Insurance Causes Headaches–(What I’m Sure is Part 1 of a Long Series)

Today I got a call from the hospital I am supposed to deliver at telling me my insurance had denied me permission to deliver there because it’s outside their system.

This was DESPITE the fact that on my reason for filling out a pre-admission form was listed as “Delivery of a fetus with CHD in need of a level 3 NICU”.  Also, DESPITE the fact that my insurance has all of the diagnosis information and referral requests from my doctors.

The hospital admissions called to tell me about it, because my insurance was telling them I was only allowed to deliver at a hospital within their system, one that does not have a NICU that can handle much of anything.  It’s not set up to be a hospital for high risk deliveries.

I couldn’t get ahold of the person from my insurance company who also tried to call me from referrals and I was freaking out.  What if I went into labor today and the hospital wouldn’t admit me?  What if Rowan was born somewhere that couldn’t take care of him because of some stupid piece of paper that wasn’t taken care of or some attempt by an insurance company to not have to pay for something?

I was so upset that I started shaking.  I was worried I’d put myself in early labor freaking about about getting this fixed – which would have just been the worst thing ever.

After thinking about it for a while and calming down, I called my OBGYN’s office and asked to talk to someone who dealt with insurance.  I had no problems with getting referrals from her office in the past and they seemed to have everything working like clockwork with my insurance prior to the whole mix-up today.  I explained what was going on to her and she was amazing.  She calmly told me that they could absolutely not deny me coverage at that hospital and that she had a contact with my insurance company and would call and get it straightened out right away.  She promised it would be fine and she’d call me tomorrow morning when it was all straightened out and that I could go to hospital with the NICU without worry if anything happened.

Lesson Learned!  Call the people who know how to deal with insurance companies and ask for help.  Sometimes you are lucky enough to get it.

Now, several hours later, it occurred to me that if something happens and I need to deliver/go to the hospital…I’m going to the one with the level 3 NICU and my insurance can be dealt with later.  I didn’t need to panic so much today.  I had it in my mind that if I went into labor the hospital I needed would reject me because of my insurance.

My husband wouldn’t have let that happen.  I wouldn’t have let that happen.  My OB wouldn’t have let that happen.

I think I expect to have to fight huge battles with insurance companies and make sure every tiny detail is attended to or something horrible will happen.  I think what I did today, calling the right person to get the situation fixed without me having to do it, is the best way to go.

I feel pretty confident that tomorrow this will all be sorted out and I will have panicked today over nothing.

A blog I read from another family whose child had a heart defect said the number 1 rule with insurance is to keep every piece of paper even remotely related to your pregnancy or your child’s care and to document who you talked to and what date and time anytime a doctor tells you you need a certain service or your insurance tells you it is approved or not approved.

Paperwork is always a headache.  I know I shouldn’t expect this to be any different, but it certainly feels different. Needless to say, I have a very large and rapidly growing file of papers now – with a few more documented phone calls.

Snappy

I find myself feeling more and more on edge.  You (women) know how when you are pregnant you feel like you are about to cry for no reason every now and then?  That’s the point I’m getting to.  Everyday it seems a little harder to stay upbeat and positive.  Everyday we get closer to his due date I start to feel a little more nervous.  I don’t think that it has anything to do with Rowan’s special circumstances.  I think it’s just stupid pregnancy hormones.  It’s kind of nice, to have normal pregnancy problems – and kind of crummy because pregnancy is very rarely easy for anyone.

I do notice that I am snappy.  I don’t have as much patience with people when I am frustrated (which is a lot of the time…it’s hard to not be able to take your socks and shoes off without it being a five minute ordeal).  I certainly don’t feel like I have time to calmly explain things in a nice way to people and I just want to make blunt statements and be done with it.  I move slower now but my to do list isn’t any shorter.

This must be that point in pregnancy where you turn into a mood swinging somewhat crazy person.  I’m tired all the time.  I spend all my “patience and niceness” energy with my daughter and my students…so to those of you getting what is leftover – please bare with me and spare me some forgiveness.  I’m trying to stay my usual self, but that just doesn’t happen everyday.  I’m sorry if you deal with me on a day it doesn’t.

Rowan Elyas

We have officially decided on Rowan’s name.

Rowan – Row for short (Little Bird calls him RowRow).  Rowan is a type of tree, one that was commonly used for making bows. Maybe one day Rowan will have a bow made from the wood of a Rowan tree! We loved the sound of the name, as well as it being a name that comes from nature.  I also like the thought of trees in general.  They are beautiful and strong.  The idea of having grounded roots and then spreading their own branches and seeds also makes me feel warm and fuzzy.  I also sometimes think that the circulatory system looks like roots and branches, so I think there is something to be said about CHD and Rowan’s name…but I don’t think it goes very far.

Elyas – Elyas is how we are spelling Elias. It is still pronounced Ah-LYE-is.  Doc’s middle name is Bryan, and sense it is spelled with a “y”, we decided to spell Rowan’s middle name with a “y” too.  Doc wouldn’t let me name our first son after him, so this is as close as I get.  Elyas is also a character in the Wheel of Time series by Robert Jordan.  We both really liked this character.  He talks to wolves.  Wolves are awesome.  Elyas also comes originally from Helios, the sun god, who is a known symbol of strength and resilience, which I know our little man will have a ton of.

We went to the OBGYN yesterday.  My Little Tree is measuring a full 3 weeks ahead and already weighs about 3 lbs 2 oz.  He is in the 93% of babies at his gestation.  The talk I had with him about how he needed to grow as big and strong as he could seems to have taken.  I have full faith that I am growing one tough little fighter.

Guest Post from Rowan’s Dad/My Husband

A word from Doc:

I thought I could add a bit the conversation here and since I have relative few outlets, I asked my wife for a guest spot. So here it goes:

1. I want it to be very clear that we are absolutely optimistic, but this should in no way indicate that this is easy. We have been trying incredibly hard to reassure those around us, which hopefully in turn will reassure ourselves in the process (I’ll get to that below). When it comes right down to it, a whole lot of bad things can happen when our little man gets here. At best, he won’t need open heart surgery at birth. At worst…well, he could simply not make it or be left without any real life to speak of. We simply don’t know. What we do know is that there is an overwhelming chance that he will have his chest opened before he reaches adulthood, maybe even more than once. The extent of even his most minor of procedures will be more involved and dangerous than anything I have ever been through. He could even need a heart transplant AT BIRTH. So you’ll have to excuse my frustration with my colleagues’ and friends’ responses when they say “Oh, at least you know. It can be fixed. It will be okay.” Yes, it can be fixed. I honestly believe that. We can fix a lot of things that are incredibly serious, including a heart with pieces missing and pipes that are hooked up where they shouldn’t be. It will NOT be okay.

2. We are going to make Rowan’s life as normal as we can. That being said, he won’t be able to do some things (like contact sports, as if he had much chance of that with our genes anyway).

3. My wife is a superhero. Many of her readers are already acutely aware of my wife’s innate awesomeness. It strikes me every day I’ve known her that she is an amazing woman with an astounding amount of strength, whether physical, mental, or emotional. Because of this, she is incredibly good at keeping up the appearance that we are all doing fine and everything is hunky-dory and this is just something we have to do. No person in their right mind would think that what is going on is fine. We have just both adopted a single principle….

4. Fake it ‘til you make it. We are living our lives under the assumption that things will work out in some reasonable fashion. We have no promises. We have been in the position of packing up baby stuff before. If we let the thought of losing him in, it will take complete control of our minds and our lives and we would not be able to function, think, put one foot in front of the other, or remember to take our next breath. We simply cannot live like that and we are not going to allow it. That doesn’t mean that every moment you see us is not a constant battle to keep going, to wake up and go to work so that we can provide for ourselves, Evelyn and Rowan.

Doc

Things Keep Lining Up in Our Favor

 

^{I have said quite often through this experience that we could not be in better hands.  We’ve been lucky enough to find out early, do some diagnostic imaging, plan for success, etc.  I even heard great things about the surgeon in town.  So today I thought I would look into him a little bit more.  I read this in an article today when I searched for Dr. Nikaidoh, the surgeon who is likely going to be doing Rowan’s repair work:}

The optimal surgical management of patients with transposition of the great arteries with a ventricular septal defect and pulmonary stenosis remains challenging. When compared to other surgical options, the Nikaidoh procedure results in a ‘more normal’ anatomic result, with better alignment of the right and left ventricular outflow tracts. Also, the pulmonary outflow is less likely to be compressed by the sternum, a major issue associated with the Rastelli repair. This technique is especially useful in the presence of an inlet or restrictive ventricular septal defect, a hypoplastic right ventricle, a straddling atrioventricular valve and/or anomalous coronary anatomy interfering with a distal right ventricular outflow tract incision. ^{(http://mmcts.ctsnetjournals.org/cgi/content/full/2008/0220/mmcts.2006.002337)}

^{I became extremely emotional when I read this.  I had no idea that the procedure the surgeon who will be helping our son developed had anything to do defects that Rowan has.  You might think that there can’t be that many heart defects in children, but there is quite list.  I hadn’t read much on the surgeon yet and decided to try to during my daughter’s naptime.} 

^{My pediatric cardiologist said there wasn’t much point to meeting with a surgeon until after Rowan gets here, but I am beginning to wonder if my husband and I wouldn’t both feel better if we did.}

My First MLH Meeting

Tonight I went to the September meeting of the Tulsa Mended Little Hearts chapter.  I had three goals.

1. Don’t cry.

2. Learn something

3. Make friends

Happy to say that I accomplished those pretty darn well.  I was worried that being at that meeting would make everything seem much more real than I wanted it to be.  I was worried that it would completely obliterate my use of denial as a coping mechanism.  I was worried I’d hit a sudden wall of panic.

Come to find out, I didn’t feel that way at all.  Apparently I have been done with denial for a while.  I really  have accepted that this is our situation now, and that Rowan will endure more than any little man should have to.  The truth is, I instantly felt like I belonged around this group of families.  It’s scary, and hard, but the support that comes from having someone who has walked in your shoes telling you that you will not be alone through the journey ahead is very humbling.

I introduced myself, Rowan, and shared his due date, shared his heart defects, and realized that I felt proud to talk about my son.  Sure, his defects suck, but I am excited about his arrival and already feel proud of my little man. Goal #1 accomplished.  No crying during the meeting.

The speaker at tonight’s meeting shared his take on the importance of organic food, detoxifying your life as best you can, and cautions about vaccinations.  I think being a doctor’s wife and being in the education profession, if someone doesn’t provide articles and sources in a presentation, I don’t give their information much credit…but his audience was not one that I think would demand abstracts.  I loved his take on organic food and toxins in our environment.  He basically emphasized that if our body isn’t wasting energy and resources purifying the crap we don’t need but are exposed to, it can spend more time focusing on healing and repairing itself.  Makes sense.

Vaccinations are still a tough issue for me.  I see the point in spreading out vaccinations and not loading 5 vaccines into one shot, but I struggle with the idea of NO vaccinations.  Post op Rowan doesn’t need to try to fight measles, or the flu, or anything else if he doesn’t have to.  I will have to talk to our pediatrician/pediatric cardiologist about the vaccinations given at birth and whether or not postponing them is in Rowan’s best interest. So goal #2 accomplished – learned a few things, decided to continue investigating a few others.

At the end of the meeting I talked to a few of the other parents.  I friend requested one of them that I talked to for almost an hour in the parking lot.  Goal #3 accomplished.

Amazing meeting – amazing group – I’m pretty excited to take my husband with me to the next meeting.  This is a support group that is active.  They support parents, they raise awareness, and they educate one another.  I think all parents need a group like this, CHD or no.

Doctor’s Appointment

I saw my OBGYN today.  I was a little panicked yesterday because the person that was going to go with me today had to back out last minute.  Luckily, my dad was able to watch the girls so my mom could go with me.

Every appointment we’ve had a little more bad news, and I’m still worried that I’ll go to one and get more bad news, or have to make decisions, and I don’t think I want to do that alone.  It was wonderful to have my mom there to support me.

I’m happy to say, NO bad news today!  I’m up 8 pounds in the last month (WAHOO and thanks to the JWI ladies who feed me way too much).  The last growth scan we had, Rowan was measuring about a week small, which is nothing to be concerned about.  Today he measured a little over a week bigger – which is fantastic!  He’s growing like a champ!  We want him a very healthy weight when he gets here.  It gives him a much higher chance of surviving the surgeries he’ll need.

My OBGYN is STILL waiting on a report from the Pediatric Cardiologist.  I am STILL waiting on a referral from them so I can visit the NICU and talk to a Neonatologist, so hopefully between her office nagging and me nagging, something will get done.

My OB also told me that she is on call for her patients at St. Francis 24/7, so as long as she is in town (which she plans on being) then I will have a familiar face there when Rowan is born.  She also told me that it’s basically the 3rd trimester now, so it’s time to start buying that baby stuff.

Yes ma’am!

We have been putting together a Wish List for Rowan.  Many of our friends and family have asked about gifts and what he’ll be able to use.  Based on what we’ve been told by the Drs, we’ve put together an Amazon Wish List (link underneath information links on the right).  We’re ready to start stocking up on things he will need.