i'm not even entirely sure where i should begin with this post, but it's been on my heart lately so i figure a nice stream of consciousness is always good....right? no one is more shocked than i that it's been almost a year to the day since bella's kasai surgery. when i sit and allow myself to reflect and think about it, i can feel everything like was just five minutes ago. the pain, the sorrow, the anxiety and fear...all of the unknown things being thrown at me at once. i can remember feeling completely and utterly alone. despite how many people were calling, texting, fb-ing, or visiting me; friends, family, strangers....i was alone. just me and my baby girl having to deal with this horrible disease.
and oh the guilt. i STILL feel guilty. i don't think that'll ever go away.... (and cue the tears.....i'm crying now)
i will never forget the day that i realized bella was coming. oh how i panicked. and i can remember the anxiety i felt when i realized she'd be a girl. oh lord. and i'll never forget how my breath just would NOT come out the entire
ten hours (that's an exaggeration. it was probably less than 30 seconds) it took for her to cry for the first time outside the womb. all i can remember is saying under my breath, "breathe, dammit. you better breathe bella. please." if you didn't know, my dear bellz was born 6 weeks early after a nice "long" stint under house arrest on bed rest, due to a fall that sent me into preterm labor to read more of her story, click the links or check out the Bb tab up top.
then there was the NICU stay and those damn doctors telling me i couldn't hold my baby, nursing her every three hours on a strict schedule for two weeks, getting frustrated because no one was giving me answers and then discovering that she would have to have surgery because they just couldn't figure out what was wrong with her.
what she has is biliary atresia. it's a rare congenital liver disease affecting 1/10,000-15,000 of newborns each year. (she, she's one of a kind...kinda.) basically it goes like this: in your liver, there are ducts or tunnels of sorts that funnel bile from the liver to the gallbladder. bile is a mixture of stuff that helps digest stuff in your small intestine. it's toxic if it doesn't funnel out correctly. and that's what was happening to bella. the bile ducts in her liver weren't formed correctly (and no one knows why). when a baby is in utero, there's no way to know it's a problem until after the baby is born. once the body starts having to function on its own, it starts to present itself.
the thing with biliary atresia is for the best results, you have to catch it early. a surgery called a kasai procedure has the best results when it can be done before a baby is 8 weeks old. bella had her surgery at 7 weeks. what most people don't know, or maybe they do, is that i have a general dislike for modern medicine. for personal reasons, but mostly it stems from wanting to get back to nature. i feel like there are so many unnecessary things being done nowadays. now don't get me wrong- i LOVE some of what modern medicine has done for the world. i'm not completely naive to that. i just have my issues with it and that's that. so honestly, going into labor early and having to deal with being heavily monitored and having those nurses and doctors around bellz was a tremendous blessing. i can't even fully explain.
i didn't know she was sick. i look back and feel horrid because she was SO. SO. sick. her skin was green and i didn't notice it until i looked back at it. she was so not okay and had it not been for all of those interventions, i would NOT have known anything was wrong until it was too late. i shudder to think what could've happened to my baby girl. but she had her surgery and in time. she had an AMAZING team of doctors, both from madigan and at childrens.
(here's bellz with her surgeon, Dr. Avansino)
i praise God for the people who have been instrumental in getting Bella this far in life. i don't know where things will go from here. there's always a chance that things could take a turn south and head towards needing a liver transplant. but i can say that right now, my girl is healthy. she's happy. she's crazy, loud, demanding, beautiful, loving, sassy....she's absolute perfection. in all honesty, i don't want another baby girl. bella is all girl and then some! she's my perfect little bellz. and whenever i see her scar, i'm reminded of her strength. my gosh i wish i could've bottled up the resilience that little girl had. having to deal with being poked and prodded and disturbed all the time. and not being able to be in mommy's arms when that was all she wanted. to having tubes shoved down her nose and throat and restricted from eating. to having to be cut open and have organs removed. to being born perfectly imperfect and just handling it all with so much grace and strength. she's an old soul, that is for sure.
i can remember that look in her eye throughout the whole ordeal. when she would be faced with having to deal with something and i would plead with her and beg for her forgiveness. and when she would grasp my finger sending some of her strength right through to me. it's chilling how aware she seemed to be.
soon, i'll take her in to get another set of labs done. and i'll admit, i'm terrified of the results. but she is my bella, my perfect little bellabean. and i know that no matter what happens, she can handle it. i can't believe it's been a year. i can't believe that little baby who was barely 8lbs on surgery day is now this chunky little toddler who is finally taking her first steps (omg! make it stop!) who loves to scream at us and steal her brother's toys. i just. can't. believe it.
i've said it before and i'll say it forever. she's perfection. from her perfect little toes and her curly hair and all the way to her fading brown scar across her abdomen.
my beautiful little bellz, absolute perfection.