More Surgery?

Week 11

More Surgery?

So... If you read the mid-week update (here), what do you guys think we decided to do about the "next" surgery?  Drum roll, please...

We are going to watch the Munchkin for about 2 more weeks before making a decision.  There are a few reasons for this

First of all, a pulmonologist was added to the team this week.  The good - no GREAT - news is that he does not feel Alexandra has any significant pathology to overcome.  He feels she has soft cartilage lining her airways (like all newborns do)... she just can't seem keep her airway open (yet).  Here's the current thinking as to why that is... Your lungs are essentially fancy bellows, which is to say they work by causing a vacuum (an inhalation).  Your airway's cartilidge must be up to the task of withstanding the vacuum (not collapsing) created with each inhalation.  If not, your airways wlll colapse.  Any resistance to airflow (such as stomach juice in the lungs) will put more pressure on the cartilage to keep the airways open.  Due to her EA|TEF repair, she could be getting stomach juice in her lungs, which will iritate her lungs and cause increased airflow resistance.  This makes it even harder for her cartilidge to keep things open.  The ideal "prescription" for this is tincture of time.  We're also adding a special chair to her crib that will keep her chest at about a 45 degree angle, which in turn will hopefully keep stomach juices out of the lungs.

The second reason is that we met with the surgeon after meeting with the pulmonologist.  The surgeon agrees that Alexandra is not (currently) a candidate for surgery.  For those who have asked, yes, it is the Nissen fundoplication (with a G-Tube).  And for those who work in health care, you'll appreciate how hard it is to ask for a surgery when the surgeon isn't convinced (when was the last time these guys didn't want to cut something?!  No offense to my surgeon friends)

Finally (and most importantly), we were not ready to commit to the procedure.  There are tons of stories about how the surgery really helped a kid, but the reality is that there is no clear evidence she would benefit from the surgery.  At least right now there isn't.  We know we might end up going with it one day, but that day has not yet dawned.

Some of the positive stuff

Some good things about the NICU experience Not everything in the NICU has been nightmarish.  Babies still do things that entertain even the weeriest of their fans.  Friends, families, and coworkers are still every bit as interested in the new human.  Here are a few random examples:

• Graduating from an isollete (plastic incubator-like thing) to an open crib
• Seeing your super-skinny kid get fat rolls
• Finding out there are worse variations of your kid's problems, but knowing she doesn't have it
• Having your kid pick your face or voice out of a crowd at a young (YOUNG) age
• Finding out that a really good nurse switched her assignment to watch your kid
• Meeting a nurse for the first time and hearing them say they've visited your kid before because they heard she was so darn cute
• Seeing clinicians who are not assigned to your kid that day come by just to check on her
• Holding your kid if only for a minute while the crib is being fixed
• Knowing your kid has 24-hour professional supervision, even when you're not there
• The hospital supplies nursing moms with some pretty good food (all you have to do is call the cafeteria!)
• Certain nurses and respiratory therapists - just because of the way they truely care for your kid 
• A certain pharmacist and a certain physician who also go way above and beyond for her

And last but certainly not least:

• Finding out just how many people have a genuine interest in your kid.  So far people in 6 countries have checked this blog!  Thanks to all of you!!!

The really last thing...

• Knowing that she will one day be home...

Remember, here's a link to EA|TEF information.  Read up!


Again, thanks for dropping by and checking on Alexandra.

Finally, here's a picture from this week (click on it to see it bigger).  This was taken today while she took a little siesta...