million dollar baby

Graysen is expensive.

He managed to burn through our entire insurance deductible and out-of-pocket maximum in his first three weeks of life (thank you, dear husband, for working at an insurance company where we get good benefits).

Since then:
28 doctor visits (Yes, I counted.  Nine in the month of January alone.)
Six different specialists.
Five prescription medications.
Four EKGs.
One chest x-ray.
One CT brain scan.
One Cranial remolding helmet.

Currently, he is seeing a cardiologist, a neurologist, a urologist, an ophthalmologist, an orthotist and a physical therapist (*I'm not including details here- for the sake of those who want to skip all the medical jargon and diagnoses and whatnot- but I've explained his conditions and progress at the end of the post if you'd like to know more).

It's not as bad as it sounds.  He is a healthy, happy baby. And for the most part, his issues are relatively minor.
He just has a lot of them.
Which makes for an awful lot of doctors' appointments.  And co-pays. And time and gas spent running to offices all over town.  And a mom who pretty much worries herself sick about him all the time.

Poor kid. He's been through a lot.  The incredible thing is, he is always happy. He is always, always smiling. And giggling. And flirting (he has the receptionists at more than one office wrapped around his little finger!).  He is full of so much JOY.  Despite all his little challenges.  Oh, we love him for it.  No matter how much he costs.

(playing under the chair. a favorite pastime.)

* THE DETAILS.

The Heart:
At five days old, Graysen was diagnosed with SVT (supraventricular tachycardia, or episodes of extremely rapid heartbeat).  After one frightening episode (defibrillation on a 4 lb baby! Yikes!), and several more a day for the next few days, the NICU doctors started him on first one, then another beta blocker (medication for slowing down the heart rate/decreasing blood pressure. Yes, I give my baby the same medicine your Grandpa takes).  Once his episodes seemed to be under control, we brought him home. (And bought a stethoscope.) Graysen's heart has no structural problems; the issue has to do with the heart's electrical circuit and a possible extra sinus node, or accessory pathway (in lay terms: a spot of heart tissue that conducts the electrical signal when it shouldn't). As far as I understand, the electrical impulse signalling his heart to pump gets "off track," and the circuit is completed much more quickly than normal, causing rapid beating.  The scariest thing about all this is that, even though an infant's heart can sustain rapid rates for some time, if an episode went on too long without us knowing, his heart could burn out. BASICALLY, it all means we watch him closely, visit the cardiologist regularly, and in a few years possibly try a minor corrective surgery.  So far, medication is doing the trick just fine.

The Neck:
Graysen has always favored turning his head to one side, and for his first several weeks often slept with his face turned all the way to the left.  Because of this, or possibly because of the way he was positioned in the uterus, he developed Torticollis. Fancy way of saying the muscles in his neck are tight and his head usually tips to one side. Left untreated, the tendons in the neck can shorten and limit the head's range of motion.  We've seen major improvement and much better head posture with physical therapy, but the muscle tension and head tilt have hindered his physical motor skill development (he still struggles to hold his head up straight for long periods of time, push up on his arms while on his tummy, and balance while sitting up, because his little head is always cocked to one side.).  The muscle tension can cause jaw problems and asymmetry in the face, so we are working really hard to correct it. However, we weren't able to make enough difference with repositioning and physical therapy (and the stubborn little guy would only turn his head one way while sleeping) before the external pressure on the left of his head caused positional plagiocephaly, or flattening of the skull on one side. On to the next...

The Head:
Because he was a preemie, Graysen's cranial plates were still very soft when he was born.  Add to that the torticollis (always turning to one side), plus the lethargy and low energy caused by his heart medication (not moving his head much at all), and the result is too much pressure on one area of the skull. And a big flat spot.  Luckily, babies heads grow so rapidly that it's usually possible to reshape the cranium without surgery. Enter the cranial remolding helmet! After a CT scan to make sure there was no pressure on his brain (results were normal, thank goodness!), Graysen's head was casted in plaster (saddest ordeal ever. I cried more than he did), then a foam and plastic helmet was made just for him.  Essentially, it restricts the growth in some areas, while voided space encourages growth in others.  He has been wearing it since the beginning of January, and his flat spot has filled in, his head has rounded out, and for the most part we're just down to the "fine tuning."  There is still some asymmetry from right to left, but the orthotic practitioner thinks it'll only take another month or two to correct. He wears it 23 hours a day (an hour off for a bath and to scrub out the helmet because it STINKS), unless I want to cuddle him, or unless we are at the park and I want him to be able to feel the wind in his hair. I mostly loathe the thing, but I'll be darned if he isn't just the cutest little helmet baby I ever saw.

The Eyes:
Plagiocephaly can sometimes lead to vision problems, if the plates of the skull are lopsided in such a way that the eyes are no longer in the same plane.  We're not positive this is the case with Graysen, but his pediatrician recently noticed his left eye wanders a bit and was concerned enough to refer us to an ophthalmologist.  We haven't had the exam yet, so we'll see how it goes and update then.

Phew. Thanks for hanging on to the end. If you made it through all that, you deserve another photo of this handsome little guy (sans helmet):