Saturday, January 23, 2016

the hotel on the hill

Monday Steve, Hank, and I will be heading for a vacation at Primary Children’s Hospital.  We anticipate to stay about a week and hope to be home earlier if possible. 

But first, look at this letter!  Hank was the face of the year end fundraiser for The American Heart Association!  These adorable letters were sent out all over the country.  Super cool!  His cute face is here too! 


Hank had his monthly appointment with his cardiac team this week and they felt it was in his best interest to go there.  Unfortunately, after calorie packing Hank for more than a month my kid gained 0.2 kg, which is practically nothing.  He is still a shrimp.  The major problem with this is we are unsure why he won’t grow.  Is his heart so sick it won’t allow it?  Is his development issues causing major nutritional issues?  These are the questions the doctors hope to find answers to this upcoming week. 


The plan is to check in on Monday and get a peripheral IV line which will eventually upgrade to a central line.  Hank will be started on milrinone, a drug that will improve his heart function.  He will also start on tube feedings with a long term goal of continuing those at home.  Once they see how Hank does on these interventions, we are hoping to have a longer-term definitive plan for our kiddo. 

Good news though!  While we are there, Hank will hopefully get tubes in his ears.  His ENT has agreed to do them bedside at the same time that he will be getting his central IV line.  Hooray!!

Don’t worry about Drew.  He will be spending the week with Grandma and Grandpa and keeping up with his normal routine.  We will miss him!!


Wish us luck!!


Wednesday, January 13, 2016

grow baby grow

Hank was suppossed to go to Salt Lake yesterday and get tubes put in his ears.  Since October, he has been plagued with 5 (+) ear infections.  He has been on 5 or 6 courses of antibiotics (I can’t remember the exact number).  So, do you know what antibiotics do to my kid, and maybe yours too?  Combine it with 6 other oral syringes (filled with bitter tasting medications) we force into his mouth twice a day (12 total) + a moderate oral aversion + food selectivity/texture problems and you end with multiple unwanted upchuck episodes over multiple days.   Today he puked twice. 


But seriously.  It’s hilarious, but it’s not.  We are on the verge of moving to more intensive feeding care (and possibly the unmentionable list) with our heart failure cardiac team.  Meaning, Hank won’t eat and Hank won’t gain weight so Hank is not healthy enough.  He’s a little shrimp.  He has been loosing weight over the course of the last months.  Hank’s cardiologists are trying to figure out if this is because Hank doesn’t eat, or his heart isn’t healthy enough to allow him to grow.  So, since our last appointment, Steve and I (and the rest of us that take care of Hank) have been trying to proove to his heart doctors that he just isn’t eating enough.  We hope it’s not his heart.

IMG_2522 (1) 

So now, everyday, we count calories.  Hank should be eating ~ 1600 calories a day according to his dietician.  Sheesh!  That is a ton and it’s virtually impossible.  Our pantry is filled with any type of junk food we can get Hank to eat, and it is challenging. 

But now we have a small dilemma!  Hank was suppossed to get ear tubes but he can’t.  His cardiac team won’t okay his procedure because they feel his heart cannot handle any anesthesia.  Let me explain:

Terrible eater with a bad ear gives us a worse eater.  He won’t eat, so his heart won’t get better.  If his heart isn’t better he can’t get ear tubes.  If he can’t get ear tubes, we have more ear infections.  Then he won’t eat.  Ughhhh!!!!



At least we have these babies to tide us over until then…

Oh and good news, since his last appointment about 4 weeks ago, he has gained at least a pound. 

Grow baby grow. 

Wednesday, January 6, 2016


So crazy how life flips us up and down like a teeter totter.  Before I get too dizzy, I usually try to decide how I am going to feel about it and try to keep going.  Luckily the good moments always outweight the not so good.  Really though, check out these pictures.  How many look bad to you?  Maybe a couple.  But really, they are good and just what we need, even if they are hard. 


They make us strong, physically and mentally.  Hooray for the ups, and the downs!!

(but really, aren’t my kiddos the cutest?)

Monday, January 4, 2016

Thanksgiving Plus a Month

We have been a busy bunch since Thanksgiving and are still trying to get caught up.  Here’s the short version…
A little turkey.  

1st visit with Santa this season.  


Always trying to stay up.  

Zombie with a bow tie.  


Little elf.  

Christmas Advent. 



Dress up.  


2nd Santa Visit.  


Heart Failure Clinic.  



School Festivities.  

Results of new medications.  

Twinners (unplanned).  


Snowman Loves.  

Best friends and Aggie games.