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Zac and I woke up one weekend morning a few weeks ago to find that the baby we had put to bed had been replaced by a toddler boy…yes, it happened just that quickly, and we’ve been struggling to keep up ever since.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

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. 

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

Christmas-time Blessings...

Thursday, December 16, 2010

Dear Family and Friends,

A special thanks to all of you, Everett’s prayer warriors, for once again carrying Everett in your hearts and minds during this past week.  Everett’s surgery went very well…so well that he was discharged from the recovery room a mere hour after getting out of the Operating Room.  His surgeon, Dr. G, once again performed a successful surgery and we had him home and in bed by 8pm. 

We arrived at CHLA at 5:45am and checked in with the admitting desk.  As fate would have it, the woman admitting Everett was the same woman who admitted him last year…and she remembered us!  I could hardly believe it!  I always continue to be shocked by the small, personal happenings at this hugely large hospital.  From there we went on to the Surgical Admitting department where Everett was examined, weighed (he weighs 17 lbs 10 oz), measured (he is 27 ¾ inches tall), and updated them on Everett progress since he’s been home.  One BIG blessing about returning to CHLA is not needing to explain his medical history to any of the medical staff.  The hospital has computerized charting so everything from his 4 ½ months in the hospital is readily accessible.  That is a small convenience for a mom who is tired of having to relive Everett’s long medical journey every time we meet a new doctor or therapist.  After that, we changed Everett into his adorable surgical pajamas and waited to be taken up to the day surgery department.  While waiting, another man, whose job it was to clean the waiting room, came up and said he remembered us and our son, Everett (oh yes, he remembered his name).  Another amazing coincidence!  He “Oooood” and “Aaahhd” about how wonderfully strong Everett looked and said he hoped he wouldn’t be seeing us again.  We said we felt the same way.  From there we were taken up to the day surgical unit by yet another familiar face.  This time, it was the same man who escorted us around for both of Everett’s previous surgeries.  I am convinced God put these people in our paths that day for a reason…to make us feel at ease and give us confidence about the procedure.

After arriving in the day surgical unit, Everett was pre-medicated with a drug called Versed.  It may sound familiar to some of you as it is used routinely in colonoscopies and has the wonderful effect of amnesia.  About five minutes after getting his dose, Everett was high as a kite!  He was lying on his back, looking at his pacifier with crossed eyes, going “Aaaahhhhh, ahhhhhhh, ahhhhhhh” and was pulling his shirt up over his head.  Every woman who came to his bedside quickly had their sleeve attacked as he tried to pull them closer to him.  He is already a flirt and that Versed just made him even more so.  It was pretty cute!!!  Zac and I couldn’t help but laugh at him (as we videotaped the whole thing).  A few minutes later his surgeon came to his bedside to consent us for his surgery.  She explained the procedure for his hernia repair and then turned to the issue of his scar.  After looking at it, she told us she thought she could only improve its appearance by 15%.  And in order to do that, she would have to not only cut the skin, but also several layers of tissue underneath to get it to lay right.  In her professional opinion, she felt it wasn’t worth putting Everett through, especially after everything he’s already endured.  She was also concerned about the stress for him to have possible bilateral hernia repairs along with a six inch abdominal incision.  After some discussion, Zac and I opted not to do it.  I must admit, I was a little disappointed at first.  But after some reflective thought, I’ve realized that that scar is as much a part of Everett as is his heart, and who are we to determine how he displays his “war wounds.”  It would almost be like removing a part of who he is.  So, until Everett expresses some desire to change it, the scar stays untouched. 

Around 10am, Everett was taken to surgery and Zac and I returned to our spots in the waiting room, with my parents and Zac’s mom at our sides.  Old habits die hard and for each of us, we fell easily into the old habits of the things we did during Everett’s previous surgeries.  We ate McDonalds, my mom and I got Italian Sodas (a treat we only get at CHLA), we sat in almost the same exact seats, watched the exact same shows on TV…like I said, old habits die hard.  After about an hour, Zac and I were called again to the surgery waiting room to talk with Everett’s surgeon.  Carrying with the theme of habits, we were lead to the same room where we first received the news that Everett had an overwhelming bowel infection one year before.  Again…a day of coincidences!  When Dr. G walked in she said, “Well, we changed the plan just a little bit.”  And then she laughed because stuff like that is so typically Everett.  He never follows the rules.  Dr. G was successful in fixing Everett’s very large left hernia, but she also found the surprise of an undiagnosed un-descended testicle!  My response was, “Huh?” as my mind was thinking, “After all the poking and prodding this kid has had, how could this be!”  Everett will probably be mad at me someday for sharing this information with you, but his testicles have always been a topic of discussion with his doctors.  Last year, when Everett was transferred to CHLA, we arrived after he’d already been examined and the first question out of the doctor’s mouth at that time was, “Do you know if he has testicles?”  So needless to say, they’ve been elusive.  Before leaving CHLA, both of them were located via ultrasound, so we knew he at least had them.  But as far as if they were where they belonged…no one ever told us.  Dr. G said it had been missed because his hernia was so large that it was actually protruding into his scrotum, and so what each doctor felt and assumed was a testicle was actually bowel.  She had to do some looking, but she eventually found it and sutured it into the right place.  His right testicle, she’s fairly confident, is where is should be.  As far as the right hernia, she still isn’t sure if he has one.  She attempted to look at that side with a small camera, but his tissue wasn’t cooperating, so our plan is to watch him for signs of it.  If he ends up developing one, it will be back to the operating room again.  Let’s pray that doesn’t ever happen!

His incision is 1 ½ inches in the lower left quadrant of his abdomen.  She closed it with Dermabond (surgical super glue) and it shouldn’t leave too much of a scar.  As for his man parts…well, they are black and blue and have a 1 inch incision on them too.  Poor kid!  It makes diaper changing pretty interesting.  But we are SO thankful that the un-descended testicle was discovered.  Had we waited to have this surgery done, Everett would have been at risk for testicular cancer and infertility when he got older.  We are thankful that God guided Dr. G in solving this issue!  After one hour in the recovery room, and 8 oz of apple juice, we were allowed to take Everett home.  Dr. G said she felt we’d have an easier time getting him home while he was still tired from the anesthesia rather than keeping him overnight and taking him home the next day, fully conscious and sore.  So we loaded him into the car and said goodbye to CHLA for (hopefully) the last time :-) 

Everett is feeling well.  He did have some issues keeping down food the day of surgery, but today he’s eating fine, pooping, and is almost back to his old self.  He’s happy, giggly, but just a little more tired than usual (not that I’m complaining).  He also isn’t crawling very much, as he usually crawls with his belly on the floor.  But as he heals, this skill will come back.  Or maybe he’ll just go on to walking :-)  We are praising God for providing, yet again, the answers to our prayers.  We are so proud of our Everett who continues to amaze us as he takes life’s challenges in stride.  He is so brave and strong!!!  And we are relieved to have this surgery behind us.  We thank you for your prayers on his behalf.  God listens!!! 

Now we are looking forward to celebrating Everett’s Second, First Christmas and experiencing some of the moments we have spent many hours longing for.  With that being said, I will conclude by saying…in this season of miracles, may you always have hope.

With Love,

The Bollinger Family

P.S.  The attached pictures are of before (the flirt) and after (the sleepy boy) surgery. 

CHLA Bound...

Tuesday, December 07, 2010

Dear Family and Friends,

Happy December to all of you!  I hope your Thanksgiving holiday was full of family, togetherness, and a multitude of blessings.  We spent our holiday at my parents' house, celebrating and giving thanks for Everett and for our family.  It was a wonderful day…one that last year, we thought we might never get to enjoy.  I searched high and low for a special outfit for Everett to wear and I finally found the PERFECT one.  A picture is attached and as you will see, his shirt reads “Everyone Is Thankful For Me” :-)  Yes, we are thankful for our precious Everett and for all the blessings and answered prayers we’ve received over this past year.  We are so blessed!!!

Now that we’ve come into December, our focus has shifted toward Everett’s upcoming surgery, which is scheduled for Wednesday, December 15^th at 7am.  We will be the first case of the day because Everett will likely be their youngest patient.  The procedure will take anywhere from 45 minutes to two hours depending upon whether the surgeon revises his scar.  After that, he will be transferred to the Recovery Room and then onto the Med/Surg unit for an overnight stay.  I plan to stay the night with him in the hospital (something neither Zac nor I were ever given the opportunity to do in the NICU).  If all goes according to plan, we will head home on Thursday afternoon, after he is discharged. 

So how are Zac and I feeling about this surgery?  In a word…TERRIFIED!  You’d think we’d be old-pros at this surgery thing, but it seems that the more we undergo, the more we realize the huge risks involved and thus the more nervous we get.  In my quiet moments, I often wonder if we’ve already used up our “quota” for blessings and sometimes I feel like there is no way we will get so lucky again.  The fact that Everett has done so well since his second surgery and discharge is truly a miracle.  I’m sure part of that feeling is related to this time last year, when our journey took a dramatic turn for the worse (actually, Everett’s first surgery took place a year ago tomorrow) and is also part of the PTSD that I know Zac and I are suffering from.  I guess we are always wondering if the other shoe is going to drop (because it did when we least expected it).  So, as I’m sure most NICU parents do, we’ve taken the “hope for the best, prepare for the worst” approach.  There is palpable tension in our house.  I can feel all my emotions from being at CHLA creeping back into my heart.  What can I say…I’m ready for a fight…because the last time we were there, I had to fight for Everett’s life.  But, when these emotions take over, I try to remind myself that things are so different now, that Everett is healthy and that what happened before was our past and will not dictate our future.  But of course having Everett at home this time makes handing him over to the surgeons that much harder.  Lord, give me the strength!!!   

Zac and I are also trying to cope with the fact that taking Everett back to CHLA goes entirely against every parental instinct we have.  We’ve been working so hard for these past nine months, since Everett’s been home, to keep him out of the hospital.  We’ve found the balance between socializing and health, normalcy and caution.  We take GREAT pride in the fact that we’ve been able to keep our precious boy so healthy.  And now to take him back, to put him through surgery, it really just tears at our hearts.  But all this is the emotional side of things, and the rational side tells us that we have to do this, that this surgery will make him even healthier.  And so we go back and forth all day…our brains are like a circus of emotions.  We haven’t even had the surgery yet and we are already exhausted from it! 

We have cancelled Everett’s therapy for six weeks following the surgery.  This will allow his body to rest and heal.  Once his therapy starts up again, we expect Everett to have regressed a little in his development.  For instance, he might not crawl or sleep through the night or babble as much.  But this is a common reaction to stress in children.  His therapists assure us that given enough time to process everything, Everett will return to his normal self.  Again, it is hard for Zac and I to have this surgery knowing that this will cause Everett more setbacks, especially after he has worked so hard to acquire every skill that he has, but again, we repeat to ourselves that this will make him healthier. 

In this week before his surgery, I ask you, Everett’s prayer warriors, to include Everett in your prayers.  Most specifically, can you pray for (I know this list is long…but it includes everything):

1.       For a complication-free surgery and recovery

2.       For no side effects (specifically oral aversion) from Everett’s intubation

3.       For adequate pain management

4.       That Everett will quickly return to his happy, giggly self

5.       That Everett will not remember any of this experience

6.       For our parents, who worry just as much, if not MORE, than we do.  Help them to know our family will be okay, no matter what life throws at us, as long as we have each other

7.       For Zac and I to know that we are making the right decisions for Everett

8.       Give thanks for Everett’s health, answered prayers, and Christmas-time blessings

Our thanks go out to each of you!  Your prayers work miracles and Zac and I feel more confident knowing that you are all standing beside us in prayer.  I know it is a busy time of year and that all of you are concerned with your own families and holiday plans, but please know that we are touched that you take time out of your day to think of our son.  We continue to be humbled by your love and steadfastness :-)

With Love,

The Bollinger Family

Our family refers to this as Everett’s prayer :-)

Be merciful unto me, O God, be merciful unto me; for my soul trusteth in yee; yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.  PSALM 57:1

Second, First Holidays, Crawling, and Surgery...Oh My!

Tuesday, November 16, 2010

Dear Family and Friends,

Who knew that being a parent would be THIS MUCH FUN?  Well, probably all of you out there who are already parents.  But for Zac and me, we had no idea…and I now often find myself saying, “If I’d known it was going to be this great, I wouldn’t have waited so long!”  Ah, we are enjoying our little Everett, our little family, and our day-to-day lives together.  And with the holidays quickly approaching, we are excitedly anticipating celebrating Everett’s second, first holidays (we’ve decided not to really count the ones he spent in the hospital).  For the sake of comparison, this time last year, Everett weighed 2 lbs. 5 oz. and was 13 ½ inches long.  This year, he’s measuring 16 lbs. 7 oz. and is 26 ¾ inches long.  Now that’s some growth!!!  He still isn’t on the growth charts (it seems they keep growing just as much as he grows) but he’s on a good angle on the chart, not too steep and not too shallow, so we’re happy with his “less that 5^th percentile” label :-)  

‘Lil E is crawling!!!  Granted, it is still an army crawl…but he is able to propel himself forward instead of rolling everywhere so it defiantly counts.  And now he’s into EVERYTHING!  Books, toys, dog food, rugs, laundry, electronics…nothing is safe from his reach.  He’s getting pretty fast at it too.  And the thing that he loves to crawl for the most…big brother Jack (the dog).  He is quite taken with him and will follow him anywhere (in fact, we joke that Everett probably thinks he’s a dog).  He loves to “pet” him, pull him, attempt to eat his ears, and steals his toys constantly.  Jack takes the abuse without a growl, nip, or whine, but moves to the other side of the room as soon as an opportunity presents itself.  The two of them are adorable to watch.  I keep telling Jack, “Give Everett two years and he’ll be your best friend.”  I don’t think he believes me :-)

‘Lil E is eating!!!  Finally, finally, finally he is able to eat the Gerber puffs, biter biscuits and various baby friendly foods without choking, gagging or throwing up.  Whew!  Now I can cross that worry off my list :-)  Shortly after his birthday, Everett was suddenly able to tolerate finger foods.  He’s chewing, thanks to his new two front teeth, and is swallowing just fine.  His birthday cake wasn’t a hit…what can I say, this kid just doesn’t like sugar.  He didn’t want the frosting or the cake, but he put up with the ice cream.  Let’s hope his preference for foods lasts into adulthood. 

Tri-Counties Regional Center completed their evaluation of his gestation (actual) and corrected ages last month.  We are happy to report that in the areas of cognition, language, and speech, Everett is testing at his actual (12 month) age!  This is a great accomplishment for him and just reassures us that his beautiful brain is functioning properly.  In the areas of gross and fine motor skills, he tested at his adjusted (8 month) age.  This is also a great accomplishment as typically children that spend the amount of time Everett did lying in a hospital crib are delayed beyond their adjusted age.  In the area of feeding, Everett tested at 6 months, mainly because of his inability to handle solid food textures.  But with him now tolerating the puffs, crackers, etc., he’s moved up to the 8 month bracket.  I wasn’t aware at the time, but in order to qualify for Tri-Counties, the child must test at 33% below their CORRECTED age.  Had the therapists told me this at the time, I probably would have freaked out.  But now, Everett tests at less than 20% below his ACTUAL age.  In just six short months, he’s made such progress.  We are SO proud of him!!!  The goal is for him to adjust to his actual age by his second birthday.  If he accomplishes this goal, therapy will no longer be necessary :-)  

We’ve been to CHLA several times this past month for follow-up exams.  The first was with the Eye Surgeon who attended Everett while he was in the NICU.  We chose to return to CHLA for a second opinion about his Retinopathy of Prematurity.  And the news to report…Everett has no active ROP!!!  He tells us that it is completely regressed and that invasive retinal exams are no longer required…WOOHOO!  Having held my screaming child through four of those exams, I’m thankful to never have to comfort him through another one.  Everett will just be followed by a regular eye doctor from this point forward. 

Our second trip to CHLA was for a follow-up surgery appointment.  The surgeon wanted to check on his progress and growth and we wanted to discuss his bilateral hernias and scar.  The surgeon checked him over and said his abdomen has healed properly.  His growth is appropriate and proportional so we have nothing to worry about there.  But then he checked his hernias and determined that they are “very, very large.”  Not to be graphic (but remember, I’m a nurse), the surgeon was able to stuck his thumb through his left one…OUCH!  That’s a BIG hernia on a little person.  The hernia on the right is likely around the same size, although the surgeon couldn’t feel that one as well.  So…what does all this mean?  We return to CHLA for hernia repairs on Wednesday, December 15, 2010.  In an odd coincidence, the first surgery date they offered was December 8^th, which you may recall was the date of Everett’s first surgery last year.  I quickly asked if they had a different date available…not that I’m superstitious, but I just couldn’t bring myself to do it that day.  As for his scar, which we would like to have revised at the same time, the surgeon said he’ll have to wait-and-see the day of surgery.  If the hernias take too long to repair, they won’t be able to do the scar as they don’t want Everett under anesthesia for too long.  But if they have the opportunity, he’s happy to do it for us.  Everett will remain in the hospital overnight, per my request (usually this procedure is done outpatient) because we live so far away should something happen, and then he will be discharged on Thursday afternoon. 

After all we’ve been through, Zac and I are oddly amused at the thought of seeing CHLA all decorated for Christmas again.  It is almost surreal.  Never in a million years did we think we’d be back there.  But this time…Everett’s coming right home.  We’re nervous but place our faith in God and the hands of the surgeons to take great care of our little boy.  This is the final step in a long journey toward healing and strange as it may sound, Zac and I are ready to take it! 

I hope this email finds all of you, Everett’s prayer warriors, well.  May we wish you an early Happy Thanksgiving!  We have so much to be thankful for this year with our healthy son, happy marriage, strong family, and caring friends.  We give thanks and praise to God for his blessings and his gifts.  And we give thanks and praise to each of you who continues to pray for our family.  We love you so much and hope that you have equally as many things to be thankful for this Thanksgiving.

With Love,

The Bollinger Family

P.S. Pictures are attached.  The first is of Everett’s First Halloween, the second is of Everett’s Second, First Halloween (with the SAME HAT in both pictures), the third is from his birthday, and the fourth of our Pumpkin Baby (courtesy of our incredible photographer friend, Ashley Beem).  Enjoy!!!

Everett Turns One...

October 10, 2010

Everett Turns One…

A Letter to my Son on His First Birthday

My Dearest Everett,

The first memory I have after your birth was lying in the recovery room, with Daddy on my right and Grandmum on my left, shaking from head to toe because I was so scared about what was happening to you.  With tears streaming down my face, I said without faltering, “I’m a mom.”  This is my first memory of you.  I say this is my first memory because we didn’t get the typical birth story that other families get.  But that’s okay.  We have our own, unique experience and while it may be different, it revolves around love, which is all that really matters.  Daddy and I didn’t get to see you right away, or hold you right away, but like all parents, we loved you from the moment you were born!

The day you were born was a cool day in October.  We were on our way to breakfast with Grandad when you decided to come early.  Our whole family waited upon your arrival at the hospital.  There were lots of tears.  Not the same type of tears as when other babies are born.  Our tears were laced with fear and sadness for you, but with those tears also came affirmations of hope and determination, of strength and of love.  We all kept repeating, “He’s going to be okay.”  You arrived in this world weighing 1 lb 13 oz.  Kittens weigh more than you did.  But packed into your little body was a will to survive and to thrive that is rarely seen in one so small.  Your name, which Daddy and I picked the day we found out you were on your way, is from one of my favorite movies.  It means “strong as a wild boar,” and that you are.  Our little fighter, our warrior, you have already surpassed all our expectations.

All children, my sweet Everett, are a miracle.  But you, in particular, are one of God’s most special creations.  From the beginning, you have broken all the molds, the protocols, the standards.  You are truly unique.  In that the doctors said you were too small and too sick to survive, you did.  We give thanks to God’s graciousness and the prayers of hundreds and hundreds of your “prayers warriors,” your stubborn personality, and Daddy and mine’s sheer determination to get you what we thought you needed.  And happily, at one year old today, the child that sits before me is full of sweetness, curiosity, happiness and love.  How you have enriched our lives!  You and you alone, have taught Daddy and me so many lessons in your short life.  I have to laugh at this because it is us who should be the teachers.  You have taught us patience, assertiveness, advocacy, tenderness, loyalty, communication, to slow down and appreciate the little things, to not sweat the small stuff, to trust in God, to not take life for granted, and above all, unconditional love.  We are better people because of you.  In you, we have all our hopes and dreams and all of our love.

In your lifetime, I hope you grow to have all the best parts of me and all the best parts of Daddy.  I hope you grow to respect others and treat them as you would like to be treated.  I hope you grow to have integrity, to know right and wrong, to stand up for what you believe in.  I hope you grow to be bold, to honor tradition, and to serve God.  I hope you grow in learning from your mistakes, from taking risks, and from striving to accomplish your goals.  I hope you grow to be happy, to know true love, and to know the pure joy of being a parent…of having part of your heart exist outside your own body.  And know that as you grow and change and become the person you are going to be, Daddy and I will be with you, supporting you, every step of the way.  There is nothing you could ever do to change our love for you, our precious boy.  In you, we have found unconditional love and renewed hope. 

Your life will not always be easy, but this you know already.  In one year, you have suffered more than most people do in a lifetime.  But nothing worth having comes without sacrifice.  And love does not come without suffering and hurting.  Because to truly love, unconditionally love, is to put others before yourself.  You will learn this with time.  Know that Daddy and I love you unconditionally.  Know that we will be here for you on your path through this thing called life. You can count on us for being there when you need support in all its subtle appearances.  A hand to hold when you attempt your first steps, to calm you when you have a bad dream, to kiss your scrapes, to pack your lunch with your favorite sandwich, to drive you to practice after practice, to mend a broken heart, to fix a broken car, to drop you off at college, to dance with you at your wedding, to give you advice when you bring your first baby home, to treat your dreams with the same excitement that you have for them.  We will be the biggest fans of your life.  We are honored to have been chosen to be your parents and we will never stop loving you!

On this, your first birthday, these are the things I wish for you.  My five rules for your life…

1)      Find something worthy of dedicating your life; for me, this is you!

2)      Respect your body; it took $4 million to get it working right :-)  You are a medical marvel, you beat the odds…don’t tempt fate, take care of yourself

3)      Grow roots and wings; fly high to achieve your dreams but stay grounded to where you came from

4)      Find someone who loves you, just as you are

5)      Be happy!

Happy First Birthday to our little Everett!  You are a new beginning, a radiant life, a blank book, yet unwritten.  And nobody can reveal how you’ll author the pages.  It’s going to be your own story.  Keep on filling the pages of your book in your own unique way.  Daddy and I will be reading along, waiting with anticipation, as each page turns.  And in each chapter of your life, we promise to love you with all our hearts. 

Love,

Mama and Daddy

Everett is Eleven Months Old...

September 29, 2010

Dear Family and Friends,

It has been a whirlwind here at the Bollinger household over the past month.  We’ve been traveling here, there and everywhere as well as working on the yard landscaping project we started over a year ago (Everett’s early arrival put a major hold on our progress).  But happily, soon Everett, and Jack too, will have grass to roll and play in and our neighbors must be excited to see beautiful plants instead of dirt in our front yard.  For this update, I don’t have much to report, which is a good thing! :-)

Everett is doing fantastic and has really seemed to settle into himself especially in the past three weeks.  Maybe it is that he can roll anywhere he wants, to get anything he wants or maybe he is just growing up, but he’s even happier than he used to be (if that’s even possible)!  He’s going down for naps without a fight twice a day, is sleeping totally through the night without even a whimper, and is flashing that classic Everett smile with a tongue sticking out as his newest trick.  Life is good!!!

His therapy continues twice a week with Kate (physical therapist) and Marla (educational therapist).  We are now working on sitting up and crawling.  Everett is getting great at sitting once he’s propped up and has his balance.  He can last for a few minutes before he topples over and is reaching for toys while he’s there.  The crawling is still SO close.  He has the leg movement and the arm movement but still hasn’t been able to coordinate the two together.  I’m excited he’s making strides toward the next big milestone but I’m in NO HURRY to have a totally mobile baby :-)  We are still working hard toward tolerating bite-sized foods.  Each week, we try the Gerber puffs or biter biscuits and each week, Everett sputters, chokes, and throws up.  It is discouraging but the family motto is, “Give him grace!”  This is our term for reminding ourselves that we need to slow down and allow Everett to grow and mature at his own pace.  I, in particular, tend to get impatient with his progress, sometimes wondering why he hasn’t reached the typical 11-month-old milestones already.  After all, he’s been a miracle in every other way, so I guess I expect it in this way too.  This motto is my way of remembering that he was a very sick little boy for a very long time and that I need to stop and appreciate the things he’s accomplished instead of lament the things he hasn’t.  Give him grace and he’ll get there in his own time!

That being said, Zac and I are pretty sure that Speech Therapy will be added to his therapy list in the coming months.  Everett gets reevaluated for Tri-Counties Regional Center therapy next week.  They will assess his actual and adjusted ages and determine how much progress he’s made.  Then his therapy plan for the next six months is tailored to meet those milestones that he needs to achieve.  It is a stressful time for me as these assessments and plans tend to point out those things that Everett isn’t doing.  Seeing it all on paper, in black and white, often makes me anxious and brings back a lot of the feelings of inadequacy that I so often felt while he was in the hospital.  Then the questions and fears start flying around in my head, “Will he be a typical child?  Is there permanent damage we don’t know about?  Is he farther behind than he should be?  Is he a normal preemie?”  It is a high stress time, but a necessary time to get Everett the interventions that he needs.

Zac, Everett and I went to CHLA yesterday for the March of Dimes symposium that we were invited to speak at.  Basically we were interviewed in front of nurses, doctors, therapists, and social workers about our family experience both at CHLA and SV.  The questions ranged from what he thought the first time we saw Everett, to insurance and financial concerns, to issues once he came home, to barriers to bonding in the hospital and support for Kangaroo Care.  We were honest and raw about things we felt and experienced and I think we really made the staff think about how they can improve their practice with parents in the NICU.  While the NICU support for us overall was WONDERFUL, there is always room for improvement.  I particularly tried to focus on helping the staff recognize the signs of depression in a NICU mom (something I battled with while Everett was hospitalized and still battle with now) and ways for the staff to improve communication so that parents are not being told conflicting ideas by different doctors, therapists, etc.  I was pretty proud that I didn’t cry until the end when the interviewer asked me to express the greatest thing that the NICU staff had done for us.  I, of course, got all choked up, and said “You saved my son’s life.  We exist as a family because of the care that you gave.  Everett will grow up because of you.  He will achieve his dreams because of you.  Each of you are angels sent from Heaven to watch over and care for some very special people.  You are forever a part of our lives and there is not a day that goes by that we are not thankful to God for you.  You gave us the gift of life…the gift of our son.”  At the end of the talk, several nurses and doctors came to take a peek at Everett (who was sleeping by then).  They were in disbelief that the scrawny, jaundiced, bright yellow, bald baby that they’d sent home six months ago had grown into the chunky little man that he is now (although he’s still bald).  Many of them called our story inspirational, which is an odd feeling to me.  But one of them said that to see a family and a baby that were as devastated as we were at the time (this particular doctor dealt with us while we were trying to argue our way into getting Everett his second surgery and I was at the lowest point in my depression) rally to having a happy, healthy child, with two happy parents living a “normal” life outside the hospital was something they don’t get to see often.  It just reiterated to me that Everett’s miraculous recovery is not something that happens every day and I praise God for his generosity in healing our son.  All in all, the day was another wonderful moment of healing.  Zac and I drove home holding hands with Everett asleep in the back and counted, out loud to each other, our blessings over the past year.  We made it all the way home and were still counting when we got there…

For saying that I didn’t have much to report, this update has turned out to be long :-) Just one more thing to say, as I’m sure most of you have already heard, the October fundraiser has been cancelled because our $70,000 medical bill from SV was forgiven (well, in reality, I agued my way out of paying it and the company finally saw that they had to honor the contract I’d been saying they needed to honor for six months!).  You can only imagine the relief that we feel knowing that this bill is no longer hanging over our heads.  I remember the day I opened the letter with the first statement in it with the balance showing $68,000 and I actually laughed at the time, thinking it must have been a mistake.  But when the phone calls started coming, asking for us to pay the balance in full (like we had $68,000 just sitting in an account somewhere), I had visions of Zac and I losing our house, our cars, and being forced into bankruptcy.  This stress, in addition to the stress of Everett being in the hospital at the time, was almost too much to bear.  But very happily, everything works out as it should.  If there is one thing I’ve learned, the power of prayer and good friendship can carry you through anything!  We want to give a HUGE thanks to the people who were involved in the planning of the fundraiser and a HUGE thank you to everyone who was planning to participate.  We are so humbled and blessed to have such willing and generous people surrounding us…we thank God for you all and for all your hard work!!!  It sounds funny to say, but I’m glad we don’t need it anymore :-)

Everett’s first birthday is in a mere two weeks!  The next update will have the classic pictures of him with his hands in his cake, covered head to toe in frosting…I can hardly believe it!  What a year it has been…

With Love,

The Bollinger Family