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

Focusing on the Positive...

Thursday, March 11, 2010

Dear Family and Friends,

Everett is five months old!  I can hardly believe it.  And while some days it seems like time flies, other days time seems to move at a snail's pace.  We are so close to getting him home (for real this time) that Zac and I are on edge.  We are feeling every little setback with even more emotion than before.  Every little triumph makes the light at the end of our very long tunnel much brighter.  Now, all we want to do is go through that light and bring Everett home.

Everett has healed well from the surgery.  In fact, the surgeons signed off on his care yesterday, meaning that baring any odd complications, they don't need to see him on a daily basis anymore.  Now all we are waiting for is for Everett to learn how to eat.  He is receiving 40mls (1 1/3 ounces) of breast milk every three hours.  He is tolerating it pretty well but this week has begun to show some signs that we have pushed him too far too fast.  He is pooping a little too often and doesn't seem very interested in drinking his food.   On Saturday, Zac and I both fed him from the bottle and he just wasn't having it.  He would cry, throw is head from side to side, and then spit out all the milk in his mouth.  It was frustrating to say the least.  I went home in tears and Zac broke a sweat just trying to feed him.  It is unbelievable that someone so small can make you feel so totally incompetent!  But after some pep talks from his nurses and our mothers, Zac and I returned the next day to try again.  Everett did all the same stuff.  So one of our favorite nurse's, Sarah, decided to get Occupational Therapy involved again. 

The consensus is that the doctors have been too aggressive in advancing his feedings.  It isn't that Everett can't handle the larger volume feeds, but his little stomach is used to having small, continuous feeds and needs to stretch a little bit more.  The doctors have decided to hold things where they are for the rest of the week, give Everett a little break, then progress forward next week for the final push to full feedings.  The other issue has been the texture of the breast milk.  Before Everett's second surgery, he had been swallowing thickened breast milk.  The therapists use an inert thickener, which doesn't change the taste or nutritional content of the milk, to make it easier for Everett to control the amount coming out of the nipple.  After surgery, some of his nurses got a little excited and fed him regular, unthickened breast milk.  Initially, he did well.  But with these larger volumes, it seems that Everett gets too tired and ends up "drowning" in milk.  So we have gone back to half nectar thick breast milk.  This seems to have helped immensely as all report from his nurses are that he is guzzling the breast milk down and looking for more.  The plan now is for Everett to come home on thickened breast milk.  We will add the thickener to all his feedings and hopefully, while still working with an Occupational Therapist here at home, he will be able to tolerate regular breast milk within a month after discharge.  Of course, it is all up to Everett. 

It has been a hard week with some big points of frustration.  For me, I know that I've been frustrated with the doctors continually telling me what Everett isn't doing well, instead of being thankful for what he is doing well and for how far we've come.  Everett's poor, innocent dietician got an earful from me yesterday, when I told her that I was tired of hearing everything that is wrong with my son.  But I think sometimes it is easy to get distracted by what things make Everett different instead of focusing on what things make Everett unique and miraculous.

I would like this week's prayers to include thanking God for Everett's life, praising Him for all the amazing progress that he has made, and giving thanks for all of our answered prayers.  And that includes Zac and I thanking God everyday for all of you who are praying for him.  Without you, I know Everett's outcome would have been so different.  We are so close to the end now...we just have to be patient and know that Everett will come home at the perfect time, according to God's perfect plan.

With Thanks and Praise,

The Bollinger Family

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