All Things Food

So here's an update on Leo and all things related to eating. 

For about the month of January Leo's been "off" in some ways. We believe he got through covid with no emergencies and then it seems that he may have gotten another bug. Neither of these seem to have been incredibly severe but have simply increased the complexities of Leo's eating, sleeping, puking, and reflux stuff. Over the past week, the more minor symptoms--snotty and diarrhea--have seemed to evolve into more constipation/discomfort symptoms.

I really don't know if that makes sense, but I believe that I'm explaining it true to what's happened, haha. As in, things are very fuzzy for me. I don't like it when there's not a clear start date to symptoms or a clear end. It feels hard to describe if Leo's sick or not right now because he's definitely off but there wasn't one day when I was like, "Yup this kid is sick." It seems like maybe a build up of some stuff. And with his stable state there's more than normal going on, so figuring out what's going on when it feels like it went gradually from fine to not is just a weird feeling. 

Another interesting aspect of this is that when explaining to a specialist, doctor, or therapist, I get tripped up in words because it's just a lot of guesswork and intuition and "did I perceive that correctly?" and vague, subjective descriptions. That also means it can be hard to write an update here ;) but I figured I would describe the inner workings of my brain when it comes to all of this. 

The GI doctor and nutritionist have suggested that Leo start eating a formula that is more broken down--well, the proteins are more broken down so it is easier for the system to digest. They think it will be softer on his system. We could do this for a month or so to let his digestive system recooperate from being sick back to back. Then we could go back to his normal food. The fear that Brad and I have with this is that what they are suggesting is formula--liquid. What he eats now is blended food. It's much thicker. We do not think the formula will sit well at all.

"So why not just try it?" you may be asking. "And then when he's puking a bunch you just go back to the normal food." Yes, that's a very good point. But this is a very complicated thing for us to work through. So, I want to describe the emotions that Brad and I work through in order to give Leo new food.

I'm going to try and say this in a very straight forward way because my mind keeps getting tripped up in trying to word things in the "right way". I think it's my hesitancy to call our experience what it is because there's a voice in my head that says, "You're being overdramatic. What you've experienced isn't that bad. Others have it worse. Suck it up." So, while not subtracting from anyone else's experience, I'm going to describe ours.

Feeding Leo has been small t traumatic. There has been SO MUCH stress. Granted, feeding him has been fairly stable for a while. But at the beginning...that was bad. We had countless appointments of no weight gain, caloric intake changes, switching up feeds, trying different bottle tops, getting the feeding tube, adding night feeds, a hospital stay, etc. The feeling that you can't give your kid his most basic need is beyond exasperating. 

Now, again, we are not there. However, for 6 months or so we've been looking for him to gain more weight and we've been dealing with a greater amount of pukes. All of that to say, when changes are made to his feed, we feel incredibly out of control. Our bodies and minds take us back to the place of survival mode where every feed change was urgent and necessary because things needed to change now.

But we're not where we used to be. We know Leo's body better. We have a wonderful team around us still who know him better, too. We have more confidence and space to try other things. I always think about the fact that even with Leo's whole feeding debaucle, I can look back at pictures from a year ago and see a smaller boy. He's grown. Through all of this he has grown. 

I must also include this piece. My gut says that Leo has gotten covid plus another small sickness this season, and that his system has been thrown off by it. The sickness plus our changing how we handle his constipation because he was having diarrhea has thrown his system from what it was used to. I think he needs time. Praise God he's been sleeping well. I think he needs time. 

I haven't shared yet that Leo's weight has basically maintained other than going down a little (and then coming back up) when being sick. We are going to mix this formula into his food and see how he digests it. If it helps the pukes then maybe it will give his system the break that it needs. We are also still experimenting with blending food up for him with the hopes to expose his system to new foods and expand our options of what he can eat. That's been going well but it is hard to blend food consistently.

I'm so sick and tired of so much of my energy during the day going to, "Is he ok? Am I missing something? Should we be changing his food? Will chainging his food just throw him off more? We just need to be patient and give him time. Yes, he's ok. Give him time. He's just sick. Oh my gosh, why is he grinding his teeth? Is he in pain? He puked again. Don't freak out. It is what it is. It's not up to you. But what the heck am I supposed to do?!" That's not my constant state of mind, but in regards to his eating it's been stressful. And I am trying to illustrate in this post the emotional side of it. There's a lot of fear and anxiety related to Leo's eating. And when a medically complex kid gets sick there can be a lot of other things to go through to make sure it's not something bigger. 

ALL of that to say...I don't know. That's where we're at. That's me trying to describe the emotions that come up in regards to feeding Leo. We're not in a constant state of intensity. That's part of the beauty of parenting. I am learning that I am not called to control things and that it's ok for me to not know how to "fix' something. Leo is in good hands. We're taking the steps that we need to, but I wish we were in a different place with his eating. 

If you made it this far, thank you. We love you guys.