When Carter was born, all the issues he had, Respiratory Distress Syndrome (RDS), Pulmonary Stenosis, Patent Ductus Arteriosus (PDA), Intraventricular Hemorrhages (IVH), we expected them. After all, he was born almost an entire trimester early.. he was bound to have difficulties.. he wasn't finished cooking. But we never expected an issue with milk. In our minds, milk went down the tube.. and stayed down the tube. Not so.
When they first began giving Carter milk, his tiny body wasn't handling it well.
The little 1mil syringes seemed to go down ok, but as his feeds gradually moved up in volume, his ability to keep his oxygen saturation levels within a safe range became much more difficult, requiring a lot of 'back and forth' from CPAP to high-flow, and back again.
Carter's first (of many) trial off CPAP onto High-Flow
At a couple of weeks old, Carter was finally tried on Human Milk Fortifier (HMF), also known as 'Calories' or 'Fortified Feeds'.
As soon as the fortified feeds started, so too did the projectile vomiting. You would never imagine that something so big could come out of something so little!
Carter began to lose weight faster than he was gaining it, so the decision was made to stop fortified feeds altogether and go back to plain breast milk, at a smaller volume.
He began gaining weight again.
Carter's doctors wondered if, maybe, his stomach was too sensitive for the 'heavy' fortified milk.
It was like formula on steroids; maybe his body just wasn't ready yet.
So, again, as Carter began to gain weight, and he became a little older, his doctors tried fortified feeds again. Only a couple of weeks had passed since he was last on fortified feeds, and I wasn't happy that he wasn't just being left alone. "He needs some dramatic weight gain. His current weight is dangerously low."
I remember thinking, "then stop giving him milk that he vomits up and we'll be fine!".. but.. I was still very new to the NICU world, and I hadn't found my 'voice' yet.
It went on and on until, finally, I found that voice.
"Here's the thing, normal breast milk.. he's gaining weight.. slowly.. but it's happening. Fortified feeds.. he's vomiting.. he's losing weight.. rapidly."
That night, Carter's doctor agreed to stop fortified feeds completely. Whilst fortifier can have the ability to be amazing for tiny premie babies who are born incredibly small, it was having the opposite affect, in Carter's case.
Fast forward about a month.
Carter was still very small, but he was growing and putting on a good amount of weight.
He was finally off CPAP, after 5 weeks, and the idea that his vomiting could be caused by an excess amount of air in his belly, was less likely.
Carter was started on Omeprazole - a reflux medication that works by blocking the pumps in the stomach that produce acid. It was hoped that this would improve the amount of oxygen desaturations ('desats') he was experiencing.
Carter's first day in an open cot after 7 weeks in a humidity crib.
Carter's desats were getting increasingly worse.
At this point, we knew his lungs were holding up. He was still on high-flow, but he was doing incredibly well, and it was found that he was having more difficulties right after his feeds.
The idea was that, if it was reflux, his body was protecting his lungs by instinctively 'breath holding', which stopped the contents of his stomach from making it's way into Carter's lungs. As this happened, his body's oxygen saturation percentage would drop from 100%, down to around 40-50% in a matter of seconds. Often, turning Carter's body a scary shade of blue, or 'dusky'.
Sometimes it would bounce back up to the high 90's within about 20 seconds.. other times, it was a scary dash to stimulate his body to breathe again and give him a bit of oxygen to help get his sats back up.
For the duration of Carter's NICU and SCN stay, his reflux barely improved, with his paediatrician, once Carter was transferred to a SCN close to home, writing him up for Ranitidine - another reflux medication which works by blocking a chemical in your body, 'histamine', which activates the acid-producing pumps in the stomach.
Carter was also being given Iron which, paired with his reflux medications, was one nasty constipation-inducing cocktail.
We noticed that Carter was experiencing an increased level of desats when he was trying to poo, which was usually followed with a bit of vomiting - all that effort that went into pushing, was also pushing his milk back up.
So, with the intentions of catching things before they had time to 'back up', Carter was given lactulose each day - a non-absorbable sugar that works by breaking down into mild acids and drawing water into the intestine, softening the poo (I considered using 'stool'.. in my opinion, 'stool' sounds worse?).
I couldn't believe that reflux, a condition that I'd had as a teenager and continued to experience (quite severely) during pregnancy, was enough to stop my tiny baby from breathing.
His desats continued for his 102 day-long hospital stay, even buying him a ticket on a Royal Flying Doctors flight to Sydney's Westmead Children's Hospital to undergo a Sleep Study Test and ensure there was nothing more sinister causing it all.
Thankfully, the Sleep Study was all clear, with the only finding being that Carter's breathing was much more effective when he slept prone (on his belly), as oppose to sleeping supine (on his back).
An ultrasound of Carter's stomach found that his Pylorus, the muscle that connects his stomach to his small intestine, was thicker than it should be, creating the idea that maybe his reflux was due to a thickened pylorus. 'Pyloric Stenosis' is when the opening to the small intestines is so narrow, due to the walls becoming too thick, that food can't pass through.
Lactulose, Ranitidine, Omeprazole
All of Carter's issues were now reflux related.. all of them.
It was so frustrating! To have seen him at his absolute worst, when all his organs were still developing, and now, to see how far he'd come and how well he was doing, just to have him be, somewhat, no better off.
The idea of post-pyloric placement of Carter's feeding tube was thrown around a little, until one paediatrician decided to take the tube out altogether. "The issue with tube feeding is that the tube keeps the stomach open. If we take it out, we might see the improvement we've been looking for".. and we did! Carter's reflux dramatically improved with the removal of his gastric tube.
After 102 days, our little 30-weeker baby finally got to come home.
Carter came home on reflux medication, supplements, special milk formula and instructions to sleep on his belly and at an incline - something we did under the careful management of Carter's paediatrician and our family doctor. We also monitor Carter's heart rate and oxygen saturation levels through an incredible home pulse oximetry monitor, The Owlet Baby Monitor*, which we have had since Carter's first night home and allows us to sleep Carter on his belly safely.
Carter wearing his 'sat sock' for the Owlet Baby Monitor
Thankfully, at almost 7-months-old, Carter's reflux has subsided drastically and it is no longer managed with medication.
We did begin feeding Carter solids (baby rice cereal mixed with his milk), at 8-weeks corrected, to help manage his reflux without medication, which we feel, along with his paediatrician, was a huge factor in being able to take Carter off his medications. It's been a long spew filled road.. but we did it!
* Affiliate link used
