Friday, February 1, 2013
pregnancy + Max, as of late.
can i just be real for a sec?
this pregnancy has been so hard. it has been a whirlwind!
from being so stoked at being pregnant, to being the sickest i've ever been for several weeks/months, to being the happiest i've been - learning we were welcoming a boy into the world, to being the saddest i've ever been realizing things weren't the way we always dreamed they would be, to being the most peaceful and calm i've ever been realizing what a special experience this whole thing is, to going back to feeling sick and uncomfortable... it just feels like the world is spinning so fast all around me, and i'm sitting in the middle of it, trying not to get dizzy and barf everywhere.
and that's me being real about it all for a sec.
i think one of the hardest parts of this whole thing is figuring out how to be real, but not intimidating people with just how real and heavy our life is right now. it's like, i can't be fake and just pretend like everything is rainbows and butterflies, because it's not. but then again, i can't lie and say that i just sit here and cry all the time, because that's not true either. it's been pretty amazing how much happiness and fun our little family has been able to have together in spite of the serious future that is knocking on our door. and yet, we have our moments. moments when it's hard to relive this reality that everything isn't normal as i hear our story come out of my mouth to our family and friends over and over again.
and then, we wipe away our mopey faces, pick ourselves back up again, and realize it's another day. and we only have to do things one day at a time. and we have a hundred people around every corner cheering us on to do just that. it's pretty awesome.
the last few weeks have been filled with appointments and exams, ultrasounds and echoes, doctors and nurses. i'm getting used to it.
there have been mixed reviews and updates. at the heart echo, we learned that Max's heart looked much better than it initially did. the cardiologist did detect an opening between the lower chambers - but apparently babies are born with holes in their hearts all the time. we left that appointment feeling happy -- like a hole in the heart was a small victory of sorts (since it was such a better scenario than if one of the ventricles wasn't formed properly, like we had originally been told/thought). it's funny how your perspective changes in situations like this; like receiving news of a hole in the heart is a good thing. i think i would have spazzed out if someone told me Ellie had a hole in her heart when she was in utero! but at this point, this was good news, since sometimes holes heal on their own, and if they don't, surgery down the line has very high success rates.....and for me, i was relieved especially since it meant that Max wouldn't need to come by C-Section at such an early date (like he would have if there had been ventricle problems).
but in between then i have been having tons and tons of contractions. contractions that are painful. and take my breath away. contractions that have felt, in multiple instances, like labor. i have been admitted to the hospital for these contractions. it's not the funnest Friday-night date that M and i have had, i'll tell you what. they did detect several contractions -- yet they weren't progressing labor, which was good news. they have since prescribed for me a med that helps with the contractions -- but i'm being seen and monitored pretty regularly since then.
our latest ultrasound, this last week, was the most troubling update as of late. there was more brain abnormality than before -- i can't remember what part looked odd, but something else did (doctors throw out all these big anatomy words like i should know what all the individual parts of the brain and organs and extremities are. and maybe i should. but i don't. so lots goes over my head). his femurs were measuring small, his ears were lowly set on his head, and of course we saw his little hands and arms -- which always make my heart ache a little. and we saw his heart again -- and that opening, that looked somewhat small before, looked rather large. that relief we had felt a few weeks earlier went away-- because a large hole most likely won't close on its own. but the most alarming part of the ultrasound was that his abdomen measured very small, they couldn't detect his stomach, and my fluid levels were very high. the Perinatologist (the doctor we see for these ultrasounds), seemed very concerned about these things, suggesting that his brain might not be sending the proper signals for him to swallow, causing me to balloon up a bit -- and which he said could be the cause for a lot of the immense rib pain i have been experiencing the last few weeks. he believes that all of this means that Max is at a high risk of coming any time -- and so now i have twice-a-week non-stress tests, weekly steroid injections for his lungs, and weekly ultrasounds to continue to monitor the fluid levels and growth. after telling us all of this, i asked the dr. what all of this meant for his labor and delivery -- and he simply said, "this little guy just has so much going on with him- from here on out, it is a literal fight for life."
those words are still hanging in the air for me.
it was the first time that i felt like i might need to be preparing for something else, too.
you see, we have been preparing for a life with many challenges with Max -- we haven't known what quality of life that will be for him, but we have always thought it was life.
but the look on the doctor's face is etched in my mind -- that look that while it's still important to prepare for a life with challenges, we might also need to be preparing for the challenge of losing that little life, too.
today i just wish we knew which one we should be preparing for. because preparing for both just feels hard. you know? we love this Max so, so much.
the good thing is, i'm not in charge. God is. and i know Him. He is good. He is merciful. He knows what i need more than i know what i need. He knows what Max needs. He knows why this has to be this way. and most importantly, He knows all of His children, inside and out. that means He knows you. He knows my mom. He knows my dad. He knows my friends and my siblings. He knows my girls. He knows M. He knows me. He knows Max. and so that's what i cling to. one day at a time.
afterword: thank you for all of your love and prayers and kindness that so many of you have poured over me and my little family. we truly feel that we are being carried, comforted and supported in a miraculous way -- words can't describe how much that means to me. i'm blessed beyond measure, and that's the truth.
p.s. you can read more about Max here. i hope to give more regular updates on him in the future.