As Stella’s occupational therapist put it, “Stella has internalized the joy of eating.”
Her feeding aversion is, well, history. A memory. Though not a distant memory, of course. We still get nervous if she goes for a long stretch without eating. We still watch her eating behavior like mama and papa hawks, and breathe a sigh of relief when she finishes a bottle. But mostly, we are in complete awe of Stella’s incredible appetite. Her ability to down six ounces in less than five minutes. It’s nothing short of a miracle. But then, miracles don’t come easy. You have to work for them. You have to be patient. And you have to believe. There were moments when this wonderful outcome didn’t seem possible. But deep down, we always knew she could do it. That the tube had to go. There was no question.
Stella’s intake for the last week has been between 770 to 875 mls a day. Of course, her formula is made at a 20% higher caloric concentration than typical breastmilk or formula. So she’s getting quite a lot of nourishment, which is quite evident in her diapers! The really crazy part, for us, is that she now takes in 160-180 mls at a time. We remember the days of her taking only 20 to 45 mls, and thinking, “Well, that’s good! She’s eating, and we can build on that!” Then we were absolutely thrilled when she showed she could take 100 mls on occasion. We remember her screaming at the sight of the bottle, arching her back and tossing her head back when the bottle was offered. Now she lunges toward the bottle and pulls it to her mouth. She cries UNTIL she sees the bottle. It’s just astounding.
I remember driving one day, during a wind storm that hit at the height of Stella’s eating troubles, listening to Patty Griffin’s “Love Throw a Line” and singing and crying. This was back when I was so sick with worry, and so overwhelmed, that I couldn’t eat or sleep. I stopped at a light and looked up to see a mighty, towering evergreen tree whipped up into a frenzy by the wind. The trunk was bending and swaying and the bows were being tossed about so vigorously that the tree looked angry, as if it were fighting back at the storm. Yet, it was clear that this tree could handle the winds. In fact, it was designed to withstand such a storm and had lived through hundreds of them. I saw myself in the tree and its wild, fitful dance. In that moment, even though I’d been feeling like I was losing my grip, I knew I could handle it. That I would help Stella recover, and that we would be okay. Even as Stella and I struggled, we were staying strong at the same time. Just like that tree. I’ll always remember it.
Yes, we’ve weathered a storm. That said, during our stay at Seattle Children’s Hospital, I was struck by how incredibly lucky we are to have Stella–a healthy, happy child, who had a temporary, treatable issue with eating. There are so many children and babies just struggling to survive. Babies like Kayleigh Freeman, who was born weighing just one pound and who has defied all the odds, and bounced back after countless surgeries and trials. (We bought bracelets to support her and will wear them with pride when they arrive!) This experience with Stella has truly opened my heart. I already loved all babies and children, but now there is a whole new layer to that love. A compelling urge to help little ones in need. Cody and I already sponsored a child, and recently, I signed us up to sponsor another little girl–her name is Anyi and she lives in Honduras.
We’ve learned and grown so much over the past five months. (Can you believe she is five months old???) We are truly blessed. Stella is thriving and, as always, an absolute joy. I want to help other parents find the same feeling of happiness and relief that we have experienced. In the coming weeks, I will find a way to put my strengths, talents and passion to work for children who are struggling. If I can make life even just a little bit better for even just one other baby, well, it would make our experiences all the more meaningful.
You know that feeling after a storm has passed? Quiet and calm settles in over everything. There is a striking stillness in things recently battered by what seemed like relentless winds. The scents and colors of the earth are more vibrant thanks to the rain. That’s what it’s like around here now. Brighter and more peaceful. Except for the teething.
Ha! Now we get to focus more on all the “normal” baby challenges and happenings. Every time I bend down to pick up the teether toy that Stella has dropped for the thousandth time, I smile.
I am thrilled to read that Stella is doing great. I can’t thank you enough for sharing all of this with us, your story is inspiring and I have no doubt that Stella will continue to amaze all of us has she makes her way through this wild world.
Thank you so much for sharing your stories of struggles, trials and successes. I am glad to hear she is doing so well.
I came across your blog when googling “tube fed babies deserve to eat” as suggested by my OT. You see, my soon-to-be 8 month old daughter is currently with an NG tube and just recently started a weaning program prescribed by a feeding clinic here in Toronto, Ontario, Canada.
While reading your blogs, I couldn’t help but see so much resemblance in Stella’s story with my daughter, Kay, even in the errs of the hospital. Although they were not the same, I wonder too, if we could’ve sped up the process, had they not occurred. Kay’s has had her tube since May for a feeding aversion secondary to her reflux as well. They suspected a cow’s milk protein intolerance as well so she was put on the special formula.
She was NOT taking anything at all. Refuses to suck on her bottle, but will gladly do so on her pacifier. We had started solids, but still she depended on her tube for the sole of her nutrition. We were booked for surgery for her to get a Gtube, but was intercepted by an appointment with this feeding clinic (phew!). Because no one in the hospital knew enough to coordinate this appointment before we left the hospital in June (hospitalized for 1 month for investigation and treatment with tube feeding), we waited until the end of August to get this appointment. I actually had to request, myself, of our paediatrician to be referred to this clinic!
My heart is heavy with thoughts she will not succeed. Kay still has her tube as I haven’t been able to cut that safety rope. Her treatment, though similar to Graz, involves hydrating her with an electrolyte solution, through the tube, whatever volume she doesn’t take by mouth. Day 4, and she’s not taking more than 320ml of formula. Needless, to say, she’s losing some weight. Born shy of 6 lbs, and on the 3%tile since birth…. she doesn’t have much to lose.
I wished I had come across your blog earlier in my struggle to nourish my (first) child. I, at that time, had searched for similar support and answers, but yield no such aide.
Again thank you for sharing your stories.
Hello. I was going through website and I found your website. It’s very inspiring. I really need your help. My baby is on ng tube since birth and now he is 5 months old. I am so stressed and sad. I really want his tube to be out. He has large asd( heart issue) I try feeding him orally but he has sucking problem, though he is good in swallowing. I try giving milk by spoon
He is good in swallowing but cries a lot. He doesn’t want anything by mouth. I am very stressed mother who has no life left now 😢Please help me
I am so sorry to hear about the incredible stress you are under–I remember feeling the same way. Are you working with an OT or feeding specialist? What kind of support do you have? I’d love to hear more about what’s going on. It sounds like you are not getting the support you need but do you have anyone helping you at all? Hang in there. BIG HUGS!