Day 281

Wow, feels like today has gone on forever!

The day started at about 530am, Ellie stirred and woke Hannah, Ellie went back to sleep, Hannah fell asleep on me…..

I found out Ellie’s swab got lost, it’s rare but it does happen…. no swab taken today so we will keep our room for a few more days.

Some things that happened today, Ellie’s had 10 minutes off her high flow, the girls pulled faces at and consumed a small amount of pear, the girls actually synced their brief sleeps for a change – unfortunately this meant I missed my walk outside and one of the NICU drs were very disappointed to visit and have no babies to play with.

Ellie’s reflux is quite bad in the evenings and they are having trouble getting appropriate mylanta (on top of her other two drugs) to help settle her – so the afternoon/evenings are long (I sit her up in bed with lots of support so she can rest….. add in time with no breathing support and a new feeding tube! and that results in a very tired cranky baby and of course Hannah is hungry at that time….. ahhhh, life with twins. Ellie’s reflux is so bad for 3 reasons, family history, because she has had a feeding tube for so long and because she works so hard to breath the pressure in her diaphragm and chest puts pressure on her stomach (this is the biggest culprit).

Back to Ellie getting a new feeding tube, after much discussion it was decided pulling her NJ out in a controlled setting was better than waiting for her to do it. We are on NG feeds! This is a tiny step in the right direction feeding wise. So far she has tolerated it well, but she is not up to her normal volume of milk yet. She will be by the morning.

Family day tomorrow! (The start of a couple of days the six of us get to spend together – except Saturday)

*Deb

A present of beautiful clothes and these headbands were given to the girls today.

Mum thinks it’s funny this way.

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2 thoughts on “Day 281

  1. That is so unfortunate that the swab got lost (the lump in my cheek is my tongue) – the private room for Christmas – yay! That’s really good news about the NG tube – hope she continues to tolerate it and that they can come up with a solution for the reflux issues, poor bubba. Deb, today’s photos are all delightful but the ones of the Humphreys women together are just soooo beautiful xo

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  2. Loving all the photos. All the Humphrey Girls look beautiful. Wishing you all a very peaceful Christmas and bring on 2017, happy and healthy and praying that you will be able to bring Miss Ellie home soon. Love from the Cartwrights xxxx

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