I know it has been a very long time since I posted an update on Ellie! I’ve been dealing with a LOT. Ellie and I were in a pretty bad car accident. (We are both fine, but there was a lot to deal with as far as getting rid of my old car, buying a new one, and dealing with the ticket!) I’m still going to grad school and working. I had to go through the child support and custody process. (I have sole legal and physical custody with all parenting time.) And that’s on top of all the everyday stressers that come with being a young, single mom. But, I finally got Ellie insurance that will pay for her to go out of state!
As of January 1, I was able to purchase Ellie insurance myself through Blue Cross Blue Shield, because a clause in the Affordable Care Act states that coverage cannot be denied based on pre-existing conditions. This involves paying a $6,000 out of pocket maximum, plus the monthly insurance premiums, so my mom and I started a fundraising page for Ellie. It’s right here, and if you’re motivated to donate and/or reblog/share/tweet the hell out of the link, I certainly wouldn’t mind! http://www.youcaring.com/medical-fundraiser/for-ellie-s-sake/124860
I’ve gotten Ellie on a good diet and laxative regimen now. She is pooping on the potty daily after her dilations and laxatives! She’s able to eat all fruits and veggies and, in moderation, most other things that don’t involve meat or dairy. She is walking, talking, signing, and has eight teeth!
Dr. Levitt, the surgeon I’ve chosen for Ellie, had announced that he would be moving from Cincinnati Children’s Hospital to Nationwide Children’s Hospital (in Columbus, Ohio) in April. I’d really hoped I would be able to get her in at Cincy before his departure but learned that I wouldn’t be able to. I was then faced with the decision of choosing between the more experienced staff as a whole that is at Cincy and the more experienced surgeon himself, who will be at Nationwide.
I’ve chosen to follow Dr. Levitt to Nationwide. With 22 years of experience performing PSARPs and having trained under the man who invented the procedure, he is literally the best imperforate anus surgeon in the world right now. Aside from that, he is an amazing man who has spent many hours over the last six months communicating with me directly, examining photos of Ellie and giving me medical advice and support when I was desperate, when I wasn’t even a patient. Once he leaves Cincy, the most experienced surgeon there has five years.
I’ve also learned that once the first six month “window” to perform the surgery is missed, another “window” isn’t missed until two years. This means that although the best surgical outcomes would have come before she was six months old, I’m doing no harm by waiting a few extra months now. It’s another thing I was misinformed about by the local pediatric surgeon and spent months agonizing over.
Her surgery has been scheduled for when Dr. Levitt has made the move to Nationwide and when I’m finished with finals this semester. We will be leaving Michigan at 4:00 am on April 29 for at least a nine day hospital stay in Columbus! The first day down there will be full of testing; the surgery itself will be on April 30. I’ll miss the first week of my summer classes, but that’s a very small problem in the scope of what we’ve already faced.
In the past nine months… I have listened to doctors tell me nothing is wrong with my baby when I KNEW there was a problem. I have had to hold my baby down on steel medical tables while her body is pumped full of fluids and forced into unnatural positions while she looks up at me and cries. I have spent countless hours in the library and online researching my daughter’s condition, its treatment, and health care laws; countless hours on the phone to hospitals, insurance companies, and lawyers who disconnectedly offer their condolences but ultimately only care about money and send me away; and countless hours awake at night massaging my sobbing baby’s stomach. (Those ones hurt the most.) I have performed medical treatments on her myself until we are both so practiced at it that neither of us flinch. (That still makes me sick.) I have pushed my own body to its limits to exclusively breast feed her until she was nine months old, bringing myself down to under 90 lbs. I have considered marrying strangers, abandoning my life here and moving, and committing insurance fraud to get my baby the surgery she needs. I have listened to people tell me I’m not trying hard enough or I’m trying too hard and should accept sub-par health care for my daughter. The whole time, I thought the clock was ticking and her condition was getting worse, I was a full time graduate student and part time employee, I was the only parent involved in her life, and I was two hours away from my own family. I’m very fortunate that my head didn’t explode.
Nine months ago, the thought of my baby on an operating table made me sick to my stomach. After experiencing this for nine months, the thought now brings me to tears with happiness.
Is it still going to be hard to spend at least nine days hospitalized with my baby, alone and out of state, when she’s in pain, on anesthesia and pain medication, having her bowels forcibly emptied, can’t nurse and will undoubtedly only want to, can’t move and won’t understand why, and I won’t be able to help her? No, I’m not quite sure hard is a good enough word. Am I scared? I am absolutely terrified.
But I know that when I said “If it’s the last thing I do, I’ll get my baby to Dr. Levitt,” I meant it. And at times, it felt like it truly was the last thing I’d ever do. But I did it. And I’ll do this too, just like I’ve done everything else. I have to, for my baby. When the moment comes for me to let them admit Ellie, put her under anesthesia, and wheel her away from me, I’ll know I nearly broke my neck to put her in the hands of the best surgeon in the world.
As far as pictures of Ellie go, I’ve been absent so long that it would blow up everyone’s Tumblr feeds for me to catch you up now! I’m on Instagram @daniellephant__ (That’s two underscores.) Go follow me! And I’ll get that hooked up to here so it automatically posts her pictures from now on. I’m on Twitter @daniellephant_ (That’s one underscore.) And I’m on Facebook. I really will make an effort to update more often!