Family Medical Motherhood

Meeting “Nora’s Mom”

October 12, 2014

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

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  • Reply Eva October 12, 2014 at 9:06 pm

    I met Nora’s mom at the hospital when she was first born!!!!! I’ve always known She would sleigh dragons for Nora the moment I saw them together.

    • Reply Betty Koolhaas-Noble October 12, 2014 at 10:46 pm

      Jesse and Tyler, you are amazing parents! Putting Nora first and gathering the strength to march forward. I pray for you everyday and have the utmost respect for the two of you and your entire family coming together and
      facing this challenge with God right by your side! Nora is thriving because you will not give up! Continuing to pray for her physicians to keep trying to find the solution for this beautiful baby that God has given you, knowing that you love and support her through the roughest of days! Much Love sent to you! Betty Koolhaas

    • Reply kellyabfallbrook October 12, 2014 at 11:01 pm

      You don’t know me, but I Eva keeps me informed. I pray for Nora’s mom and of course, for Nora. Keep your faith, hope and love alive! xoxoxoKellyAB

  • Reply Ralph Graves October 12, 2014 at 9:44 pm

    Thanks so much for sharing this and previous events. A thought just went through my head: “Maybe Nora’s thinking, ‘If Mom can do this, so will I’!” I pray that will be true.

  • Reply kellyabfallbrook October 12, 2014 at 10:59 pm

    You don’t know me, but I know your sweet family, though Eva, and I do pray for you, Nora’s Mom. Of course I pray for Nora too! Thank you for taking the precious time to blog. Keep your faith, hope and love.

  • Reply Susie Hovey October 13, 2014 at 8:35 am

    Dear Jesse –

    I hear the candid voice of someone who realizes that she can’t do this in her own strength … so thankful that Nora’s Mom is drawing on the amazing loving power of Jesus Christ!

    “May the God of hope fill you with all joy and peace as you trust in Him, so that you will overflow with hope by the power of the Holy Spirit!”
    Romans 15:13

    A prayerful voice from your childhood,
    Karen’s Mom

  • Reply Maureen Anschultz October 13, 2014 at 12:53 pm

    I’ve heard your name over the years from both Andrea and Hillary… Never has it been “Ordinary Jesse”. Jesse and Nora’s Mom are one in the same. Prayers everyday for All of You.

  • Reply Lisa October 13, 2014 at 2:01 pm

    “Peter, you’re a pirate…” exclaims Grandma Wendy to grown up Peter Pan in “Hook” when she views him differently than the Peter she remembers from childhood fantasy.
    “Jesse, you’re a mother!” exclaims Mrs Hoyle when she reads with choked up throat and tear filled eyes the tender, tender words of “Nora’s Mom” ‘s heart leap from the page.
    Yes, my love – you can do it. Don’t want to. Would depth-defying desire that you didn’t have to. Take this cup. But since in Your perfect plan, then Your will not mine.
    This is no fantasy. It is a beautiful, pain-filled, glorious, laughter imbued, heart wrenching, tender, exhausting beautiful journey of our souls towards our Savior.
    Time for more rum cake.

  • Reply Theresa Flynn Gasman October 13, 2014 at 2:41 pm

    I am sitting here in tears, Jesse. As you may know /remember , I am Thomas’ mom. Thomas who was diagnosed with cancer at his 18 month well baby visit, Thomas who had chemotherapy, seizures, air ambulance rides to UCSF Childens Hospital in the middle of the night, PICU stays, broviac catheter in his chest, multiple scans, blood transfusions, injections, anesthetics, surgeries, radiation, 28 days in the bone narrow transplant unit, 100+ days in the hospital…and more. You write so beautifully and I am so grateful to you for capturing and articulating that amazing love, amazing ability to step up when we are called, that amazing strength. ..born of faith and conviction and God’s grace. You helped me just now remember that I, Theresa. was afraid to jump into the cold lake water and water ski at age 7, but at 42 I plunged bravely, with determination, into much, much scarier water. You are much younger than me and yet you are brave and determined beyond your years. You go, girl! You ARE Nora’s mom…and how blessed you are. How blessed we are, to be called to love in these most unimaginable circumstances. I hold you, Tyler and Nora in prayer. Thank you for blessing us all with your courage.

  • Reply Jacks October 13, 2014 at 8:55 pm

    Praying always. Thank you for giving us specific things to pray for! Your blog is so beautiful and real. Thank you for sharing!!

  • Reply Betty Thom October 14, 2014 at 11:38 am

    Asking God to place his healing hands on this PRECIOUS CHILD!!

  • Reply Kim schulken October 14, 2014 at 1:45 pm

    I love love love opening this page and reading (& crying) and keeping up with your precious baby Nora (and mom & dad) gosh has our God given you the ultimate test of patience, compassion, diligence among many many other feelings that you must be going through. I have said over & over to breanna that God could not have picked better parents for Nora than you Jesse & Tyler, that you are perfect for this, that you will conquer this & love this child like no other. I say that because when Jacob was diagnosed with schizophrenia & hospitalized I prayed & cried ALOT & thanked God for giving him to ME, because I knew I could handle it, and I know in my heart you both can too. Love you guys sooooo much, kim schulken

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