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!







  

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!