Journal entry by Amybeth Adler —
We made it home! We were discharged last Tuesday evening and we have been getting into our groove at home. Van came home with his NG tube and we are working hard to increase what he takes by bottle to be able to remove it. One nice thing about the tube is that when he doesn’t finish a bottle, we are able to give the remainder through the tube, ensuring he is getting enough calories and nutrients every day.
Olivia is so happy to have her brother home. She wanted to pick him up when she met him. If Van is in another room and starts to cry, she will run in to check on him. She asks where baby is, is very gentle and loves giving him kisses. We are excited to see the relationship blossom between them.
Being home with a newborn is a different kind of exhausting but it is so nice to be together.
Van will be followed closely by our pediatrician and the ENT/cleft team at Children’s. The next big thing is having his jaw hardware removed sometime in October. After that, barring any complications, we will have palate surgery around 1 year old.
We will update this less frequently hit will keep you all in the loop. Thank you for all of the love and support.
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