Sheesh!

Okay, so it's been awhile!  I didn't realize it had been this long since I looked at the ol' blog.  Well, we're back!  Mac is doing well :)  He had a follow-up with Dr. Gruber (no scans, so no real information) and it was a great appointment.  We go back mid-March and will have CT scans before that appointment to see how things are shaping up in the ole' melon.  He'll get his eyes looked at on the same day, and they will dilate them at that appointment.  I'm excited to see what the expert thinks--he seems to have made great progress since we started patching!  There's been lots of other little appointments here and there, but none that amounted to much, so they didn't rate a post :)

Except for...feeding issues!  The trickiest of all the issues, if you ask me.  So if you've kept up on your reading, we learned in December that Mac swallows weird.  This probably explained why he didn't really eat much--his volumes (the total amount he takes over the course of 24 hours) hasn't changed since he came home from the NICU as a little 6 pounder.  So, he had great weight gain for awhile, and had us all fooled.  But then he grew, and plateaued because he would need to take in more volumes to continue to gain weight at a larger size.  So, armed with the information from the swallow study, and the newest of his labels (failure to thrive), we set forth on a journey like no other with our speech therapist.  We tried every bottle under the sun (well, apparently not every bottle...but trust me, it was a lot of bottles) to see if any different nipple type would encourage him to eat more at one time.  Nope.  In the meantime, we were increasing the amount of calories in the breastmilk in order to make sure he gained some weight (he loses weight if his milk isn't fortified).  This didn't solve the problem of his extremely low volumes, but at least he wasn't withering away in the mean time. 

The next step in this process was to go to a "feeding clinic" appointment.  There, a dietician analyzed his diet (I had tracked everything for the prior 3 days) and made recommendations based on what she found.  He and I were both observed during a feeding by a speech therapist (his usual one) and an occupational therapist who specializes in feeding difficulties.  The dietician basically said that he wasn't taking in even close to the amount that he would need to be at even a "maintenance level" for fluids.  Her recommendation was that if we couldn't significantly increase his volumes, that we needed to put in a gastrostomy tube for feeding.  We knew this had been on our radar for awhile, but it was still a little bit of a punch to the gut to hear it from an expert.  The OT and ST observed us during a close approximation of a normal feed, and didn't have any recommendations outside of everything we'd already tried.  However, our ST still wanted to give him some more time, so we were given 2 weeks to get him eating.  In the meantime, I knew we had a follow-up with our pediatrician in the days following the feeding clinic appointment, so I wanted to get his opinion on the dieticians assessment, and if he thought we needed the tube, to get the referral process started (since we all know how long that can take sometimes).

So yes.  We met with our (amazing pediatrician) and I basically told him that I didn't want to think about this anymore, that I wanted him to make the decision and just tell me when and where and what to show up for.  He said that was fine by him, but he didn't feel comfortable making the decision until he'd consulted with a pediatric gastroenterologist.  So, he faxed all Mac's records over to someone in Spokane, and they talked over the phone, and it was relayed to me that everyone agreed it was time to do something about this.  So, the referral was sent over to a pediatric surgeon to have a feeding tube placed.

All right.  That catches us up to today--we met the surgeon, and he was wonderful.  Incredibly knowledgeable and didn't treat me like a fool (which is always encouraging).  He had great answers for all my questions and concerns, and has done over 4000 of these surgeries (and has actually conducted a case study involving shunt infection rates in hydrocephalic children with g-tubes, go figure).  So yeah, he knows what he's doing.  So, Mac is heading in for a new tube in his belly on Friday.  We will be so glad to get it over with.  We are hoping that it will be placed laprascopically, but there is a chance that he has too much scar tissue in his little belly from all his previous surgeries, and he will have to have the full open surgery.  We are planning on two nights in the hospital, and will get all trained on the equipment that comes along with it, and caring for it while we are there.  Most parents I've talked say its a little overwhelming in the beginning, but by the end of the first week, it's second nature.  I'm not too worried about it--I've done my reading :)

So there you have it--by the time Friday is over, Mac's sweet belly will look a little something like this:


  Except he won't wear pink, or have that freckle.  And also, he has scars on either side of his belly button already, so its not as though we're ruining his ab-modeling career.