We Wait...

Over the weekend we were lucky enough to have one test complete. It was the Upper GI test. (They originally told me it was going to be the empty stomach one). It came back completely normal. I love and hate when these tests come back normal. I feel like it's an episode of House because the docs are constantly searching for the reasons why he isn't eating. 

So, what does it look like when Em eats? He can eat. He will take about 2-3 oz of his bottle NO PROBLEM. He chugs it down, and then he starts playing with the bottle, or he pushes it away completely. Keep in mind that his bottle is fortified to 27 calories an oz. So, he is only getting 60-80 calories a bottle. He also LOVES his purees. In fact, if he sees the pouch at all, he won't even take eat the bottle. He just wants the pouch. Stinkin picky eater he is! The pureed pouches are only 60-90 calories as well. Again, not enough calories per meal. These are more like a good snack. 

Well, he eats his purees so why not up those calories?? We are. He currently is getting some Duocal Protein Powder. It's about 25 additional calories, but you have to keep in mind that every time he eats something or drinks his highly fortified formula, he isn't getting the liquids he needs; so now he's dehydrated. yay.

It seems like everything is a Catch-22. If we try this; this will happen. 

Moving on. Pedialyte. In order to fix the dehydration, we are also giving him Pedialyte. This is helping, and we are trying to stay away from giving him IV fluids because we do want him home soon. He doesn't exactly like the Pedialyte... and he never really liked it in his formula, but it is something.

I just don't understand you Em... are you truly my child? I LOVE FOOD. 

As for the next test...

It is hopefully this morning. We aren't there yet to figure out the time of the test. Robert and I needed a break from the hospital dread, and we only have one car. On top of all of that, Holden was missing us big time. He is currently cuddling with me right now as I write this. I have missed my big boy, and I thank my sister and the Joes for watching him while we were navigating this new issue with Em. We ended up visiting with the Joes and Amber for a play date  yesterday while Em was being taken care of by the wonderful nurses. The three of us spent the night at home (usually Robert and I switch off). Some might Mommy Shame us, but I don't care. I know my body and feelings, and we needed a break from the hospital. 

Holden is staying with mommy today, and Robert is on his way to the hospital now. H needs some special bonding time with us. He knows that Em is sick, and he wants his brother back. In fact, he wanted to go to the hospital with daddy, "I have my mask!" is what he was screaming while daddy was leaving. He was able to go with us to the NICU, but due to Covid, he can't go- so he is super confused.

Ok, so what's next? 

Once we get these test results, we will know more. If it turns out Positive with something wrong with the emptying of the stomach, then there are some meds we can try to solve this issue. There is still no guarantee that it will "fix" the problem, and I hate the "let's wait and monitor game." This basically means we go home right away, we continue on the exact same path we've been on with a higher calorie intake, and hopefully not dehydrate our child. Can you sense my negativity there? It was on purpose, I don't like this option. My opinion is: ugh! more meds. (he's already on a diuretic and blood thinner). If you don't know, diuretics make you urinate more... which means dehydration.

If it turns out negative, then they are looking at a G-Tube which means more days at the hospital. I am "Pro Tube" because I can see my baby is in pain and starving, and I just want a fix. I know tubes are hard work and stuff. However, I also know that he will be getting the calories he needs, and it would only be to supplement what he ISN'T getting. For example, he currently has an NG tube (The one through the nose), and he takes some of his bottle, eats his purees, and finishes the rest of his bottle through the tube. He still gets the food taste, uses the muscles in his mouth for eating, and gets all of his calories. A win- win in my book. Plus, you can get it removed once he is on the up and up of growth charts with a very small scar. (Chicks love scars). So folks, stay tuned for results.