Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Saturday, December 12, 2009

The Tree(s) of Life

Inquiring minds want to know "why does Eliza cough so much and have such frequent respiratory problems?" Well, maybe not all inquiring minds want to know, but based upon my last 30 emails and a few calls, at least a few people want to know.

Eliza missed that period of development known as "the last trimester." This trimester may not seem so meaningful to those of you who had one, but there is a ton of stuff that goes on in those last few months of gestation. The lungs in particular are very underdeveloped (or "crappy" in medical terms) until pretty close to the 38 to 40 week benchmark that we all aim for. (Note to those of you who are "bored" with being pregnant that last month, you may want to rethink that early delivery).

Here are some handy diagrams of lung development (although I am reasonably sure no lungs are this particular shade of magenta):

When you are born in that highlighted section (24 to 35 weeks) you often need one of these to breathe for you:

While this dandy machine (a ventilator) can breathe for you, in doing so it tends to damage and destroy the little lung tissue your tiny 25 week lungs had to begin with. Kind of a double-edged sword, but my vote goes with the ventilator, since the other option is, well... you can see where that would lead.

After the ventilator, the usual progress is to wean to CPAP:

Yes, Eliza looks like she might be going scuba diving any minute.

After CPAP you try to wean the baby to a nasal cannula:

This progression is all well and good, but you are still stuck with "Crappy Lung Syndrome." OK so I made that name up, but it is just as good as the real name: Chronic Lung Disease. CLS, as I call it, means you spend a lot of time using one of these to administer medications to help you and your crappy lungs breathe.

If you are familiar with Eliza, you know she would never sit like the lovely girl in the photo, so instead we resort to one of these methods for delivering her medications:

The Ionic (a/k/a silent) nebulizer:

Or the Aerochamber:

By all accounts, medical and anecdotal, one can grow out of CLS by the time one is middle childhood (say 7 to 12 years old). Ridding the body of Crappy Lung Syndrome is a process, kind of a long process in some cases. With each new lung infection, or bout of bronchiolitis, the new lung tissue is assaulted and damaged. The idea is to keep the new tissue as healthy as you can until the new, healthy lung tissue proportionately out numbers the crappy lung tissue. So if I ask you to stay away when you are sick, or not bring your sick child over to visit, it really isn't anything personal.

And that folks is today's layman's lesson in Pediatric Pulmonology.

And the P.S. to today's lesson: As of January 1, 2010 United HealthCare Oxford will no long cover the medication that Eliza uses in her Aerochamber and nebulizer. These people really need to spend some time in the NICU and PICU before they make these decisions.


therextras said...

That was really well said.

And the stopping of coverage - outrageous!

What do you do?


Sarah said...

How can they not cover her breathing treatments? What are you using? I've got some extra flovent and combivent.

Anne, Eliza Grace's mom said...

They say they will cover plain old albuterol, which of course makes Eliza jittery, even more sleepless, etc. so not the best alternative. It appears there are ways around this latest crap, but it means more letters from her doctors, more letters from me, more hours on the phone with some clerk who is useless.... Oy.

SpeasHill said...

Thanks for the lesson. We have so far - and miraculously, it seems! - escaped CLS...but I'm still watching for it to rear its ugly head once Becca actually enters the public realm. I can't believe they are cutting off the meds. Becca's about to lose her TennCare (medicaid) because we make too much money, even though she is still disabled, so we're fighting that battle, too. It seems it never ends!

Anne, Eliza Grace's mom said...

Proventil is still on the list, but it is a tier three with a $50 co-pay, same as xopenex. I figure the next letter will end coverage for that one too.

Natalie and Abigail said...

God - you are so funny. I love the little pictures you find.

I also have to add this - the secret word I had to type to post...ponspoo - I don't know - that's just funny.

April DeJesus said...

I linked to your sight through Sarah's site, "Little Elizabeth Grace". I wanted to say that you did a great job explaining all the various lung issues that comes with being a preemie. My daughter wasn't as early as yours, but even at 35 weeks still needed a ventilator, CPAP, and nasal cannula. It still amazes me how many people don't understand the effect these treatments have on a little one's lungs. Well said and thanks for the post!

Angelina said...

Thank you so much for posting this! I could not BELIEVE the way the media was treating the birth of Josie Duggar, especially after the article that the NYT did on premature birth. You are on all counts. While there is a slim possibility that the kid will turn out perfectly "fine," those of us with NICU experience know that that possibility is closer to fantasy than reality. Thank you again.