WOW!!!!

OKAY!!! It has been a few days since I have updated everyone!! But no news is good news right now:-) Uneventful=EVENTUFULL for BRODY!!!  Our Boy is doing fantastic...as Dr. Nigro would say ! He is off his fentanyl, his precedex, and they are turning off the milirione today so lets pray he does well. He has an ng tube and is receiving milk through it, he is up to 15ml an hour;) He will most likely go home with his ng tube and maybe some oxygen as well... But thats it! They came inn today and actually started talking about going home! He will be on what they call an interstage program... basically its a program where he is closly monitored everday until the next surgery (the Glenn). He will be weighed everyday, have a pulse ox on every day and all his numbers will be relayed to his cardiologist team so they can monitor him like a Hawk!!!  We will have to stay with him and do all his care for 48 hours before they discharge him. Were surprised that they are talking about home already!! Now were thinking of everything we have to do before he comes home!!! It's very exciting and scary at the same time! All the care that we are receiving here at Phoenix Children's is amazing ! Again please anytime you see PCH asking for donations give whatever you can... Even if it's just a dollar... Every dollar counts:) Our Baby boy is here and alive because of them!!! Please keep all the little heart warriors out there in your prayers... These babies go through much more than any of us will ever know or experience in our lives... They truly are amazing! Our Brody amazes us everyday and we are so excited to bring him home to big sister Charli!!!

Brave Brody

Ok...well it's been an intersting two days to say the least...or should I say stressful is more like it. Brody is off the ventilator and breathing on his own...with the help of some oxygen that is on his little nose:-) That was a big one to get off of...but he did it! He wasn't able to cry after the vent came out...and it is so sad to see him make his little face like he is going to cry but then no sound comes out:-( Anyways small potatoes I guess?? Then I thought we were doing well...and he started to be somewhat restless...then he started vomiting....the nurse said he was going thru withdrawls from all the pain medications that he was on then they stopped. AWFUL to see your baby in that state:-( SO they started him back on some of the medications and are going to weene him off slowly.  Always something I guess? Other than that he is doing well, the withdrawls are common with heart babies and a large majority of them go thru it, so this is just another hurdle our little man needs to  jump. His incision on his chest looks much less invasive than I thought...just a perfect line going down the middle of his chest...they said the bones will take up to 8 weeks to heal so anytime we pick him up we have to scoop him up. He will not be able to be picked up under his arms like you would a normal baby...so SCOOP it is!!!!!!  Brody recived a gift in the mail from his Auntie Melissa....sweet little hospital gowns...all the nurses love them because they have velcro shoulder straps and velcro down the front to accomodate all the tubes and wires.....hard to find newborn clothes with snaps...everything goes over their head and he can't wear thing that go over his head becuase it is to hard to untangle all the wires. So I am always on the look out for outfits that snap:-)  We did finally get to hold our boy  and it was wonderful! I can spend all day with him in my arms and it seems like a second...not like 10 hours! Our Charli is up North with Auntie Corrie and some family having a blast....well at least that is what Corrie tells me. I did talk to Charli on the phone and she started crying...she misses us and we miss her....looking foward to her comming back on Tuesday, she is almost out of school so we have some fun activities planned for her next week:-) My mom said she would come stay with Brody while we took Charli out for some fun in the sun! I think we both need some sun...we are starting to look pale:-)  Here are a few pics of our boy on his road to recover!!!! GO BRODY!!!!!!!! WE LOVE YOU

Small steps:)

Baby boy has both chest tubes out... The tubes drain excess fluid off his heart and lungs, Dr. Nigro his surgeon stemmed happy with his progress so went ahead and discontinued them:) next step is weening off the ventilator do he can breath on his own, this will start tonight and hopefully he will be extubated tomorrow! There's always a chance that the chest tubes and the ventilator will have to be put back inn, it really all depends on Brody! Our Surgeon did say he was a character ... And that he's never seen a baby suck so hard on his pacifier right after surgery!!! So that is good! We have had a nothing but wonderful nurses taking care if our Brody boy, we are so very thankful for everything they do for him! God is good!!! We love everything and everyone that has contributed to our boys care! Hopefully tomorrow will bring more good news! Check out the flowers Charli picked for her brother!We have the sweetest girl;)

48 hours Post op

Brody is doing good!! Or should I say Better:-) He is being weened off his ventilator and his nitric oxide:-) He is off his dopamine, which helps with his blood pressure, meaning he is sustaining his pressure by himself:-) He is also being decreased off some of his other medications as well:-) He will always be on heart medications but weaning him off the ones he won't be on is definitly a good thing:-) His blood gases have been good so this means he is more stable and Dr. Nigro is closing up his chest today....a GREAT THING!!! We will be 48 hours post op at 3pm today...this is a good thing.Brody is showing imporvement and the Docs say he is moving in a positive direction!!! SO wonderful to hear! Big sister came today and she worked with Child life...they made a doll together with the same tubes and bandages that Brody has....I asked her if she was ready to see him and she said YUP!!! I showed her a picture on my phone first...we went into the room and she was very quiet but was very interested in her little brother, she did fabolous and even gave him a kiss. We are so lucky to have our awesome family:-) Hopefully soon we can all be together cuddled up on the couch at home..instead of at the hospital! Phoenix Childrens hospital has definitly exceeded our expecations! Please whenever you see Phoenix Childrens asking for donations...don't be shy and give what you can..this place is amazing and we owe them more than anyone can ever imagine!!! Thank you again to everyone that has been keeping our Brody boy in their prayers...it is working...and we are more than excited to see our little boy showing improvement...one second at a time!! GOD IS GOOD!!!!!!!

24 hours post op

Brody had a rough 24 hours, docs have been tweaking all his setting on his meds, he's on epi, dopamine , mildirione, he's ventilated and on nitric oxide... They say that this is somewhat of a normal with these patients, making and adjusting changes to get the right balAnce. All I know is that every alarm that buzzes every time the docs come inn and go out of his room makes me hold my breath:( he is stable at the moment. Every second is a step in the right direction do to speak. We are right by our little mans side talking and telling him what an amazing warrior he has already become! Hoping the next 24 hours brings up good news! Watching and looking at our little boy is not easy... Takes everything in our being to just not break down, that would do him nor us any good! We are here with our little guy every step of the way!!!

We saw our Brody

Wellll.... Our boy is out of surgery... We did get to see him but I should have opted to just stay out if the room... That was the worst thing I think I've ever seen... So hard to see your sweet boy like that. The next 48 hours are critical.... His chest is open and he has a chest tube inn and a media stinal tune in to drain the excess blood off of his perfect broken heart! Please pray for our boy....

From Auntie Corrie

Unknown to Elissa and Seth I have opened up a bank account to help them with the financial stress they are starting to incur while caring for Brody's broken heart. The account is at Chase Bank. The account number is 3033085720. If you are able, please try and help them out. They are having to drive 60 miles roundtrip to see Brody and still give Charli the love that she needs. They have quite a long road ahead of them. Please continue to pray for Elissa, Seth, Charli, and Brody and your financial support would be awesome:-). Thanks to everyone who has already helped by giving their love and prayers.

BIG Day...NORWOOD DAY!

Okay!! Everything is going good We kissed our little Brody's chest this morning before the surgeons took him..He was so sweet...he was holding our hands like he knew it was the BIG DAY!!!! Dr. Nigor's ( Brody's surgeon) Nurse has been giving us hourly updates. Our boy is doing good she said....NO suprises when they opened up his perfect little chest:-) He is on ECMO--machine that pumps his blood and basically supports his life while they work on his tiny little heart. They are sewing in his Sano shunt at the moment. They said his heart is about the size of a walnut. Amazing what modern medicine can do for us! Our family is amazing and here supporting us every step of the way!  I will keep everyone updated as our updates come...thank you so much for all the prayers we have going for Brody...I know that GOD is listening..he has no choice because we have so many people talking to him! GOD IS GREAT!

Day before the Norwood!

The last few days have been quiet...we have been limiting visitors and keeping Brody as quiet as possible, his little heart is working overtime and stimulation just makes it worse. He has been happy with all the cuddle time he is getting from us:-) I am of course loving the fact that we get to hold him. The surgeons are having a conference today going over the plan of attack for tomorrow. Brody boy will be in surgery bright and early..he is scheduled for 7am. Seth and I are going to stay the night with him tonight and hopefully get more love inn. After tomorrow were not sure when we will get to hold our handsome little man again. He will be so full of tubes and wires that it just won't be possible for a while. When he comes back from surgery he will have chest tubes inn and be on a ventilator ( machine that will breath for him) I think the worst part ( all of this is the worst part) but the worst part will be that they will actually leave his chest open after surgery to held with the swelling. The nurse and Docs say it will be open about 48 hours to make sure his shunt is functioning ok and to help the swelling go down. Once the swelling goes down they will close his chest and go from there......not sure If I ( mama) will be able to even see him after surgery...maybe I will just send Seth inn to see him...it is already hard to see him now with all his lines and he hasn't even had the surgery yet! BUT he does need it and I am ready for him to have it. His breathing is fast and its hard to see your baby working so hard to just breath. His little lips are blue but other than that he looks perfect! The nurse put a onsie on him last night...he looked so cute! Funny how a simple little shirt makes me so happy! He looks like a perfect baby that should be at home keeping us up all night not in the hospital:-( Here are a few pics of his perfect non scarred chest...after tomorrow he will definitly have some marks on his tiny little body that will last him forever. He is perfect now and will be perfect tomorrrow after surgery too!