Friday, June 10, 2011

Edward at Home

Here's the latest video of the little man - he is 8 lbs 10 ounces!

Sunday, June 5, 2011


When we were discharged from the NICU, we were offered many differing opinions on how to acclimate Edward to our lives at home and how to keep him safe from….. you guessed it…. germs!  Basically, because of Edward’s prematurity he is more susceptible and less able to fight off infections.  Because Edward was born so early, so little, and required the ventilator to breathe, he has chronic lung disease.  Chronic lung disease basically means that his lungs have some scarring and damaged tissue.  His lungs should be healing a little bit every day, but it takes time for the new healthy lung tissue to outgrow the damaged lung tissue.  The doctors and nurse practitioners were very frank with us: a small, common infection could land us right back in the hospital - especially because of his chronic lung disease, upper respiratory infections can wreak havoc on his body.  At the same time, the doctors and nurses told us that we still can not prevent him from ever getting sick, and we certainly should not try to create some sort of boy in a bubble complex.

One thing that was reiterated was that Edward was coming home at the best possible time, after flu season.  They told us, get out of the house!  Go on walks with him, go to dinner and sit outside, do things with him.  Don’t keep him in the house!”  So we pressed the doctors with more questions.  We asked about people touching and holding him, we asked about family events and large parties.  Again, we heard differing opinions, but we also heard a few commonalities:  he is not a baby that should be passed around (just yet!).  He should not be held and kissed on by every person we see, every relative who wants to hold him, and every weird stranger who glances at him in the stroller.  Bummer! Because don’t you just want to kiss and pinch his chubby little cheeks?

Another thing we heard was, hand washing, hand washing, hand washing.   It will be no different than the NICU, I am afraid, but honestly hand washing is a simple thing to do in our eyes to keep him safe.  We wash our own hands all day long at our OWN house.  In fact, we have a giant bottle of Purell on our living room table, one bottle in the kitchen, and one bottle on his changing table (not to mention we have about 10 travel size bottles in the diaper bag).  I, like a new overly panicked mom, also bought a little sign for his stroller, that basically says, “Don’t touch me with your dirty hands!”  Haha, well, it doesn’t exactly say that, but, pretty close.  Michael rolled his eyes and teased me a little bit when I ordered this thing online, but it will help keep strangers from touching him.  The sign will hopefully prevent people from touching his little fingers.  I know many people do not mean it, but touching a baby’s fingers is not exactly the best thing to do, especially since Edward has found his hands, and likes to shove his hands in his mouth when he is hungry. So yes, you too can roll your eyes at me and this silly sign that will be on his stroller, but it makes me feel better! 

Still, the spectrum of recommendations continued.  “No church or grocery stores for a year,” some nurses/ doctors would say.  And other physicians stated, “That’s ridiculous.”  We heard, “Absolutely no daycare,” and then in the same breath, “Well if you have to go back to work, you have to go back to work.”  And so we listened and listened and still had to ask ourselves what to think?  What to believe? What to really consider?

In light of all of the advice, we still have to make our own decisions and feel comfortable about our choices.  Our first major decision was that I should stay home with Eddie for a while. Since it has been officially approved, I can now say that I will be taking a leave of absence from teaching next school year.  I am so grateful to be able to do this and hopefully, this will allow Edward the extra time that he needs to grow bigger and stronger.  I will have busy days ahead of feeding him, doing physical therapy with him, and taking him to many doctor appointments. We are so grateful for all of the love and support that we received from all of my coworkers at Mary Carr Greer Elementary School. Eddie might be a hungry caterpillar, but he is also a Greer Gecko!   I will definitely miss my 5th graders and my friends, but Eddie’s health and well-being is our top priority. Avoiding daycare germs during his first year seemed liked an easy decision.

Another thing that we decided is that we might have visitors over from time to time, but mostly we would rather meet people outside, like on walks, or out to dinner.  We will take advantage of the great weather and enjoy as many open-air activities as possible.  We need to get out of the house now, because the fall and winter months will bring about his first dreaded flu season.  He will be especially at risk for RSV.  He should qualify for the vaccination this fall, but I imagine we will be spending more time in the house during the fall/winter. This just means Edward will have more time to watch Notre Dame football with us!

And lastly, hand washing.  Don’t be offended if you do come to visit us, either at the house or outside somewhere, and we shove some Purell in your face.  It’s not that we think you’re a dirty person, but hey, you might be!  Just kidding.  We are just trying to minimize the chance of infection for Edward.  We know that Edward will eventually get sick, but we are going to try our best to keep him healthy this first year as he develops into a big strong boy!   We love, love, love all of the UVA doctors, nurse practitioners, and nurses who cared for Edward, but believe me, we do not want to go back to the hospital ANY time soon!

Eddie has healed from the last surgery and he is keeping down his food… thank goodness!  He is now consistently drinking 2 -3 ounces every feeding!  We will see his pediatrician for another weight check on Thursday, but his last weight was 8 lbs 8 oz!  We also saw the opthamologist this past week and both of his eyes look wonderful.  His laser eye surgery was a success and the retinopathy has totally resolved.  The eye doctor was so happy, that we don’t have to see him again until September.  At that next appointment we will determine how nearsighted Edward might be, and talk about the possibility of glasses, but we will cross that bridge when we get there.