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, May 19, 2011

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

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