Exciting Progress

Our little beauty

We wanted to let everyone who has been praying for our sweet girl know about the progress she has made in the last 2 days.  There have been a lot of "firsts" and we have thoroughly been enjoying every single one.

Yesterday Lydia was able to have her last IV removed.  She is now only hooked to a heart monitor and a probe that measures her oxygen level.  I came down to do one of her feedings and found they had put a shirt on her... and got ridiculously excited about her wearing her first clothes.  Lydia was keeping her temps up enough that she was able to ditch her NICU bed with a warmer on top and be put in a crib.  Every step we take towards being "normal" puts a huge grin on my face.

First time in clothes!

My surgeon for the C-section decided I could be discharged yesterday evening. Since I'm feeding Lydia every 3 hours I still can't go home. Joel and I were moved to a boarding room (kind of like a hotel room) down a different hall of the NICU. Since Lydia was in a crib and needing minimal monitoring  she was able to be put in the room with us. She is still hooked up to monitors in this room and she still has a RN  following her.  But who cares?  We finally had our fist family sleepover! Joel and I were so excited to have our girl with us. We figured life would be much easier when we weren't having to go to another floor to visit or feed her... or wonder how she was doing while trying to sleep. 

New digs!

Easier might not have been the right word... we spent our first sleepless night with Miss Lydia.  Eating and sleeping were not on her agenda for our first night together.  Her diaper changes are particularly challenging because of the dressing on her surgical site which often has to be changed at the same time as the diaper. Who knew a teeny tiny baby could make it so difficult for two adults to get changed. Despite the fact that neither of us could put together a coherent sentence by the time the sun rose, it was still a great night. Having Lydia in the same room as us finally made both of us feel like her parents and like we had some control in taking care of her.  If that means sleepless nights... we'll take it!

Today just continued the bliss. I loved having my precious girl with me all day.  The RNs say she is doing great at her feedings. She had her first nap with Daddy, her first bath, and her first time in the rocker with Grandpa!  Life is good.  

The best part of the day was our update from the neurologist.  He told us that her head has been looking good.  There is no sign of fluid accumulation in her brain. He said we aren't completely out of the woods yet... but it is looking like she will be one of the 5% of kids with a myelomeningocele that does NOT require a shunt in her head.  Praise the Lord! The surgeon said she is one of the lucky ones.  I don't believe in luck, but I do believe in a God who listens to prayer and heals.

I know I keep saying this, but... THANK YOU!  Thank you for your continued prayers for Lydia.  We are grateful.

Love, 
Joel, Amy, and Lydia