Tuesday, March 25, 2008

Now what?

I get that question a lot. "Now what will happen to Luna?" Well, from here she has two more surgeries: one between 6-12 months of life, and one between ages 2 and 3. The second surgery, which will for Luna be either late fall or winter, is called the Glen. During the Glen the surgeons will replace the shunt implanted during her first surgery with a bigger shunt, hopefully one that will grow with her through out life. Because babies are so tiny at birth-the first operation is considered a temporary fix. Almost all babies with similar heart conditions, Luna included, have a temporary shunt implaced-and the size of the shunt is almost always-and again in Luna's case as well, 3.5 mm. Yep, that tiny. I haven't taken a look at a ruler, but Paul assures me it's teeny.

Another common question I hear is: "will they move Luna's heart so it's in the right spot?" Egad-No! Medical science is amazing, but I would imagine that would be near impossible-but not only that, it's unnecessary. Dextrocardia, the name for Luna's condition that refers to the heart being a mirror image situated on the right side, is a benign condition. Unless it's paired with another condition called Dextrocardia Situs Inversus Totalis, where all the organs are flipped, dextrocardia in it's own right comes with no health risks. Sometimes, if dextro is undiagnosed, which is completely possible- and I bet there are a lot more of ya walking around with your heart on the right and you don't even know it!-it can be life threatening if one with the condition goes in for surgery for these reasons:
ECG leads must be placed in reversed positions on a person with Dextrocardia. In addition, when defibrillating someone with dextrocardia, the pads should be placed in reverse positions. That is, instead of upper right and lower left, pads should be placed upper left and lower right.

For now, caring for Luna is easy-she's exactly like any other newborn...she mostly sleeps, eats and poops! The only maintenance we have is twice a day, once at 8am and once at 8pm, Paul and I give her three meds. In the morning she gets half a baby aspirin-which for now is the only med we know she'll be on for life. In addition she takes Zantac-yep, the heartburn medicine. This is because after surgery, as I can attest to as well, the digestive tract slows considerably giving you terrible gas and heart burn. The final med is Lasix-this is a diuretic which is meant to pull the excess water from her lungs and blood vessels. The idea is to draw-out the excess weight off the blood cells so when it funnels through her heart, she doesn't have to work as much. Heart babies and adults literally burn lots of calories just sleeping and eating-how lucky are they??-with the help of Lasix they don't have to work quite as hard to pump blood.

So, that's a short lesson in the daily care for the Luna Bean. Easy, huh? Now we're off for our first appointment with the pediatrician...will report later with her check-up!

The visiting nurse getting Luna's weight which when this was taken last week was at 7.2lb

This photo shows the blood saturation and heart rate monitor. Twice a day we apply a sensor to her tiny foot so we can get a read on her 'sats'. Most of us have blood saturations in the high 90's. Little Luna is at the mid-80's-which is exactly where she should be post surgery. Not until the final surgery will we see her sats in the 90's.

Luna's night-time meds.

Sienna changing Froggie's and Elephant's diapers.

Sienna loves her sister. Today she asked if she could stay home with Mommy and baby Luna. (As soon as Mommy can lift you!)


Darins Mom said...

Thank you for sharing her story - she is absolutely amazing! I look forward to your updates. I feel like I'm going through it with you.

I hope you are finding therapy in your journaling ~


Ann (FF board)

Suzanne said...

Such beautiful little girls! Glad to see Luna's finally here. I 'know' you from Family Finances -- I'm down in Mass on the North Shore. So close!

No name said...

I've been keeping up to date on Luna's progress and Sienna's reactions to having her little sister at home. Sounds like all is going quite well.

You guys rock!

Love from Marblehead!

Janelle said...

Sienna's such a good sister!