The morning began with a breastfeeding class. I was really glad to take this class because I learned a ton of information. The instructor was also nice enough to highlight the differences for a mother of a premie/NICU baby as I will likely have. One thing I pray and hope for is the ability to breastfeed my baby girl. I know that with her conditions she may have difficulty with suck-swallow so I am nervous but at the bare minimum hope that I can at least provide her with my milk. Receiving a mother's milk is so good for a baby's brain development so I don't want to deprive her of that unless it is absolutely medically necessary to feed her with formula.
After the class I came home to two pieces of mail. The first was our itemized statement from the hospital for my 5 day stay totally a little over $12000. That's a crazy outrageous amount of money but pretty much what I was expecting. What I wasn't expecting was the second piece of mail from my insurance company stating that in their retrospective authorization of my hospital stay they decided that the treatments provided were not necessary of an acute inpatient hospital stay so they were denying my entire claim. I have worked really hard to prevent anger from being one of the emotions I feel about our baby's condition, so therefore my anger has been diverted to absolute frustration and disgust towards the insurance company. I will of course talk to my admitting doctors and request their assistance in getting this appealed but in the mean time I am quickly learning that the insurance company is not there to be your safety net in the time of absolute need but there to find any way to avoid having to pay the high dollar amounts that are associated with major medical problems. It is exhausting, mentally and emotionally, to have to manage these insurance problems when there are so many other major decisions to be handled right now.
I spent part of the afternoon taking down Christmas decorations which made me sad because I love how pretty they make the house but it is time for nesting and prepping for the arrival of our little girl.
I then got online and tried to learn more about the Polymicrogyria (PMG) that our daughter has been diagnosed with. Overall, my web searches have been futile and frustrating because PMG is the name for what is happening to her brain but there are many sub-diagnoses that provide a more specific picture of what symptoms that person might have. As of right now our daughter has not received that sub-diagnosis and probably won't until she has an MRI after birth. The other frustrating part was that I could not find much data about outcomes of children diagnosed in utero because primarily children are not diagnosed until they experience a catastrophic event during their developmental years and many more go misdiagnosed for long periods of time. What I really needed to know is what type of symptoms we can expect for our little girl so I found a support group on facebook and joined it.
In initially reading through the support group I became very overwhelmed and thought I had made a mistake because so many of the children on there had considerable disabilities and there were a ton of discussions about the challenges their children face. I initially felt severe denial as I could not accept that this is what our daughter will be facing. I then began to feel very depressed as I was looking at the reality of a very challenging future for our little girl and us. I decided, however, to introduce myself to the group and explain our unique situation of the diagnosis in utero and asked for general advice. I received over 25 responses, mostly of people introducing themselves and their children to me. Every single child presented to me was completely differently from the next child and with all entirely different levels of involvement. Several people that reached out to me are in the Atlanta area and were able to give me advice about neurologists that have experience with this diagnosis.
One very sweet woman in Kentucky reached out to me and actually talked to me on the phone to help explain many of the government services available to children with PMG. While the services are probably called something different in GA she mentioned that the baby will qualify for Medicaid that is not based on our salary but based on her diagnosis in order to help pay for her childcare needs. She will qualify for WIC which can help pay for some of her needed supplies like special formulas. She will qualify for early intervention programs that will provide OT, PT and speech. In Kentucky, there is even a program to help pay for the medical insurance premiums and she believes there should be something similar in GA. While it was sad to hear that the diagnosis of PMG is an automatic qualifier for many of these services, it was really encouraging to learn about all of these possibilities available to our girl and us. This woman offered a lot of genuine encouragement.
I also chatted online with another woman who's child was diagnosed in utero around the same week as us. Her son seems to have different complications of PMG than what our girl does (from my ability to understand the MRI) but she was able to give me a lot of good advice about the decisions she and her husband made about where to deliver their child and how to initiate services for their child immediately after birth. It was just so helpful to hear from someone who had experience with dealing with this diagnosis so early on in the baby's life. She also helped to validate a lot of the feelings I am having about learning all these scary things about our daughter. She made me very much aware of the fact that we need a neurologist on our team right now so I will be asking our doctors for a referral.
Some of the consistent things I have learned about this diagnosis are:
- that PMG is extremely rare and subdiagnosis are even more rare, therefore it is really hard to find information about what to expect for your children's growth and development
- there is a guru neurologist and geneticist physician located in Seattle who is doing the most specific research on PMG and may be a good resource for us in the future.
- almost all forms of PMG have associated seizures and epilepsy. This is of course frightening because recurrent seizures can be extremely difficulty to control and can contribute to developmental delays
- most children with PMG have low muscle tone which can cause some delays in their development to severe limitations and disabilities with reliance on assistive devices.
- the speech region of the brain is typically impacted to some degree as well. This can mean difficulty with expressive speech, understanding speech, developing conversation skills, swallowing and eating.
- overall, the severity of each symptom in each individual can range from mild to very severe
- this is absolutely a day-by-day diagnosis and probably always will be.
- there will rarely be concrete answers or predictions for our baby's situation
Finally, the day ended with me skyping with my family as they celebrated our immediate family Christmas. It was so fun to watch them open all of their presents and feel like I was a part of it even though I was 800 miles away.
Overall, I have been able to accept the vascular and cardiac conditions that our daughter will face because there is a definitive plan with definitive risks and benefits. I have mostly been in denial about the brain damage because there is nothing definitive about it now or ever. It scares the crap out of me and I am not entirely ready to accept how much it will change our lives and the plans we had in how we were going to raise our child. Anyways, thanks for letting me vent and express some of the emotions that I am dealing with.
You are so honest. I'm proud of you. And here for you always!
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