Enter Felipe

I have been an angry baby for the last few days, mommy and daddy have been trying everything to get me to calm down. Change me, play with me, leave me alone, soother, check my temp. They started talking about my feeds, wondering if maybe I wasn't getting enough feeds. Yesterday's weigh in was a fluke I did not gain my weight! That 0.05kg must have been some extra poo or water weight, since I am now back down to 3.15kg. I haven't gained weight this week, so they checked with nurse Heather to see if they could up my feed from 35mls to 40 each feed. She checked with the resident, Felipe who said "Yeah sure". So my feed was increased this morning. Mommy had an uneasy feeling the whole day as she was now worried that she may blow up my tummy from too much fluid. None of my regular Dr.s were here for the whole weekend and she was scared that the decision from Felipe may have been too hasty.

I went through the day on more food and things were pretty uneventful with my insides. Katarina, Jackie, Bob and the boys came to visit. They brought us all a big care package full of books, movies, and sweets. Dad has stuffed himself on peanut butter squares!

Dinner time rolled around and we were invited to join the Rutledge family for Chinese food! Meanwhile my insides we're getting ready to send up red flares. I cried the blues for nearly an hour before Nurse heather came in to check my sugar and it was down to 3.4. As per the protocol we did another check 15 mins later and it was 2.7!!! Now this was the lowest read in awhile but mom and dad did their best to keep their cool. We checked again after my feeds and I was back up over 4. Phew!

Mommy and Daddy talked to nurse Heather regarding my crying. She said it was likely due to my low blood sugar level.. This sent up worries in my parents, they are now wondering if when I cry I have low blood sugar. Around 10:30pm I was still crying my eyes out and my parents were still worried about my feeding level. Mommy was particularly upset because unlike a bottle/breast fed baby who stops eating when full and continues eating when hungry, I cannot make that decision as I am on a feed pump and have my feed numbers mathematically figured out for me. What if my body is trying to grow but I am not getting enough food? I am on the same amount the Drs figured out 2 weeks ago.

Mommy and Daddy were freaking so the nurse had the resident, Felipe come talk to us about our concerns.... He said that there is a mathematical formula to figure out what people's fluid intake for the day should be based on the person's weight. He said for Ethan's weight he should be at 70-80mls an hour. We told him that Ethan is at 17.5 plus meds. So around 25 mls. This is a huge problem! Felipe said he would check over the notes to see if metabolics left anything about how they came to the rate. He came back and said that there's nothing really written in there but the team would talk about it in the morning. However, metabolics isn't in until Tuesday. AHhhhhhhhhhhh! On friday, my metabolics doctor, Dr. Potter told us that he was on call the whole weekend and that if we need anything to get someone to call him. We told Felipe this and he was very reluctant to make the call. My daddy asked if there is an issue calling people on call as this wasn't the first time we ran into this issue. He asked Felipe wouldn't it be better to call Dr. Potter and get the answers right then rather than waiting until Tuesday, as it was only 10:30? Felipe agreed and called the Doctor. Dr. Potter asked to speak with Daddy so that we could ask all the questions we had. Turns out Felipe's math skills are bad and I am actually on the high end of fluids for my weight. Dr. Potter also said that crying is the opposite of knowing if I had dangerously low blood sugar and that we would know for sure just by looking at me. My body would start to shake uncontrollably, I would go to sleep and you wouldn't be able to wake me and I would break out in cold sweats. Dr. Potter reassured that he is not concerned about my sugar levels as they have always gone back up so far. He also said that he doesn't have too much confidence in the glucometer machine they use here as its just a hand held machine. Apparently it doesn't have good accuracy under 4. It is the most accurate between 4-5. Which are the "normal" levels. He told daddy that whenever the machine reads a "low level" that we can request for the glucose to be checked at the lab instead. This requires a tube of blood rather than a drop, so we think that's why they don't order it every time. Daddy thanked Dr. Potter and mommy and daddy were able to sleep for part of the night.

I think I may be Superman!