G-tube! It's time!

Today we arrived at the Cleveland Clinic's P20 Family Surgical Center at around 9:45am. Lily had nothing in her belly except Pedialite since 4am. She was calm and acting her normal self. After checking in and waiting for almost an hour I received a phone call on my cell. The woman asked me if we were coming to Liliana's MRI appointment. I just said, "You've got to be kidding me?" I called the clinic in the morning to get the time of surgery and they told me that she was to come to P20 for surgery first. She was not having the MRI first. Well, that was a huge mistake. She was supposed to to have the MRI and then the G-tube surgery. Obviously the right hand did not know what the left hand was doing. Well, once that got all straightened around we were finally on the road to getting the MRI done. We were escorted into a room where we had to answer all those millions of questions and then I went back with Lily and stood by her side while they put the mask on her face and began the sedation process. Once she was drifting off into "LaLa Land" I left and Bill and I began the waiting process. We did the usual, went potty, played on the computer, read, ate some lunch, played on the computer some more and then our pager went off. Well, the message said, "Surgery was in progress". It was approximately 1:15pm when it went off. Well, we knew that the MRI had to be done and now it was just a waiting game till the tube surgery was complete. At approximately 2pm they paged us again and said to report to the M20 desk. Dr. Mohr our Gastro doc was their and she told us everything went very smoothly. She lead us back to Lily and of course she was crying. She was definitely in some pain. They gave her some fentynal (sp?) to help with this and then they watched her vitals and got her cleaned up. Let me add that throughout the day we saw many old friends. It was almost surreal. It made me think back to the heart surgeries and how we practically lived here for 3 months. The sites the sounds and everything just bring me back to that time. Well, thank goodness we are only spending one night here.

So here we are once again back in the poooooooodddddddd life again! Makes me want to sing. Just kiddin'. Well, when we first arrived in M40 bed 8 (many of you can relate to this section of the hospital LOL!) Liliana was very fussy! We couldn't tell if she was in pain or if she was hungry or a combination of both. They will not allow her to eat for 6 hours so that is just plain rough for a baby. They gave her at least 5 doses of fentynal (sp?) before she even came up here to the floor. She just seems to blow right through pain medications, always has. They tell me it's a Ds thing. They then gave her some tylenol (yeah, right?), didn't even phase her, then they finally ordered more phentynol (give me a break here I'm trying) and gave her another dose around 6:00pm. She finally fell asleep in my arms and woke up about 7pm. Whew! Now maybe we could try to get a bite to eat. Nope! Daddy had to bring it up to the pod. Didn't want to risk putting her down and then her waking up.

So, we just talked to the 3rd shift nurse and we are anxiously awaiting her return with Lily's first feeding by G-tube! Granted it will not be her high calorie Nutramigen milkshakes she gets it will only be Pedialyte to start but at least it's something. They are also going to start her continuous night feeds at 10pm. Can't wait hopefully she will go to sleep. This day can not end fast enough for me. Bill is planning on going home at some point, while I am going to tough it out here on this very uncomfortable couch for the night. Hope I can get at least a little sleep! More updates soon...