January 5,2016

Our seven year old Kyle is excited that Koby is going to pull through this. So here is his excitement dance.

Koby continues to amaze us. He's making progress a little each day. Today they took out the central line that has been in his belly button. Before they could do that they secured an IV in his arm. He will receive less and less pharmacy prescribed fluids and lipids now that he's getting breastmilk. The breast milk is given through a line they run down his nose and directly into his stomach. Yesterday he was given two 5ml feeds of breast milk through his tube and he handled it well. Yay! No throwing up or signs of it upsetting anything. This is how they prime his digestive system giving him just a little bit at a time. This also gently starts the process of weaning him off and getting him more independent of the machines he's been on.

The speech pathologist worked with him for a half hour. Koby was ready to try 10ml so they put it in a bottle with a nipple so she could work with him a bit before they poured most of it down the tube in his nose. First she brushed his lips with her fingers trying to see if he'd react. He did by making funny faces. Next she put her finger in his mouth to try to get him to roll his tongue into a "U" shape. Then she tried to stimulate a gag reflex by putting her finger in the back of his mouth. Next she put a few drops of breast milk on his lips. When he liked that she put a few drops in his mouth. Before long she had him smacking his lips and taking a few sucks but with very little milk so he couldn't aspirate on it and develop pneumonia. We will have to work with him to help his reflexes get stronger. We are discovering many of them are present just not strong enough yet.

This was all so time consuming and exhausting to see. Every little thing that has been so second nature to our other children from their birth is a long drawn out process for Koby. It makes us realize how much we take for granted. He was quite sleepy all day and now after witnessing how much work it was just to get him to suck a few times I can appreciate why he's so wiped out.

The occupational therapist also worked with him today letting us know he really didn't have much neck strength and he's quite floppy. He sure can swing his arms and kick his legs though and pull off any wires or lines he can find to tug on.

While she was working the central line out which happened over a period of time Koby just slept! The central line is removed by pulling to a certain point, letting it rest for 5 minutes, then taking out a little more letting it rest some more and Etc. until it was finally out, this was to prevent a bleed out which is a huge risk since it's right by heart. We had no idea it was as long as it was. The line went in through what was left of his umbilical cord and then up to his heart so 6-8 inches long.

We took lots of preemie baby steps in the right direction today.