For the first month of Zane’s life we worked very hard on getting Zane to eat by mouth. He would take some of his bottle, but not enough to gain weight. He had an NG (Nasal Gastric) Tube and they would push anything he didn’t finish through the NG tube so he could grow. He lost a little over a pound after birth before he eventually gained some back. He gained his weight back at a slow rate. When we would feed Zane he would cough and choke, he would push his tongue so tight to the roof of his mouth that you could not get the food past it, he would throw up or reflux at times. We would try for 45minutes on one bottle and get maybe 30ml in him (which is one ounce) on a good day. They decided to sent him for a swallow study and have an ENT come in to do a scope.
So they ran a swallow study. They lay him under fluoroscope/xray and feed him bottles, each with different thickness and different flow nipples. They observe what the parts in his throat do while he is swallow with these different methods to find the one that works best for him. At this time they saw with non thickened food he would aspirate (breathe in) a small portion of milk during each swallow. If you laugh while drinking at the same time and you start choking on what you are drinking….. that is exactly how he felt and what was going on in there! Not fun! So from this point forward we started thickening his milk with cereal. Cereal at a young age can be rough on the digestive system, it is also harder to get out of a slow flow nipple so he had to use a medium flow nipple. This meant he could also not breast feed and I started pumping and freezing milk at home because I wasn’t ready to just stop before the problem was fixed. I ended up pumping for a month and a half til I quit. (I quit after they told me had neuroblastoma. I was so stressed out my body was barely producing any milk. The doctors were in our room 24/7 needing to talk to me and i found it difficult to get away to pump. But i was able to give him a month supply of breastmilk through his G Tube after he got one)
They also decided to scope his throat and called an ENT in. Thats when we met Dr. Robey! He was our first specialist! He scoped and said Zane has laryngo malacia which is a floppy larynx. He said he would likely grow out of it before he is 1 years old and symptoms would get worse between 4-8months before they start getting better.
We tried Ad Lib Feeding…. which means they removed his NG Tube for about four days to see what Zane would do on his own without being fed by tube. The first two days he drank 60ml’s per feeding with a goal of 80ml but he was still able to gain weight. Then the last two days he only drank MAYBE 20mls…. and lost weight 😦 At that point I decided his feeding was not consistent enough for me to feel safe at home. They sent him to Children’s hospital via ambulance.
When we got to Children’s hospital we met his G.I specialist, Dr. Alfonso Martinez! One day later Zane was having surgery for his G Tube! This was also his very first surgery.
He will keep this Corpak PEG Tube until he gets a mic-key or a mini one. He currently qualifies for having it changed, but Im waiting for the next time they have him under anesthesia to change it otherwise they just pull it out in the office. Sounds too traumatic for me so I’d rather wait and let them do it under endoscopy.
So he started eating hooked up to this pump and we got a pump, IV pole and medical supplies delivered to our home.
Sadly after his neuroblastoma surgery, he stopped feeding by mouth completely. We try every now and then, but most of the time it’s too dangerous from some reason or another to attempt it. He will take one ounce by mouth on rare occassions but most attempts by mouth end in about 10ml so only a few drops basically.
He also suffers from acid reflux, reflux medication doesn’t make it go away but atleast makes it less acidic so it is not irritating his larynx area.
And now were so comfortable with Tube Feeding that we are accessorizing!