Thursday, March 18, 2010

Oh what a (crazy, insane, surprising, deflating, exhausting) morning!!

We were up with the sun today to get ready for our morning. The babies needed to eat early, get bathed, and dressed - then let me do the same. I did get a really quick shower and got dressed...complete with underwear! (I think that's pretty good these days). I even dried my hair - though I just threw it in a ponytail afterward AND put on a little makeup for our morning o business. Mary Louise and David did their best to cooperate though I'm pretty sure I was asking a little too much of them to really get it together right off the bat - and shifting meal time up a little over an hour to boot.

First stop: BCBS private division insurance office...the agent I've been speaking to was very nice and politely told me there was little to no chance that we'd be approved. He then added that stranger things have happened in his 23 years with the company so I should remain cautiously hopeful until I get an official denial letter. He said that regardless of David's current health, his respiratory history is what would flag him as uninsurable. I asked him how long their prematurity would follow them as far as issues like this are concerned and he said that his company reviews back 5 years. This means that if David stays healthy and without further hospitalizations or diagnosis for 5 years, he would likely be considered insurable again. Not that it matters now, but in the past I've been told that a private insurer wouldn't even consider them as healthy adults - because they were micro-preemies. This would mean that if either of them wanted to be self employed, they couldn't because they couldn't get benefits. - I know - one thing at a time. Part of me loves to ponder such luxurious issues - as at one point we could barely look 5 minutes into their future, much less 5 years or more!

So, the application is started and is being processed. If denied, we will hear within a week or 2.

I did overhear an interesting conversation while meeting with the agent...He answered a call while filling out David's application (I will resist the urge to chastise him for being rude). Of course his cellular was turned up way too loud and I could very clearly hear a woman on the other end of the line. "I need to look into a private insurance policy for myself as my husband's company doesn't have open enrollment for theirs until...and (here's the kicker)I'm pregnant." (Agent's response- said in about the same tone as if he was telling her she had the wrong number ): "Ma'am, no one will insure you while you're pregnant." Then he just hung up the phone. Ha - pregnancy falls under the same category as cancer or HIV or any other terminal disease process. My knee jerk reaction was to reach across the desk, pick him up by the shirt collar and shake him screaming, "How in the world do you sleep at night?!" I secretly feared he'd just upset that poor woman so much it would send her into labor.

Rather than making a scene, I just leaned forward, grinned, and said, "all I really need is a denial letter from you so that I can start the application process for the fabulous sub-standard Louisiana high risk plan." He replied that he knew what I needed but unfortunately, I had to take the time to fill out and pay for the entire application process in order to get it (don't worry, the money gets refunded once we're denied). Anyhow, it's done. All I can think is "the house always wins." I feel that rather than all of the fluff they try to sell you for their "premium policies", honesty would be more appreciated. I picture their honest sales pitch going a little something like this, "Ma'am, I can sell you a pillow. Not just any pillow - this one is completely invisible. It doesn't get in the way and it's not something you have to store. In fact, this particular pillow lies there making you feel all warm an comfy. It's a pillow of propaganda there to make you feel protected. But, your pillow is really owned by a company that is in the business to getting paid rather than paying out. So, when you really need a soft place to fall, your pillow will be ripped right out from under you- because you see ma'am, the house ALWAYS wins. But as long as you're healthy, you get to keep your big, fluffy, beautiful pillow for the bargain price of (insert dollar amount here)."

Next stop: the Pediatric Cardiologist. By this time I was (apparently obviously) exhausted. I walked in, the receptionist said hello, that the babies looked good, were getting big, etc. We waited for a few minutes and were called back for EKG's. The nurse (who smacks gum - UGH such a pet peeve of mine) said, "wow. you look tired." She said this while watching me try to maneuver a side by side double stroller through the door - not holding the door - watching. I looked up through my glasses (that I desperately need now when I'm tired) and my falling hair (that Mary Louise so graciously pulled out of my not so neat ponytail. I frowned and said, "thanks, I am exhausted." I should have asked her what her frame of reference was. Geez. Just what I needed - someone to tell me how bad I look on a day that I bothered trying to look, well, less bad. Telling someone they look tired - ESPECIALLY when you don't know the person - ranks right up there with telling them they look fat, bloated, and or swollen in my book. Moving on...

The babies did as well as they could. They were definitely ready to have some genuine playtime when all was said and done. David has a small PFO (patent foramen ovale)- very tiny and not very concerning. He is expected to grow out of it with a little more time. He will be rechecked in 3 years just to make sure this issue has resolved and there aren't any others.

Mary Louise still has her PFO. It is a little bigger than David's but is expected to resolve. More concerning is the fact that she still has a coronary artery fistula. It is a branch from the coronary artery (that supplies blood flow to the heart muscle) to the pulmonary artery (that goes to the lungs) - a branch that is not supposed to be there. Now, if you are to have a fistula, this would apparently be the one to get. The pressure in the lungs usually keeps them from getting big and causing symptoms. The problem is that it steals blood flow from the heart muscle and drips blood into the lungs. The amount of blood in the lungs should not cause an issue- it is a negligible amount. However, the loss of blood to the heart muscle is concerning. Hers steals up to 5% of the blood flow that should supply her heart with nutrients, oxygen, etc. She is currently asymptomatic. But the fistula size has not changed in 6 months. From here, it could: 1. stay the same (most likely), 2. resolve (just a possibility), or 3. get larger (not likely but if it does happen, she will need surgery). If it stays the same, it could come into play when she is (gulp) more active - as in running or in organized sports. So, if nothing else, before putting her in any sports like activities or classes, we would need to consult with a cardiologist and likely have a stress test done. Currently, the doctor wants to recheck her in 6 months. If the fistula is the same again, he will check it yearly until or unless symptoms develop.

I had to smile when the doctor said that Mary Louise and David were some of the most relaxed and happiest preemies he's ever seen. David is so funny. Ever since his hernia repair, all he does is smile. But, the relaxed part really got me - those babies never. stop. moving. (I'm not kidding). The doctor said this is typical of preemies - which is what I've heard from other moms and read in preemie related articles. Little fireballs. Ha.

We came home and of course as the babies slept in the car on the 30 minute drive, I was once again the only one who was tired. So, walking we did, then we had playtime in the driveway. Each of them held onto my fingers and walked. They loved to watch their shadows on the concrete - David kept trying to catch his. Mary Louise has started a new belly laugh thing that she does when she's outside. She just bursts out laughing really loudly - wrinkles her nose and flaps her arms. It's just too funny. So, in the end, we had a really wonderful day - so beautiful in the sunshine.

Mary Louise has also started a new cling to mom phase - oh and even better - a buck the bedtime phase. Last night she was wild until 9pm - they go to bed at 6pm...

xo,
Heather

P.S. After just one day of doing the recommended facial exercises with Mary Louise, I have already noticed an improvement in her eating. Today, she was actually excited about the spoon for the first time ever!

1 comment:

  1. Hi Heather,
    I'm a friend of McCall's from the W. I started reading your blog last year when she would post updates from your family on Facebook (sorry for being a blog-stalker!). I just wanted to tell you that I am in awe of the strength that you have had this past year. I love reading your blog--you are a great writer! My husband and I have friends who had a micro-preemie in Dec so I love hearing how well your little ones are doing! And I feel an ounce of your pain on the insurance thing...I developed HELLP syndrome when I was pregnant (thankfully, not til I was 39 weeks) and had to have a C-section. I quit my job to be a stay at home mommy for a little while so I had to look for private insurance. BCBS denied me as soon as looking at my medical records. Funny how you can get denied for a plan that doesn't cover pregnancy for things that can only happen if you're pregnant! Good luck with getting coverage for your little ones!
    Dara Campbell

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