Home sweet home

I didnt want to post we were home yet because I didn't want to jinx it!! But I'm hoping we're in the clear for a little while:) So Were home:) life so far for Brody has proved to be Much better!! He is a happy growing boy! He is such a happy little man ( most of the time) we are still having issues with him taking a bottle... When they do open heart surgery everything you can imagine is very small and in the process sometimes the vocal cords can be nicked.... The vocal cords are right at the base of the top of his scar where they started his surgery. This may be the culprit to Him refusing the bottle, but again really not a big deal! Brody is doing so much better this time around...we have a cardio appt next week for another go round with everything.. Echo, EKG, bloodwork etc.... Praying everything looks good and no new surprises! We did go into radiology at PCH to check his lungs,an X-ray to following up on the chylethorax. Lungs look beautiful.. Going to continue to low fat formula to ensure his lymph nodes are healed! Hopefully he will be able to go back onto a regular diet soon! We are still being very cautious about going out with him... A small cold could mean a long hospital stay... So better safe! We haven't had many visitors either for the same reason....flu season is almost here:( everyone get a flu shot! Charli is getting hers this weekend... But that's my secret... She won't know about it until we get there... Less drama that way! Brody did go in for a well baby visit and was due for his 4 month well baby vaccines... Took all 4 like a champ... Didn't even cry... Heart babies have a outstanding tolerance for pain apparently! Life is good... We live day to day and the past few days have been great!! Hoping for more smiley days for our boy! Settling into home is so easy when you've been at the hospital for sooo long!! Ohh yes and one more note.... Brody has two of everything, we have a two story house so it's just easier, two swings... Two baby chairs... One baby popasaun chair... A nap nanny... And a baby chair that vibrates.... And where does he want to sleep??? In our bed:) I say whatever he wants he can have!!! One more thing.... The congenital heart walk of Phoenix is Nov 4th!! Save the date and look for a link to join Brody's team and help raise money to help fight congenital heart defects! Will be a good time, love to all!!

Go Brody Go

What a road it has been for our little man!! I know people always say how amazing their children are.... So I'm going to brag!!! This little guy is AMazing!!!! He has jumped thru so many hurdles... Been knocked down but he is back up and RUNNING! He had to go to the cath lab ... Again... This time they did find some narrowing in his pulmonary arteries. Basically think of an upside down T.... At the intersection is where they attached. The "Glenn" to his pulmonary arteries... There was some scar tissue and narrowing.. Explains why is was so fussy... The blood flow in his new surgery is passive blood flow.. So the blood runs to his pulmonary arteries just through passive flow...they balloned the intersection, thus opening the blood flow to his lungs:) along with the drainage of fluid from around his pleural space ( around his lungs) he is a much happier boy! We are much happier parents! Hoping that our little man has some easier days in the near future! We have the tube feed back in his nose.. These surgeries set babies back so quick... A week ago he was taking all bottle feeds and now were back on the stinky NG... But hopefully not for long, and honestly at this point it really is no big deal! Every time he went for a procedure... MrI.... Cath lab.... He had to be intubated and put on sedation meds.... So needless to say it takes it's toll on such a small little guy.... BUT he is our warrior and truly is an amazing gift from GOd!! He has shown us how lucky we are to have him in our lives. We always laugh now when we get a paper cut or a knee hurts or anything in regards to it hurts....we just catch ourselves saying really???? If Brody could talk he would say gimme a break a check out this scar!!!! Our little warrior earned the nickname Rambo slayer!! He even wakes up with scratches on his face to fit the part. Go Brody Go!!!! You are an amazing Boy and we love love love you! Love to all!!!!!!

No McDonald's

Where to begin? Brody has been having a rough time to say the least? Not sure if our expectations were too high but we were thinking a quicker recovery after Glenn... No such luck. We did attempt to go home... We were discharged last Saturday and super excited to go home, that was all short lived, we were read admitted to the CVICU the following morning! Brody is just a very unhappy baby at the moment, well has been... We actually had a smile this morning so that is BIG!!! Every test... Procedure... Lab work...etc has been done. They were/are having a very difficult time pinpointing the cause of his fussiness! Sooo he earned a chest tube, X-ray showed fluid around the space around his lungs. Bad on a way.. But also good because he is acting better today. I would imagine all the pressure from the Fluid didn't feel good. Now that the Fluid is draining he seems better. He had an MRI done as well and it showed a small bleed, but docs are not sure if it is new or old. When he has his open heart surgeries he had to go on the lung/heart bypass and a brain bleed could happen, they are not too concerned with it but we are waiting to talk to neurology just to be safe. They say the body will reabsorb the blood and there shouldn't be any effects from it... Let's pray their isn't.Tomorrow he will go in for another cath:( to take precise pics of his heart... They are concerned with some narrowing of one of his pulmonary arteries and echos and ultrasounds can only tell so much. The cath is unfortunately much more invasive but the pics will give a much more thorough understanding of his anatomy. They may have to stent or balloon his artery if it is too narrowed. During his Glenn they patched and reattached so many little things that they are worried about scar tissue causing some narrowing. What else??? Oh yes since our bodies are covered with lymph nodes it is no surprise that some were damaged, basically it will take 6 weeks or so to heal ( his lymphs) but in the meantime they are leaking a white milky substance called chylothorax which is what the chest tube is draining, so in the meantime he has to be on a very low fat diet... The low fat helps decrease the chylothorax ... So no McDonald's:( love to all