my Mom will be bring Caine to Vancouver and we can have a small holiday.

It is getting better just REALLY rough to see him struggle and be limited to what we can do for him.

DAY THREE....

What a day yesterday.  Brody was in excrusiating pain yesterday. It was the hardest thing to be around as there is absolutely nothing you can do for him other than sit there rub his head and tell him everything will be ok (when in the back of your head you can only imagine what he is going through).  We can't even imagine having to go through this again but at least we have a few years before we have to do so.

With this procedure he gets "headaches" which they compare to major migraines.  Needless to say he had those and was not happy yesterday.  We could not console him in anyway..ie even holding him upset him.  So we talked to the doctors and they put him back on his "happy juice" pain killers and he was a much happier fella.  Also, there is a side effect to this operation where the lymph nodes may leak fat as the body is trying to get used to the new blood flow and they don't know what to do.  So he got that side effect they have changed him to Monogen formula, which is low fat, to help drain all the fat from his lungs and get his body working.  He only needs to be on it for a few weeks to clear his system then we can go back to normal formula.  Last night,  he kept fussing and mussing with gas pains so they had to give him a glicerine tip to relieve his gas.  Once they did this he has a big "fart fest" and poop and slept from 10 - 5 this morning.  We were so happy to hear that...

He will be transferred up to 3M today (the cardiac ward).  It will be quieter and hopefully he can get some rest.  We are a bit scared as we do not know what he will be like without his meds but we can't stay in the PICU forever (even though we would love to).

Once we get to our new room we will post a picture as it is amazing how far he has come from day one as the tubes keep disappearing as the days go on.

Here is the picture as promised...only the drain tubes are left :)

The Day After

Its amazing how quickly Brody has started his recovery. By the picture below you can see he's more comfortable and progressing well.



Jamie is much happier too. :)

Op day

The day started at 5am. We needed to begin by feeding Brody water before surgery so he would stay calm. After that we went to the hospital for a 6:30 am start where everyone waited until the nurses took Brody into the OR at 8am. (Yes, I had to pry Brody out of Jamie's hands)

Surgery was only 3 hrs, but, Brody was having difficulty getting off the ventilator afterwards so we didnt get into the Peditaric ICU (PICU) until 1:30pm. Once we got into the PICU it was hard to see Brody hooked up to all of the lines and machines after surgery. The staff was very supportive and reassured us as they provided care to Brody. Each patient has one assigned nurse to watch over them 24/7 which is a big part of the reason we came back to Vancouver.

For most of the day it felt as though we were living in the "Twilight Zone". By 10pm we had left the hospital to get some rest at home.

The pic below is Brody right after surgery. He was puffy and Blue in the face. The "Glenn" surgery rerouted blood throughout his body so headaches are severe for the first few days. The nurses medicate him for pain control and they'll get significantly less severe over the coming days.

Pre-Opp Day......what a long day

Well, we went through pre opp today and it was a very long day.  We were there at 8:30 this morning until 3:30 this afternoon.  We met every single person you could possibly imagine ; including their pets :).  Thankfully Brody slept very well last night but today wore him out and he is exhausted....he's already in bed and it's only 7pm local time.

The long and short of todays conversations were that his heart anatomy, which was complicated in the first place, has gotten even more complicated.  It isn't an easy fix.  The doctors and surgeons are saying right now they can't fix the current problem with one surgery as his heart has developed in such a way that he will need 2 surgeries to get him back to "normal". HOWEVER the surgeon can make his life easier by doing what they refer to as "The Glenn Surgery" which will make him "pink" vs staying "blue". 

Here is someone elses blog about the same thing and it has a great picture of what surgery etc. will look like.  http://www.severinbrenny.com/bidirectional_glenn_operation.html

This type of surgery will give Brody at least 2 more years before he needs surgery #2. The doctors arent sure which procedure they'll do at this point until they see what his heart looks like. They could chose the corrective surgery to replair his "DORV" condition or they could chose the Fontan surgury.  Kids have hearts that keep growing until they are about 2 years old, so, his complicated heart could grow to be more complicated or easier to fix but we won't know until that date.

With all this being said, Wade and I are doing OK.  We have our moments but we are trying to stay strong.  Tomorrow will be THE HARDEST day of our lives...having to hand over our little guy to be cut open for surgery.  At the same time we know it needs to be done and the doctors will do what is best for Brody.

Surgery is at 7:30am tomorrow. If Brody has "the Glenn Surgery" he will be in the OR for 3 hours and if they do the big surgery it would likely be 5 hours.  We will post the results sometime tomorrow but keep up good thoughts and lots of prayers for Brody.

THE DATES HAVE CHANGED!!!!

We are no longer set to be leaving in September.  We received a call today that we are jumping on a plane on Sunday for pre opp on Monday and surgury on Tuesday.  I can't believe it.  Things are absolutely frantic here.  I will post again on Sunday...

The Day has come.....

Hi Everyone.... We have news...Brody's saturation levels have dropped to the point where he is now scheduled to have surgury.   They have put him on heart medication to assist in relaxing his pulmonary stenosis (the muscle that elongates from one of the arteries).  This should keep is saturation levels in the low 80's where they are today. If they continue to drop in the next week or two we may be in Vancouver as early as mid-August however the surgury is currently scheduled for September 8th at the BC Children's Hospital.

You know I always knew the day would come that he would have to have this surgury but I am scared.  He is a strong little man and they are very happy with him and how well he growing.  He is currently 13 lbs and about 24inches long.  This is a great sign that he has done well this far...but you always worry about your kids and their well being. 

We did decide to venture out on a short holiday to Saskatoon.  We did some watersliding, shopping, and of course Fuddruckers.  This was Brody's first time in the pool and loved it.  He also enjoyed kicking back with his brother in the morning at the hotel. I attached some great pics :)

Once we get closer to the dates and final particulars we will update everyone...here are some great summer pics of our little man...

Still going strong

I thought I would give a quick update.  Sorry that I don't so this often but we really don't see the doctors very often as Brody is doing very well.  We saw the cardiologist last week and all of Brody's vitals are still strong so no dates set for surgury.  He will still require surgury but they are now thinking it may be between 6 - 12 months vs 3 - 6 months.

Caine has adjusted well.  He still has his moments but he is a very proud big brother.

That is it for now...once we have another cardiologist appointment

Here is what our little man looks like today.  He is growing like a weed and over 10lbs now...don't let this fool you though he doesn't sleep alot :)

Doctors are happy!!

Just wanted to give everyone a quick update. 

We have been home now for two weeks and doing well.  We have been just getting to know eachother and it is all good.  Except for the lack of sleep for everyone and Caine having some sort of a cough that we are going to get looked at tomorrow.

We have gone to our doctor appointment follow ups here in Regina.  Our Cardiologist, Dr. Kakadekar, said he is very happy with him and doesn't see the need to see him again for 6 weeks.  That was reassuring that is for sure.  We are going to our Family doctor, Dr. Leibel every week for the first month or so and then will change to every two weeks after that if things are going well.  Overall all good check ups.  We are very happy with our little guy and how strong he really is :)

One Way Ticket Please!!

Sorry for the late response but we have been running a bit since the end of the MRI on Monday.

So on Monday Brody went through his MRI.  It is what they thought DORV with Tetrology (elongating of one of the arteries).  They want him to grow into it a bit before doing any surgury to be certain that they do the right correction.  We have been told that could be anywhere from 3- 6 months out and will be back in Vancouver.  We are confident in both the Cardiac Surgeon and the Cardiologist however we are now flying by the seat of our pants and watching for signs.  It is a really odd feeling..not only do you worry about the typical newborn things but now we have to watch for signs of blue or minor distress.  Kind of scarey but I know we can do it.  Brody is a pretty tough little guy I know he will be great through all of this.

After his MRI we were free to leave and leave we did.  We went to stay at the Fairmount Hotel at the Vancouver Airport to be that much closer to home.  It was great :)  We were able to get onto the direct Air Canada on Tuesday at noon and are now home safe and sound. 

It has been quite the whirlwind to begin with and now the home life becomes interesting just due to having Caine being a bit confused as to why this baby isn't going home and why Mom can't play.  It will be an interesting few months.

Feel free to call us anytime to come for a visit...Brody loves to be cuddled.  We will still add to this blog as we move closer to the day of surgury as we have tons of doctor and specialist appointments coming up that we will keep everyone atuned to.

And Brody is free!!!

Yesterday was a great day (and not just because it was my birthday).  Even though Brody still has to get heart surgury he is well enough to not have to be in the PICU....The nurses weren't happy as they loved him.  Brody had so much mojo with them that everytime we went down there he was missing as someone was giving him cuddles.  We have been told by many doctors and nurses that they VERY rarely see this happen that a child from the PICU gets released back to the normal Mommy Baby Ward so again beating all the odds....

Brody spent the night last night with me in my room and lucky me his nights and days are all mixed up.  So finally at about 7am we got a good 3 hour sleep in....I totally forgot about that stuff but hey it is all worth it in the end.  He is also starting to eat like a little piggy which is good as he has gained weight here and they are very happy to see that as most babies in his condition do not have an easy time feeding but let me tell you he has no issues.

It has been a very emotional day for me as I believewe will be released tomorrow to go home.  It scares me to think that I could miss some sign and something could go terribly wrong.  But I have to remember that the doctors would NEVER put is health in jeporady, and there is no way they would have let him come up to the ward if he was not healthy enough to do so.  So here is to keeping it day by day and making our lives as normal as we can.

We are especially missing our other little man Caine.  I wish we could have taken him with us just for entertainment value.  I know he is loving being with Grandma and Grandpa and Uncle Kenny and Auntie Chantal took him to Chucky Cheese last night so he is getting spoiled rotten.

Once we have answers tomorrow on the MRI and plans of release we will let everyone know....

The Game Changer

Jamie's water broke early Thursday morning which took us by surprise. We went to the General hospital in Regina and were subsequently told that our original plan to go to Saskatoon and Edmonton would change. Due to space shortages in the Saskatoon and Edmonton NICU; we were sent by air ambulance to the BC Womens hospital in Vancouver.

Brody Ray Weber was born by C-Section on Thursday April 7th at 10:38pm PST. He was a beautiful shade of pink, weighed 6lbs 5oz and was 19 inches long.

Over the past few days he's been in the PICU (Pediatric Intensive Care Unit) and has posted some surprisingly good stats. His blood oxygentation levels are at or above normal and his coloration is normal as well. These stats caused a stir amongst Dr. Ghandiv (Pediatric Heart Surgeon) and Dr. Sanatani (Pediatric Cardiologist) as this behaviour was counter to their original diagnosis. Since seeing this behaviour on Friday morning the doctors have worked tirelessly with their local staff and WCCHN (Western Canadian Children's Heart Network) peers to determine Brody's true heart abnormality. They have since come to the conclusion that he indeed has DORV and not TGA (Transposition of the Great Arteries).

Heart surgery that was originally being booked for Monday has since been put on hold. Dr's Ghandiv and Sanatani want Brody to have an MRI on Monday so they can get a more detailed picture of his heart as the DORV procedure is much different than correcting TGA. Dr Ghandiv wants to have all of the right information on hand prior to surgery so there are no surprises.

Brody and Jamie will likely get discharged early next week after the MRI results. It is better for Brody to have his DORV surgery in 3 to 6 months when he is bigger and stronger. That means a return trip to Vancouver for us sometime this summer which wont be a problem.

 

What does our little man have??

At about 24 weeks we found out that our little man has what they refer to as Double Outlet Right Ventricle (DORV) with Ventricular Septal Defect (VSD).  This was THE most devestating days of our lives.  How did this happen?  Why us?? What does it mean?  There are not real answers as to why it happened but the good news is it can be fixed.

We will have a long journey ahead of us.  We will have to give birth in Saskatoon Royal University Hospital to be close to the Pediatric Cardiologist.  We have found out that April 18th is the day as this little guy is just like his big brother Caine and is bum down so a C-Section must be done.  After he is born he will go through tests and we will be refered to the Stollery Children's Hospital in Edmonton to have open heart surgury to fix it and hopefully he can move on to live a normal life. 

We have created this blog so you can follow our journey from April 18th on..... We want to thank everyone for their support and will keep everyone posted as we move forward.