So our official surgery date is Friday, July 17th - thank you John for your canny ability to convince people to do things - as a result the surgery "scheduler" somehow fit us in on Friday! Parker will go in at 2:30pm, Tyler at 4:00pm. The NPO isn't as bad as I thought it'd be - formula/food dc'd 8 hours prior to surgery, clear liquids up to 2 hours prior (Pedialite, clear juices, water). Not difficult for Tyler to have because we can gavage anything into him via NG tube, but I doubt Parker is going to drink any clear liquids. We may have a cranky-poo on our hands! We're going to "trial" some Pedialite before Friday to see how Parker takes it.
Today we saw our GI which ended up being a long, drawn out appointment - in fact, Parker actually fell asleep! Tyler gained slightly, but Parker really gained a good amount of weight, making the decision to place the G-tube a confusing one again. The GI began second guessing the decision and began discussing alternatives to try to increase his oral feeds. As my mind began spinning and heart aching, John nicely intervened and told her that we were convinced that placing Parker with a G-tube is the right decision because: 1) his growth has flatten two months straight; 2) he has a pattern of eating well one week, then doing poorly the next two or three; 3) although he is taking some solids, it's not enough calories to maintain a consistent weight gain; 4) with winter coming, both boys need to "beef" up to combat any viruses or bugs they may catch; 5) John goes back to work in August making July the ideal time for these surgeries. The GI's concern is that Parker is taking oral feeds and with the G-tube, they will more than likely go away. I was a bit emotional when I finally piped up (with tears intertwined) that I have spent the last month (or since our memorable Pulmonology apt) coming to "grips" with the fact that ALL of our efforts in getting Parker to eat are going to go out the window. THAT KILLS ME! BUT...I have to get over my selfish desire for a child that eats "normally" and understand that health is first - these first two years are VITAL growth years. John then asked her what she would do if Parker was her son - she responded, "I'd get the tube placed." Hello...why even bring up the challenge of not doing it? Just rip my heart out even more! This is already tough for me, I don't need to further question our decision.
I've recently been reminded that it's natural to have "visions" of what your children should be, what they should do. I knew when the boys were born, when my "dream pregnancy" was flushed down the toilet, that things were never going to be how I imagined them. I knew right away that we could have issues with their eating, their lungs, their overall health - I knew it! But when you see glimpses of "normal" you just grab them and hold on! Parker was going to eat like a "normal" baby - crave a variety of foods and maybe even act like he WANTS to eat! I'd pack fun kiddy snacks like goldfish, teddy grahams, cheese sticks and juice boxes when we went on trips. I saw it...I knew it was coming...the one without the tube... Not so fast, I'm reminded. Just because you see it that way doesn't mean it's going to happen that way. We all have a way of being knocked back into reality, don't we?
Anyway, we'll do our best to blog after the surgery and update everyone. I doubt we'll be able to blog until we're home again. I think we're staying at Sutter with the boys the entire time.
In the meantime...I'll post some "before surgery" pics before we leave!