It's an honour to have this opportunity to share Nina's story on my blog. She and her tube fed daughter, Emily, have come a long way over the past several years. I think that many people will relate to being in the care of a medical team that is not supportive of blenderized tube feeding. Hopefully this will become less common in the future. In Nina's case, her support came from a mom of another tube fed child and she was able to implement a blended diet for Emily thanks to this important connection. I am so grateful to Nina for sharing her story. To see more from Nina and Emily, follow them on instagram.
I feel like we've been on this feeding journey forever. Emily is 3 years old, and while it seems as though, and can often feel like we are experts in this area; the truth is, the learning never stops.
Emily was born with a condition called Treacher Collins Syndrome, a rare genetic disorder that affects the bone and tissue development of the skull and face.
Signs and symptoms of TCS vary and range differently from person to person.
In Emily's case, she was born with an underdeveloped jaw, creating an obstruction to her airway; and a cleft palate. Because of this, Emily requires a tracheostomy tube to help her breath, and a gastrostomy tube to help her obtain nutrients. But while she is thriving and stable, she is considered medically complex.
We didn't know that Emily would need a g-tube until she was 4 months old.
When she was born, she had an NG tube (nasogastric feeing tube), which was temporary, as we were feeding Emily using a specialty bottle, called the Haberman bottle. She took limited amounts by mouth, and the rest we gave through her NG tube. Since being discharged from the hospital, Emily proved to be a fighter and strong-willed. She pulled her NG-tube out numerous times a day. And after a month of being home, we found ourselves re-admitted to the hospital with a diagnosis of "Failure to thrive." Failure to thrive, felt very much like "failure to provide" as her mother. I often questioned myself, what did I do wrong? What could I have done better? What could I have changed?
Emily was vomiting, she was dehydrated, and losing weight quickly. That 2-week admission was harder for me, than it was for our 2-month admission. We were fortifying my breast milk with formula, in hopes that she'd get more calories. The formula we were using at home, could not be given in the hospital. So, we had to switch her formula and give her different medications that were supposed to help her stop vomiting. But neither changes worked.
Getting a G-Tube
It took a few long days, and lots of difficult IV pokes before we decided to give her a G-tube. It was a scary decision at the time. We didn't want to see her go through another procedure. In hindsight, I wish we weren't so scared. I wish we had done it earlier.
Upon getting discharged, with her new tiny g-tube, we were followed very closely by our community pediatrician. We had weekly weigh-ins to make sure Emily was gaining weight. She put on 2 lbs, and then stopped. For 3 long months, she stayed at 10 lbs, nothing less and nothing more. What were we doing wrong? Why wasn't she gaining weight? I was beyond stressed out, and scared. Every doctor's visit, I'd hold my breath while she was on the scale. I was terrified they'd send us back to the hospital, and that she'd be "Failure to thrive", and I'd just be a failure. I was obsessed with feeding her. Despite being on reflux medication, she was still vomiting and wouldn't go one day without. If she did, it was a great day, but those were far and few between. She was drowning in her clothes, that once fit her, they were then too big.
I asked if it was my breast milk? Maybe we needed to give her full formula instead. Anything she needed, I wanted to just do it. The doctor reassured me time and again, that it was not my breast milk. But what was it?
We continued to fortify my breast milk with some formula. Our doctor emphasized, "Calories, calories, calories". Slow and steady, she started to gain weight. And I mean really slowly.
Starting a Blended Diet
This is when I started to consider a blended diet. I had heard of so many benefits that could come from one. My main interest was in weight gain and decreasing reflux. But where to start? One of the most shocking experiences was when I reached out for help from our Complex Care team at the hospital, which included one of our Pediatricians, Nurse Practitioners, and Dietician, they discouraged me from trying a blended diet. We received no support on how to make that transition. They claimed that at Emily's age of 7 months, she was too young to start. Think about it though, babies eating orally, can start having solids as early as 6 months. I didn’t understand, and I felt completely lost and unsupported. The anxiety over my daughter's health consumed me. My Social Worker could see my stress. She was a wonderful source of support and put me in touch with a fellow medical Mama who had successfully transitioned her daughter, who was only a couple of months older than Emily, to a blended diet. What started as text messages back and forth about whole foods, food groups, volume, blenders, syringes, and how-to's, turned into a bond between 2 moms who really understood each other's experiences. A friendship we still have today, sharing photos of our now 3-year-olds, growing, thriving, and happy. This mom... where would I be without her? She connected me with her community dietician, who was filled with knowledge and expertise on how to transition Emily to a blended diet, safely and in a way that would change our lives. She gave us the tools and the education I had been missing from our medical team, a medical team who we heavily relied on. A medical team who in those months of us struggling, had let us down.
Switching to a blended diet wasn't easy. It took a lot of planning, and a lot of prep work. From finding the right blender- because any old blender did not suffice- to finding the right recipes and consistency, to troubleshooting any feeding plugs, switching to syringe feeding, figuring out the rate and volume we should be giving, and so much more. However, the community I was able to find online was amazing- from social media groups, to Claire’s Instagram page, there was so much support and education, which is what I needed, and what so many other parents still need. Today, we are working towards transitioning Emily to strictly oral feeds. Her cleft palate was repaired last June, and she's been motivated to eat by mouth more and more. When I was once scared to get the g-tube, I'm now completely anxious at the idea of living without it.
I'm so proud of how far Emily has come, and of how much we, as her parents have taken on, learned, and changed to make sure that she continued to thrive. While we may not be a g-tube family for much longer, I hope that I can continue to be a source of support and encouragement for other families who may need it.
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