01 February 2013

About that heart...




This was written yesterday, just now able to post...

I'm not even going to try updating by saying what happened on what day at what time anymore.  I feel like we are fish in a fish tank and just have a window to see what i used to be very familiar with as the sun.  I can't even begin to imagine what it's like for the patients diagnosed with something that keeps them here for months and months.  Today was the first time I went and sat outside in the warm sunshine.  I wanted that moment to last forever.  I love outside and my brain was already starting to figure out a place to go for a run.

Then I was paged. 

Because the little fighter that Ezra is, knows you gotta eat and get a lot of nutrition to keep on keepin on with the good fight.  Smart little fella.  I could hear him mooing at me so back inside the fish bowl i went.  (I know, cows don't live in fishbowls.  My analogies make sense to me though :)  I'm so glad he's a good lil eater though.  That plus getting off oxygen is our ticket outta here.  We are now down to 1/4 of oxygen.  Oh just kidding, the nurse came in and turned him down to 1/8!  Its a good day.

Which reminds me, a few days ago we were down to 1/8.  This seemed like a good day.  The dr came in, all was good, she was about to leave and then listened in on his heart.  Now that his wheezing is almost gone, she was able to hear the heart more clearly.  She said she could hear a very slight murmur.  Just to be on the safe side we were soon sent down to get an EKG.  And let me tell you, before coming here I knew VERY little medical terms.  School just aint my thing.  So now I can sound a little more normal on what I know.  I know now that EKG is a sonogram of the heart.  I thought surely all is well, but how fun to see inside his heart.  Well that lasted forever and the longer they took looking at his heart the more we started to realize there must be something up.  Then the lady said she needed to go show results to the dr which clued us in a little more that they found something.  She came back and said the dr would be up later to our room to talk to us.  Bud asked if all was ok.  

She looked at us, held her breath, then said yes something was found but she couldn't say what.  

OH COME ON LADY.  

You just don't do that!  

So the walk back up to our room felt forever.  A bit later the pulmonologist (which now i know is a dr for chest stuff) came in and had just gotten off the phone with the cardiologist (which is a heart dr! see how smart this nice little hospital trip has made me).  She then brought in the nurse that was assigned to Ezra that day and they both came in the room and sat down. 

They SAT DOWN.  

No dr just comes in and sits down.  As if it was tea time or something.  My heart about sunk down to the basement.  She was comforting in how she explained it though.  So, Ezra has a birth defect.  His aorta, a valve... CORRCTION:  his main artery, not valve, ok so maybe I'm not learning as much as I should.  Anywho, that thing coming out of the heart, is too narrow.  All she could tell us at this point was its severe and needs surgery.  She couldn't really answer anymore questions.... how severe? when would surgery be? is it an easy fix? how will they fix it? will he be ok? how long until we can go back home to kenya? can we go back to kenya?!  That was just the questions i had within the first 60 seconds of her telling us this news.  

So we waited and waited and waited the next day for the dr to come.  I'm just not used to all this medical mumbo jumbo.  My brother and I were always healthy growing up and spent little time anywhere near a dr. and especially a hospital.  Finally he came in with his nurse practitioner.  They were easy to talk to but quite hilarious when it came to the sketches he drew.  He was superb at being able to draw upside down and they were nice fancy drawings.  It was a very detailed explanation of whats going on in Ezra's little walnut sized heart.  Bud later told me that he was thinking to himself how confused I must have been.  Why yes I was honey!  All I heard was something about this part and that part being like trees and these are like stringy things and blood flowing like a river.  Sounded like a nice patch of farmland with a road made too narrow to transport the goods out effectively.  

I could have used a simple color coded picture.


Thanks to pinterest, I found one :).  So that part labeled Aorta, the tube going down the back of the heart, is too narrow to get blood out of his heart at the right flow.  Ezra will get to go home and get stronger over the next month, then come back on March 20th for a consultation with the heart surgeon.  We hope to get him in for surgery quickly after that nice chat and get him all fixed up.  

Always a very scary thing to hear your newborn has a heart problem.  But after all we've been through and how closely God has been through it all, Him answering some very specific prayers, now is not the time to let the dumb devil get us scared.  So we continue to put our faith in the Great Physician.  And we are incredibly thankful to find this.  It could have been years and it could have been found through him not developing right.  But it's been exposed and can be fixed with him never missing a beat in growing properly.  I'm so thankful to be in this hospital too.  What an amazing place it is.  It's like the hilton of all hospitals in my opinion.  

We are absolutely humbled by all those that have supported us through this.  The love, encouragement, prayers, I mean, I have no words to express our gratitude.  Ezra is a restorer in many ways and God has definitely used this time to restore relationships even more and make them stronger, to show us our family and how much you all love us.  Now my witty-ness is gone and I'm a sappy mess just thinking about it.  I love y'all!  Keep on praying for our fightin gladiator.  If God is for us, who can be against us...

oh and p.s.  YES we will get to go back home to Kenya before summer :).  

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