Lindsay’s Story

Site created on July 9, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated on Ava's journey as we move forward, but also envision weaving in Edie’s story and the medical hurdles to this point. We appreciate your support and words of hope and encouragement. Thank you for visiting and being part of our Aspen grove which represents the strength and power of community.

Newest Update

Journal entry by Lindsay Inzalaco

Ava’s surgery itself went well, but her body and our worry/stress meters have been severely taxed since surgery. In the two weeks post surgery we went to the pediatrician 3 times, urgent care twice, and to a follow up surgery appointment in addition to numerous messages between care teams. Her digestive track was a mess post surgery and then she started vomiting, running a fever, was lethargic, and struggling to breath, and inconsolably unhappy and in discomfort. She has not gained any weight since surgery which is very concerning. Trying to tease apart possible surgery complications from illness and having no context for what a normal illness course in a baby looks like has been exhausting and terrifying to watch - the constant moaning/whimpering, the absence of any spark in her eye or desire to engage in anything and unable to find ways to soothe her combined with sleep deprivation has led our minds to some very dark corners. We now know that she was fighting a viral upper respiratory infection (not COVID-19) in addition to the surgery healing and nasal stent discomfort, and teething. Thankfully we’re currently at place where we see more calm, engaged and happy Ava moments than painful, unhappy ones, but her nose stents still cause a lot of frustration and discomfort. We have to suction them multiple times a day so that she can breath, which she HATES so she cries and then there is more mucous to suction.. and on and on. She is waking 6-8 times every night, so no one is sleeping well. This mom thing is so incredibly challenging. I’m sure I’m not the first mom to doubt my capabilities or feel like a failure - but that doesn’t make the horrible feelings any easier. We are especially grateful for family and friend support right now and reminders that nothing lasts forever. Ava’s new smile is appearing right alongside the first emerging flowers of the year - the sunshine filled daffodil of new beginnings and the hope filled crocus.
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