Meeting “Nora’s Mom”

I had one of those moments this week- the moment where your heart sinks and that voice inside you says, “I can’t do this.”

It’s understandable really. There has been an underlying feeling of stress or even crisis trying to get Nora to eat this week. Something was off, she wasn’t acting hungry, she refused to nurse, yelled at the bottle – and when we tried a syringe, she spit out the milk we trickled into her mouth. We consulted with the neurologist, pediatrician, occupational therapist and a lactation consultant. We lowered meds and tried new ways to spark her interest in eating and support, what is called, her “mouth coordination”. Her suck, and swallow appeared disorganized.

A medication side effect? Oral aversion? A regression? Loss of appetite? Hard to say.

On Wednesday it was clear we no longer had a sustainable way to feed Nora.

We sat down with our friend/hero/ life coach/ Nora’s pediatrician and looked at her growth chart over the past few months. She had hardly gained weight since her 4 month appointment (she will be 7 months on the 15th), and without a sustainable way to get her nutrition, she could fall off the curve entirely.

The hospital was our next step.

We were admitted Wednesday night.

Nora was given a NG tube (through her nose right into her tummy) to get her the nutrition she needed.

Then we waited. We were sharing the room with another family. Their 2 year old child watched Frozen 4 times in a row and well, acted like she was 2 . Tyler slept on the hospital floor with his face wedged under the sink ( ewww sick), and Nora cried periodically throughout the night ( I would too if somebody inserted a spaghetti sized tube through my nose and down my throat.

The next day we received a visit from the occupational therapist. She played with Nora, offered her the bottle, stuck her fingers in her mouth. Nora demonstrated a weak latch and suck. The OT wanted to take a closer look at Nora’s ability to swallow. She ordered a swallow study to get an idea if it was even safe for Nora to attempt eating. Some babies can’t swallow at all. Some babies choke and aspirate.

Nora has the mechanisms to swallow just fine. Nora was not aspirating.

Still, through conversation with our doctor it became clear that Nora needed more calories and we were not leaving the hospital without the support of a feeding tube. One we would manage at home.

I watched the nurse use a stethoscope and syringe air into Nora’s tummy to check tube placement in Nora’s belly; it was a blur of wires, tubes and fluids.  I kept thinking “What is going on? I’m not a nurse, I barely do Band-Aids”. A nurse in training spoke up, ” in nursing school this would be like a 5 hour lecture”.

That’s when the voice crept in.

“You can’t do this.” I said to myself.

“You’re right,” I thought. “Jesse”, easily overwhelmed, afraid of tubing of any sort “Jesse” may not be able to pull it together.

This is hard stuff. A lot of people probably would have crumbled at the door of the Pediatric Intensive Care Unit – PICU- after those first seizures, and you couldn’t ever blame them.

Ordinary “Jesse” can’t do this.

But Nora’s Mom sure as hell can.

You see, Nora’s mom can do anything. She’s literally unstoppable. Nora’s mom looks at that tubing and says, “lectures are overrated. Hand me that stethoscope.”

Over the past few months, baby Nora has introduced me to a better version of myself. When it all seemed like too much, I couldn’t bear another seizure, I couldn’t manage one more neurology interaction I painted a portrait of a woman I call ” Nora’s mom”. At first she was a distant vision, one I could only aspire to, but one who spurred me on.

This week, in the hospital, ordinary “Jesse” met Nora’s mom. The two converged hitting head on. Then, when that scared voice creeped in, and my heart sank – so afriaid –  My gut, and Nora’s mom, said, “Let’s. Do. This.”

After a 4 night stay at Children’s Hospital, we are now home. Nora can in fact swallow various textures – which is great, but she is yet unable to fully coordinate a suck. We are working with an OT and our pediatrician to guide us through nutrition and treatment. For now our girl has a NG tube and Nora’s mom and dad are managing her care.

As challenging as this week has been, there are good things happening for our family and for Nora. We did start Nora on a new seizure medication two weeks ago: she has had an incredibly positive response to this medication. We have not seen a seizure cluster since we started the drug. We are praising Jesus every day and celebrating every cluster free moment we have. It is possible we are ” honeymooning” with this drug, and it is possible Nora is having smaller seizures we are unable to recognize.  But our neurologist said Nora’s response is “very promising”. Christmas in October? Only time will tell.

As you think of our family this week praise Jesus for our cluster free days. Pray against the side effects of all her medications ( especially this newest seizure drug as 1 in 3 children experience permanent peripheral vision loss). Please pray for a smooth transition to this new process of feeding; pray that Nora will again be able to eat independently.

Thank you for your overwhelming love and constant support of our family. Knowing you are praying and holding our family tight means the world to us.

—
Photo credit: Jessica Rice Photography