a year ago right now, i lived in what felt like to me, some level of hell. day in and day out was spent in the corner of a dark picu room. i would hear, 'heart surgery' and then the next day all hopes of that happening would be shot because someone changed a medicine and shilo went down hill.i felt, deeply, that God had given us this little girl, and then quickly ran fleeing the opposite direction. it felt like some sort of ugly and cruel trick. why, why, why, would He call us to adopt a child, and then have us end up living like this. there was no good explanation. and so i sat. and i became bitter.
when we got home, i would love to say it was better. but i came home to a child who was constantly hooked to a feeding pump, an oxygen tube, and was on so much medicine we had to get up multiple times every night to give it to her. she was also being weaned off of narcotics, and had days where she cried a high pitched horrid cry. all day. the little baby who had smiled for the first time just days before being hospitalized just laid there. she didn't smile. she seemed completely uncaring that we were even there.
home was more work than ever before. i was a hot mess. i yelled at abigail a lot. i felt more alone than i did in that hospital. jason and i just made i through the days, and at the end of the night, we crashed so we could do it again the next day.
and the nights. they were some new level of hell. i didn't sleep well. i would wake up confused, not knowing where i was, how old i was, and then it would all hit me, and i felt this ugly guilt from what had happened over the last months of our lives. i felt like i had ruined us. and satan was quick to confirm that thought.
slowly, slowly, slowly, things improved. she came off of meds a little at a time. she didn't need oxygen all the time. she started smiling again. she didn't have to be hooked to her feed pump so much. we didn't have to get up at night time. i yelled less. i got more sleep. life began to feel better.
i won't pretend that i now have happy thoughts and feelings about that time in our lives. it was hard. i hated it. i still am working through moments of bitter, and confusion about why that needed to be. but the last few months have shown me something i would have adamantly denied before hand. we experienced a miracle. the fact that shilo is here, with us now, smiling, loving, and full of life, is a miracle.
not so long ago i got a phone call from my mom. my uncle had, had a heart attack. he was in the hospital awaiting triple bypass surgery. while his situation was certainly different than shilo's, i couldn't help but notice the similarities as the days went on. he aspirated, ended up with an infection, was intubated, and passed away. shilo had an infection, aspirated while being intubated, worsening the infection, went into heart failure, and she's here.
as i sat at his funeral, i felt, for the first time, like maybe, just maybe, God had heard my prayers all those days in the hospital. He definately didn't give what i asked for at the time-a quick trip, back home, a baby who could still eat-but she's here. and our lives would be less without her.
i recently met another mom of a child with Ds while at an outpatient appointment. her daughter had an av canal-the heart surgery shilo had. after surgery, she has had to be re-intubated multiple times. they couldn't figure out what was going on. finally. finally, they found another hole in her heart, that needed patched. she had that surgery monday, and thus far is doing okay. she still has a road ahead of her.
shilo, when she went in for her av canal, had an extra asd that nobody knew about. it hadn't been visible on her echos. it hadn't even been noticed during her first heart surgery. but the surgeon noticed it when fixing her av canal, and repaired it as well. i didn't know, until recently, that sometimes, those extra holes aren't caught, even during surgery. sometimes, kids continue to struggle, and nobody can figure out why. sometimes, it's not caught in time. and i'm blown away that my little, with her fixed heart, is currently playing with her sister in their room.
it may take me the rest of my life to get all the small bites of what God was doing during those long months in the hospital. but, what i can clearly say now, one year later, is that we experienced a miracle. for that, we are thankful.