We lost something today . . .

What happened today, prompted me to write the Micro-Preemie Handbook post.  If you haven't already read it, click here to read it first.  It's an essential part of the story.

After therapy today, I went to change both kids' diapers in the bathroom at the clinic.  Their physical therapist was helping me with the kids when she noticed something on the bathroom floor.  She pointed to the mysterious object and said, "Is that the door stop?  What is that?"  I look down and shockingly replied, "No, that's Cade's g-tube!"

Between him pulling on it all the time lately and me picking him up with one arm around the stomach since I was holding Camdyn in the other arm, it popped out.  The balloon part of it that holds it in his stomach had burst open.  I threw it in the trash and asked for a band-aid to put over the hole in his stomach.  The hole is very small (about the size of a belly button).

It was 12:15 PM.  I tried calling both the GI office and the pediatrician's office, but they were both closed for lunch.  That's how Cade rolls!  He learned his Micro-Preemie Handbook lessons well.  Do the unexpected.  He had to add in, "at the most inopportune time!"

When I finally reached the GI office, the nurse told me we needed to head to Dell Children's ER and soon!  The site would start closing up within the next 45 minutes.  We did not have any back up g-tubes at home to reinsert.  I had called the supply company about sending us an additional one when we used the last one.  I was told they can only send one every 6 months.  There's another stupid policy in this whole micro-preemie world! 

I asked the nurse about the necessity of going to the ER to get another tube when we hadn't used a tube since March.  She asked the GI doctor, and much to my surprise, he told us we could let the site close up on its own.  WHAT?!

She goes on to tell me to use gauze and tape to cover the site for the next couple of weeks.  She rambles off some very vague instructions and is ready to end the conversation.  Wait - I have questions.  To her, this is an everyday occurrence.  To me, it's my son with an open hole in his stomach!

This is definitely not how I had this planned, but what do the babies ever do according to my plan?  So, here's what Cade looks like now. 

The bandage looks much worse than it is.  We could probably cover the hole with one of those little circle band-aids, but this is how we were told to do it.  We are supposed to keep the area clean and dry.  Cade will be taking only showers for the next few weeks.  He can't sit submerged in water. 

We have an appointment the week of Thanksgiving with the surgeon to assess the site.  He will determine if it has closed on its own or if he needs surgery.  As stange as it may seem, I want him to have it surgically closed.  Right now, a stitch is trying to come out causing a bump around the site.  I know he is going to have a scar, but I want the scar to be pretty.  You can see in the above picture that the right side of his belly already has a big scar.  When the nurses removed the lead tape from his translucent, thin skin back in the NICU, it just pulled the skin right off.  He deserves a pretty scar.

I've been waiting a long time for this.  This is the first time since Cade's birth that he has been completely tube free.  He did pull his ng tube out on many occassions, but we always knew we had to put it back in.  This is different.  He's tube free, and there is no plan to put any tubes back in him or on him or anywhere around him!