Day 81 -Joy and Sadness

Today was a tough day which started with 2 hours of awkward hugs with Ellie who decided she was not happy nor comfortable in any position. Her oxygen requirements kept creeping up throughout the day and by about 2pm she had maxed out the support and was still crashing with a full lung collapse. The doctors had no choice but to intubate her along with a full course of morphine and sedatives. She now is on the exact same support she needed right at the beginning of her journey which is hard to swallow when you are up to day 81.

The doctors are testing for everything from blood infection to a possible virus and hope to have more answers in the next couple of days while Ellie has a break from trying to breathe and lets the intubator do its job.

Right in the middle of all of this I spent an hour with Hannah for her feeds. She was very happy to see her Daddy and was quite interactive. She happily sucked her bottle and even gave me a few smiles. She has blossomed without her attachments and has put on a whopping 156 grams since last weight in.

As always the girls are teaching us new lessons in life. Just like the joy and hope our faith brings us is not derived from an absence of pain and fear, the struggles Ellie is currently having do not take away from the joy we experience through Hannah. Our struggles and triumphs coexist and we do not need to wait for one to finish before experiencing the other.

We are so grateful for the prayers and support that are carrying us through the difficulties, and we celebrate with you all the amazing things the girls have achieved already.


The medical team rushing in to save Ellie


Ellie’s lungs (meant to be black)          Left is when she needed Cpap         Right is when she needed intubation


Ellie with all her old wires reattached. 


Happy Hannah

4 thoughts on “Day 81 -Joy and Sadness

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