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Update

Monday, November 9, 2009

It's still hard to believe that we are home...all of us.  After 38 days in the NICU, we finally get a reprieve from the hospital for a short time.

We are really enjoying having Bennett home.  He's a very good baby, mainly calm and easy going.  Most of the time he just sleeps.  When he is awake, he is content to be held, swing in his swing or just look around.

Oliver is doing a very nice job with him.  We mainly pretend to "ignore" Bennett when Oliver is around so that he doesn't feel replaced.  However, there are usually enough adults around right now that Oliver can be easily distracted when Bennett's care does become our central focus.

We try to praise Oliver for being a good big brother.  He likes to give Bennett his "paci," turn on Bennett's nebulizer machine, push the "music" button on Bennett's swing and climb up to watch Momma care for Bennett.  The only issue we're having right now is finding Oliver has crawled in Bennett's crib or has climbed in Bennett's made-for-infants-only swing.

Bennett's schedule and extensive medical care needs have been most of our focus for the last few days.  We have so many medications and supplies to deal with.  Breck has been creating spreadsheets and Word documents trying to organize that which seems difficult to organize.  We have checklists, timelines and charts we are using as we know that Bennett's precise care is a matter of life and death.

Breck's mom is hugely helpful in lending a hand so that Brian can continue to focus on his schoolwork, in order to take care of our family.  Breck's mom is also fabulous about helping us think through how we can make this work in real life.

We've been utilizing the NICU's schedule of how to care for Bennett at home but trying to care for Bennett the way around the clock full-time highly qualified shift nurses at the hospital did is a tall order to fill.  So, we are learning how to make Bennett's care and schedule "our own".  We believe that when we meet with the CF doctors on Thursday, we will get a better idea of how to do all of this while living life. 

We have started overhauling cabinets and drawer space in Bennett's nursery and in the kitchen to make room for all the supplies we need.  And, we are beginning to learn where you can buy those supplies...Babies 'R Us is no longer our one-stop baby shop.

But overall, we're settling in with our new life - embracing that things will eventually improve - but accepting that Bennett's health will always be a concern...either way, he's ours and we wouldn't have it any other way.

3 Responses to “Update”

  1. If there is one person on this earth to organize complicated schedules and treatments, it is you, Breck! I know this is a bit daunting right now, but I know you are just the gal to get it done. Hang in there!

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  2. From Wanda Fields in Minden . . . Breck I have a hint for handy storage of smaller items. I used this when I cared for my husband for 7 years before his death 2 years ago. I bought a compartment (pockets) "shoe bag" and hung it on the back side of the door into the room (they come with clips to hang with) and put small items that we used daily in it. These have about 12-15 pockets and was so very useful. Just thought I would pass that idea on for creating more storage for supplies that you need very closeby. Organization is a MUST when we are caring for those who fully depend on us!!! Praying for you daily. Give Cindy my regards.

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  3. Those pocket sound great!!! *you can have high pockets that Oliver can't investigate) There are so many 'small' things that are so necessary and easy to loose...I know Mom (Cindy) is a big help... she's a great organizer herself...Love you guys.....I watch this blog daily...'Aunt' Norma

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