Tuesday Night 1/30

My main man! He had a chubby day today! Not only did they increase the volume of his NG tube feeds, we re-started binkie training again today (oral feeds through a binkie) and he did FANTASTIC!!! Last week the goal was to get him to eat 3ml 3-4 times per day. Well, because it was all new to him, he never accomplished that. Then with his hiccup we had Saturday morning, that took him completely out of binkie training opportunities for the whole weekend and OT wasn’t available to come back and re evaluate him yesterday so he has had quite a bit of time off. What binkie training is, is using a pacifier that’s connected to a feeding tube and a syringe at the end to get babies to take oral feeds. He sucks on the pacifier and I push milk through the syringe and feeding tube into the back of his mouth then he has to figure out how to swallow that, while still breathing and not choking. He’s just over 2 weeks old now and has never had oral feeds (except about 30 min right after birth) so he doesn’t  have the natural reflex of it all since he was never given the opportunity to let nature take it’s course after he was born. So last week, we tried with 3 ml, I was successful once at getting 2 ml into him but that was so exhausting for him, he just couldn’t get that last 1ml in. When I got to try at the end of last week, he took 2 ml once, then 1 more later and .5 after that. But it’s very exhausting for him to try to figure the whole thing out and swallowing alone is aerobic for him. He will literally lose weight while eating because it’s such a workout for him to suck, swallow, breathe & digest, he burns more calories than he takes in doing that. Don’t we all wish we had that problem? Anyways, this morning, she gave me a 5 ml syringe and I chuckled to myself thinking there was no way he would down a whole 5 ml when his NG tube feeds just got increased a few hours ago as well so his tummy should be full already but I put the binkie in his mouth and he sucked and the plunger on the syringe went down on it’s own! I didn’t even have to push! With just a tiny bit of pressure, he sucked down 4 ml of  milk basically on his own! The last ml he had a little help with then he went right to sleep. 4 hours later, Bo was there and fed him again and he did the exact same thing. Then 2 more times tonight so he took 20 ml of milk by mouth today LIKE A CHAMP in addition to all of his NG tube feeds. This is a big milestone! He’s still only 5 lbs and they are concerned that he’s not gaining any weight even though he’s getting 24/7 feeds from his NG tube and they are fortifying my milk with lots of extra calories and protein to fatten him up. Hopefully yesterday and today were growth spurt days for him because he slept most of the day and all night long as well and ate a TON today so this may be the start of his weight/strength gaining which would be fantastic. That’s the prayer!

Today was a strange day for me. It was good to see Bo again when he got to the hospital and we had a chance to chat for a few minutes before I headed to the grocery store and home. Again, I realized just how tired I was drifting between the lines heading down I5 trying to stay awake. Walking through Costco felt like being in a bad dream I couldn’t figure out. I need food in the house but I don’t belong at the grocery store, I belong at the hospital with my baby. But I wanted to come home and spend some time with the bigs and maybe get them to their first day of co-op tomorrow and apparently, I need rest more than I realized since I didn’t realize I was a walking zombie again just living the hospital life. I picked up some buckets of soup for the kids and some pre made salad kits for me, ran to fred meyer and headed home.

The kids need some structure. It’s been survival mode for them for 2 weeks of free for all, anything goes, just make it through the day and their attitudes are certainly showing the lack of structure, routine and training they have received so we have a lot of work to do to get back on track with training, school work, getting back into a routine and rhythm again. They have been loved on well but no one wants to discipline or parent someone elses kids or grandkids so … we just have some work to do :)  It’s so good to be home with them though, I miss them so much but it’s also so hard to be gone from Gideon. I held all my big boys tonight but I didn’t get to hold him and rock him and sing to him and have him fall asleep in my arms like we do every night now. So sad. I’ll be back soon enough though.

Prayers:
– NIRS readings. They still need to improve
– Some of his labs need improving
– Weaning from Milrinone (the cardiac drug) – it’s going good so far this time
– Weight gain
– Improved cardiac output

Thank you!!! <3