#growbabygrow – Our journey through failure to thrive and NG tube feeding.
When I was pregnant with baby number 5, we had already started the conversations with our doctors. The plan of action for the seemingly inevitable battle with Failure to Thrive. (FTT) You see, each of our kids has fought this battle and to this day, no one has a definite answer as to why — just some observed solutions and suspected causes. As my due date approached, I knew this situation would be no different. Call it mom instincts (or just common sense based on the fact that I was 39 weeks pregnant and looking more like 33 weeks) but I knew he would be born small. Each of my 5 kids has been born smaller than their previous sibling. Small for Gestational Age is a term we are familiar with. He was born small. We (with the guidance of his medical team) decided to see where time got us. My milk came in quickly and with abundance and he was nursing well (despite a fairly significant tongue tie that was examined by no less than 6 doctors and feeding specialists and determined not an issue at all!) However, as each of his first 4 weeks of life flew by, his weight gain was not enough.
This is when the fun really started. He was gaining, just not enough. We began playing with equations. Could we still let him be EBF but increase the calories? Didn’t work. Could we supplement a few feeds per day? Didn’t work. He kept plugging along the same ever-so-slow weight gain pattern. So, we turned to the amino acid based elemental formula that had worked for his brother and then upped the calories with what is essentially an emulsified liquid fat.
As we approached 3 months, things were still stagnant. We now had a scale at home and were weighing him once or twice a week. It was stressful. My heart would race every single time I had to put him on that scale. Would it yield a better result? Would things be worse? What will his doctor say after I email it to her? Then it happened. At 15 weeks old, things weren’t improving and his lab results were starting to show signs of a malnurished body. As a mom, I saw those words and felt like a failure. (If you are in this situation, it is natural to blame yourself.. but if you are doing everything in your power to help your baby gain weight and these diagnosises are still in front of you.. STOP blaming yourself!) Here I was, feeding my baby as I was told. Breastmilk is supposed to be the best thing for babies. My supply was fine, I could feed him and pump like no ones business. We had turned to formula. We turned to a crazy concoction of a food solution and “extreme protein malnutrition” and “failure to thrive” were still front and center on his medical charts. We ended up in another specialist office and that’s when it was decided. He would be admitted to the hospital and put on an NG tube. I spent the next day sobbing in self pity.. I knew why this decision was made and my husband and I both agreed with it. We knew it had to happen if we were going to have any hope at helping our baby grow and possibly finding out why he wasn’t. That didn’t mute the hurt, though. I sat there the morning before we checked into the hospital nursing my baby for what I knew might be the last time and I cried. I felt mad that my baby would be taken off of breastmilk at 3 months old. I felt nervous about what an NG tube would entail. I felt so many emotions.. I can’t even describe what it felt like. As I sat and held my baby, though, I forced myself to breathe and my husband helped remind me that I would do anything for our baby and this was no different. So off we went.
They insert his NG tube immediately upon our arrival. I was somewhat overwhelmed and a little traumatized. They took a LONG tube, lubed it up, held down my screaming baby and proceeded to feed it down his nose. I watched it get shorter and shorter and my baby get more and more angry.. and then one of the nurses looked up at me, smiled, and said “It’s okay, mom. We’re going to make him better!” I was calm.
While he was admitted, I continued pumping. I don’t know why. I think somewhere in the back of my mind, I hoped they would tell me that he would be able to nurse again.. or that he could have breastmilk in his tube.. something. My entire baby raising experience has been filled with people telling me breastmilk is best for baby. If there was any chance that he may be able to have it again, I wanted to make sure I was prepared to make that happen for him. He was in the hospital for 8 days. The first 4 days yielded no change.. but the last 4 showed wonderful progress! I’ll never forget the nurse coming in right before rounds to ask if there was anything I wanted to make sure they bring up to the doctor.. I mentioned that his legs were swollen. He had socks on (he has trouble with temperature regulation) and his once-too-big socks were now tight on his calf and leaving indentations. She pushed on his leg, looked at me and smiled “He’s not swollen.. That’s fat!” We celebrated. Those nurses were almost as invested in his health and well being as I was.
When we came home, he came home with the NG tube still in place. This was a whole new experience. It was definitely overwhelming to think about.. and the first week was a balancing act for sure. He was not only on the tube, but a high calorie density. I swear, those first two weeks — my life was measuring and mixing specific caloric recipes for formula, pumping, and attempting to keep his hands off of his tube. There were definitely some tears as we adjusted, but life adapted quickly as we got used to our new normal. Ultimately, after 3 weeks, I decided to stop pumping. I cried almost as much then as the last time he nursed, but I was also oddly okay with it.
The NG tube definitely comes with its difficulties and learning curves. Priming the pump, making sure you’ve mixed enough formula to last the entire feed. (In our case, when he came home.. he was on a continuous slow feed for 10 hours overnight so that he could do bottles during the day to keep up his oral motor abilities) Our baby also loved playing with his tube. So much so, that he managed to pull it out no less than 8 times. We quickly learned some hacks to keep it out of his grasp, and I even learned to reinsert the tube myself. (This was a whole new level of nervousness and self doubt! Eep!)
Life with the NG tube, for the most part, proceeded as normal! It was more work, as I mentioned above, but for him.. business as usual. It wasn’t invasive for him at all. He was just as happy and content as he always was.. he just now had a tube in his nose.
As he approached 4 months old, you could finally see the progress he was making. I finally felt like it was doing its job and things were working. Like our baby could actually thrive. How long he would need the tube, however, was still not clear. Day by day, week by week.
He also began meeting more developmental milestones. This was huge for us!! Our previous two kids had gross motor and developmental delays — this was a concern for us and his doctors.. as he grew and began doing things typical babies his age were doing, I was even more confident that this was the right decision for our little man.
We have been, and will continue, to document his progress on our social media channels. I was hesitant at first, but as I began posting, more and more moms either facing FTT diagnosis or with tube fed babies began reaching out. Whether it was looking for support and comradeship or to offer support and reassurance. I knew then that using our voice was a good thing. If you’re reading this to follow our journey, our little man is 5 months old now. He’s made amazing strides in his growth. He’s still very small for his age (well below 3%) but compared to where he was, he’s doing amazingly well! I don’t know what the future holds for him. He has an amazing medical team that we trust (this is critical!!) and I finally feel like he is thriving.
If you’re reading this because you find yourself in similar shoes.. about to climb the Failure to Thrive mountain and unsure of what it means, blaming yourself, or just looking for someone who understands — I hope our journey offers some support and reassurance.
“I’ll never reach my destination, if I never try. So I will sail my vessel, until the river runs dry” — Garth Brooks “The River”
Leave a Reply