The Feeding Journey

When Beckett came home from the hospital on June 16, he was still being fed with an NG tube. His last week in the NICU, he was assessed by an occupational therapist (OT) to help progress his oral feeding skill. The OT’s first assessment was very brief. Beckett didn’t open his mouth when a soother was placed on his lips and he didn’t suck on a gloved finger when put in his mouth. The OT said he didn’t have a rooting reflex, and said that was all she’d do for now but would come back the next day. I remember feeling so discouraged after that initial meeting, because I felt like the conclusion reached was that he didn’t have a reflex that was required in order for him to learn to eat. I saw a future of tube feeding Beckett, blending everything into liquid form for the rest of our lives. I will say off the bat, that this did not turn out to be our reality, and I’m very grateful, but also that if it had turned out that way, we would have made it work as a family. It just would have really sucked - there’s no denying it.  

When the OT came back the next day, she tried again to see if Beckett had a rooting reflex with a soother, which he did not. She then proceeded to say we’d just have to try to get him to suck on the soother despite that - basically not waiting for him to instinctively open his mouth, rather just putting the soother in his mouth anyway. I was relieved to know we could work around the fact that his rooting reflex wasn’t present - it gave me hope that B would be able to eat orally one day. The OT also showed us how to tell if Beckett was sucking rather than just sort of chewing (which was and sometimes still is his more preferred option when something is put in his mouth). By the time we left the NICU on June 16, the most milk Beckett had “drank” during a feed was 1 mL. We were sent home with a tiny itty bitty Dr. Browns bottle (15 mL capacity) and an ultra-premie nipple. We’d have to wait to try until we got the go ahead from the Feeding Team that we’d be working with as an outpatient. 

With Beckett home, one of Keith’s and my main focuses for Beckett was oral feeding, obviously without compromising his total milk intake via NG. Any milk that Beckett consumed orally for the first few weeks was “bonus”. First we had to figure out the logistics of doing the NG feeds in our home setting, without all the medical equipment and IV hooks that made it “easy” when we managed the feeds during the last few days in the NICU. We used an extendable camera tripod as a hook for the feeding bag, because the bag had to be at a higher elevation than Beckett's stomach, since it was a gravity feed. When Beckett was awake and alert for a feed, it was easily a two person job to try to do the oral feed training simultaneously. Either Keith or I would be looking after the soother and syringe aspect, the other would be making sure the NG set up was good (checking placement first always - see previous post), and the flow was reasonable, all while holding Beckett. With Beckett awake and alert, it was a good time to attempt to train his brain that sucking was associated with the”getting full” feeling he was experiencing. We’d get him to start by sucking on a soother, and if he properly sucked, we would ever so slowly squirt in tiny amounts of expressed breast milk (EBM) into his mouth using a syringe. We started with 1 mL, and made our way up to 3 mL over the first few days. There were many feeds, specifically during the night, when Beckett wanted nothing to do with the soother. It was much easier for him to stay asleep and have his belly fill up without having to work for it, thank you very much. 

About two weeks after leaving the NICU, we were given the green light to start using the tiny bottle with ultra premie nipple. Kind of weird, having to wait for someone else to tell us we were ready to proceed with trying to feed our baby with a bottle, but we had to trust the experts at this point. Within the first 2 days with the tiny bottle, Beckett was finishing 10-15 mL “quickly” (in like 20 min, which is hindsight is very slow, but felt like a beautiful miracle at the time). We didn’t want to wait for our next appointment with the Feeding Team to continue Beckett’s impressive skill development, so we decided to move up to a bigger sized bottle, but stick with the slow, ultra premie nipple for the time being. Keith and I started to be diligent/obsessive note takers as Beckett’s oral feeding journey continued. We had a notebook with a table in it to document how much Beckett ate orally, how much he was fed via NG, and how long the feeding took. We always made sure he met his intake goal of 170 mL/kg/day. We met with the Feeding Team about every 2 weeks, but also checked in via phone call and email more regularly. 

The OT gave us conservative plans to progress with oral feeding. Pretty quickly Keith and I recognized that we knew Beckett the best and that he needed to be challenged more - that the conservative plans were holding him back. We switched from ultra-premie, to premie nipple faster than recommended by the OT, and Beckett was suddenly able to drink a bigger volume slightly faster. We did the same when switching from the premie to the “transition” and then newborn bottle nipples. The plans were well and good, and generic guidelines on the Dr. Browns website on when a baby is ready to increase flow are probably useful for most babies. But Beckett was and is unique and we know him best. He always dribbles from his mouth while drinking his bottle - this in a lot of cases would indicate too fast a flow. But he’d also fall asleep drinking a bottle - a sign that it’s too slow. We had to accept and understand Beckett’s cues and also accept that he was just messy and dribbled. I will say that I had anxiety every time we “went rogue” and increased the bottle nipple size before the recommendation from the Feeding Team. If Beckett coughed while drinking a bottle, my heart felt like it would stop from panic, and my brain thought about aspiration and the risk of pneumonia and death. Reflecting back, I think this started from the NG feeding training that we received in the NICU (which I mention in more detail in the NICU - Week 3 post). It wasn’t until a few months into Beckett’s oral feeding journey, when I saw my baby niece cough while feeding, that I actually realized that Beckett coughing was NORMAL. I think I was so used to everything being bad or risky at the start of his life, that I forgot that he would also do regular normal baby things, like cough on milk. He is human after all. 

By mid-July, Beckett was crushing bottles. His milk intake was about 80% oral feeding by this time. Keith and I would cheer him on while he sucked on his bottles (fans of The Office may be familiar with David Wallace’s “Suck It” theme song… that was popular in our house at the time). When we woke up the morning of July 18, Beckett had pulled out his NG in the night, no longer in his nose, but still stuck to his face all crusted with dried snot. We took it as a sign that Beckett was done with his NG, and we decided to give it a go with just bottle feeding. We had a meeting scheduled with the feeding team the next day, and they agreed that it was a reasonable decision. We continued to obsessively track his volumes and time it took to eat. I wanted the record to show that he was still intaking 170mL/kg/day or more with bottle feeds. I think I was worried one of Beckett's many medical specialists would claim we rushed him and that he wasn’t ready, so I wanted the proof. We never had to reinsert an NG, and Becketts’s bottle feeding has generally been really good. 

As for my dream of breastfeeding - throughout July, I continued to try to get Beckett to latch. He did latch a few times, but he refused to stay still and would arch away from me. Also, because we were tallying Beckett’s volumes, the unknown intake from breastfeeding began to add to my anxiety. In August I decided to stop trying to breastfeed, and I’m certain that was the right choice for Beckett and for me. It took away a lot of stress in a lot of ways. I continued to pump, but after 3 months of exclusive pumping I had gotten into a routine and it was manageable. 

Although it’s not really “Feeding Journey” news, I think it’s worth noting, that as Beckett started to suck more (in the good, oral feeding kind of way!), he learned how to cry. What started out as sad little squawks when we got home have now become full on screams when he feels like it. It’s beautiful. 

Beckett is now 8 months old, and has been doing really well with solid foods so far. He mostly has purées and cereal, and texture makes him gag a lot. He is spoon fed and is just starting to try to self feed (with no real success yet). He loves solid foods and often tries to refuse a bottle, so we are always adapting and learning his new cues. He gets some formula and some EBM - I cut back on pumping a few months ago to be able to sleep through the night and it was totally worth it. Oh yeah, and he’s still messy and dribbles. 

Beckett’s feeding journey is a constant reminder to me that this little man can learn so much, and that his brain can rewire itself and accomplish new things when given love, patience, and attention.