Hold your breath, knock on wood, do whatever you do to not jinx this moment, but Myla has been puke free for essentially a month (well, she did a tiny throw up last week when she had a 104 temperature and we were admitted to Capital Health System for 4 days, but enough about that. Myla is fine). Tonight, Lindsey and I were thinking about all the reasons or explanations we would come up to rationalize why she was vomiting over the passed 10 months. When you are a parent in crisis, your brain will do some funny things to try to rationalize the insanity that you are facing. This is a non-exhaustive list of the reasons Myla used to puke.
Myla used to puke because.....
1. She had delayed gastric emptying (Gastroparesis)
2. She had a milk protein intolerance
3. She had a milk protein allergy
4. She would feel full too quickly because of her heart.
5. Her NG tube made her gag easily
6. Her NG tube moved when she coughed causing her to gag.
7. Her NG moved when she sneezed causing her to gag.
8. She's constipated so the food has nowhere to go but out.
9. She pushed too hard when she was trying to poop.
10. She pushed too hard when was trying to fart.
11. Pearl barked, woke her up, so she puked.
12. The food went through the tube to fast.
13. The bolus (what we feed her from) was up too high causing the food to go in to fast causing her to puke.
14. The digoxin (heart meds) made her feel nauseous.
15. She laid down too quickly after she ate.
16. She stood up too quickly after she ate.
17. She moved around too much after she ate.
18. She needs to move around more so the food digests quicker.
19. She ate 7 grams of baby food (not even half a teaspoon) right before her tube feeding.
20. The formula was too thick.
21. The formula was too calorically dense.
22. She has an allergy to something else in the formula.
23. She's too cold.
24. She's too hot.
25. She's in her car seat, so she is hunched over.
26. She has reflux.
27. She burped.
28. She may be sick.
29. She has post nasal drip.
30. She's teething.
31. She has a cold.
32. Her prilosec is an antacid. Your stomach requires acid to digest food. Without stomach acid, it takes her stomach a longer time to digest.
33. Her feedings were too close together.
34. Her clothes were too tight.
35. She never truly got to feel hunger because we were instructed by doctors to feed her too much food that was too calorically dense, too often. Imagine always being full and being force fed a full meal. That's how Myla felt all time. She was not able to regulate her intake at all. We are pretty sure this is why she puked. She is still being tube fed for about 30% of daily intake because we are still working on drinking. Tonight she ate a portion of pesto pasta, a full portion of apple sauce from a pouch, and 75% of a snackpack vanilla pudding for dessert (not to mention her favorite banana puffs)
I am so happy that we can make light of this now because while we were living it, it was 24 hour a day hell. The smell of vomitted formula permeated our home, our clothes, and our cars. Now, our house smells like food. I want to give a special thank you to Dr. Markus Wilken and all the other amazing parents on the tubefedkids website that offered advice, support, and at times challenged our thinking. We aren't completely there yet, but each day we feel closer and closer. The fact that we survived a 4 day hospital stay without increasing tube feeds or losing weight was amazing!
