Staying stable and hopeful…
The past few days have been pretty good. It seems our Aurora Rose is staying stable and headed in the right direction. Her breathing is slowly getting better, they have been able to knock her pressures down some and she no longer is getting added breaths, breathing mostly room air on CPAP…with added pressure and occasional shallow breathing. They say her lungs are small, as they didn’t have a lot of room to develop with all the ascites, but overtime (once the ascites is gone) can expand, grow and get stronger.
The ascites (fluid in her belly) we thought went down a little but hard to tell as each nurse could measure slightly different…but not increasing so that’s good! Continuing to pray for the ascites to resolve and go away!
It’s so nice to see her without so many lines in her, and she’s able to wear clothes now! They have to be clothes that can work with all her NICU gear and they all look huge on her…but still nice…to make things feel a little more normal.
She LOVES her paci’s and to be swaddled real snug!
It still is likely a long NICU journey ahead of us…but taking one hurdle at a time. We continue to pray for her more immediate needs , like her ascites, her ability to breathe better on her own, her liver to start to get better, and for her little nose to heal...the mask with prongs, irritated her little nostrils, so they switched her to another mask and are trying to let her skin heal. Then we also pray for the less immediate more long term needs….like for her little head and brain to do more than the doctors think it is capable of. For her brain to start making new connections and to find new ways to do all the things they think she may never be able to do based on her MRI findings.
The balance between realistic yet hopeful is hard for me sometimes, so I’m learning it’s best not to fixate on it but to continue to read scripture, to pray, to trust, and to take each day as it comes. To believe in her, and in God with her, to have hope, but also to know whatever happens… we will make it, and we will be there for her, because we already love her SO much, and would do anything for her, to give her what she needs to thrive. Whatever that may look like.
Today what it looks like, is continuing to show up, to hold her, to sing to her, to pray with and for her and to be calm, patient, resilient, and to take it day by day!
What I do know is that I’m grateful for so many people showing up for us, and loving on us when we feel tired and weak, so that we CAN just take things day by day! Gods people are good, and we are very fortunate to get to experience, love, grace, generosity, and kindness like we never have before! Often we love to give and its hard to receive, but we are learning to not feel guilty but to feel grateful and hope we can pay it back or forward one day.
Matthew 6:33-34 “ Seek the kingdom of God above all else, and live righteously, and he will give you everything you need. So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. “
