What I've been afraid to see...

I knew it would be there, and honestly I've just refused to worry about, recognize or confirm my fears regarding the financial costs of Max's 123 stay in the NICU.

We've just been spending what we need to in order to make things work, shuttling kids, eating meals out, buying a new preemie car seat, buying a swing that a preemie can sit in, buying expensive preemie formula, etc... because it's what we need to do to make things work and just get Max home. Yes the bank account has dwindled, but we've been able to make it work and still pay our bills and when push comes to shove you cash out a 401K and decide it was well worth it to get the boy here with us.

Now he's here, we're settling in, and Troy and I decided today to finally take a look at our health insurance accounts. We are on a group policy, through Troy's employer, the lifetime maximum for the policy if $5 million. It's a family policy, so I have to admit I'm not clear if that's $5million per person, or $5 million for the entire family. It's listed on the website just as a maximum for the family, and the other accounts are listed for each person, so who knows...

Anyway, that amount applied to the lifetime maximum so far, if $4,999,932.85. Yep, that's right, we have $ 67.15 left before the insurance company can ditch him or ditch all of us, depending on how it works. That's not even enough for his next appointment to get a flu shot, and I don't think all the bills have come in!

I have absolutely no idea what we're supposed to do next? We're not impoverished, so we don't qualify for government assistance. So where are we supposed to come up with this money? Do we sell our house and a car and live in our SUV? (that wouldn't cover it) Do we stop taking him and the other kids to all medical appointments and just got to Walgreens clinics when someone gets sick? Do we home school Ella so we can avoid the germs at kindergarten?

He still has appointments with the neonatologists who treated him in the NICU, with the surgeon who cut into his body 4 of the 5 times and may still need to take care of 2 hydroceles and a 3rd hernia, not to mention the pediatric ophthalmologist, developmental pediatrician, and his regular pediatrician for those childhood immunizations and the RSV shots he'll need to keep him from a deadly virus this winter. (those shots are $1800 monthly for 6 months)

Oh and that doesn't include if he gets a cold or a stomach bug, or anything, because we can't treat any little illness with him as a minor thing. He can die from a cold. A stomach bug could be a repeat of the NEC and his bowels could shut down. His bones are still so brittle we still can't even burp him normally. What are we going to do?

I have so many questions and honestly, don't find much help out there. Does Troy try to get a different job so that we can get onto a different group policy? Do I go back and find a full time job with benefits and we hire someone to come in and care for the kids, because with Max's compromised immunity he can't go to childcare? Will I be able to find a sitter or nanny with infant CPR experience in case he stops breathing? Can that person take him to his medical appointments every week and meet with the infant and toddler service in our home which will be evaluating how is development is progressing? Could I find an overnight job with benefits so I could be home with him during the daytime hours? Could Troy and I alternate on those opposite shifts with the feedings every 3-4 hours, medications, and two other kids and still sleep enough to function?

My mind is in full panic mode tonight. I can't get any answers until Monday and honestly, I don't expect to learn much very quickly, because that's how bureaucracy seems to work.

All I can do is pray. God has seen us through this so far. He's kept Max alive. Surely he didn't intend for this to be where things to wrong. For us to get him home and not be able to care for him is devastating. We are his parents, we've always had health care insurance for our kids, life insurance for ourselves in case anything happens, even our retirement. I've always said as long as we had each other, we'd be fine. Now, I wonder, is Max going to be okay with us? Can we find a way to care for him and meet his medical needs? If we all lose insurance, what about the other 2 kids? We can buy a policy for Ella and for Troy, but not for Max and myself and not for Alex with his pending surgery recommendation.

I have no idea what we're going to do. I have idea how this happens when we are responsible, caring parents who have the safeguards in place to protect our kids, until now. I can't believe this has happened to us and I just want it to all go away. We've spent months working to get him well and home to us and now this... I knew there was a reason I was afraid to look at that insurance website. Now I've seen what I was afraid to see, and I'm afraid I can never look back.