Right back where we started - part 2

Tulla had a new team of doctors.

While the ER can test for the most common viral illnesses, this children's hospital can test for the common cold. Surprise! Tulla actually was sick. Her cold was masked by her normally loud breathing. It wasn't even something I recognized. At this point, she always sounded junky, like she needed to clear her throat. I hadn't thought twice about that or her cough.

I had been told that was all just reflux.

The doctors might have been ready to chalk up all her other issues as symptoms of the cold, but I fought for answers. Luckily, this set of doctors listened and was equipped to help me. When I said she always sounded like that, they believed me.

They agreed that babies shouldn't sound that way, and we finally got a swallow study ordered. I had been asking for one for several months at this point. I was so relieved to have found a place where the doctors were on the same page as me. It just goes to show - a mama's instincts are usually right. And when it comes to your kids, you have to fight and push for the services you think they need.

A swallow study involves sitting or lying under an X-ray machine while swallowing a contrast liquid. The X-ray provides a live video feed, showing the path the liquid takes to the stomach.

Well, her swallow study showed that Tulla was aspirating all over the place. This means that when she tried to swallow, milk was going places that it shouldn't.

It was traveling behind her soft palate.

Into her lungs.

And gathering in thick condensation on the back of her throat.

It was determined pretty quickly that feeding by mouth was not safe for her. Finally, an answer. But I was angry that it had taken so long and another emergency room trip to find it.

That same day, her NG tube was placed. A nasogastric tube goes in through the nose and into the stomach to bypass swallowing. They didn't numb her, just one nurse holding her head steady and the other placing the tube.

The cool thing is that they have this bridle that they can place to keep it from getting ripped out. It's a separate silicone tube that goes behind the septum, clips to the NG tube, and is tied several times. This holds the NG tube in place even if the feeding tube is pulled on.

My heart broke that our nursing journey was now only a past dream. I had worked so hard to help her nurse, dealing with the shield, practicing every day... There was no going back. If I was lucky, we might be able to reintroduce bottles in the future.

There was a bit of a learning curve to feeding her with the NG. A large syringe attached to the end of her tube allowed milk to flow into her stomach using gravity. I had been feeding her on demand, so we didn't know how much or how often she should be eating. Her feeding schedule was a mess, so it took time and some suggestions from the dietician to get her into a healthy rhythm.

With her immediate feeding danger addressed, the focus shifted to finding a cause. They wanted to perform a triple scope the following day with ENT, pulmonology (a lung doctor), and GI to get a full picture of exactly what was going on and how her issues were connected.

It wasn't until the evening before that they realized they had overlooked the fact that she tested positive for a cold. With a positive viral test, they were unable to put her under general anesthesia, so the scope needed to wait four to six weeks.

Then, the most amazing thing happened. She started to gain weight! She filled out and seemed to have more energy almost overnight. What a relief to see her finally getting the nutrition she needed. It was a win we needed after everything we'd been through.

The next hurdle was her breathing. When Tulla slept, she needed oxygen, and they wanted to clear her from that before they would release us. We slowly weaned her down from half a liter to a quarter, then an eighth, and finally we were home free. Now we just needed to keep her healthy until they could schedule her scope with her new aerodigestive team.

Our journey was far from over. We still had more questions than answers. This time though, it felt like we were in a place where she could actually get the help she needed. We were working towards a solution that didn't just treat the surface symptoms. We had direction and hope.