Home sweet home

The past couple days have been exhausting. We're trying to get a routine in place to get Gabe on as normal a schedule as possible. I think he was in shock the first day home and didn't sleep much. He did take a long nap today. He just fell asleep as Justin was reading to him (I think Justin likes storytime more than Gabe). The problem is, he wakes up as soon as we place him in his crib. He wants us to hold him or at least be near him all the time or he throws a fit. I think he was spoiled a little bit in the hospital...how could he not be spoiled?...we are paying the price now. We are giving him feeds through his Gtube over an hour 6 times a day. That means overnight, we start the feed at 11pm, end at 12am, start at 2am, end at 3am, start at 6am, end at 7am. Waking up 5 times per night to operate this pump has been difficult. I'm going to try to cut out the 2am feed and add the volume to the other feeds and see how he tolerates it. We'll work on condensing the feeds to bolus over gravity in a couple weeks. We also have to change Gabe's dressing on his chest twice a day. He had a suture that became inflammed and scabbed. They removed the scab at the hospital so he wouldn't get a skin infection. We have to clean it with soap and water, put some wet gauze in the area along with ointment, and a dressing over that. He screams during the dressing changes. We offer him a pacifier when he feeds and dip the pacifier in formula to get him use the idea of sucking when getting full. We try syringing tiny amounts of formula into a nipple. The most he has ever taking with this is 7ml. He gags alot. With poor muscle tone and reflux, feeding from a bottle is difficult. Often times babies like Gabe go from tube feed to baby food or sippy cup. We'll be trying a little rice cereal in the coming weeks. We are also doing exercises to help strengthen neck muscles and reaching for objects. Talk about a full time job. The exhaustion is totally worth it....so happy to be home. I'm excited for Halloween tomorrow. Stay tuned for pictures.