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

Facing Reality...

Friday, January 29 2010
Dear Family and Friends,

It has been a while, I know.  And this email is delayed in coming because it is one of the harder ones for me to write.  As has happened a dozen times during this long journey, "the plan" has changed again and Zac and I have needed some time to digest the multitude of information being thrown at us and to start to forge a new path forward.  We were so hopeful that Everett would be home in the next two weeks...maybe hopeful to the point of denial.  But now, with new concerns glaring us in the face, we cannot deny that Everett's timely arrival home is no longer our reality.

Everett still weighs 4 lbs 9 oz.  He has not gained weight in over two weeks.  His growth charts show a plateau where a straight 45 degree angle upward should be.  At first the doctors were not concerned...all babies grow in spurts.  But a preemie should always show steady growth because they have so much growing to do.  So after 10 days of no growth, the doctors took actions to help Everett grow.  They began fortifying his breastmilk with extra calories to provide Everett with better nutrition.  They also began giving him extra vitamins and minerals through his feeding tube with hopes of stimulating growth.  These measures, unfortunately, did not work.  If anything, they made him a little worse. 

About a week ago, Everett started "dumping" from his ileostomy (dumping is when food moves so quickly through the intestines that it is not processed and essentially what goes in the mouth comes out the other side).  With all this dumping came significant weight loss.  The doctors believed it was a reaction to the fortification and vitamins, that Everett was showing signs that his intestines just weren't ready to process anything but breastmilk.  So his feedings went back to plain breastmilk.  After a few days, the dumping improved and he gained back the weight he lost, but no more than that.  And that is where he stood until Wednesday. 

On Wednesday we had another meeting with ALL the doctors, including two neonatologists, a gastroenterologist, a surgeon (via email), a nurse and a social worker.  The discussions took over two hours and upon their completion I walked out of that room a devastated mother.  I don't think I had realized, until that day, just how sick Everett has been.  Call it it it stupidity...I just didn't want to see it.  And it took a team of doctors telling me that they never expected him to make it through surgery to get it into my thick head.  It is a profound and life changing moment when you realize that you almost lost your child...

The new plan for Everett is to "force feed" high calorie breastmilk in large quantities over the next week in order to force his intestines to grow.  This plan was started on Wednesday and worked well for a day, then we took a few steps back, then today we are back on course.  By Monday, the doctors will know if it is going to work.  If it doesn't, they have a plan B which involves artificial nutrition and experimental drugs to prevent liver failure...but I will save all those details for another email (hopefully I will never have to tell you about it).  Everett is receiving 13 mls of fortified breastmilk per hour by feeding tube.  He receives vitamins and minerals via IV once a day to promote healthy growth.  Today he swallowed 10 mls of breastmilk via bottle without any problems...a first for him!  He's put on an ounce since Wednesday, which is great progress.  The ultimate goal is for him to gain 1-2 ounces per day. 

Everett's discharge home is entirely dependent upon how quickly he can put on weight.  He needs to be 3 kilograms before discharge (equal to 6.5 pounds).  If he gains 1 ounce per day, it will take him 33 days to reach this goal weight.  It is for this reason that doctors are now saying he could optimistically be home in four weeks, but realistically in eight weeks.  When he does finally come home, he will remain on tube feedings around the clock.  This will require home health nursing care and a whole bunch of hospital-grade equipment.  My nursing skills will come in handy...I just never dreamed I would be using them on my own child. 

His eyes continue to improve with the small area of stage 3 disease regressing into stage 2.  This Monday's eye exam determined that no eye surgery will be required...ever!!!  A true miracle that we are very grateful for!!!  Our insurance concerns are working themselves out.  We are getting ready to transfer to a second plan offered by my employer.  We are thankful for their attentiveness and willingness to work with us. 

It has been a hard two weeks.  Zac and I truly believed that this journey would be over by now and we are having a hard time finding to strength to continue.  The exhaustion of the past 16 weeks is weighing heavy, our emotions are drained, and we feel like we've been treading water for eternity.  Zac and I are taking a step back to reevaluate our plan for surviving this experience.  We are finally starting to realize that we need to take care of ourselves in order to have any hope of taking care of Everett.  If your prayers could include for us to have restful nights, acceptance of the things we cannot change, hope for the future, love for each other, support when we falter, and faith that someday all this will be a distant memory that makes us a stronger family, we would appreciate it.  I know we are not alone in this experience...but sometimes we feel like the burden is too much to carry.  We thank you all for loving us, caring about us and praying for us.  We would not be here without you.  We love you!

With Hope for the Future,

The Bollinger Family

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