Walk On...

Dear Friends and Family,

I’ve been remise in updating these days.  I suppose that is the sign that we now have a toddler in the house.  What little time I had before is now filled with moments of saying “no” and attempts to keep this very, very active child from maiming himself.  Ah, the joys of parenting!  Looking back, I really do wonder what filled my days when all he did was sleep?

Zac and I woke up one weekend morning a few weeks ago to find that the baby we had put to bed had been replaced by a toddler boy…yes, it happened just that quickly, and we’ve been struggling to keep up ever since.  Everett decided on Easter Sunday to start walking (officially).  He had been toddling around for a few weeks before but was only taking a step here and there.  But when we put him on the floor Easter morning, he stood right up and walked across the room, as if he’d always known how and just was choosing not to.  Now, he’s not only walking but CLIMBING too!  That accomplishment has to be credited to Kate, his physical therapist, who likes to encourage his climbing because it strengthens his somewhat weak arms.  He now stacks books to climb and grab at stuff he can’t reach otherwise, i.e. dishes on the kitchen table, lamps in the living room, water glasses in our bedroom…he’s very mischievous like that.  I’ve already had to replace our outlet covers with a different brand because he removed all of the original ones.  He is methodical and observant.  More and more I can see so many traits of Zac coming through.  Heck, I’ve watched him flip his ride-on car upside down and attempt to take all its gears out!  Like father, like son. 

At his last well check appointment, he measured at 19 lbs 12 oz and was 28 ¾ inches long.  As for that darn growth curve…he’s not on it and it is looking like it is going to be some time before he is especially with how active he has become.  But his pediatrician (who we ADORE) adjusts his age back six months instead of the 3.5 months that he was actually premature.  His argument is that Everett’s growth during his first six months of life was never “quality growth.”  It was always augmented by artificial nutrition and fortifiers, and Everett came home extremely malnourished.  So he starts Everett’s corrected age from his arrival home date, which makes perfect sense to me.  Now, if we plot his growth back six months (to a 13-month-old) he is right in the 50^th percentile.  I guess Zac and I will take what numbers we can get :-)  

As for development, he is doing so well!  His therapists confess that they never expected him to be accomplishing all the things that he is!  As an example, he started walking at 18 months, which is on the far end of normal, even for a term baby!!!  He is now eating all textures and foods, except lima beans (but who really can blame him there), is babbling ALL the time, and the “Terrible Twos” have even started up with some temper tantrums.  Our only remaining concerns at this time are a weak left arm and leg.  Just this week, our physical therapists kicked us off half of our services.  She is now only going to see us every other week, instead of every week.  And when I say “kicked off,” I kinda mean it because she had to “sell” me on the idea.  But she feels that now that Everett is walking, the things she can do with/for him are very limited…at least limited enough to only warrant two visits a month.  As she was buttering me up to agree, she said so much of his success is because Zac and I really work on the exercises she shows us.  She can tell that we do a lot of activities at home.  She feels confident that we can take that ball from here and she will check in twice a month to make sure he is still progressing as he should.  It is funny how in the beginning, I found all Everett’s appointments to be daunting, then I got accustomed to having these women with all this experience and advice right at my finger tips, and now that our time together is slowly coming to an end…I’m getting all nervous about losing my resources!!!  But it is also a positive sign that our Everett is growing up healthy :-)

As for family life at the Bollinger home, I am FINALLY working part-time.  I think Zac would say that this is a very, very good thing for everyone.  I’m actually sane again!  I work two days per week, still on nights, and those wonderful women that I mentioned in the previous update, watch Everett while I’m sleeping.  It is the perfect balance between baby time, grown up time, family time, and utilization of all that knowledge that I learned in nursing school.  We are very happy.  In March, we celebrated Everett’s 365^th day at home.  Again, more like his birthday to us that his actual emergence into the world, we celebrated with family and cake.  And this time, Everett destroyed that cake!  He ate it, flipped it, and ultimately threw it on the floor.  It was awesome!!!  Last month we made another trip to LA, for fun this time, and visited Sarah, our much-beloved nurse from CHLA.  We went to meet her new baby girl, Brooklyn.  She was adorable and Everett still loves and remembers Sarah as much as ever.  Her friendship will certainly last our lifetime (we joke that the babies will get married someday). 

Not too long ago, I read a quote on another mom’s blog that included a post about the loss of a baby diagnosed with the same condition as her son.   She said, “Happiness and sorrow are two sides of the same coin.”  This email, I’m afraid, includes just such sentiment.  As I write all the amazing and wonderful things that our Everett is doing, my heart is ever more appreciative for his life.  The reason: a dear friend of mine, who I met through the SV NICU, lost her micropreemie daughter, Juliet, just two weeks ago.  She was eight months old and never made it home.  I don’t think I ever relayed the statistics of survival for a 25 week preemie (Juliet and Everett were identical in gestation).  In fact, I know I never did because I myself never wanted to think of them.  On the day of Everett’s birth, these numbers were thrown in our faces and we always made an effort to keep them out of our minds.  Everett’s original chances for survival were 20%.  Yes, just 20%.  And with that 20% came the caveat of an even smaller chance for normalcy.  That 20% was clouded by a long list of probable chronic complications that include brain damage, blindness, developmental delays, oral aversion, Cerebral Palsy (just to name a few).  Scary numbers and even scarier stuff!  By God’s graces, Everett ended up in that 20%.  Zac and I have been naïve, thinking that all mircopreemies end up there…that all micropreemies end up surviving.  But this is not the case.  I’ve also come to realize that of those that do survive, an overwhelming majority do have major lifelong complications.  My point in bringing all this up is to really reiterate what a miracle Everett is.  I know that we ALL already know this…but with the passing of Juliet…now we really, really feel as if God gave us an amazing gift and that our Everett certainly has a specific purpose on this Earth.  For those of you with your babies still at home, hug them a little tighter, kiss them a little more often…because not all parents get to bring their babies home!  If we were grateful before, we are certainly even more grateful now.  And we pray daily for our friends during this hard, hard time.

In an effort to reach out to parents of other micropreemies, I’ve started a blog (I know, everyone has one these days).  It includes all of Everett’s updates and pictures.  My hope is that just one other set of micropreemie parents read it and get hope from it.  I’ve always tried to be honest and open about the road that we have traveled…I’ve tried to show a little glimpse of the reality, and I hope that it may someday help another family to feel understood.  The address is http://micropreemietomiracle.blogspot.com/  Please feel free to send it on to friends and family.  Like I said, if it helps just one person, then I will be happy :-)

I will never tire of people asking how Everett is doing or people telling me what an amazing gift it is to get to watch him grow up!  We thank you all for loving our family!  And we love you all right back!!!

With Love,

The Bollinger Family