Soldiers

Hey All!

Just a quick update to let you all now that we are out of ICU!!!! Woohoo! We got moved to the cardiac floor Wednesday :). It's been so great because we all get tons more sleep! No more middle of the night shift changes for grandmas and daddy. And no more 14 hour days in the ICU for mommy! And best of all, less stress on our little angel so she can sleep easier!

For now our plan is to stay put for a few weeks and then Madi will have a cardiac cath to assess her lung pressures and see if they have improved after being on her new medication; depending on the results she will either be listed for transplant (this is what we're hoping) or the dr's may have to take a more invasive approach to getting her lungs in better shape. The more invasive approach may mean a "Berlin Heart" which is an artificial heart that would be used in place of her own to help her lungs heal since her little heart is what has been and continues to damage her little lungs (its a complicated indirect response to her congenital heart disease). So, it sounds scary but it's something that babies with complex heart disease deal with! At the end of the day, God is with her and all of us and He will decide what is best for her!

With that, I can't help but feel like we're at war sometimes; we're all soldiers and fighting to win this battle. God has armed us with His strength because there is no other way we would each still be standing. We fight because we know we will win! However, sometimes I think I go too far and try to fight too hard like I'm doing more than God would intend for me to? Maybe I should leave it more to Him and not fight so much? But then a great friend told me just days ago "we're in no way strong enough to change God's plan. It doesn't mater what we do, His will will be done". Thanks for that! I needed to hear that to know that as Madi's mom I can do and say all I want but God will have His way, thank goodness because I didn't want to be screwing things up! ha!

Madi is doin well, she is super thirsty because she is on so many diruetics (helps control the bad side effects of her new med) so she tries to convince anyone and everyone to get her a drink of water but all she gets is 6 ounces of water and ice chips :( so she's pretty absorbed with wanting drinks most of the day but when she's not doing that we play and watch Disney or Nickelodeon :)

Our Mom's are still here with us and we are so thankful for them! I know that I would have collapsed of exhaustion and collapsed wearing dirty underwear for that matter if it wasn't for them :) These two women are truly amazing and devoted to our family. They have sacrificed all of themselves for Madi and for us! When I said "we" are in a war it's the grandmas too! We make a good army though, that's for sure. So if there was a "Grandma Hall of Fame" these two would be in it that's for sure! But don't worry, I reminded them both that they are old and need more rest than me and Austin, hehehe!

Anyway, that's the latest! Hope you all are well and as always thank you for your continued thoughts and prayers!!

Love Tabi