I Love A Tubie

"Just like a lot of other NICU babies, our 33 weeker, Kelsey, had a feeding tube in the NICU. And just like a lot of other NICU babies, it seemed that feeding was one of the things that held us up from going home. It seemed like she struggled with taking a bottle from the minute the bottle was introduced. But she eventually did it and took full bottles a few days before going home.

The first weeks at home were the beginning of the struggle. We noticed that the time it would take her to finish a bottle started to get longer and longer. Some feeds were good, some were down right horrible. It seemed like as months went on, she got WORSE at taking a bottle. It got to the point that we were convinced she had an oral/feeding aversion. We went as far as purchasing a book to help us get through this “aversion”. None of her doctors were overly concerned because she was gaining weight, albeit slowly.

It wasn’t until she was almost a year old and she went for an MRI of her head that the anesthesiologist mentioned how bad she snored. Ironically, this is something we brought up with one of her specialist in the past and they told us it was just boogies and to use nasal saline washes 3 times a day and suck her out. She then went on to have not only an oral aversion but a facial aversion where she didn’t want anything to touch her face. But after that MRI, we were strongly encouraged to go for a sleep study. The sleep study revealed that not only did she had sleep apnea, but she had it so severely that she had an urgent tonsil and adenoidectomy just a few days later.

That procedure seemed to be the beginning of multiple hospitalizations for Kelsey. Where it did DRASTICALLY improve her feeding, Kelsey would get sick a lot. And every time she would get a sick, it felt like she was being hospitalized needing oxygen due to her underlying lung disease due to prematurity. Now this is not directly correlated to her feeding issues or her procedure, but it seemed that once she was 9 months old, she was in and out of the hospital. During one of these hospitalizations when she was sick, her medical team diagnosed her with silent aspiration and we had to thicken her formula/fluid to an almost nectar consistency. It was also during this hospitalization that they said maybe she would benefit from an NG tube. When I heard that, I broke down. After all the hard work and advocacy I did for her for an entire year, I did not want to go backwards. I wanted her to keep moving forward.

So we kept working with her feeding. But it still seemed we spent a great deal of time in the hospital during illnesses.

This past summer, everything took a turn for the worse. Kelsey ended up getting sick with parainfluenza virus which landed her back in the hospital. This hospitalization led to the worst experience of our lives- even after the NICU. Because of her chronic lung disease, she ended up nearly losing her life due to this illness. This hospitalization is a story in itself, but luckily, Kelsey survived. However, we realized during this nearly life ending experience that she was aspirating WAY more than we thought. She was ultimately silently aspirating enough where it was causing lung issues. And when she would get sick, her lungs were already too inflamed to fight a virus.

After this hospitalization, Kelsey went home with an NG tube-the same tube that a year ago I refused because I thought it would be taking a step back (a guilt that I struggle with silently, because what if I just said yes to it then?). This NG tube has been a saving grace. Looking back on her short 2.5 years of life so far, I can see she was borderline “failure to thrive.” She was small, wasn’t meeting milestones, and other physical symptoms that no one caught on to, including myself, because she was gaining weight.

Since her discharge from the hospital in August, she went from wearing 12-18 month clothes at a little over 2 years old, to being in 2T clothes and growing out of them. She is walking, starting to talk, and is the healthiest she has ever been. A lot of people ask- “when is she getting that tube out?” Honestly, she can keep that tube in for however long it takes her to stay healthy, happy, and GROWING.

For us, the NG tube journey is not a burden, a hassle, or an inconvenience. It is her life line. It keeps her healthy. And I can not be more proud of how far she has come since having it. Will it eventually be turned into a G-tube? Maybe. But even then, it will not stop us from looking at the beauty and the journey in it all. We love our NG tube girl and we are SO proud of her. She is the strongest person we know and blessed she is ours.” -NICU/ Tubie Mom, Jayme