Milestones

Since my last update Grace has made so much progress which has been so beautiful to see! She continues to defy the odds and surpass doctors expectations for her. I am continually reminded that we worship the one true God who can work mighty miracles!

Over the past week or so Grace has gotten back down to Low-flow and even did a 12 hour stint with no oxygen at all! Unfortunately she got to tired and her oxygen saturations started to drift a bit to much so she was put back into oxygen support. However, it is literally the lowest a person could be on (0.25 CC's). Our prayer is that as she gets bigger and stronger her stamina will increase and eventually she can handle being off oxygen permanently. We follow her lead though, and she gets whatever she needs 😊

First time with a free face!

She's not sure how she feels about it 😂

Back to low flow 🤷🏼‍♀️ It was nice while it lasted!

I have also been able to try oral feeding with her again and she has done very well! During the day I am usually able to do 2 or 3 bottle feeds and she has been drinking about 20-30 mls each time! This is a huge improvement, and she has also gotten better at the 'suck-swallow-breath' rhythm. 🙏🏼

Praying for her meal

Both of these things are huge milestones as doctors told us when she was 27 weeks old that she would most likely have a tracheotomy for breathing and need a permanent G tube port in her stomach for feeding. This was told to us in the same meeting where they offered "comfort care" as they didn't think Grace's quality of life would be very good based on her MRI scans. I truly believe Grace's diagnoses is quite serious and her life outcome by world standards, when based solely on facts and scans, is not great. But God! He is bigger then any doctors report, and we have seen him work miracles every day. Not just in our daughters life, but also in so many other NICU babies lived! We will continue to hope in the unseen and trust in the God of the impossible 🙏🏼

Chilling in her chair that's still waaay to big 😂

Us 3 girls made a nice meal at RMH and ate a family dinner together 🥰

Prayer Requests:

• That we can move forward with the shunt surgery soon (if it is still a necessary surgery - a prayer of ours has been that she won't need a VP shunt, but so far it looks like she will - we will continue to hold on to this hope until proven otherwise)

• Courage and comfort as another change is on the horizon as we move out of the NICU and head to the Neurology wing!

• Thankfulness for the baby shower being planned for us by my family, and the loved ones coming 😊