Happy 6 month Birthday!!

Happy happy 6 month birthday to the bravest little boy we know! Brody has shown us how amazing and strong he is!! We couldn't ask for a funner happier baby boy:) Despite all he has been through all we see are smiles! ( most of the time) Brody's sweet little ticker is doing amazing right now! He doesn't even see our wonderful cardiologist until January! When Dr. Lindblade said no need to see him for a few months, I panicked!! One day at a time, and every day we are so blessed to have this amazing little man in our lives! We wake up and are so happy that he was given to us! He has quite the personality at just 6 months! He is fiesty fun and full of life! He has decided that he is NOT having the ng on his face. Now that he is older he is more aware of the stickers on his face. After his face had a terrible rash from the ng stickers he was bound and determined to not have anything on his face! He pulled his tube out 5x in one day!! I guess he was telling us get this off my face, so we took it out and now he is taking the bottle... Kind of... We have a fast flow nipple on his bottle so he kind of guzzles.. But it works!! We are feeding him around the clock baby food and formula! Calories are very important to B so we are constantly feeding him! We weigh him daily and so far so good!!! Hopefully he will just keep improving and we can avoid a G tube surgery altogether!! We are still having to do the lovenox shots twice a day to help dissolve the clot in his leg.. But other than that nothing new to report! Our first Team Brody heart walk was a success!! A big thank you to all our friends and family for the generous donations and for comming out and walking with us! I think it's wonderful we can all get together, life is busy and hectic but comming together for Brody meant the world to us!!! Hoping to do it again next year:) Big sister Charli is turning out to be quite the tomboy! Broken arm on the trampoline required surgery to put pins in, we just had the pins removed and were on the final stretch of the new blur cast! If we're not in the hospital with Brody were in there with Charli and if I'm
Not in the hospital with either of our two babies I'm at the hospital because I'm back to work! Life is good!!!! Love to all and happy 1/2 birthday to our amazing little guy!!!

Team Brody

Ok!!! Well we almost made it to one month being home.... Our longest stay at home yet! But our little man had to be readmitted for a blood clot in his leg. I had been watching it for a while and it was just not improving... His right leg was twice the size of his left and was a grayish color. We kept calling the doc and they just kept telling us to watch it... Well we were and it didn't get any better:( I even took him to the pediatrician and she said she wasn't worried about it! I was!! And good thing... Complete venous thrombosis ( fancy word for blood clot in him femoral vein) his body formed collaterals ( small tiny veins that grew because of the clot) these collaterals are basically what saved his leg! So very important to get the clot dissolved... So now our amazing little guy has to get two shots twice a day for 12 weeks:( Makes my heart hurt every time I do it.. He cries for a second then he's over it... But still No fun for a mamma to do to her sweet boy. They are called lovenox injections and it dissolves exsiting clots and prevents others from forming. We are off the low fat formula that was helping his lymphatic system heal, and all I can say is thank goodness because we are all sick of cleaning up throw up!! That formula was nasty and getting him to even attempt the bottle with that was impossible! I'm sure you have all seen that Brody still has his feeding tube inn... We went to see and ENT specialist because B was not taking the bottle, turns out one of his vocal cords were damaged/paralyzed making it impossible for him to swallow... We're hoping he recuperates and the other vocal cord compensates for the paralyzed one. Vocal cords can be damaged from intubations ( where they put the breathing tube down and put him on the ventilator) he was intubated 3x after the Glenn surgery so that is when it most likely happened. We are fighting with our little guy every step of the way! He actually took half an ounce this evening and I almost cried! If he doesn't learn to take the bottle soon he will have to get another surgery for a G tube... The feeding tube can't stay in long term because it ends up eroding his nose and throat. Taking a bottle is a huge deal.... One less surgery for our sweet boy! We did go out to eat ... Another big deal, Small things mean huge accomplishments for us! Life for our family will forever be changed by this amazing little boy! We are so lucky to have him and each day we cherish every moment and every smile! Don't forget to join Team Brody and help fight Congenital heart disease Nov 4th!!! I posted the link to join the team on Facebook! One week left to make your order for your team Brody shirts!! Just send me a message on Facebook! Love to all!!!

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!!