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

BIG Decisions...

Thursday, February 18, 2010

Dear Family and Friends,

I thought along this journey the hard days would eventually hurt less...or that I would learn how to cope with them better.  But what I've found is that the love I have for my son grows exponentially every day...and so the hurt of seeing him hurt grows exponentially every day.  We have been apart for 10 weeks now.  Our hearts ache for him.  Zac and I have grown tired of watching and waiting, while nurses and doctors get to experience moments with our son that should belong to us.  Our patience is thin, our emotions are exhausted, and we are fed-up with excuses.  We have taken a crash-course in advocating for Everett.  And we are finally getting some answers.

We have reached the point of exhaustion of options.  Everett is able to grow on breast milk alone, but not quickly enough.  It has taken him three weeks to gain one pound.  And while we are thrilled that he weighs 5 lbs 8 oz, he realistically should have gained over two pounds in the same amount of time.  We have considered the idea of putting Everett back on artificial nutrition to help him grow faster and more efficiently.  At first it sounded like the easy way to go, but it comes with a price.  Because of all the artificial nutrition Everett received early in life and following his surgery, he has liver damage.  He is jaundiced and his liver function tests are abnormal.  To place him back onto artificial nutrition would cause greater insult to his already compromised liver.  Our fear is that this path would result in us using the artificial nutrition to save Everett's bowel now only to lose him to liver failure later.  After much thought and prayer...this is not a risk we are willing to take.

This leaves us with only one option…surgery to reconnect Everett's bowels.  It will take place this Monday, February 22nd at 7:30am.  While we had hoped that the surgery would be easily successful, there are a lot of variables that are not guaranteed.  There is a possibility that Everett’s bowel will not be healed enough from all the inflammation and necrotizing colitis that they found during the first surgery.  If this is the case, then Everett may end up with Short Bowel Syndrome (a condition where there is not enough bowel for adequate and normal nutrition) and a second ileostomy.  There is another possibility that the section of bowel that is adhered to Everett’s liver will not be salvageable.  Its removal from his liver may result in massive bleeding.  These are risks that Zac and I have taken into account with great consideration, but we still feel that surgery is the best way to go. 

We have been saying for weeks that this surgery is what we desperately want for Everett.  But now that it is here, we suddenly find ourselves petrified with fear and overcome with anxiety.  The first time around, ignorance was bliss.  This time, we know exactly what to expect, and we know it’s not going to be pretty.  We just pray that Everett will continue to be the strong and courageous child that we love with all our hearts.  We pray that God will be with him and will take him into His care.  We pray that the surgery will have optimal results with a great chance for normalcy.  We pray that we will get to bring our son home.

We thank all of you for your support throughout this journey.  We have found strength in your inspirational words, confidence in your unending love, shelter in your open arms, and hope in your continuous prayers.  We will keep you updated on Monday as best we can.  Please feel free to email or text.  We will be waiting…


The Bollinger Family

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