A fine balance!

Our boy is growing!!  Slowly but surely. His feeding is the main issue at this point..trying to figure out what works for him and what doesn't work...well Brody definitely lets us know!  Right now he is getting  bolus feeds every 3 hours, and at night he gets continuous feeds. So during the day we hook him up to a feeding pump that gives him his food through his NG tube every three hours ( little tube that goes in his nose down to his belly) and at night he is just hooked up all night. The main goal at this point is to get him to grow so he can have his next surgery. Heart babies have issues with feeding so finding the balance is normal. After he was born he didn't get to suckle like most newborns do so basically he has to re-learn how to do this..before his feeds during the day we let him nipple a bottle  and he takes about an ounce. Not alot but a huge success for our boy.  Suck swallow breathe...suck swallow breathe, this is what he is relearning to do:-) So far he is doing well..every day is better.  The other issue  the Docs are watching is his Sano that was put in his heart to shunt the oxygenated blood to his body, the Sano conduit (think little straw) is narrowing....not exactly sure why but just keeping a close eye on it. Usually the next surgery (The Glenn) is done between 4-6 months of age, Docs are saying that he will have an early Glenn, they will remove the Sano that was put in during the first surgery ( Norwood) and connect his superior vena cava to his pulmonary artery. After the second surgery hopefully he will be more stable and we can have somewhat of a normal life. HAHAH I laugh when the nurses an docs say that...I think NORMAL..our normal is just going to be different and it will be our normal but I know it will never be NORMAL!! Being a parent to heart baby Changes your whole life....everything you knew before is no longer....at least that is the case so far, BUT we wouldn't change is for the world. Bordy is such a sweet baby boy and we thank our lucky stars we have him:-) So the plan so far is home Monday...we will most likely be home 3 or 4 weeks and come back to have another cath done ( where they go in through is femoral artery to take pictures of his perfect heart) this will give them an idea of when the 2nd surgery will be, Docs are saying most likely around 2 months of age. SO home for a bit then back to our other home Phoenix Children's Hospital. Please keep our baby Brody  in your prayers...just thinking about the next surgery makes me queasy but I know this is what he needs. We are excited to bring Brody home and excited for him to see the SUN!!! I think we are prepared??? Guess we will find out! LOVe to all