Sep
22
2008

14th Day Post Surgery - 9:30 AM

14th Day Post Surgery - Monday September 22, 9:30 AM

Today I feel like I have abandoned my family.  I am currently attending a conference in Las Vegas and will be here until Tuesday night.  I did take the night shift for the last couple nights so that Afton could rest up and be prepared for my absence but I still feel guilty.  Afton has been keeping me up to date with text messages and has also been emailing pictures to me so I still feel like I am in the loop.

Afton has had more success in feeding than I had under my watch.  I received two texts stating Lilee ate 25ml in two consecutive feedings.  This is 10ml more than she was getting when I was feeding her - Incredible!  We are still not there yet however we are looking for 60ml in one feeding.

An X-Ray this morning still shows that her lungs are "fluffy".  So they want to watch that.  I am not quite sure what fluffy lungs are but I will find out and re-post that information.  They can also see a pocket of fluid which is the same pocket the nurses drain 35ml of fluid out of twice a day.  We are hoping that goes away in the next couple days as we are already talking about options.  I am going to spend some time today and find out what happens physically when the thoracic duct is surgically closed.  That seems to be the option that we will end up with if we cant get it to stop. 

One exciting thing that Lilee has been doing is smiling. Afton and I are aware that she is probably not doing it voluntarily and that its probably gas but its pretty neat to see.

Comments (3) -

Well Larry, I guess Las Vegas is one of the better excuses we can use--better than Fargo--right?  I feel it is kind of my duty to do my part in keeping your spirits high--hope my attempts are working a  little.  While this drama plays itself out, I will continue to pray for your family--and can imagine what the number one topic at the dinner table is these days--that is if you have time to eat dinner.  At least you have a man of expertise around to explain the strange terminology that you are hearing every day.  Remember not to dilly dally around those casinos when your conference is thru--I do trust you, Larry--Bless you, Bud, Dan Boone

Hi Larry,

I wished to know about your absence earlier.  I believe I could help Afton both days and nights during your absence... Well, I know you don't want your family to become someone's burden, but we are ward "family," right!  Anyway, you can call us anytime whenever you need us.  We love you and your family.  We appreciate this web site.  It makes your family very close and closer to not only Bob & my hearts, but also so many ward members'.  Anyway, please let us know what is "fluffy" lungs.
God bless you.

Shoko

Hi Larry and Afton, I must say that when your site went down for a couple of days, I had a little panic. But it is so great to hear about your sweet babies progress, she is such a miricle and I'm convinced that Lord had your family chosen for this sweet angel. You are remarkable people and great examples to us.  Ren is out of town working so if you need anything please call me. Kids need rides, errands ran, grocery shopping, anything at all, I would love the chance to help your family out.  We are praying for you!!
Love and God Bless You,
Julie

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About the author

I am the proud father of 6 Children (5 girls and 1 poor boy).  Our second youngest daughter was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS).  In a nutshell the left side of her heart never fully developed.  Hopefully this site will chronicle the progress she is making and everyone who is interested can keep up to date.