You will have significant experiences.
I hope that you will write them down and keep a record of
them, that you will read them from time to time and refresh
your memory of these meaningful and significant things.
Some may be funny. Some may be significant only to you.
Some of them may be sacred and quietly beautiful. Some
may build upon another until they represent a lifetime of
special experiences.
- Gordon B Hinckley

Thursday, November 17, 2011

World Prematurity Day...(Everett is 25 months old)

Dear Family and Friends,

Happy World Prematurity Day! I know, a weird thing to celebrate but the March of Dimes has launched a campaign during November (Prematurity Awareness Month) to focus attention on the serious problem of premature birth. And today, they are honoring the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. So I thought I'd add a little personal face to World Prematurity Day and send out an update about our preemie :-) If you're interested in finding out more about the campaign, here is the website.

http://www.marchofdimes.com/mission/prematurity.html

On Everett's second birthday all the adjusting for his size and development stopped (pretty mean if you ask me). For the first time, he was compared against typical two year olds. The rule with preemies, even micro-preemies, is that they are supposed to be caught up by age two. It doesn't matter how sick they were, how long they spent in the hospital...at two all the special considerations end. I know from watching Everett around other two years olds, that in size and some areas of development, he still isn't quite caught up to his peers. And that's ok...he makes progress every day and that is what is really important! But with his well checks and therapy assessments, I always feel a certain amount of anxiety. I'm constantly trying to stop myself from comparing Everett to other kids. I'm always trying to emphasize that he is uniquely perfect. Assessment time tends to derail my "inner mantra" and instead allows the dark thoughts to creep in. Thoughts that wonder if there will ever come a time when Everett stops progressing or if someday, some type of permanent delay will make itself apparent. With the loss of the "corrected age adjustment," I wasn't looking forward to Everett's two year assessments. More like dreading to the honest...but I'm very happy to report that our little man continues to amaze.

Did someone ask about those growth charts??? Well, let me tell you, Everett has a percentile!!! In fact, Everett has TWO percentiles!!! He is measuring in the 25th percentile for height (at 32 inches tall) and the 10th percentile for weight (at 22.5 pounds)...all uncorrected! Woohoo!!! Little man is getting big :-)

In the areas of development, Everett is equally amazing. He was assessed just before his birthday by his child development specialist and his physical therapist. In the areas of cognition (thinking), social and emotional development, and receptive language, Everett ranked at his actual age of 24 months!!! He actually ranked even older in social and emotional at 27 months, but I won't bore you by bragging :-) In the areas of fine and gross motor and expressive language, he ranked at about 19 months (not too bad). His lower score in this area is because he still has the walking pattern of a newer walker; meaning he guards a lot with his upper body and arms. And he still falls a fair amount. But he's doing it and only time (and the addition of glasses) will help this. His language continues to improve everyday and it seems that even in the past few weeks he is getting a new word almost daily. This has helped tremendously with his tantrums. He can pretty much communicate what he needs and wants. THANK GOODNESS!! In the areas of feeding, toileting, and dressing/hygiene, he ranked at 19-23 months. We've decided to begin potty training and so far...well, it's not going very well. But I haven't been pushing the issue that hard either. I'm perfectly content to change diapers a little longer if it means less laundry from accidents. I'm sure when I get motivated, Everett will rise to the challenge. So all in all, a great report! We continue to be so thankful that we are the exception to the rule. We are constantly reminded by doctors and therapists alike that Everett successes are not common for a micro preemie of his size, gestation and history. We give praise to God for his blessings in our little man's abilities!!!

We took Everett to see an eye doctor for a regular checkup a few months ago and were told that he has a "severe astigmatism." She, not being a pediatric specialist, didn't quite know what to recommend so we got a referral for another doctor who examined Everett and recommended glasses right away. We can't totally blame this on his prematurity, as I have been in glasses since I was five. There are genetics at play here...but I must confess that I am a little bummed for our little man. I know how it is to wake up and not be able to see. I know how it is to be the only kid in glasses. Let's be honest, the way people perceive and treat you changes. So I'm having a little pity party, but it will pass. We picked out a pair of somewhat cute frames (there isn't a whole lot to choose from in the all plastic, bite proof, squash proof, scratch proof, strap on variety). They come next week. I had hoped that the doctor would tell us we could wait until age three to put him in glasses but she said his condition is so severe that it could actually affect his brain development. He's to wear them full time, even during naps if he can keep them on. We shall see...wish us luck!!! The next item of business will be a hearing exam. While Everett seems to be able to hear just fine, we want to verify that his delay in language isn't hearing related. He passed his initial hearing exams at CHLA but continues to be at risk for hearing loss (specifically high frequency hearing loss) due to the plethora of antibiotics he received early in life. Wish us luck there too!!!


We are always thankful for the support from our family and friends. I really never tire of hearing what an inspiration Everett is or how much people have enjoyed watching him grow. We are thankful for a God who listens to prayer and provides us with what we need. Today, and every day, we are thankful that we don't have to walk through life alone and that our little boy has a life to live. Happy Thanksgiving from our family to yours!

Love,

The Bollinger Family


It will never cease to amaze me...

  
that this...

...became this!!!

Thank you March of Dimes!

Monday, October 10, 2011

Everett Turns Two!!!

Now & Then

A letter to my son on his second birthday...

My Dearest Everett,

As I rocked you to sleep tonight, on the eve of your second birthday, I couldn’t help but remember the first time I held you and how much has changed since then.  The first time I held you, your head fit perfectly in the space between my chin and chest.  As I held you tonight, we rocked cheek-to-cheek, as you are now so big that you barely fit on my lap.  In that moment, in the dark quiet of your room, I shed one tear…one tear for everything that could have been, and isn’t…one tear for everything that you are and for all the love that I have for you.

In this year, you have blossomed.  If Daddy and I had any lingering fears about your capacities or capabilities, you have certainly blown those concerns out of the water!!!  At one year old, you were just sitting up and rolling was your mode of transportation.  Now, at two, you are walking, running and climbing your way through life.  You never sit still…NEVER!  As if you are making up for those six months of lying in a hospital bed, your curiosity keeps you constantly moving.  We are exhausted from chasing you.  But we wouldn’t have it any other way!

Your first word was “Dada,” much to my dismay.  But it was shortly followed by “Mama” and a handful of other words.  Now your regular vocabulary includes 20+ words, with new ones debuting each day.  You are a quiet child…when it comes to speaking, anyway.  You save your words until you feel comfortable and new words are said at a whisper.  However, you LOVE to scream…just having discovered the modulation of your voice.  Unfortunately, this means restaurants are no longer a possibility so it is lots of home cooked meals for our family.  You feed yourself now.  You are one messy eater, a trait Daddy says you get from me.  You tend to shovel food into your mouth rather than intentionally place it there.   And you are just getting the hang of drinking from a cup. 

You do not shy away from strangers.  In fact, you are quite the flirt.  Upon meeting new people you are all smiles and giggles.  You freely give kisses and hugs.  Jack may be your favorite toy :-)  You are fascinated with children who are older than you.  You watch them with great intent and then try to imitate their mannerisms.  You want so badly to be so grown up.  You don’t understand that there are things that you cannot do just yet (like walk down stairs).  You are fearless. 

Out of that fearlessness comes frustration for the things that you cannot do.  Tantrums are commonplace in our house now.  These past few months have been challenging.  You understand so much more than you can communicate, and I think that upsets you.  You still listen (most of the time) when we tell you “no.”  When you don’t, I try to discipline you but find it hard because you often try to smile and kiss your way out of trouble.  More times than I’d like to admit…it works.  When you get an idea in your head, you pretty much stick with it until completion.  You are tenacious…not that we would have expected you to be any other way.  Your tenacity is what has kept you alive and allowed you to thrive. 

We have never taken one day of your life for granted.  Nor have we ever taken for granted all the things that you are able to do.  We give thanks to God everyday for you, your life, and everything that you are because your life could be so much different…so much harder.  We are thankful for the things that are, but we are also thankful for the things that are not.  Your birthday is always an emotional time.  I wonder when that will change but somehow I already know that it never will.  The day of your birth was the beginning of my love for you.  Every day since, I find another reason to love you even more.  Happy 2nd Birthday to our precious boy.

Love,

Mama and Daddy

One Year Old

Two Years Old

Friday, September 16, 2011

Quantifying Everett's Courage (Everett is 23 months old)...

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)…



©       2 admissions

©       7 central/PICC lines

©       5 developmental clinic visits

©       19 weeks on TPN

©       3 cranial ultrasounds/ 3 ECHOS

©       1 ambulance ride/ 1 helicopter ride

©       2 rounds of surfactant therapy

©       5 major feeding transitions

©       3 surgeries

©       5 days on blood pressure support/ 4 days with caudal block

©       157 nights away from home

©       10 days in isolation

©       41 IV starts/ 142 blood draws

©       5 lumbar punctures

©       38 Chest Xrays/ 3 Upper GI/ 1 Lower GI

©       23 blood transfusions

©       23 NG(feeding) tubes/ 4 repogles (feeding tube to suction)/ 1 Foley catheter

©       66 days of intubation (with 7 separate intubations)

©       21 invasive eye exams/ 1 hearing exam

©       12 physical therapy visits/ 41 occupational therapy visits

©       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

©       1 discharge

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 

First Beach Day

Elephants at the zoo...E was not as impressed as we were

Checking out the birds at the barn

Everett is almost TWO!

Thursday, July 14, 2011

This Ones for Mama and Dada...(Everett is 21 Months Old)

Dear Family and Friends,
This Sunday will mark seven years since Zac and I walked down “the aisle” and started our lives as husband and wife.  Many of you were there and are probably shaking your heads in disbelief, thinking “That couldn’t have been SEVEN years ago?!”   But it is true…and to us it still feels like yesterday.  Our wedding was one heck of a party (I’m biased, of course, but I think fun was had by all).  We were married at 4 o’clock in the afternoon, underneath the shade of large sycamore trees in the most beautiful English garden you’ve ever seen.  It was one of the hottest days that summer and in our wedding video, Zac is stealthily wiping his brow while everyone has their heads bowed in prayer :-) The thing I remember most is the overwhelming feeling of happiness…so much so that when Pastor Vince pronounced us as husband and wife, I practically jumped into Zac’s arms.  It truly was the best day!



The thing about weddings is that they are such a hopeful event; hope for the future, hope in the existence of true love, hope in growing old with someone and sharing a lifetime of memories.  That is what I love the most about weddings…I let that emotion wash over me at every wedding I go to, and it never gets old.  But after the wedding comes married life and reality.  Putting those vows into everyday actions…that’s the hard part.  For Zac and I, the past two years have been about making good on the promises we made to each other seven years ago.  And I’d like to take this opportunity to “toot our own horn” about making it through with marriage intact :-)


The statistics for a marriage surviving a high-stress, catastrophic event (such as Everett’s first year of life) is about 25 percent.  I learned that stat in nursing school and it was constantly on my mind especially immediately after Everett was born.  Pastor Vince came to visit us the morning after Everett arrived and I can remember bursting into tears when he walked in, confessing that I was so scared of not only losing my son, but also my husband.   I knew that this could rip our marriage apart.  I knew that this could be an unrecoverable event.  So from the beginning, we took great care to take great care of each other. 


Our very first photo together

High School Graduation
“For better, for worse, for richer, for poorer, in sickness and in health.”  Powerful words.  Big commitment.  Zac and I started dating when we were 15 years old.  Yup, high school sweethearts.  We’ve now been together longer than we’ve been apart.  Being high school sweethearts is more of a rarity these days and people are always asking us how we’ve made it work.  I usually answer that we are a great team, what each of us lacks, the other makes up and we’ve grown in the same direction.  But getting back to those vows…respecting the vows and living up to them…that’s how we’ve really made it work.  Our journey with Everett put each one of those vows to the test and amplified their meaning by a thousand.  We worked really, really, really hard to fulfill each other’s expectations and I think we’d both say that we have succeeded. 


Senior Prom
Magic Mountain
It is easy to let your spouse see you at your best, but I will tell you that having a baby in the hospital for six months will quickly put you at your worst for days and days on end.  For me that came in the form of lots and lots of meltdowns, of crying for hours telling Zac that I just couldn’t do it anymore, that my heart was so tired of hurting.  I could swing from laughter, to tears, to yelling in 45 seconds flat…talk about living with Dr. Jekyll and Mr. Hyde!  Through it all, Zac allowed me to cry, he allowed me to fall apart, and never once judged me or called me weak.  In fact, he would always tell me that I was so strong and he never once blamed me (or my body) for what happened.  For Zac, the worst came in the feeling of helpless, of having no control over the situation and being powerless to make a difference.  For a man who fixes problems for a living (Zac’s a mechanic in case you didn’t know), it was hard to accept that Everett’s problems could not be fixed with his hands.  Allowing your spouse to see you at your most vulnerable is a scary thing…especially when you’re not acting always in your “right” mind.  But Zac and I learned that with this type of vulnerability came an increased intimacy…a type of intimacy that we probably wouldn’t have if not for Everett.  We’ve had conversations that most married couples never have.  We’ve faced each other at our worst and said, “I love you anyway.”  Unconditional love…the stuff of fairy tales. 



Wine Tasting in Sonoma
Weddings vows usually cite opposites.  I think this is an allusion to how husbands and wives often work to balance each other and I think that is true of most marriages.  For Zac and I, when I was falling apart, he was strong.  When he was angry, I was calm.  When one of us was the pessimist, the other became the optimist.  It was a balancing act so that neither one of us was out of control at the same time.  We always joked that one of us had to keep a clear head…it just depended on which one of us was on duty for that particular day :-)  




White Water Rafting in Oregon
The financial hardships of having a prolonged hospitalization (or chronic illness for that matter) seem unending.  Insurance does its part and the leftovers are up to you.  Add in co-pays, deductibles, out-of-pocket maximums…well, it’s enough to make you scream.  In facing those bills, you begin to realize what is really important.  I will tell you, it isn’t the clothes you wear, the cars you drive, or the house you live in.  What REALLY matters is family, togetherness, and health.  The saying in our house is it isn’t the house that makes the home; it is the people inside when you get there.  Your relationships are the things you can’t put a price on!  And those relationships are worth everything!!!


VEGAS Baby!!!
I don’t mean to sound preachy about marriage or like I’m giving advice on how to make it work, as many of you have been married a lot longer than us.  But I so much want to show the pride that I carry in my heart for the road that Zac and I have traveled together.  Seven years…gone in the blink of an eye…from two kids growing up together, making a life, learning to live…to working professionals, accomplishing our dreams, becoming proud parents, and still as much in love as the day we said “I Do.”  I can’t wait to see what the next seven years hold…whatever it is, as long as our family is together, it’s going to be good   
October 2010

Happy Anniversary to us!

Zac and Sara

P.S.  Everett is doing GREAT!  I took him to the beach last week for the first time since he started walking.  He ran straight into the water, up to chest high, and screamed at me when I plucked him out.  I think we have a swimmer/surfer on our hands.  He is fearless!!!

Sunday, May 22, 2011

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 50th 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 365th 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























This is my therapy...

I've been thinking about getting a tattoo since Everett's birth. One of my major issues while Everett was in the hospital was that to the average person, I looked like an average person. From the outside, no one would have known the struggles that we were enduring. And therefore, no one would understand why I wasn't the same person that I once was. I often said to those closest to me that it would have been easier if I had a scar on the outside...something to show the pain...then people would ask questions and understand. Well...19 months later (and two months of saying every day, "I want a tattoo") I finally got one!

This is Everett's foot print at birth. When we went to get it done, the artist said, "Do you want it actual size?" I said, "Yes" and he replied, "Then why did you shrink it?" Zac and I grinned and sweetly said, "This is actual size." You should have seen the look on the guy's face.

So here is my outward mark to the scar inside. My reminder of the journey of a lifetime. 


Thursday, May 19, 2011

Growing Up and Moving On...

Wednesday, February 23, 2011

Dear Family and Friends,

It feels like ages since I’ve updated you all on Everett.  And, I suppose, that’s actually a good sign…no news is good news, right?  Right!  So then, what is new with Everett?  Well, he’s all healed up after his latest surgery and is completely back to his old self, plus some new tricks.  His incisions have come together nicely and shouldn’t leave hardly a scar.  He really wasn’t down long at all, maybe ten days total, after the surgery.  And one huge benefit of having the hernia repair…it got him to crawl on all fours.  A side effect of him not wanting to drag his sore belly on the floor, Everett started crawling on hands and knees about six days after the surgery.  Now we can always hear him coming down the hall as he likes to slap his hands on the floor and his adorable little bottom wiggles as he moves.  He crawls like a bulldog, all shoulders with a look of determination on his face…I just LOVE it!  He’s also pulling up to standing on everything and everyone…including Jack (the dog).  And just a few days ago I saw him stand up by himself (of course he fell as soon as I started squealing with amazement), so now walking is on the horizon.  Hooray!!!

Everett’s only real setback following the surgery was some swallowing issues.  You may recall from the update I sent right after his surgery that he’d thrown up on the drive home from CHLA.  Well, that phenomenon continued for about four weeks in total.  It began as just more frequent spitting up and then progressed into full-force projectile vomiting with every meal.  I rushed Everett to his pediatrician about a week after his surgery, convinced that the intubation had done some permanent damage to his throat, but our doctor said this was Everett’s way of reacting to the surgery.  This was his form of regression.  He said to keep trying and work through it. 

In the midst of trying to “work through it,” Everett came down with a bad cold.  We ended up rushing him back to the pediatrician again where he was diagnosed with RSV.  For any preemie parent, those three letters carry HUGE red flags and are cause for pushing the panic button.  From day one in the NICU, we were told to be very leery of RSV exposure as it can be fatal to former preemies.  Last RSV season, Everett received vaccines to protect against the virus.  This year, due to insurance policy protocols, he didn’t qualify…each vaccine costs $2,000!  Needless to say, I had a freak out moment when the pediatrician said RSV.  But he assured us that Everett was old enough and healthy enough to recover without needing to be placed in the hospital.  For a week straight, we saw the doctor every other day.  Everett’s vomiting continued and he had two two-day stretches of keeping nothing (not food or formula) down.  He lost an entire pound.  He spiked high fevers, had a runny nose, and bad cough.  But, we stayed out of the hospital!!!  He’s recovered now.  He gained back all the weight he lost plus some more.  Zac and I are counting our blessing that this was Everett’s first real illness since he’s been home.  Sure, we’ve had the occasional stuffy nose, but never the high fevers, throwing up, hacking cough, sleep on the floor of his room type illness.  And with him being home for 11 months now, I think that’s pretty darn good!  I must give credit for Everett’s health to his caregivers who watch him regularly; Haley (who I babysat growing up), Sheri (friend of the family), my sisters-in-law, Monica and Alyssa and Sarah (friend from nursing school).  These women have been so dedicated to watching Everett not only on the days that I need to sleep after work, but also when I need some “alone time” too.  They have allowed us to keep Everett out of daycare and therefore, have helped keep him healthy for these 11 months.  We are SO thankful and blessed to have each of them in our lives and Everett just adores them all!!!  Thank you ladies!!!

As for Everett’s swallowing, which even after the RSV, I still felt was an area of concern; our pediatrician told me that I just wasn’t feeding Everett tasty enough food for him to want to swallow.  I’d never heard of such a thing and I really questioned if he knew what he was talking about (my apologies, as I know his wife will be reading this).  BUT, much to my surprise, I made Everett chicken strips covered in salsa, and guess what…the kid chewed and swallowed every last bite!  Everett doesn’t have swallowing issues…he’s just a picky eater.  With that in mind, he’s now eating chicken, beans, rice, eggs, pancakes, waffles, pasta, cottage cheese, string cheese, chocolate pudding, French fries, and crackers.  He’s also starting to master the sippy cup!  He eats three solid meals a day with three whole milk bottles in between plus snacks here and there.  He’s got some catching up to do with the fine motor skills with his hands, as he doesn’t pincher grasp (bringing his thumb and pointer finger together) or point, but this is because we had to delay solid food due to his gagging and choking.  We are working hard with his therapists and I’m sure he will get these new skills down soon.  As for the rest of him, he’s saying “Mama,” “Dada, “Hi,” “Hey,” “Yeah” and the occasional imitated word here and there.  I could swear he even said Jack the other day, but I haven’t heard it since.  He cut five new teeth last week, is still taking two naps a day (thank goodness), and can destroy our living room in 30 seconds flat.  Watching him grow is bittersweet.  I love seeing all the new things he can do, but gosh, I miss that true baby phase.  I can see why couples end up trying to get pregnant again around this time…’cause really your baby has become a toddler.  NOT that Zac and I are thinking of going down that road ANY time soon :-)  We are just enjoying our little miracle and that makes life interesting enough. 

And speaking of miracles, I think Everett’s reached the stage where strangers notice how small he is once they hear his age.  The conversation usually goes something like this, “How old is your baby?” “Sixteen months.” “Oh…(long pause as they size him up)…he’s so petite (or some word to that effect)” And from there they usually question if he’s walking, talking etc, which usually begs the question of why he isn’t doing any of those things.  The interesting part of this is that I think I’ve healed enough now that I don’t always tell the story of Everett’s birth or what has made Everett who he is.  I’ve come to realize that that is Everett’s past, and while it is a part of who he is, it does not define who he is.  As a family, we are always going to be challenged to not treat Everett like he is still sick.  My tendencies are still conservative…we already got our miracle and I don’t want to mess it up.  I definitely coddle him more that most moms, I am reluctant to push him too far, and the thought of public germs still scares me to my core.  But I know that this practice has to end and that Everett needs to grow up understanding that he is healthy.  I’m trying to train my mind too to understand that he is a well child.  Thankfully, I have the help of his therapists (who make him play in dirt), friends (who tell me to lighten up), and family (who tell me when I’m overreacting) to keep me in line.  As a family, we appreciate each of Everett’s little accomplishments.  Simple things like climbing on the couch, taking his pacifier in and out of his mouth, giggles and smiles are all HUGE milestones for us.  We appreciate them a little bit more than most.  And in this we’ve found that Everett’s growing up gets to take a little longer…which is no complaint for us.  But for the most part, we are making a concerted effort to treat Everett like any other child. 

I never thought I’d get to the day when I wasn’t explaining Everett to total strangers…but here I am.  And while I’m sure some of you might think, “She’s still healing from this experience?  Her son is well…so what’s she still griping about?”  If there is one thing I’ve learned, it is that the wounds Zac and I carry run deep.  And while they are healing, I don’t think they’re really ever going to close.  We are not the same people we once were (probably true of any first-time parent), we’ve weathered the worst storm of our lives at only 29 years old, we aren’t naïve to the realities of life anymore.  Growing up is hard…and painful at times…and Zac and I grew up exponentially in the past 16 months.  But ask me if I would have it any other way…for Everett’s sake…perhaps.  But for the wonderful benefits and gifts it has brought to Zac and I…never. 

I will close with saying that March 16, 2011 will mark Everett’s first year home.  For Zac and I, we look on this date more as Everett’s birthday, than the actual date he came into the world.  Zac even asked if we could legally change his birth date to March (you can’t, by the way).  So you can understand our anticipation and excitement to mark this HUGE occasion of 365 days at home :-)

With Love,

The Bollinger Family

P.S. Pictures attached, as always