we received the news yesterday afternoon that we are officially homeward bound today! i cannot believe it. if you would have told me last week sunday we would be preparing to head home i would have given you a blank stare similar to the one i’m having right now.
we have truly been gifted a miracle. we were supposed to be back in emergency surgery again last week and still recovering from that. but instead here we are packing up. i’m typing as quietly as possible because otto is in a mamaroo chair next to me lightly sleeping. he must have peed on his pj’s again because he is in the most adorable tiny hospital gown. joe is getting the car and coming back with real actual baby clothes that we can finally dress otto in because he is free from all IV’s and soon will be completely cord and monitor free.
a lot of people have asked me if i’m scared to go home. and for the most part no. this isn’t our first rodeo going home with a sick baby. we made it from the nicu to surgery and we will push through by the grace of God however long it takes to get that second surgery. in a way i’ve kind of gotten used to living my life knowing that any appointment could be the appointment we get news it’s time again. we’ve done it once, it was hard as heck but we will do it as many times as it takes to make otto well.
we did have a pretty candid conversation with one of the doctors yesterday and i’m not holding them to any of this but it seems as though one of the stitches in the valve did not hold and that seems to be where the leak is. yea that sucks big time that if it would have just held we wouldn’t be facing round two. however (and maybe this is just me rationalizing in my head) at least we know it’s not another weird abnormality with ottos heart. we know exactly where we are going next time. as i said to joe while he and i were digesting all of this at least we know what our demon is this time. and we have a good shot of getting it right after this.
every now and then a bit of panic sets in about having to do this again, what if something goes wrong at home etc. but the doctors would not send us home if they were not comfortable with otto’s health. the doctor said yesterday that looking at him on the screen he should not be doing a well as he is. but in cardiac kids they go by how they look rather than what the stats tell them. and honestly otto looks great. he is on 3x the amount of different meds than what we came in with but he looks good. his head still sweats like crazy but he looks comfortable, his breathing is so much better and he does not look as puffy. i have so so much hope for getting to the next phase.
each thing we go through i think this is the hardest thing in my entire life until the next big hurdle comes and then we go through something different and that is the hardest thing in my entire life. i can say with absolute certainty that to date this has been the hardest thing in my entire life. my heart has lived on the outside of my body for almost three months and i would give anything to take otto’s place. i hate that we have to do this again but i’m so grateful that in the meantime he feels better. he’s so happy and when he smiles with those big blue eyes. i melt. i’m in trouble.
thank you so much for the encouragement, prayers, stopping me in the hallway, street and grocery stores to tell me you’re praying for my son. i don’t know what we did to deserve such an awesome community of prayer warriors but i’m grateful.
God is good. all the time.
abby joe and otto