Wednesday, January 23, 2008

The After-Christmas Browns

I still haven't taken down my Christmas decorations.

With the boys having been sick, it just got pushed even lower on my list of priorities. Weeks ago, the lights stopped twinkling, the garland lost its sparkle, and everything turned a bit dull. I don't understand how, when just a month ago, everything was shiny and sparkling and full of holiday wonder, it can now seem so dull and lifeless.

Christmas and New Year's are done, and there's not much to look forward to for quite a while now. Sure, there are the "holidays" like MLK day and President's Day -- all those excuses for a 3-day weekend, but those days don't hold the same sense of anticipation and excitement that "real" holidays do. There are no gifts to open, no twinkling lights, not even a single fire works presentation or parade. The days are still short, the weather is still cold -- there seems to be no end in sight.

I wouldn't say that I've got the "blues." I'm not sad about anything. There's just no tinsel in the middle of January. Holly Golightly (Breakfast at Tiffany's) had the "mean reds." I don't have that either. Life is generally pretty good. The boys are healthy again, despite a lingering bit of nasal congestion. B's job is going well -- we are even able to squeeze in a trip home to visit relatives. So red isn't the right color, either.

Brown.

Dull, kind of murky, bland, boring...

Ordinary.

I've definitely got the after-Christmas browns. Perhaps a shower & a tooth-brushing will clean it up. Too bad they don't make whitening strips for days like today.

Friday, January 11, 2008

Denied!

If there is a medicine available to prevent a pretty serious illness in infants and toddlers, shouldn't everyone have access to it?

Bronchiolitis is a lung infection caused by RSV, which occurs in epidemics every winter. It leads to a serious infection of the lungs only in children under 2 years of age. It causes wheezing, rapid or tight breathing, coughing, fever, nasal congestion. Bronchiolitis can lead to ear infection, bacterial pneumonia, and even an increased risk of asthma. The illness can last for up to 14 days and, as you can imagine, makes a baby extremely uncomfortable.

This virus is spread by someone sneezing or coughing up to 6 feet away from another individual, or by touching something which an infected person has touched. Considering that babies have to go to the doctor at the very least for well-baby checkups at one, two, four, and six months, etcetera, it is reasonable to assume that every child runs a risk of catching this virus.

There is a monthly shot called Synagis which can prevent babies from getting RSV and bronchiolitis. The only problem is that it is EXTREMELY expensive, and insurance companies often deny treatment to "healthy" babies. Rather than try to keep all infants healthy, they decide to play a game of Russian Roulette with the health and safety of thousands of children. They have a list of criteria to decide if a child is "high risk" enough to warrant this preventative treatment.

Apparently, our boys are not "high risk" enough. They were born a month premature. Each developed Respiratory Distress Syndrome while still at the hospital and had to be admitted to the NICU. One twin developed one pneumothorax and had to be in an oxygen hood for a day before graduating to a nasal cannula for another day and finally being discharged without oxygen. The other twin popped TWO pneumotoraces, spent a day in an oxygen hood before being intubated and given two doses of surfactant to mature his lungs. He spent a total of 12 days in the NICU before being discharged without oxgyen. After only one day at home, he had to be put back on oxygen and remained on it for over a month.

According to our insurance company -- which is a big company and considered to be one of the best, by the way -- our boys were not preemie ENOUGH, and since they went home without oxygen (despite the fact that one immediately went back on), they didn't need Synagis. We were denied.

Keep in mind, too, that any baby with complications, such as our little guys' lung issues as well as heart problems, is going to spend a lot more time in hospitals and doctor's offices than even a so-called "normal" baby would. Where better to be exposed to a cold virus than in a hospital or a doctor's office? One kid coughing six feet away could do it. Some parent with just a mild stuffy nose who used the same pen as I did in the hospital could do it. This virus is everywhere, yet insurance companies are turning people down for it left and right!

My pediatrician told me about a family where both parents are deaf, and thus unable to hear their baby coughing or choking or in some kind of respiratory distress. Their baby was premature. But not premature ENOUGH to qualify them for this drug, despite the extra complications involving the parents.

Well, our little guys who were seemingly not at risk enough for prevention, managed to pick up this virus. Most likely last week when we were at the hospital. Now they are lethargic, unable to eat, and hacking up sticky yellow mucus from their lungs. We have to be in contact with our pedi on a daily basis just to make sure we don't need to take a trip to the hospital for further lung treatment or an IV drip to hydrate them. We can't let them sleep on their backs. We can't leave them alone when they sleep, since this infection has also been associated with sleep apnia.

And I have to sit here and look into their little bloodshot & watery eyes and know this could last for another 2 weeks.

And know that this could have been prevented.

Monday, January 7, 2008

I Love You . . . I Hate You

Vaccinations today for the spuds.

Poor little things don't even understand what's going on and are feeling so terrible. Whimpering in pain, hardly able to eat a thing, and running mild fevers to boot. They are so exhausted they just passed out after the doctor's visit and stayed in their car seats for a good chunk of time. I stared at them for at least a half an hour, feeling so bad for them that I could almost have cried.

Then one woke up.

And the screaming woke up his brother.

So there they were, screaming -- no, shrieking -- faces turning the color of pickled beets because they wouldn't even stop long enough to breathe. Holding them didn't help. Swaddling them didn't help. Rocking them made them scream louder. Pacifiers . . . that was just a joke, since their mouths wouldn't even close around them long enough to realize that they were there, ready to comfort them. I, on the verge of losing my mind, didn't know whether I should join them in their tantrum of tears or whether I should put them in the nursery, close the door, and put on some tunes on my new iPod. That pity and overwhelming love for them that had been there just moments earlier -- gone.

I don't know where it went, or how it could have fled so quickly, but maybe it heard the screams and headed for a safe place along with my cat.

After several minutes of screaming, Stinky fell asleep on my chest and Chubs had huge tears rolling down his cheeks. How could I be so heartless to even think about not holding them and helping them through this? They are such tiny things and so dependent on me for everything! I was overcome with the desire to protect them and provide what little comfort I could.

I looked at the clock and was relieved to discover that it was time for their dose of baby Tylenol. Stinky's went down just fine, and I stroked his head and assured him that it would help him to feel better soon. Chubs, however, didn't seem to like the grape flavor. He spit his back out all over his new bib (Italian, might I add -- one of the newest fashions from Milan). I'm sure it will forever be stained with purple spots as a reminder of his hard-headedness. Instead of wanting to stroke his pate and comfort him (as I had his brother), I felt like bopping him upside the head and yelling that he'd just ruined his last chance to feel better and it served him right, the little poop!

Needless to say, he didn't listen to reason.

Now they are asleep again, my little angels. And I am left to wonder how it is that such tiny things can provoke such big emotional shifts all in under ten minutes.

Friday, January 4, 2008

Twins, eh?

It's amazing to me how having twins makes people want to talk to me -- and how they have nothing to say. Yesterday we went to the hospital & to pediatric cardiology. We arrived early to fill out paperwork and there was a good chunk of time between our 2 different appointments, allowing ample opportunity for folks to walk by and to see my little guys, all dressed in blue, hanging out in the stroller, being fed, being changed, screaming, sleeping -- you name it, they did it. I feel now like I should have counted the number of times this exchange happened (honestly, with little or no variation). stranger: oh! twins, eh? me: yep stranger: boys or girls? me: two boys (thus the blue striped shirts, the blue booties, the blue hats, the blue blankets...) stranger: you've got your hands full! me: i sure do stranger: good luck! As much as I appreciate friendliness, warm wishes, and the like, it seems to me that people should either think of something wittier to say or just smile and walk on by. I mean, really, how many times a day do I need to be told that I've got my hands full? Don't they think that I know that already? And if my hands ARE that full, why don't you lend me one of yours instead of reminding me how difficult my life must be and walking away? Even worse are the people who have the audacity to probe deeper into the origins of my duplicitous offspring. Identical or fraternal -- now that's a reasonable question. However, I try to avoid a lesson in the genetics of twinning after I answer "identical" and someone proceeds to ask if twins run in my family (since identical twins are spontaneous). I just smile and say that there is a small pocket of twins on my mother's side. Some people go on to inquire into the number of twins on my husband's side (even if they were fraternal, what his sperm would have to do with the number of eggs I release is beyond me). The worst offenders in this category of passers-by are those who ask if my boys were "natural" or "helped out." Again, skipping the genetics of identical twinning, what business is it of anyone else's if my boys were conceived in a petrie dish or in an airplane lavatory? Does the more widespread use of fertility treatments truly give someone the right to inquire as to the method of conception used? That is a bit personal. I shudder to think of the lifetimes of questions like these my boys are going to have to endure! So the next time you think about allowing the phrase, "twins, eh?" to come from your mouth, think twice. Instead of offering up a banal comment, why not offer a smoothie or a granola bar. Chances are the mom DOES have her hands full and has missed a meal or two that day.
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