Baby B is smiling!

Okay...we are home:-) Baby B was started on heart medication Clonidine which is working perfectly at the moment. It is a day to day or  should I say hour to hour process with our little man:-)  He is doing well, gaining grams every day...every little bit counts with Brody! He is weighed everyday at the same time....and every day I hold my breath hoping he gains:-) Remember all we want him to do at this point is to get bigger so gaining weight is exactly what I want...and what his Cardiolgy team wants as well! The bigger the better...that way we can get his Glenn surgery done and out of the way! Once the Glenn is done, supposedly life is a bit more normal...no more seclusion from the rest of the world....and his status should not be so critical.  According to all my research and all my "heart mamam's " out there life somewhat returns to normal:-) Looking foward to that!!! Brody is only 6 weeks old ( almost 7) but it feels like I have had him alot longer than that!!!  He is a very very scheduled baby...he eats every 3 hours around the clock....he has a bath and gets weiged every day at 10:00 am....his meds are 3 times a day...and then we start all over again! SOOOOOO I am looking foward to the somewhat normal part after the Glenn.  Hoping he won't need the NG tube ( little tube in his nose) after the second surgery.  He has managed to pull it out a few times along with Dad and I pulling it out as well on accident. Yesterday he pulled it out and I left it out all day, and he took all his feeds by mouth, which is a great thing, I put the NG in late last night so I could feed him while he slept...he needs those calories at night to add some grams to the scale in the morning!  My wonderful mother Diana has come to stay with me and all I can say is that it is so nice when she is here.!!! nice to have an extra set of hands to help...I have trained her on all his meds and his feeding pump and all the other little details that you must know about if you are going to take care of Baby B!!!!!  Since she has learned everything and I am confindent in her ability I have been able to venture out for an hour here and there...not very long...but just leaving the house helps with my sanity!  Baby B still loves his mama and when he gets upset sometimes that is all he wants...were not suppose to let him cry or be upset for too long so that is alwasy on my mind when I leave.  My mom does a fabolous job and she knows how to calm him, but still I only leave for a bit then I hurry home to baby B!  Big sister Charli has really amazed me at how much of a helper she can really be! You wouln't think a 5 year old could be such a big help but SHE IS!! she is my little runner...she runs and gets me my phone, diapers, bottles and even holds the baby and gives him is chuppa ( pacifier)  if he gets upset. I just stand back and let her do her thing if he isn't upset, she is so proud of her brother, and this mama is proud of her!!! Again thank you to all my friends and family  that have come to see us....it is refreshing to have good people in my life   that come and take my  mind off of everything that stresses me out...even if it is just for a few hours or a night!   Seth is on the road working....his business is up and running and he is a busy man! At the moment he is in Tahoe and California working, I know it is hard on him as well to be away from us, but that's life, and I know he is thankful to have the work !Please continue to pray for Brody...everyday he is here is a miracle in itself!! Love to all!!!!!

Back too soon

Ahh the familiar noises of the hospital!!! I don't even need to look at the monitor to know what number is off that is causing the dings and alarms. We're back at Phoenix Children's to try and tackle Baby B's heart rate and blood pressure. His pressures are too high along with his heart rate, medication is hopefully the answer. He was started on clondine which is a blood pressure medication that relaxes your blood vessels, to decrease the resistance in side of them.... Think of water running through a small hose and a big hose... Less pressure inside the big hose right? Same concept with baby B, if we can get his blood vessels to relax his pressure will go down in turn making his perfect heart beat slower:) Docs suspect that this could be a main factor in his poor weight gain, his heart beats as if he just finished working out all the time, hard to pack on the pounds if that's the case! Luckily or shall I say hopefully we will only have to be here a few days... But overall it is better to be here and getting Blu the care he needs than to not be! Then perhaps he will start gaining some weight! Remember that is the main Goal right now... To get him fat for surgery #2.. The Glenn!! Think positive for our boy... Pray for him to gain weight stay strong and for his heart to slow down a bit!!! Love to all and thank you for keeping our boy in Your thoughts and prayers!

Baby Blu update!

It's been almost a week that we have been home:) Baby Brody is keeping us busy... He is a wonderful handful!!! Other than he isn't gaining weight as the docs would like , he hasn't had any big issues ( fingers crossed). Heart babies usually have a difficult time gaining weight, his little heart beats so fast it burns a lot of calories, basically like he is exercising all the time! So patience is the key, something I am not good at. We have had many people come forward with helping hands, and we are so grateful. A friend of my Brother's plays in a band called Knucklebone and they put on a benefit concert to help with our Million dollar baby boy as I like to put it!!! A huge thank you to Colby Turner and the boys in the band KnucleBone!!! Another friend of the family owns a store and are having a benefit sale on Friday the 26th, thank you to Real Deals in Home Decor in Tucson. It is heart warming to see the love and support that we have been blessed with. Please keep baby Brody in your prayers, and all the other little heart warriors out there! It is surreal to think of this little heart world that I knew nothing about just a short time ago, and now what a major role it plays in all of our lives. I met another heart mama that is living in San Fransico with her family and heart baby Kian. He has HLHS ( hypo plastic left heart syndrome) as well and has been through the same ropes if not more than our boy, please keep baby Kian in your thoughts and prayers as well! Will post a picture below:) All of the little heart warriors out there have gone through so much in the small amount of time that they have been with us, and it amazes me how AmaZing these little guys are! Babies are resilient and heart babies even more SO! Love to all...

Home sweet home!

We are home, life is definitly better at home:) Our journey home started with saying goodbye to the nurses at PCH who took such wonderful care of Baby B..... The nurses all said oh don't worry we will see you soon, as we will be back for a cath and the Glenn sometime in the near future. Then there was Seth fighting with bucking the carseat base into the backseat... I just held our boy and was kinda laughing under my breath.... Super typical of going home, you always see new parents fighting with the carseat! Brody slept all the way home and didn't even wake up once we were home. I was scrambling trying to get situated, not going to lie was stressed and feeling pressure but it all worked out! Got the feeding down, the medications down now just need to sleep.... Impossible for me... I nap here and there and hold Baby B in my recliner at night, I just can't relax!! Brody apparently doesn't have that problem:) He is such a good baby, Big sis Charli is a great helper especially with a two story house, if I'm upstairs whatever I need is downstairs and vice versa so she helps a lot in that department:) being home all together is exactly what baby B needed... So far so good! Hoping and praying the days to come go smoothly! God is good, love to all!

Home tomorrow... Hopefully!!

Were on the countdown, if everything goes well overnight we should be home on the couch by tomorrow afternoon... Or evening! Everyday Brody is improving on his feeds. He take a bottle 4 times a day and each time we hope he eats an oz by mouth... Not a lot but a great step for him in the positive direction, think practice makes perfect so with each bottle he improves:) Definitely puts a smile on my face when I see him sucking on the bottle....ahhh the little things that make us smile! Takes him 15 minutes to maybe get an ounce down... We don't let him suckle longer than that because eating is like exercise for him and we don't want him burning more calories than he's taking inn. It is a fine balance and every minute and every ounce counts! Charli is excited to have her brother come home, I know she has missed us all being together, and so have we! Wanted to say thank you to all of our family a friends that are supporting us ... And a big thank you to Grandma Di for all her help with Charli, and for the wonderful home cooked meals that are waiting for us when we get home at 11 at night!! We love you and appreciate all you have done! .. Hopefully the next pics will be of our boy riding home!!!! Love to all.... God is Good!!!!!