In 2013, just shortly after Genell’s 2nd birthday, the phrase “failure to thrive” was unfortunately introduced to us. Failure to thrive is a medical term given to children that aren’t gaining adequate weight. If you read my first post (TwinMomMel – Est. 12.14.11), then you will get a better understanding on how IUGR can impact a child as they grow. (Every child is different, I am only sharing my personal experience.)
In May of 2013, the G-tube (Gastrostomy Tube) was placed in her belly along with a Nissen fundoplication which surgically wraps the top of the stomach around the bottom of the esophagus to reduce severe reflux. Since giving birth to her (and her brother of course), I’ve learned so much both medically and parentally (is that a word lol?). Prior to her surgery, we took this last picture before her “other belly button” was created.
From age 3-5, when we lived in FL, Genell had a nurse 7 days a week, 10 hours a day that would handle all of her medical needs, but after stepping out on faith in 2016 and moving back to MD for better opportunities, I got the unfortunate news “Sorry, in the state of MD, you make too much and are no longer eligible for nursing services”. So I had to make the decision:
- Do I forget about the hard work that it took to get this degree in Computer Science and find work that will keep me under the financial guidelines to keep a nurse? Or..
- Do I continue working hard, make the money I deserve, and just figure out this medical stuff on my own?
After looking at the video that was posted on Instagram and Facebook, I’m sure you’ll know which decision I made. It definitely is not easy. I even opened a case with the governors office regarding the situation (Thanks Jeff B for the suggestion), but to no avail, their answer to the case was “put her on your private insurance”.
The unfortunate reality with doing that is private insurance does not cover most of the things that Genell needs (not unless I pay an astronomical amount of money for the services and equipment). And I’m talking about thousands of dollars!!
Nevertheless, I didn’t let that stop me. Funny thing is my first major was nursing. I gave that up literally after the 2nd day of working in the hospital because I couldn’t handle it (and I was only in Telemetry). But low and behold, years later, here I am pretty much being a nurse/mom to my own child.
God works in mysterious ways!