Highs & Lows

So here is the scoop from today's appointment the nutritionist and g-tube expert in a Q & A form:

?: Can the feeding tube timing/rate be sped up?

A: No, the timing/rate of the feeding tube CAN NOT be sped up at all. We are stuck to 35 minutes. So tonight, I bought Sloane some Play-doh, Elmo sticker books and tracing cards as special treats only to be used for high-chair time. Hoping to pass the time bye!

?:Can we drop down to 2 g-tube feeds daily?

A: Yes, we CAN. Sloane will only have 2 from now on. The 2 can be whenever I choose during the day (breakfast, lunch or dinner)

?: Do we need to make up for the 5 oz. of milk we are eliminating when we drop that feed?

A. Yes, we do but not for nutritional value. Sloane's oral diet is FANTASTIC. She is not lacking in any food group! We need to make up the 5 oz. of milk we are eliminating for daily fluid intake. 

Babies and toddlers require a certain amount of fluids daily. There is a high range and a low range. Somewhere is the middle is the place to be. High water content foods help with that daily fluid intake amount, but it truly needs to come from liquids. There is a mathematical equation based on weight, age, and diet that gives the high and low range. Currently, Sloane gets about 20-22 ounces of liquid daily. With dropping a feed, she will be down to 14-16 ounces. Sloane needs SOME of those 5-6 oz. added back into her diet. 

?: How will we get SOME of those 5-6 oz. back into her diet?

A. We have 2 options:

1. Sloane can drink ANOTHER 4-6 oz sippy cup of thickened liquid daily (water, JU, or a homemade smoothie)

2. We can add 1-2 more ounce of milk to both tube feeds each day bringing them from 5 ounces to 6 or 7 ounces. 

?: Can Sloane drink her milk g-tube feeds by mouth?

A: Yes, she can if she wants to. She has not acquired a taste for it. 

We are hopeful that the thickened milk smoothies (they have to be thickened too) will be a hit. The more Sloane can drink safely by mouth, the less that has to go into the tube. The goal 

IN TIME/NOT VERY SOON is for Sloane to safely drink all her liquids by mouth. 

?:How do we feel about these changes:

A: We are excited to give Sloane one normal natural mealtime during the day. The big push is going to be the sippy cup. We prefer for her to take in those extra ounces by mouth rather than tube so the my job for the next few weeks or months is going to LIQUID PATROL. 

?:What is your plan now?

A: First, we will spend the next few days making the changes. Dropping a feed, pushing a sippy cup, counting the daily ounces, and if need be increasing the volume of the 2 daily feeds. 

Next, we review the results of the swallow study on Tuesday and hope that it shows in black/white x-ray that Sloane is NOT aspirating her thickened liquids so we can turn her into a LUSH!!

Lastly, I made an appointment with our ped for next Thursday to get her thoughts and seal of approval on the plan!

?: Do you have anything else you want to say?

A: Yes, all this counting of ounces/mls. of liquids is RIDICULOUS. I mean, seriously, please tell me of a mom of a 21 mouth old that force feeds their child liquids all day!! When a normal child doesnt finish a cup of milk/water, that mom isn't holding the child's nose and forcing the liquid down their throat. I realize Sloane has a gtube BUT she doesn't have it because she is a poor eater or malnourished? In fact, as of today she is on the 95% for height and weight. She was 28 lbs and 33". 

All this counting is too calculated/medical/scientific if you ask this mom. If Sloane didn't have a tube, would I as a mom be counting every ounce that went into her and if she was a few short, what would I do?? Shove it down her throat?? NO!! I have friend's whose children are freaking camels and they sleep at night. Me, I am obsessed with how thick, how much, how many, and how more Sloane can swallow!!

Today, whenever the nutritionist said to keep track of Sloane's wet diapers daily. I almost fucking lost it. Are you kidding me??? She is 21 months old. She pees more that I do!! And her diapers are lead sinkers! We are talking about 2 or 3 ounces here not 15!! I understand the need to do the math, put it in the computer and compare it to the norms but it is obsessive!! 

I remember in the NICU I was obsessed with what Sloane weighed daily. Our primary nurse took the scale out of Sloane's daily routine because I was fixated. This reminds me of that. She said, at home, you wouldn't be weighing Sloane everyday. You are only doing it because she is here in the NICU and we have to. To that I say, if Sloane didnt have a gtube no-one would be adding up the ounces she drank everyday. They are doing it because they have to!!

?: In closing, we talked about highs and lows, what was the high of the day and the low?

A: The high was ELMO!! Mammie bought Sloane a huge Elmo balloon at the hospital and Sloane dragged Elmo around the house all afternoon with her. She is in love!!

The low was when Sloane tossed some nice, ripe avocado across mammie's dining room. The chunk landed perfectly smashed on her beautiful, custom, shimmery drapes! I could have cried.