Last Wednesday kicked off the beginning of Parker’s feeding challenge. We quit his day time boluses of formula and gave him solid foods throughout the day. We also stopped his evening gavage at midnight, giving him only 4 hours (versus 8 hours) of formula gavaging. His over 1000 calorie/day diet was compromised by only forcing 340 calories of formula into his system – with the hope that he would suddenly feel hungry and begin eating ravenously!
Well, it didn’t quite go that way. Day one: 118 oral calories total. Day two: 146…yay he’s gaining! By day eight: barely 200 calories. Hum…he just wasn’t eating enough food to sustain his weight AT ALL! Knowing that Parker was losing weight over this lack of intake, we took him in for a weight check. Sure enough, Parker lost around 1 ½ pounds in only eight days! Eeek!
The nutritionist met with us and helped develop a new, higher calorie plan – WITH the addition of an appetite stimulant. We were happy to hear that Parker was now old enough to try a stimulant. His first day on this miracle drug was a bit trying! The drug acts similarly to Benadryl – can make you tired and sometimes hyper. Nice combo! Parker was a TOTAL grouch and slept for three hours that day! I guess I needed the break after dealing with his attitude for hours – ha ha! BUT the MAIN change was in his eating! He has eaten over 500 calories/day the past two days. I am absolutely hopeful that his "switch" has been turned on and soon we will discontinue his formula pump altogether! Happy day!
Now medical procedures with Mr. Tyler! Friday Tyler had another endoscopy to check on the status of his ulcers. Unfortunately the doctor said Tyler’s system looked fine – ulcers gone and a healthy pathway exists. I was hoping the doctor would come back with answers to why Tyler continues to wake up at night, screaming in pain – or why he can’t take more than 50 cc’s of liquid before throwing up (and sometimes throwing up with 50 cc’s). But no, nothing. Now it’s time to begin the process of elimination game where we test for anything that might cause these problems. Test 1#: reflux test. Before leaving the hospital Tyler was placed with an NG tube that tracks reflux and sends a message to an electronic tracking device. So Tyler came home from the hospital with an NG hooked up to a machine the size of his gavage pump. The memories came flooding back - I had visions of when Tyler had his NG tube. The tape used for the tube ripped off some of his facial skin – JUST like it would when we were feeding him through his NG. Déjà vu FOR SURE! Grrr...
This morning John ran the tracker back to the hospital where specialists will look at the results and determine the extent of Tyler’s reflux. Maybe this will tell us something – or not. All I know is that we have a LONG road to forge with Tyler. I think when it comes to his eating challenge, a simple stimulant will most likely NOT be the key his success. I have a feeling that ALL of mommy’s patience will be tested. But enough of that – right now I am focusing on the positive – I have ONE eating baby! Yippppppeeee!
Here are some pics and video of our adventures! Enjoy!
Parker was without brother Tyler on endoscopy day. Parker was having a cranky time - no brother, new medicine and mommy shoving food in his face every couple of hours. Attitude should have been the least of my worries!
Ugh, oxygen needs right after the endoscopy - makes my heart sink! No more oxygen please!
My first view of Tyler with his NG probe (via daddy's text). No more NG tubes - doh!
Both Tyler and daddy were a bit tired after their hospital adventures. They were ready to nap!
Tyler's face was ripped up from the tape - geez be careful when removing the tape people! Argh! Below is some video footage of Tyler and his equipment. We taped his mesh pack on him so he could move around. Can't keep an active kid down!
Tyler is in good spirits after not only having an endoscopy but coming home with tubes and monitors for 18 hour reflux monitoring. Good grief - poor little guy! He was actually is very good spirits, as always. Gotta love Tyler and his positive nature!