Medical Bills for Adaline & Degan

Hello,

Some of you already know my story and some of you may be reading it for the first time here.

My name is Degan and I'm a single mom raising my daughter, who is currently seven months old. Adaline was born September 16, 2022 via an emergency c-section after my amniotic fluid levels dropped dramatically over the course of a week. During a scan at 35 weeks, my OBGYN saw "something" on my scan that she said looked like a cyst inside my daughter. She said this could cause a problem or could be nothing. Having my daughter was an amazing and difficult experience. When we finally made it to our recovery room together, I was so happy. I held her, breastfed her, and let her get to really meet her Mimi. But as a few hours passed, she refused to eat a second time. She turned very red and cried in a way I could tell was pain. I called for the nurses. It took a little bit of fight, but they agreed to take her off for an x-ray. As soon as that was done, things began to speed to a rapid pace. Her small intestine was completely ruptured. The amniotic fluid she'd been drinking had created a cyst in her gut. They needed to open her up right away and remove the cyst, the dead section of bowel, and re-attach everything together. That's always a very scary thing to hear as a mother. I waited with anxiety through surgery and immediately met her in the NICU after. She spent nine days following the surgery recovering in the NICU. It was so hard after I was released to go home at night being away from my newborn.

I was so happy when we were finally told she could come home. I'd been pumping breast milk during her NICU stay, but that's hard when not with your baby, and I wasn't producing enough to fully cover her needs. We supplemented with the formula the NICU gave us. It was fine formula. But she didn't take well to it. Over the course of the next month, she steadily lost weight. By one-month-old, she was only 5 pounds. She was having constant diarrhea, and not eating very well. I met with her surgeon and her gastroenterology team regularly, and they decided we needed to admit her to the hospital for failure to thrive.

What ensued next was certainly time-consuming and stressful. She spent the next two months in the hospital. They needed to know exactly why she wasn't pulling any nutrients out of her food. She had swallow studies, chest x-rays, so very much labwork, an NG tube, O2 at one point, blood transfusions, a central IV line and TPN nutrients... She went through so much.

Ultimately, they decided that because of the distension and lack of mobility in a segment of her gut and a severe milk allergy, she had had an overgrowth of bacteria in her gut. This led to her being unable to absorb anything she did eat and also led to blood in her stool which was causing her body to weaken. This could only be truly corrected and addressed by getting her on the right formula (one meant for severe milk allergies) and surgically implanting a g-tube into her stomach.

Finding out there wasn't some genetic condition causing her problems was a relief, but clearing all of those off the table was an arduous process that resulted in many blood draws. At one point the doctors marveled at the tests we'd done, commenting that they'd run many tests they'd never before even run at that hospital.

We were finally released from the hospital in December. Her home health company set us up with Adaline's G-tube pump and other supplies, and we got a prescription for her formula, which costs $50 per 16oz can. She also had a few medications. Reflux medicine and a gut-based antibiotic that she takes in cycles. I settled into my new routine with her at home. Things seemed to be going okay.

There has been a constant looming question of whether she needs additional surgery though. There is scar tissue from her first surgery adhering her intestine to her liver in a way that could lead to issues. As we tried to figure out the best answer, Similac underwent a massive recall, and suddenly Adaline's miracle formula was gone. We began to try other formulas, and none worked well, until recently, when finally one did. It is also $45 per 16oz can. Two days ago, I received a call from her medical supply company saying they couldn't find a source for this formula. They said that it's too rare and can't be found. It isn't sold in regular stores anywhere either.

And that's where we are today.

Adaline has had multiple surgeries, I have had my c-section, we are trying to afford an expensive and rare formula, and the medical bills keep coming in.

Honestly, I'm in a better place than some. My insurance covered a lot of what Adaline went through. But my plan has a $5,000 per year, per person deductible. So last year, with my c-section and Adaline's surgery and hospital stay, we racked up $10,000 in bills, plus another $1,500 in costs insurance didn't cover. I paid as much as possible and went on a payment plan for the rest. Then this year, it started over. Adaline's home health bills, GI bills, surgeon check-up bills, physical therapy bills... they all want immediate payment at the time of service. Add the formula costs to that, and it's getting to be way too much.

So, I'm starting this up. People told me a long time ago, when she was still in the hospital, that I should start one, but I didn't have the bills then. Now I do, plus the daily costs of maintaining her specialized care.

I know that what I am asking is high, but it's only a portion of what was owed to the hospital last year even.

So please, if you have a little extra or relate to this story and want to help... Please. For me, for my beautiful curly-haired daughter who loves Aladdin and Pikachu and who smiles through everything she's had to endure. If you can donate, please do.

My daughter is my whole world. 

Thank you so much

-A loving mother