Day 5 post op! My little insomniac

Ok! B's lungs are doing great almost completely off the oxygen:) he his being weened off all the cardiac drugs and sedation meds so now our little man is awake 24/7 almost! Side effects of withdrawing is insomnia:( we are trying to feed but he has a ng tube inn and he hates it! Imagine a hose in the back of your throat... You wouldn't want to eat either:( so for now were doing his ng feeds, but will be back to bottle soon I hope:) I can hold him now too but it is so hard with all the wires:( he isn't too comfy when I do attempt so I just make his kings chair as comfortable as I can for him! Loving my little man more every second! He does enjoy some Adele tunes and nora jones..I put the iPod next to him so he can have some relaxing tunes!. He has this made:) Thank you for the continued prayers! Love to all:)

Day 3 post op

Brody is such a fighter!!!!! His right upper lung collapsed on day 1 so he was out on CPAP... Basically just forced air into lungs to help keep it open!! It worked.... 2 days of baby B looking like darth vader payed off:) his right lung is now open and looks excellent on the X-ray:) his Blood pressure and o2 levels are perfect:) He is still on high flow nasal cannula but that's nothing :) we are so happy his recovery is looking better, those days felt literally like 3 years... We hold our breath for every cry, every alarm that dings, every cough he makes. Now he is resting comfortably like a king in his throne:) We are more than happy with his progress today!! Seth said I needed his lung to recover more than he did... Lol!! He just has to put up with all my emotions:) Yesterday the nurse was trying to put an NG tube down his nose into his belly to start feeds, she wasn't getting it and mama mode just kicked inn, before she could say anything I took the NG from her and did it myself:) I know what and how my baby works so... Well I just did it!! Later I realized I may have overstepped my boundaries but did not realize it at the time, I just got it done!! Crazzy what moms do for their babies:) im in survival mode and just do before I think! Whatever right I got it done and my baby was happy, enough said! Today we are hoping to just let him rest ! He is starting to look better every second! The swelling is going down his chest tube is out ( tube that drains fluid from around his heart) his foley is out ( drains his bladder) and his IJ is out ( line in his jugular vein in his neck) 3 huge steps for baby B!!! He now has acentral line in his left neck that measures the pressure in his atrium of his heart and an IV in his left wrist. The bandage is off of his chest and looks amazing... Little red line is all... He is stitched from the inside so the outside doesn't look to terrible!! Tomorrow I should be able to start giving him the bottle! We are more than happy with this little Guy!! He is the toughest guy we know!!! God is great:) love to ALL!!!!!!! Soo soo soo happy!!!!

Day 1 Post op Glenn

UHHHHH.....that is the only way to put it.  Brody is recovering. We ended up being admitted last week, we went home for a day after his cath then ended up back in here because Brody was having a hard time.one day feels like a year in here. He is extubated...meaning off the ventilator (machine that breathes for you) and breathing on his own.  His throat is swollen from having been inutbated so when he breaths he breaths loud.....they are giving steroids to decrease the swelling in his throat so he will be able to move air easier.  He has chest tubes draining the fluid from around his heart.  He has lines in both sides of his neck...oxygen and a mask on his face  IV's in his wrist...pacing wires on both sides of his chest and he still looks beautiful!  Small steps now for bigger steps later. He is a feisty little guy....nurses are weening him off his sedation medication to help him wake up and want to breath, it is a fine balance between keeping him comfortable but not too comfortable because then he is so lazy he doesn't breath to well on his own. But when he does wake up he is MAD, kicking and screaming, guess that is why they call them heart warriors! His new circulation did make him much pinker...but it also make him swollen...His body has to adjust to the new circulation. Now that his superior vena cava is connected to his pulmonary artery he is getting a large amount of circulation to his upper body and upper extremities.  Time time time....once he adjusts the swelling will go down.  Amazing what he has gone through...he is such a trooper!! He amazes us every second! Please continue to say prayers for our little heart warrior!  God is good and has this amazing little guy in his hands:-)

It's that time!!!

We are home from Phoenix. Children's! Brody came home with oxygen onn fr his cath, he is outgrowing his shunt, the shunt is how blood goes to his lungs to be oxygenated. He is now 11 lbs vs 7.5 when it was put inn, so more blood and body to oxygenate! His oxygen dropping is a classic sign that he is ready for the next surgery! His cardiac team apparently isn't wasting anytime! We meet with the surgeon tomorrow , he will be prepped with bloodworkand meds Friday then his second open heart will be Monday at 10:30!! I can't believe it's already that time! We are nervous and anxious to get it over with!! Hoping he will be feeling much better after this surgery!! More blood and oxygen should make him a much happier camper!!! Remember this is where they take out the shunt that goes from his ventricle to his pulmonary artery, they will patch that up so to speak and connect his superior vena cava to his pulmonary artery! This means he will be much much more oxygenated! Hopefully he will be pink instead of blu!!! Baby blu hopefully will be pink by Monday!!! Thank you to my wonderful family for their unconditional support! This has been the most difficult thing We have ever had to experience, having the support we do makes all the difference! Love to all, God is great!!!

That time already!!!

Wow!! Seems like yesterday we found out about our little mans heart and now we are getting ready for open heart surgery #2. Tomorrow we go to Arizona Pediatric Cardiology for our last checkup before his Glenn!! Echo, EKG and hopefully good news! The 14th is Brody's pre Glenn cath, they will go inn to take more pics of his heart thru his femoral artery. The date for his surgery will be set after his cath depending on the results. He is almost 11 lbs and he is doing great! He finally learned how to take a bottle! After countless tries on multiple bottles we found one he likes ( kinda) he is a strong willed little man and he is Definitly particular about meal time, but he does not have his NG tube in and that makes Seth and I very happy! That thing was a pain!! Brody has a sweet personality, when he's not grumpy that is! There are a few exciting things happening in our household! We are anxious for Brody's next surgery and all that comes with it, but tomorrow our Charli will be starting kindergarten!! Last day of summer for her is today!!! Now it's time for school and time for a little bit more quiet around the house! We have had such wonderful support from family and friends during all of our little warriors up's and down's, and now another close friend of mine is putting together a benefit for our little man! I will attach the flier she has made. We just want to say thank you to Erika Randall for her support and taking time to be so thoughtful:) Also on August 14th the day of Brody's pre Glenn cath his buddy Kian who has been in the hospital since birth in San Francisco, will be having his Glenn surgery the same day! Kian's mom is asking everyone to wear red to show their support! Please feel free to wear red and post some pics!! Thank you everyone for your love and prayers!! Our little heart warriors need all the love they can get!!!