From Micro-Preemie to Miracle: September 2011

Dear Family and Friends,

I recently came across a program sponsored by a not-for-profit organization that aims at helping children with chronic medical conditions express their experience through art. I, of course, jumped at the opportunity of providing Everett with something beautiful that represents all the challenges he has been through in his short life. This wonderful program is called Beads of Courage, and per their own mission statement, they are an “organization dedicated to helping children with serious illness record, tell and own their stories of survival.”

In its beginnings, Beads of Courage was geared toward helping children with blood disorders and cancers, cardiac conditions, and burn injuries document their hospitalizations and treatments. Then just last year, they added a NICU component. Of course, for the NICU children, it is their parents assembling the art rather than the children, but I still feel as if it is serving an important healing role for baby and parent alike. The program works like this: for a participating NICU, each baby is given a tally sheet that has all the various NICU treatments listed. As a nurse or parent does one of these treatments, a tally mark goes on the sheet. For each tally, a corresponding colorful glass bead is earned by the baby, which eventually becomes a brightly colored necklace complete with the baby’s name in beads on it. Each bead tells of a treatment milestone and for a hospital that participates, the tally sheet would be accurate (amazing!) For Everett, neither SV or CHLA participates in Beads of Courage (something I plan on changing very soon, by the way), so I had to estimate how many treatment milestones Everett has earned. I did this by looking back through his updates and the pictures we took while he was hospitalized. In the end, the tally numbers were overwhelming. We always knew our little man as strong, but with perspective like this, it takes on a whole new meaning.

Everett’s milestones during his 157 day hospitalization (not including treatment milestones since he has been home)…

© 6 parental education, which include Everett being the youngest patient at CHLA to receive a caudal block, me learning to breastfeed and pump, Zac becoming infant CPR certified, learning how to care for Everett’s ileostomy, learning to give Everett’s home medications, and learning how to mix Everett’s milk (believe it or not, that was the most complicated one!)

© 9 parental “firsts,” which include me holding Everett for the first time at 14 days old, Zac holding him at 31 days old, his first bath, his first haircut (shaving his head), changing the ileostomy bag unassisted, his first poopy diaper, each of us feeding him, and reading him his first book

And those accomplishments most dear to our hearts include

four Acts of Courage and eight Special Recognition.

Our Acts of Courage include: leaving Everett for the first time at CHLA, our beloved nurse Sarah basically forcing the doctors to extubate him after his first surgery, Zac spending Christmas day by himself at the Ronald McDonald house at CHLA so Everett wouldn’t be alone on his first Christmas, and me telling the doctors that if they didn’t perform his second bowel surgery, I was going to find a doctor somewhere else who would. If not for each of these Acts of Courage, our Everett wouldn’t be here!

As for our Special Recognition, we have one for Dr. G, who thanks to her cutting edge research in bowel disorders, knew just what to do with our sick little boy, one for our beloved nurse Sarah, because of the friendship we still carry with her today, and five for Pastor Vince Llamas, who drove down to CHLA on five separate occasions to pray at Everett’s bedside (we know that it is because of the power of prayer that our Everett lives today), and one for our families who supported us through each step of our long journey. We love each of these people dearly and will never forget the kindnesses that they have bestowed upon our family!

So what does all this add up to? A 17 foot long necklace of over 670 beads!!! While we realize that Everett can’t wear it (heck, yesterday he was trying to eat it!), I do imagine him taking it to Show-and-Tell someday. That was my main idea in signing up for the program…helping Everett quantify his courage.

Everett's Beads of Courage

Everett playing with the necklace...more like attempting to choke himself with it...gotta love a toddler!

As you can tell from the picture, our little courageous man is getting SO BIG! “So big” is actually a word phrase that his therapist and I are trying to get him to say, so I’m smiling as I type this :-) Everett has been growing like a weed these past months and is now measuring 31.5 inches tall. Last month alone he grew over two inches…yes TWO inches! According to our scale at home, he weighs 22 lbs, but we will get his actual weight when we take him for his two year well baby visit next month. Everett has definitely become a toddler boy...all rough and tumble, all the time! These past few weeks have been especially challenging with lots of tantrums and fussiness, but we are always thankful for “normal” toddler behavior out of our micropreemie boy.

Everett is not only walking steadily now, but is on the verge of running, can get one foot off the ground when attempting to jump, can walk up and down stairs with a one hand assist, and is even feeding himself with spoon and fork! WOW!!! As for language, we’ve seen an explosion in that department just this past week (which should help with the tantrums and fussiness). His vocabulary now includes: “Mama, Dada, dog, ball, up, open, NO (said with stern stare), hi, bye, more, baba, and please. His signs (his therapist has been working on sign language) include: help, eat, more, yes, no, and thank you.

His personality is changing by the day as he gains new-found independence. He is fearless…absolutely FEARLESS, he wants to be independent but still asks for help, he is sweet and submissive, thinks that his smile can get him out of “Timeout,” thinks splashing Mama during bath time is HILARIOUS, loves to ride the dog like a pony, screams Dada when he hears Zac’s truck, constantly needs music on so he can spontaneously dance, wants to read Goodnight Moon at least five times a day, colors with crayons (sometimes on the walls) and is sleeping in until 9am (my personal favorite trait right now!) These are just a few of the hundreds of qualities that we find endearing in our toddler boy. Oh and did I mention that he gives kisses…big, open mouth, drooly, tongue kisses?! How precious is that! All in all, he’s growing up.

With his second birthday now only three weeks away, we can hardly believe it’s true, our little boy is turning two :-)

With Love,

The Bollinger Family