Nora’s Story

Site created on December 6, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Jena Nakamura

Hello all!

I apologize for the radio silence. We’ve been home for about 2.5 weeks and the time has flown. We are slowly adjusting to our new normal, but still can’t believe our little family is all together under one roof. We are so grateful. 

Nora is doing so well at home, and gaining weigh like a champ. She is still exclusively fed by her NG tube, but her next swallow study on March 12th should hopefully give us the go ahead to start introducing little bits by mouth. We are hopeful, but even if all goes well, we likely will still need the NG for quite some time. 

We are happy to report that Nora is off of all sedatives and painkillers as of last week! Morphine was weaned in hospital, but she came home on Clonodine and we proceeded to wean at home. Thankfully, she responded well and we had no withdrawal issues whatsoever. For meds we are now just down to two medications for reflux and her Pulmonary Hypertension medication. 

Now, we have many appointments to look forward to. Weekly home care visits, paediatrician visits, Cardiology check ins, and CDH Clinic leave us pretty busy, but it’s well worth it. 

We will do our best to keep you posted as things develop but, for now, we are just watching her grow and soaking it all in. 

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