Dancing Through Life: Updated GI News

Today Emma had a GI appointment where we actually had to go into the office because they needed to see what her true weight was (on their fancy medical scales) compared to our $10 Wal-Mart scale that we were using at the house. The good news is that the scale at their office shows her weight to be closer to what it was the last time: 17 pounds, 8 ounces. This morning when I weighed her at home, disconnected from the ventilator and G-tube, after I changed her first diaper of the morning with no clothes on, she weighed 16.2 pounds. So our scale is at least 1 pound off/less than theirs. Michael said they did not ask for her clothes to be taken off when they weighed her in the doctor's office and he did not check her diaper status. I say that as if I wasn't there because I wasn't - due to Corona Virus precautions, they only let one parent back, so I waited in the muggy lobby. Their AC was broken today and it was raining outside. They also measured her length at 26.3 inches (67cm).
The doctor wants me to keep track of her weight at home, and in 2 weeks I will call his nursing assistant and tell her how much weight Emma gained, or if she is the same. So for the rules:
She is currently getting 40ml per hour of formula, which as I noted two blog posts prior, is up from the 30ml she was at on April 27th. Since April 28th she was gradually increased by 2ml every week. Her GI doctor wants us to continue raising it by one milliliter every week, but also decrease the amount of time she is hooked up to the G-tube and being fed.
On the paper that the dietician gave to Michael, she instructed: When you increase to 41ml/ hour, you will decrease the time to 21.5 hours (880ml in divided by 41ml/hr). When you increase to 42ml/ hour, you will decrease the time to 21 hours.
During our video conference a few weeks ago, we told him that she is only "plugged in" for about 22 hours per day so she can scoot around the house as she pleases while sprinting, which he did tell us is a good calorie burner for her. But wouldn't she gain weight faster like they want if we didn't also decrease the amount of time she is being fed?
Oh, good thing I am pre-reading this to Michael before I publish this because he answered that question: He says the reason they are upping her formula and decreasing the time is to make sure that her stomach can handle the volume of formula, because if not, she could have further respiratory problems. If her stomach expands too much, it will push other organs up into her chest cavity. They also want to make sure this volume increase does not result in her straining to poop or cause extra gagging.
The GI doctor did say that she looks good and healthy, and her baby thigh rolls have been commented on recently in a photo I posted, haha. Her BMI is 17.73, which is average and great, and puts her in the 91st percentile, specifically for that category. Obviously, because of her primordial dwarfism, she is in the 1% for height and weight.

The paper I mentioned above also states for us to start doing a 10ml water flush six times a day, which may later be switched to 20ml three times a day. (I'd probably rather stick with six times because it's it better to get water slowly throughout the day than drinking too much at once, right?) The dietician said it's fine to do the flushes only during daytime hours. We don't have to give a flush at 3am, which is wonderful. That first month Emma was home (May 2018) was brutal with our sleep schedule because we did have to get up at 1am, 4am, and 7am to give her medicines that she was still weaning off of. After the first week I was probably the one getting up all those times since Michael had gone back to work and I was on my "She's Finally Home!" 12-week maternity leave.
I will give four or five flushes today since we started late (2pm/ after we got home from the appointment), and then starting with six tomorrow, I will give the first one around 10am when I give her Augmentin medicine, and the last one at 10pm, when I give her nightly dose of Augmentin. She gets 1ml of Augmentin each time. The water flush is to help her stay hydrated, but she definitely doesn't have an issue with that since I am now having to change a full pee diaper every two hours! But I guess there is no way for me to know how much of that is getting filtered through her kidneys.

The GI doctor also told Michael that he would like us to get an ultrasound of her liver done at the main hospital (APH) in the next month or two to make sure that she does not have any underlying conditions. He told Michael that her liver feels slightly enlarged. Someone from APH (Arnold Palmer Hospital for Children) should be calling me by next week to get that scheduled. He is not sure if it may just be part of her Meier-Gorlin Syndrome, but he also wants her to get a certain amount of water, hence the 60ml of daily flushes, without it always being with her formula, so she isn't getting too much protein by only upping her formula amount. The Duocal additive they gave us does not have protein in it. We are to add one scoop of that per day into her formula. When Michael told the dietician that we were still using EleCare Jr for Emma's formula that we were previously provided by WIC, which we no longer qualify for, she gave him extra cans that she had that are expiring in a few months. Those ten cans saved us $450!! Each can is $45 and only lasts about four days -- can you believe that highway robbery?! So it was definitely very, very nice for her to pass those along since she knew we could use them. The reason the cans she gave us are blue and the ones we normally use are orange is because we have Vanilla and she gave us Unflavored.

Here are some pictures at today's appointment with our masks on! Emma does not have a tiny mask and her Meier-Gorlin ears are too tiny to hold the straps anyway. And if she rarely keeps her glasses on, there would be no way to keep her mask on, so Michael just kept her stroller top down and turned her little fan on so she was comfy.

^^ In the car! It has been so long since we have taken her to an appointment that we were all out of sorts
and I was standing around looking confused, wondering what else needed to be done before we left. Michael did take her to GI and Pulmonology by himself at the beginning of February when I had the flu (was it The Rona?!),
but it's been at least six months since I have gone to an appointment for her.

^^ her Bullwinkle impression?

^^ employee doing a great job of wiping down & sanitizing all the lobby chairs! :)

^^ Unflavored vs Vanilla, and the Duocal

^^ first batch with all the fixins! The little bottle with the yellow top on the left is just filled with purified water
to use for her 10ml flushes. The one on the right has the Certo/ Pectin. We put 20ml of that into every double batch
(10oz of water + 8 scoops of EleCare + 1/8 teaspoon of Miralax).

The rest of these pictures are just nice, fun ones from the past couple of weeks when I took Emma outside to get some fresh air and Vitamin D! It has been rainy for the past few days here though.

~ Friday, May 15th:

I decided that I needed to continue the third annual Flower Child photos, but this time was more difficult since I no longer had the original headband, so I had to make my own out of outside vines, anniversary flowers, and tape. Plus the photos were hard to get- she was either quickly pulling off

the headband or quickly ripping off her diaper! I do not think I will do this again next year.

Saturday, May 16th: