a glimpse into our day.

As I sat here this morning trying to accomplish so many things I decided to snap a photo. The overwhelm comes on strong more times than not, with moments of relief not long after, that are usually forgotten about. A crying baby is hard. A crying baby that doesn't actually make audible sounds is even more pitiful. Combining that with everything else that needs to happen is a recipe for stress.

Gideon woke up at 7:30 almost on the dot (which is actually great). I made breakfast while Daniel got his diaper changed and got him ready to be fed and was also on the meeting at the same time. I came in and took over, started his feed, needed to pump again, check on work/ start working, do Gideon's oral feeds via syringe, and make him be not fussy because he is hungry and also inhaled my breakfast so I would not be hangry.

I will take this 1000x over what our lives looked like 7 months ago. 7 months ago when we just came home, did not have the nursing support we have now (we had 8hrs / day with about 4 days filled out of the week). Gideon was still on methadone. Our vent was not functioning properly (which we didn't fully know until months later). The big kiddos were in school. We were trying to work. It was a mess.

This is so much better but yet still so hard. Things are getting better, yes, but we are still in it. We are still in this space. Feeding therapy is taking forever to start - Gideon very much is ready to eat more by mouth, but we don't have the tools to move forward with it. Having a tube fed baby is tiring. Whereas I can't just pick him up and feed him, we have to get a feeding bag out, I am pumping all the time so he has best of the best, we have to make sure his extension (the piece that connects the feed bag to him) is clean and then we offer milk by mouth - usually via a syringe or spoon. Gideon has the reflexes there, but they have been muted for so long since the doctors decided he should not feed by mouth, so it takes a bit to awaken those again.

We do typically have nursing most days, which helps tremendously. There are days (like today) where we don't have anyone first thing. It's such a catch 22 - having more one on one time with Giddy while also wishing i had an extra arm or 2.

Everything we try to do with him we make it nervous system regulating or retraining his brain or working on gross motor skills. He is getting there one day at a time. The biggest win this past week is he has started rolling to the left! He has been rolling to the right which is great, but now he will go either direction and roll to try to get to his toys. It is the most precious thing. He is working hard and we are so proud of this little guy. I appreciate times like below where he causes me to pause. To rest. To absorb these sweet moments together.

snuggles are our favorite