It is Feeding Tube Awareness Week. This is part of the girls’ story that I haven’t shared many details about, but it has been a huge and integral part of their journey. So, in honor of this week, we will dive into the details of their feeding adventure!

Before the girls were able to try bottle feeding, they were fed through gastric tubes that went through either their mouths or noses into their stomachs. Both Cora and Jane were very talented at removing these little orange tubes often. They would reach their tiny little fingers up to pull them out, and if their hands were swaddled away they somehow found a way to push them out without the use of their hands. The worst was when Cora would reflux and the tube that ran down her nose would be coughed back up through her mouth. Then it would have to be pulled out completely and thread back down all over again. Poor little thing. I hated those NG/OG tubes. But I also loved them, because they were the reason my girls were growing.

When the girls were stable enough from a respiratory standpoint, they were allowed to try bottle feeding. I was told not to be discouraged if they didn’t take to it right away. Feeding takes a lot of coordination of sucking, swallowing, and breathing. Something that requires much time and practice for preemies. This would be their last hurdle to home.

It was January when Jane was ready to bottle feed. On her second attempt, Jane finished her entire bottle in under 15 minutes. Everyone was so impressed, we joked that she’d be coming home by the following week. That wasn’t the case. After that, she was hit or miss with her feeds.  The girls were fed every 3 hours and the volume was calculated by a dietician. If they weren’t gaining enough for the week, the volume would increase. It was like climbing an uphill battle. As I’ve shared before, Jane was our sleepy baby and would often fall asleep before she could finish her bottle. If they couldn’t finish their bottle within 30 minutes, the remaining milk would be pushed through their NG tubes.

When Cora was down to just a nasal cannula, she was allowed to start bottle feeding. We were forewarned again, that many babies intubated for as long as Cora was often struggle to feed orally. But she too surprised us and finished over half of her bottle on the first try without any issues. Cora took to bottle feeding really well at the beginning and was taking over half of all her feeds within the first week.  However, as time went on, she started to regress with oral feeding. Because Cora was trying to wean off steroids for her lungs, it bought us more time to practice bottle feeding for both girls before G-tubes were brought up for discussion. After giving a very generous amount of time, speech therapy, and trying many different bottle types and feeding techniques, Jane just would not feed consistently. She was even starting to develop a bottle aversion. Then the world shut down in March of 2020 due to the Covid pandemic, and that was when we decided we just needed to get these girls home and g-tubes would make that possible. Cora was having trouble weaning off steroids, so we knew she would have a longer stay than Jane. We knew this essentially would give her more time to practice bottle feeds, but that NG tube of hers was really starting t

o distress her, so we decided to have her g-tube placed as well.

The girls were scheduled to have surgery on the same day. At the time it felt like such a big, kind of scary decision to make. The girls had never needed surgery up to this point and the thought of sending your baby back for surgery is a little unnerving. If I’m honest, I felt like I had to grieve what I thought and hoped it would like when the girls came home. In our situation, we worked so hard to try to help them eat, and initially it felt like we failed when we didn’t reach those feeding goals. But now I look back and know that no one failed. I now know those g-tubes made so many other wonderful things possible for Cora and Jane and our family. Today I look at g-tubes as gracious gift.

Once the g-tubes were placed, it felt overwhelming and a little intimidating when we were first trained on how to use and care for them. After a week or so, it became second nature. We were told that in the girls’ case, their g-tubes would very likely be a temporary thing and that many preemies with similar backgrounds to Cora and Jane have their g-tubes removed shortly after coming home. We were hopeful this would be the case for them, but it wasn’t.

Jane came home about 5 days after surgery and Cora came home about 3 weeks later. By the time Cora came home, Jane was hardly taking anything by mouth anymore. As soon as she saw the bottle she would turn her head the opposite direction and start fussing. We always offered her a bottle before we would tube feed her, but it was becoming clear that bottles were distressing her and we were losing ground. Cora on the other hand was showing improvement initially and taking more and more by mouth as opposed to needing her g-tube. However, it wasn’t long before she started following a similar path as Jane. After being home for a few weeks, we had our first feeding therapy appointment. We were able to voice our concerns and frustrations with how the girls were feeding at home. The speech therapist noticed both girls had an obvious aversion to bottles, and recommended we give bottles a break. This took an immense amount of pressure and stress off Cora and Jane and also me and Chris.  Because the girls did not have an oral aversion, the feeding team felt hopeful that the girls would do well with baby food once they were old enough for it. So, bottles were a no-go, but we felt hopeful baby food would be the ticket. It was not.

Months went by, and the girls wanted absolutely nothing to do with eating or drinking by mouth. Their reflux was insane at this point. I thought our son Asher had bad reflux as a baby; not even close to what these girls were capable of. We tried different formulas, reflux meds, different tube feeding techniques, smaller/more frequent feeds (we were already feeding them every 3 hours!), keeping them elevated after feeds, “venting” them through their g-tubes between feeds, and yet there was still So. Much. Vomit.  We kept going to feeding therapy appointments every month and nothing was working. Don’t get me wrong, I loved our feeding team, and they were always so encouraging. Honestly, it kind of became therapy for me too, because I started thinking “what am I doing wrong?” and they were always quick to find the positive things to focus on. We were told to hang in there until the girls were 15 months old then we could switch to a whole food blend instead of a milk-based formula, in hopes that their reflux would improve after the switch. It did not. For their entire first year at home, the girls continued to vomit almost every single day, multiple times a day. The laundry was endless, the stains innumerable, and sleep was interrupted by more vomiting. We were living pretty isolated because of the pandemic, so there was just never any reprieve. We prayed and prayed and could not understand why this was not resolving for them. I felt discouraged that we weren’t gaining any ground in the feeding department. Who wants to eat anything when you feel like you’re going to throw up everyday? We knew that before they would have any desire to eat by mouth, we had to get this vomiting under control. I often thought,  “I don’t mind

if they need g-tubes the rest of their lives, as long as they’re not throwing up like this all the time.”

Growth and weight gain are HUGE in the preemie world. Thankfully the girls were gaining good weight. The reason for that, in which I’m about to tell you, is not for those of you with weak stomachs and sensitive gag reflexes. We would literally catch their vomit in a basin and measure the volume and then give them another feed equal to the volume they spit up and pray they would keep it down the second time. By this time, they were fed 6 times a day. They spit up after every feed, so we were essentially feeding them 12 times a day, not to mention the additional water we had to squeeze in there as well. It was all consuming, but again I found myself feeling so grateful for those g-tubes because they were keeping our girls alive and allowing them to thrive in other areas.

When I look back on those days, I wonder how we didn’t lose our actual minds that first year. I’d be lying if I said we didn’t grow weary at times, but I think we got through it because we were just thankful to be together, under one roof. Life was messy and exhausting, but it was better than NICU life. The girls were growing, developing, staying healthy and out of the hospital and that was much to be thankful for.

In May of 2021, our dietician found a newer peptide food blend formula. She told us she had never tried it for any of her patients yet, but it was worth a try. Within a week of switching to this peptide blend, Cora and Jane completely stopped throwing up. We were able to get off reflux meds and their desire to eat started growing. By August, they were eating a large variety of table foods without a single choke or gag.  It’s been 6 months since we’ve had to use their g-tubes for nutrition. Watching them eat today, you’d never know the struggles they faced. They still have days where they need their g-tubes for hydration if they don’t drink enough by mouth but are making improvements all the time. Thank You, Lord for g-tubes; they’ve helped our babies grow into active, happy, thriving toddlers!