Swimming, Friends, G Tube, Grandparents, Tummy Time, and So Much More

Swimming

The weekend before Nathan had his G Tube put in, we swam in the boys kiddie pool. This was the first time that Nathan was in it. He seemed to really enjoy sitting in the water with Daddy and Jacen. He couldn't stay very long though as we discovered his body temperature drops fast just like it increases fast when he is angry or outside in the heat too long. Jacen still loves to play and splash in the pool!

Playing

The Luft children came to play the Monday before we went to the hospital. We had lots of fun. Jacen and Hayden really enjoyed following Annie and Hudson around everywhere. Annie and Hudson really enjoyed coloring in the Cars Marker book.

Annie

Hudson

Hayden and Jacen

All 4! I never got a good pic of Nathan :(

Bath Time - The night before going into the hospital

We decided to try a regular bath instead of Nathan being swaddled. He tolerated it just fine!!! Jacen wanted to help or maybe get in. I am still not sure :)

Wednesday - G Tube Day

Before Surgery

After Surgery

Both of the following pics are right after we got to his room. The surgery went great. It only took about 15 minutes. Unfortunately about 11am he decided he was going to be angry because we wouldn't feed him. Poor thing didn't get to eat from midnight until 7pm. It was a long day!!!! He didn't tolerate his 11am meds on an empty tummy. They tried tylenol with codeine, but he threw it up. I tried the pacifier, but after a while he figured out it wasn't going to give him any food. He also had 2 other pain meds, but really he just wanted to eat. From 11am to 7pm he screamed EXCEPT for the 15 minutes that Dr. Higgins was there to check on him. So at 7pm, he got to eat 1 oz. That really ticked him off because he was still hungry. Then at 11pm and 3am, he was allowed to eat 3 oz. He was content for about 2 hours each time and then was hungry again. Kyle and I were exhausted and very very tired of hearing him scream, so when Dr. Higgins rounded at 6:30am, we asked if he took his normal 6 oz bottle at 7am fine could we leave. He did great, so we told the nurse who had us out of there by 10am. We wanted to be home for the next feed at 11am. Maybe I should also clarify that the tube was never tested in the hospital because Nathan WANTED to bottle. We didn't tell the nurses no one showed us how to use the G tube. So we called our Hospice nurse on our way home to let her know, so she could come make her visit. We proceeded to tell her that we didn't know how to use the G tube. She luckily knew how and showed us. THANK YOU HEIDI!!!!

Up close after we got home and gave him a bath.

Grandparents

My Mom and Stepdad came to take care of Jacen while we were in the hospital. They stayed to help out until Saturday. Thank you!

Jacen and Grandma went swimming.

Jacen convinced Grandma to spend many hours playing outside opening and closing that red door!!!!

This Week

Jacen loves to open and shut doors!

He will wedge himself into tiny spaces. Sometimes he figures his way out and sometimes he just gets mad!

We are trying to convince him to stand by himself and walk. Wow!!!! That is hard especially with Jacen who is so happy and content. In this picture, we finally figured out how to have him stand on his own. We distracted him with a little tape measure. We got the idea because during the day on Tuesday ECI let him play with one. Then that same evening I broke it. I better find another one fast.

Nathan

He has been so happy during the day and willing to bottle at feeding times. We have only used the tube twice since we have been home. He is allowed 30 minutes to bottle and then whatever is left we tube. So far since we have been home a 15 minute feed is normal and a 30 minute feed is long. Our perspective sure has changed. Before 30 minutes was a good feed, but a normal feed was 1-2 hours. He is sucking better and has less spit up. No one knows how to explain it except that it might be a growth spurt. We don't know for sure, but we are enjoying it. It allows for so much more time to play with Jacen, as well as Bumbo time, tummy time, stretches, etc, etc, etc with Nathan. We have also noticed that his clonous (involuntary shaking) in his legs has decreased. Overall he is so much happier. We don't know if all of this will last, but we are going to enjoy it while it does!

Sitting on the couch with his "boxing" gloves and tape on his legs from ECI.

Swinging

His Couch
So far he hasn't slept in it, which was the original intention. But he sure was happy Monday to sit in it, smile, and even "talk" to Heidi.

Tummy Time

Patches doesn't like to be left out. We think he thought if he laid on the mat we would pay attention to him.

Nathan Post Surgery Tummy Time

We have been propping him up to hopefully keep the G tube from rubbing on the floor when he scoots. We should be good to not put him on the pillow in a few weeks. He has tolerated the pillows quite well!!!!!