Love the Unexpected

When our son was born, one of the first things that the NICU doctors did was insert a Nasogastric (NG) feeding tube. We were told that this is pretty common for babies with a cleft. If you haven’t had a chance to read our NICU story, I give details about the feeding challenges we faced while we were in the hospital.

The day we brought baby home was one of the best days of our lives but unfortunately, we also brought home the feeding tube. My hope after delivery had been that baby would take to the bottle and we would be able to avoid relying on the NG tube for long.

However, as the days in the hospital dragged on and we watched him eagerly take a portion of the bottle, only to get tired and need a top-up via the NG tube, we realized that we it would be best for us to embrace it and continue his care at home. We were assured by our cleft lip and palate clinic that this was not uncommon.

My husband and I, along with our healthcare team, were eager to get him off of the feeding tube as soon as possible. This began what felt like a lengthy journey toward that goal (though in reality, it only lasted about two months).

Please know that nothing in this article is intended to be prescriptive – always work with your medical team to figure out a plan that works best for you and your baby.

Still, I understand how lonely walking through an experience like this can be. My hope is that if you are facing a similar circumstance, our story might be an encouragement to you.

1. A little man with a plan

When we were discharged from the hospital, we walked out with specific instructions for feeding our son, along with two main channels of support while he was on the feeding tube.

Leading up to our discharge, baby had shown that he could drink his full feed via the bottle – we had on occasion seen him drink 60 mls, using the Dr. Brown Specialty Feeding System. However, this was the exception, not the norm. On average, he would drink half (about 30 mls) on his own, before growing tired and oftentimes falling asleep on the bottle. We would then administer the remainder through the feeding tube.

The plan when we left the hospital was to continue this strategy of letting baby eat what he could via the bottle and provide the rest as top-ups through the NG tube. We were to give him a high-calorie formula, to maximize the calories he was getting from the work he was putting in. We would then work with the dietitian and feeding specialist through our cleft lip and palate clinic, to monitor and adjust our strategy over time, as baby became more familiar with the bottle and more efficient in his eating.

Our cleft lip and palate clinic was our primary source of support. They were the team that we worked with the most, and they provided one-on-one assistance while we worked on weaning off the feeding tube. The second was our home care team. They were more hands-off, but always made it clear that they were available if we needed help. Since we had the cleft clinic helping us, we didn’t have to rely so heavily on the home care team. However, they provided all the supplies we needed to keep up with the tube.

2. The slow burn

When I first realized that we would be bringing baby home with the NG tube, I admit that my predictions for how long it would take to get him off were pretty optimistic. In hindsight, I’d reassess that as unrealistic.

Two months admittedly is not a long time. Some babies take longer to be weaned off of their NG tube. But believe me when I tell you, it felt like forever. Even now, it’s hard for me to realize that it was only two months of our lives. That amount of time now seems to pass in the blink of an eye. This begged me to ask the question – what was it about the experience that made it feel so long?

Looking back, I think I can attribute it to these three main things:

1. Feedings took a long time

Using a hybrid way of feeding, meant that it took quite a while to complete a feed. The general rule of thumb when letting a cleft baby bottle-feed is to not exceed 20-30 minutes. This meant that if baby was happy to eat for that long, we would let him.

Generally, we found that this was about when he signaled on his own that he was done – usually by falling asleep. After doing our best to keep him awake (applying a cool cloth to his neck, tickling his feet, taking him out of his pajamas to cool him down, etc.), we would grab the syringe or gravity bag (depending on how much we needed to top him up) to feed him the rest, followed by the routine cleanup.

Keep in mind that we were balancing this with his twin sister’s feeds. With eight feeds a day each, we found that to survive in those early weeks, we needed to do two of his night feeds entirely via the NG tube. This was something we discussed with our feeding team and were given the go ahead to do.

2. It was stressful

Every feed felt like test. I would watch the clock to see how long it was taking him, keeping an eye on the bottle to see how many mls per minute he was eating. Toward the end of the feed, I would feel either joy (“we only have a 15 ml top-up!”) or disappointment (“30-50 mls it is”). It was a constant rollercoaster that made our feeds feel less than tranquil.

Inserting the tube was also stressful. Yes, we’d been trained and we knew how to do it. But it’s an unpleasant thing to do, especially on someone so small and helpless. For us, it was a two-person job (shout out to all the nurses that do it alone – you guys are superheroes). The cleft created an added challenge – if baby was crying too much, the tube would loop through the hole into his mouth instead of down the esophagus. We would then have to take a breather, calm him down and try again a bit later.

Add in the fatigue and emotions that come with the adjustment to becoming new parents, taking care of two newborn babies, and continuing to heal post-delivery – it was a lot.

3. It felt like we weren’t making any progress

The path to finally getting him off the tube was the definition of a slow burn. We would go into our appointments with our doctor and feeding team and they would feel like he was making great progress. But, in my day-to-day view, it was hard to see the wins.

Gradually, his volume was increasing, he was getting more comfortable with the bottle and he was getting more efficient at eating. But it seemed like each time we celebrated a milestone, like consistently eating a certain volume, the milestone had changed and he was still however many mls away from a full feed. It’s hard to measure progress when the markers are constantly moving.

Still, as small as they seemed, every improvement was a baby step toward getting him eating on his own.

3. Free at last!

Just before Christmas, when baby was just over two months old, I talked to my dietitian about doing a trial with baby without the tube. At this point, baby was consistently drinking 90 to 110 mls of formula on his own via the bottle, so our top-ups had become very small. He was able to do this in about 30 minutes.

Because of the volumes that we were seeing and how steady his growth had been, she asked me if I was okay with trying him without the tube. Oh boy, was I ready! We had tried about a month before to take out the tube and see how he did and found that he still just wasn’t eating enough on his own. Having tried once and failed, I was nervous about trying it again.

For the first week, he continued to eat just shy of the 120 ml mark but we found that once we were no longer giving the top-ups, he started to get in touch with his hunger cues. Once that happened, he hit his target consistently. We were still using high calorie formula and would continue to do so until after his lip repair surgery.

When we got to our next appointment, baby was still growing great. It would take me another couple of months before I could finally let go of the fear that he would need to be put back on it, but we did thankfully, permanently, say good bye to the NG tube.

A happy conclusion

Getting our baby off his NG tube was the best Christmas present we could have asked for that year. It’s easy to forget the time that we spent washing syringes and gravity bags, sterilizing water for checking placement, re-inserting his tube, holding him while he cried during his night feeds, worrying over every feed. It was a tough time for our family, as we adjusted to having two newborns in our home and one who had extra needs. But, by the grace of God, we made it through.