1st real look

Last Wednesday the docs had their first real look at Gideon's heart.  We drove up Tues evening cuz they needed to see him Wed at 6AM.  The hospital put us up in a motel for free.  That was cool.  And it was a pretty nice hotel.  Couldn't totally enjoy it.  A:  Because of the reason we were there and B:  We got there like 11PM.

The next morning we brought my sweet angel in and handed him over to the crazy Asian lady nurse who I swear weighed less than Gideon.  She was definitely a loose cannon but I still liked her.  I like people who embrace who they are!  And she embraced!

It was supposed to be a 2-4 hour procedure.  A heart cath.  An angiogram.  SIX hours later the doctor comes out and says, "the longest and hardest part of the procedure was getting his IV in.  So we had to put the line in his neck."  Then left.  I was like, "uhhh, hmmm. I just want to know if I'll get to be his mom here on Earth or not."  Half an hour later, crazy Asian comes out and even though she must've been 60 (OK, she looked 60, so that'd put her at about 100 years old) she FLEW down the hall.  You couldn't keep up with her if you sprinted.  And it wasn't even an emergency.  She was just some dynamite speed walker.  She kept turning her face at us and saying, "Come!  Come see your baby!"

Poor Gideon.  He was all banged up.  His cry was so weak and pathetic cuz of the that tube thing and he hadn't eaten for SO LONG.  I just held him.  Ohhh how I love holding him.  So much of him to hold!  I love it!  And he's so incredibly sweet!

After about an hour in the post op room, his doctor finally came.  It's such a trial of your patience there.  It's like when you're eating out and you can't wait for your food to get to you.  That's like the cardiologist.  Any hint that the doctor could be the person opening up the door, your heart just skips a beat, hoping it's him.  Most of the time it's not.  It's a random parent or nurse.  And you get so disappointed.  But then when you see him, at least for me, the adrenaline picks up.  I was willing him to come to me. Like when the kitchen door opens and the guy comes out with the round tray of food.  You're just willing that food to be yours.  If they go right by, the disappointment is huge.  When they stop right in front of you, well, you know the feeling.

Dr G. walked over, sat down in front of us and said, "OK, ... first let me show you what I saw ..."

I'm not kidding, my heart plummeted.  My insides turned to ice.  He started fiddling with the computer, looking over his notes.  Finally I said, "IS IT GOOD NEWS OR BAD NEWS?!?!"

And just like that, Dr. G. said, "it's good news."

So here's what they found.  The coarctation of his aorta valve is actually more narrow than they had thought.  They thought the narrowing was bigger, but no.  Smaller. 
The PDA was still opened.  For normal babies, it shuts.  Not Gids.  But they THOUGHT it was super small.  Nope.  It was much bigger than they thought. 
The GREAT news however was that his right ventricle, which is smaller than the left, isn't THAT MUCH SMALLER.  That was awesome news!!!!  That meant they CAN FIX HIS HEART!! 

Because of the other things however, they have to fix his heart in stages.  He wants to schedule a surgery to fix the narrowing and the PDA sooner and then a month or so down the road, the AV canal.

I still can't believe I'm a parent of a child referred to as "critical cardiac failure" and pulmonary hypertension.  Though regarding the latter.  Doc is hoping that the lung issues are a direct result of his heart and that once the heart is fixed, the hypertension will resolve.

It was around 4 when we finished talking with him and ready to go at 5.  But of course Gids developed a clot in his leg, so we got admitted.  And they found out he had 2 types of viruses, so they put us in quarantine.  Which ended up being fine because we got another free hotel stay and Gideon was in a room all by himself.

I use the word "fine" very loosely.  Walking the halls of the hospital, the thought, "I can't believe this is my life" comes and goes non stop.  I really can't.  I can't believe that we've been there for so long and so many times that nurses REMEMBER him.  I'm used to active, healthy kids.  When it comes to hospitals, it's only the labor and delivery wing I utilize and only for 1, maybe 2 days.  Not the NICU, not the PICU.  I'm used to midwives, not cardiologist.  Normally, if I'm ever at hospitals, it's me walking past rooms, taking quick glances at the people sleeping in their beds.  Now it's the other way.  I sit there, holding my baby, looking out from my room, seeing people walk past, as if I'm a zoo animal or something.  I know what they're thinking.  "Poor poor lady.  Poor poor baby she's holding"  I know that because I thought that.

Gideon handles things so much better than I do.  He loves staring at his nurses.  It's almost as if he's flirting.  He just stares and wiggles around, blasting out poops as if that's the way to make the ladies swoon.  He hates having his blood pressure checked but LOVES it when his nurses hold him.  He also loves it when they dip his binkie in what they call "sweeties."  It's basically syrup.

He's a strong kid.  That's the constant feedback we get.  How strong he is, "especially for a baby with downs AND heart failure."  They're amazed at how well he engages others.  He loves people. 

But he loves me most.  Nothing can comfort him like I can.  He can be so upset and all I have to do is hold him and talk to him and immediately, he settles down.  My heart just soars every time this happens.  I love that he loves me.  That he needs me.

Because the feeling is so incredibly mutual.  Ohhhh how I love him and need him.  Heavenly Father gave me the biggest compliment when He gave me to Gideon.  Not because He "trusts" me with Gideon.  But because Gideon is such a strong, valiant, mighty and loving son to his Heavenly Father.  And I get him?!

Already I have had some very important relationships strengthened because of him.  Already I have become a softened person because of him.  Already I have become a more dedicated wife and mother because of him.  Gideon is my buddy. 

And his cardiologist said he can fix him!