Appointment after Appointment....

Appointment after Appointment....

This week has just sucked.  I'm human and I'm going to admit this.   Every day we have had an appointment.  Also throw in Zander's 2 year check up.  Its alot!  Poor Mike has to take Zoe to the cranial band appointment on Thursday.  This week just is grueling.   Nothing phases Zoe though.  Always content, always has a smile on her face.  She really brightens your day!

We went to Ann and Robert H. Lurie Children's Hopsital (f/k/a Children's Memorial) to see Zoe's pediatric surgeon (who did her duodenal atresia surgery).  This hospital is AMAZING for kids.  Its like Disneyworld for sick kids. 

When we walked on the 7th floor, Zoe got alot of compliments on her helmet.  The nurses were ooing and ahhing over the velcroed bow and all her hair.  She weighs 17.2 lbs, and just over 27 inches long.  When Dr. Madonna came into the room, her eyes lit up and had a huge smile on her face.  She couldn't get over how big Zoe is.  She said we're very lucky due to her being a heterotaxy child, and having intestinal issues.  She's clearly enjoying food!  She listened to her heart and said her murmur is so distinct and still very loud.  She knows we meet with cardiology in early August.  She told me to expect heart surgery in the next year or so as they don't usually like to wait to close the holes past 2 years old.  And because of where the VSD hole is located (above her tricuspid valve), it will have to be closed.   But we received good news, one less doctor to visit in the next few months.  We got the 6 month clearance from Peds!  YAY!!!!  Dr. Madonna said if all is good come January, it will be yearly check ups from now on.  As long as she's eating and pooping, there's no need to see her.  She will always be kept in the loop with cardiology.  And if we have to ever take Zoe to the ER (if she has a fever of 101.4 or higher) she will have to be notified.  That's one down side of having a child with heterotaxy.  Since she's polysplenic, but funtioning as asplenic (no spleen), she will always have to go to the ER for any fever she may have because her spleen isn't functioning properly.  She will get the common cold, but throw a fever in the mix, ER here we come. 

Next appointments are cardiology and her 6 month check up.  Other than that we're just trucking along and enjoying summer (which is going by entirely too fast).

I saw this from another heart mom's post....which made me cry.

Did you ever wonder how the mothers of heart babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

Finally, he passes a name to an angel and smiles. "Give her a heart baby."

The angel is curious. "Why this one God? She's ...so happy."
"Exactly," smiles God. "Could I give a heart baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I am going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

God smiles. "This one is perfect. She has just the right amount of selfishness. "
The angel gasps, "Selfishness! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.

I will permit her to see clear the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."