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!


Q
Have. You gotten anymore information on Ellie's surgery?
A

Yes! I’m about to post an update. :)


Q
Hi! You haven't posted here in a while so I was wondering if you could give any updates on Ellie and how she's doing! Can't believe she's going to be 1 soon :)
Anonymous
A

I know, I’ve neglected my blog terribly! I’m sorry. My life has been really busy, but I’m about to post an update!


Q
Where is the dad and does he have insurance that could help???
Anonymous
A

Her dad also lives in Kalamazoo, but I have sole legal and physical custody and all parenting time. He doesn’t have insurance coverage that could help her. 


Q
I am a student at WMU too and loved reading your blog. Know that many people are impressed by your commitment to not only your peanut but school!
Anonymous
A

Awe, thank you very much! :)


Q
I just happened to come across your blog and I must say your girl is precious.You're so lucky! I admire how well you manage everything that has to do with parenthood,and well to cut it short I wish you and your baby the best of luck in everything. xx
Anonymous
A

Thank you so, so much!



Q
Have you ever looked into the Affordable Healthcare Act? Or is that not an option for you? They can't turn you down because the baby is sick, maybe it could be an option. I hope that you soon find a solution to your problem. You seem like an awesome mom, and I pray that things work out in your favor! :]
Anonymous
A

Thank you! I have looked into it, and unfortunately I am in an income bracket that does not qualify.


Update on Getting Ellie to Cincinnati

After I posted my last entry, I continued searching for options to finance Ellie’s surgery in Cincinnati. On one of a thousand phone calls or internet searches, I found a financial assistance department at the children’s hospital. They normally work with patients who have existing bills by discounting their bill a certain percentage based on a set of criteria. I found an employee willing to work with me before we even had a bill.

Based on their criteria, Ellie qualified to have the vast majority of her bills “forgiven” by the hospital. There was only one criterion she did not meet: we live outside of their geographical coverage region. To overrule this requirement, the business director of the hospital needed to approve the hospital charges, and the business director of the colorectal center needed to approve the professional charges.

The financial assistance department told me they gained approval for the hospital charges quickly, but they spent a month calling and emailing various people, trying to obtain approval for the professional charges. There were multiple times that I was given dates I should receive an answer by, but they just kept getting pushed back further and further as they couldn’t get in contact with the right people. A few weeks ago, they told me there was nothing more they could do but gave me permission to begin calling myself.

I then got in contact with many people at the colorectal center. I was told that we could schedule an appointment even without approval for the professional charges. I really believed I could eventually gain approval for those, but I was prepared to fund-raise and pay for those myself in the event that I was never able to obtain approval.

I received a phone call a few hours after having an appointment in the books informing me not only that approval for the professional charges had been denied, but that approval for the hospital charges would also not be granted. Apparently they were only considering the initial appointment when they had promised me those — not the entire surgery.

Desperate, I said I would just take her to Cincinnati and pay for the entire process myself, further plunging myself into debt. The hospital denied my request to self-pay, knowing they wouldn’t see their money for a very long time. A hospital is not obligated to accept you as a patient if you do not have insurance (unless your life is immediately at risk).

That process cost my daughter another month of pain, another month of her eventual recovery postponed, only to wind up back at square one. The options I am left with look like this:

  • Suck it up and take her to a hospital in Michigan. This means putting my baby on an operating table where she will only be treated by a rectologist (and an inexperienced one, at that). Her vagina and urethra will not be acknowledged, despite the relatively frequent malformation of these areas that comes with ectopic anus. Should we discover later in life that she also needs corrective surgery on her urethra and/or vagina (which would not be uncommon for someone with her condition), she will need additional surgeries to correct those. And every time they cut down there — even when they do it perfectly — some degree of functioning is lost. (Even with the surgery done perfectly, she will recover approximately 80% of her bowel functioning.)
  • Move to Ohio. Quit my job, leave my school, start paying back my student loans, leave Ellie’s daycare that she is so bonded to, pay rent on my home here and on one there, and live somewhere where I don’t know where I will work or who will care for Ellie while I do.
  • Find a way to get her on private insurance. This basically means legally marrying someone whose insurance plan will cover a stepchild, as private insurance companies will not allow me to directly buy her a plan and pay a monthly premium. (I’ve checked.)
  • Do something illegal.

The people who say there is not a problem, that the system is not broken, have clearly never lived in it.


Q
What is it truly like being a parent?
A

While I was pregnant, I spent a lot of time wondering what “being a mom” would feel like, assuming I would feel like I had a whole new identity once I had my baby. But honestly, I feel like the same person I’ve always been, just with another part of me added — a phenomenal, vital part of me. Because I see parenthood this way, the time-consuming and difficult tasks that come along with caring for Ellie don’t seem like work. Of course I use most of my time and energy taking care of the most essential and amazing part of me. Being a parent is the most natural role I’ve ever taken on. So I’m sorry if you wanted an answer about the day-to-day hustle and bustle of parenthood, but it isn’t truly like that.