Temporary Home

Hey guys,

So I said I would post more frequently but that didn't pan out too well did it, sorry! Anyway, a lot has changed since the last time I posted but that seems to be the norm around here! We've made this place our temporary home for the last three weeks but Monday we'll be moving out and back upstairs to the cardiac ICU as Madi is being started on a new med that requires her to be in the ICU for a little while. The medication will be a continuous IV drip so she'll get a central line (IV that is placed in a major vein for longer term use) on Monday morning where she'll be sedated for a small amount of time then go up to ICU to begin the new med. She did respond to the last new one they started but not as quickly and as much as they needed her to so we're trying this new one that is stronger and hopefully more effective!

The doctors are pretty certain at this point that she does indeed need a heart transplant :( Unfortunately her lungs aren't in good enough shape to be listed for a transplant and the new med will wip them into shape so she can officially be listed within a few weeks. That is best case scenario so we're hoping for this med to work its wonders :) So for now, we just need prayers for a good outcome with central line placement and response to the new med!

When you put all that aside it is easy to see God's work shining through her each day; she truly is a miracle of life in that her little body has power beyond belief! On paper she really doesn't look very well but when you see her each day she continues to amaze us with her strength. She is progressing in every aspect of life; smiling, talking, waving, clapping, snapping, she's full of it! The only reason we know something is wrong with her is because she gets tired more easily than most babies would. Someday she won't know what to do with all the energy she has, watch out world!

We definitely have only scratched the surface on the journey that lies ahead but all we can do is take it one day at a time, otherwise it's frankly too overwhelming, but I think that is how God intends us to live our lives, for each day, not for yesterday or tomorrow, but today! Again, much easier said than done, but I'm working on it!

It's weird that although I long for the comfort of home I feel an odd sense of community and comfort when we're at the hospital. Out in the "real world" I'm the only one who has a baby with heart problems, I'm the only one whose baby is on oxygen and a feeding tube but in here, I'm not! It's normal to see babies with oxygen and little scars down their chests, it's normal to talk about ventilators and oxygen saturations, it's normal to see parents with the weight of the world of their shoulders. So, although it seems like we're not at home, sometimes I feel more "at home" here than out there! Jeeze, that's when you know you've been in the hospital way too much! Someday I know these feelings will go away, but for now being among others who are going through similar circumstances to us is almost comforting. When Madi is ready we will go home, but for now we are home, it just happens to be at Texas Children's :)

Thank you all for lifting Madi up in prayer, God continues to hear each one of you and brings her through each obstacle we face! I will let you all know how next week goes with the new medication :). Merry Christmas!!!

Love Tabi