Survies to Ponder

I've had two extensive phone surveys within the last 4 months about our stay and decision to chose PCMC, which have gotten me to pondering.
And holy smokes did I almost start to cry tonight at the end of the 25 minute chat.

Most of the time I think I'm healed, over all the trauma, but then I get sudden flashes of hard moments in the hospital.
Or in tonight's case a very peaceful memory...



... It was a hard first few days after Eli's (age 4.5 months) 2nd surgery, the Glenn Shunt.  It's kind of shocking to see my child's beautiful face double in size because of rerouted blood flow, and the pressures not yet stabilized.  And he's in pain, even with medication, because the pressure makes a "terrible, worse than a migraine head ache," they say.
He's just a baby.  My son, that I can't hold and comfort.

This specific day is hard.  Typically the nurses are out of this world amazing, but Eli's nurse on this particular day was... well, we know she doesn't really want to be there.  Close to retiring, and we can tell.  Matt and I spend an enormous amount of energy that day, doing our best to comfort Eli, help him eat, help him be comfortable, and we need a break.  It's shift change anyway, so perfect time to leave (since we must) and grab some food.

We are fed, we are rested, and we are ready to check-in on Eli and say goodnight.

I go down the hall, at first noticing the peace and quiet.  Soft dim light is emitting from the room, and we peek inside:  a small woman is sitting at her table going over notes, the room looks organized, and Eli is asleep.  I notice that he has been sponge bathed, he's in new pjs, and he's resting on his side (compared the back which he's been on all day).  Peace fills my insides, and I sit next to Eli's bed and just watch him...



... This memory is why I'm an emotional wreck tonight.  Wow it's a lot of tears!







  

He's Got Pounds!

70th percentile, baby! 

Mr. Eli has weight.  My heart baby, 3 years and some months at 37lbs, is in the 70th percentile in the weight charts.  (But 40th in height, haha.)

Compared to other heart children, Eli has always been heftier.  Indeed, every time we went in for check-ups the nurses and doctors say, "Wow!  Look how big he is!"  and ask, "What's your secret?"  And this was being in the 40th percentile in weight.  

Oh, and my secret?  He really likes cottage cheese, hot dogs, and pasta--though not all mixed 3 together!    

But the best part of this story is: he beats his brothers in their percentile weight! 

That's right, Amazing Eli is gaining weight better than his 6 yr old brother and 2 year old brother.  Good stuff, right there. 

Last "Out West" Check-up

Yup guys, we're moving.
Moving to the Southeast Coast for a few years, and going to soak up some nice warm sun and elevation just above 0 feet!

Eli had an appointment last week, it was his last with this doctor.  Eli rocked the appointment, probably because he only needed a chest echo.  Sitting in a dark room and watching a favorite show while people take care of you isn't that bad of a gig.
It's very strange though, that we are leaving.  The "intermountain West" means a lot to us, and we have had nothing but great experiences with the doctors and nurses out here.  Truly have been blessed to receive this extraordinary of care.

Here's how Eli looked on Monday:
- weight: 15.7 kg
- height: 95 cm
- oxygen saturation: 92%*

*Since Eli has been dealing with a cold his sats were a bit down.  He usually is a 94%.  Holy smokes could we tell he wasn't feeling well.  Dang, when this boy doesn't feel well he is one emotional guy.  Today he has finally been acting like a happy guy.  We "lub it!" (as Eli says) when he feels well.

When Eli doesn't feel well he looks like this:
(Someone threw goldfish in the tub.)

And when he's in a good mood, and feels well, he looks like this:

I Worry

Still.

Even after the Fontan, I still worry about Eli and his health.  It is always present on my mind.  And I'm surprised, actually.

Before his last surgery I thought that once it was over, wow, no more anxiety!  We'd be free!
Not the case.

Eli is a big, beautiful boy.  And he's three now, which is a big mile stone for me and my husband.  Eli's third birthday always seemed more like a beautiful idea than a probable reality.  I was very weepy on his birthday, and all the emotions that came with that day--of remembering his birth and all the crazy that went with it--was almost too much to handle.  It really made me realize that once one becomes a heart baby parent, he/she will always be a heart baby parent.

Having Eli changed me, for the good I believe.
But sometimes I wish I didn't "feel" so much!

Most Beautiful Thing

Almost 3 year old Eli had a fit tonight. And I all I could think was how beautiful and pink he was. 

To a mother of a heart baby I don't think there is anything more beautiful than pink lips, pink nose, pink hands, and pink feet on the crying heart child. 

Christmas Sickness

Yet again, we were sick on/during Christmas. EVERY Christmas Eli has ever had he has been sick on, just before, or just after Christmas. What a tradition.

This year it was a cold and a fever. We actually saw the cardiologist just before it really set in, and she was worried about his low 90s saturation. Imagine that--being worried about a 90s saturation. Though if the low 90s saturation wasn't virus induced then it would have had serious implications... so a week later we went in to check his oxygen at it was back to mid 90s.

So here's Eli, a day after Christmas 2011, totally not wanting to take a picture because he feels awful.

And let's look back on Christmas' past. Here's Eli for Christmas 2010, on Christmas Eve, worn out from throwing up and fever. This 20 month old crashed on the floor and couldn't move. 

And Eli on Christmas 2009, 8 months old. We actually went into the ER this December 30th (we were visiting out of town and didn't know where to go but the ER) because he was showing signs of heart failure. Modeling (very vain-y), extremely pale, and no energy. Fever wasn't present, so we didn't know what was going on. 

His cheeks and nose are rubbed raw because he kept rubbing his face on the hospital sheets. 

Let's hope for a healthy Christmas Season for 2012!

Preparing For A Surgery

We knew before Eli was born that he had a heart defect, and that a surgery would happen within his first few days of life (April 2009).  This we prepared for by ____ , and appreciated it because ___ :

• Touring the hospital(s), many times. He was born at University of Utah, and had his surgery(s) at Primary Childrens Medical Center. 
• It was great to see each room, and understand each phase of the schedule. More information, the better!
• Setting up a place to stay during the surgeries. We lived 3 hours away from PCMC, and didn't have any close family by the hospital. 
• We learned quickly how awesome the Ronald McDonald House was... It felt comfortable, and a place to go to a relax. Food always available, help always near.
• Getting family members to stay with us (me and my husband), for the first few days before and after the surgery.  
• It was really nice to have at least one of our parents near, so that we could--in good conscious--take a break from the hospital room. Those breaks really helped us recharge our batteries. 
• Buying some new, cute clothing. 
• This may seem weird, but it totally helped me out... I just gave birth to a baby who I couldn't hold or cuddle, and it was sad. Having new clothes, which were comfy but stylish, helped me feel in control and put together.

........................

Eli's next surgery was when he was four months old (August 2009). Preparing for this one was pretty much the same as before. Though I had tried to get Eli to be a pacifier taker, it didn't happen. If that would have worked out, things would have been a little bit easier. (Self soothing at 4 months old, and all.)

........................

Eli's last surgery was when he was 2 and a bit years old (August 2011). This one I had been preparing for since his previous surgery. It was hard to imagine a 2 year old sitting peacefully in a hospital bed, being okay with chaos and new people all around. This we prepared for by ____, and appreciated it because ___:

• Purposefully giving him a blanket to be attached to. 
• Since he was 18 months old he had the same blanket to sleep with every night. This blanket became a favorite, and we definitely took it to the hospital with us. It never left his side, and it helped him feel in control when things were hard.
• Purposefully did not start potty training.  
• Right before he turned 2 years old we found out that he was going to have his next surgery 4 or 5 months later. I did not start potty training so that he wouldn't be confused during and after the surgery. 
• Purposefully consistent with his diet. 
• I tired to keep basic favorite foods that Eli loved always present. Mac-n-cheese, yogurt, cottage cheese, mashed potatoes, Cheerios, Gold Fish, grilled cheese, pancakes. These were a staples, on purpose. After surgery Eli he didn't want to eat too much, but needed to in order to show progress and self sustainment. After lots of tries we were able to get him to eat Gold Fish and cottage cheese... and that's pretty much all he ate for days afterward. 
• Asking my mother to stay with us for the whole hospital visit. 
• By this surgery we had three kids, and needed Matt's parents to look after our two other boys (one older than Eli, and one younger). We asked my mom, in advance, to please stay with us in Salt Lake to be our helper. So grateful we did! It pretty much worked out that me or Matt took the night and morning shifts, and my mom took the afternoon and evening. It was a 3 person rotation, like this: I stayed with Eli at night, Matt would come early in the morning to relieve me, then my mom would come by at 10 or 11. I think no one got too overwhelmed, and Eli always had someone near that he trusted. 
• And of course, cute clothes.
• By this surgery I knew having an outfit that I felt good in helped me out so much. Probably sounds way superficial, but it's true. And important enough for me to put it down twice in this post!