Grace's Journey So Far

As I said before, it's been a lot as we transition to life in the NICU. For both Grace, and Sam and I. Our life from before is gone, but I guess that's what becoming a parent in general will do.

Right from the beginning Grace's heart has been steady, constant, and strong. For me that was a relief to hear and see, as many babies at this stage in gestation have many holes in their hearts still. While she wasn't able to receive a second dose of the steroid that's supposed to help with lung development while she was inside me, her lungs have also been relatively well behaved! Her bowels also seem to be working properly and there are no obstructions. These are blessings from God and answers to prayers!

However, Grace did sustain a brain bleed soon after she was born, and possibly once before she was born which had time to form clots. These clots have since blocked drainage and as of yesterday, the lumbar puncture that they tried (to drain any fluid from her brain through her spine) was unsuccessful by all human accounts. The first two attempts did provide a small amount but now that nothing has come out means that the ventricular drainage system is blocked. The doctors have warned us that these bleeds have damaged the brain tissue and could potentially mean mental, physical and developmental disabilities for Grace in the future. They have also warned that as the fluid builds there will be pressure on her brain that can cause more damage as well as immediate physical responses.

This is very heavy news. By all accounts she is doing great, her body is stable, and all organs are all functioning well! However, the brain is a pretty important part of this process. She has progressed to full sized feeds of breast milk which are fed to her through a feeding tube. As well as has upgraded to a jet/CPAP machine to help her with breathing and help support her lungs as she grows. This news of her brain is scary, and the doctors often give worst case scenario. They also have to legally offer us the option to stop treatment, as her prognosis of a life without disability is slim. To them her quality of life is low due to the potential brain damage, even though the doctors cannot tell us with 100% certainly that there will be lasting damage.

We have told them that Graces has value regardless of their prognosis, and that no matter the outcome we will love and care for our child. God has blessed us with the calling of being her parents and we look forward to rising to the challenge! We have also shared with them that we worship a very powerful God and that while we trust their hand in Graces medical care, we believe in the report of our God first. And we believe that God is moving behind the scenes in a mighty way, sustaining both Grace and us. He will make a way, even when right now there seems like no way, and we can trust in his plan and will for our lives.

I was reminded today that the more hopeless a situation may look, by all human accounts, the more powerful and mightily the Lord will move. By Him alone, through his miraculous works will Grace be healed and come home with us. So, we continue to wait on the Lord and trust that He is not finished yet. And take it one day at a time, as He has commanded, not borrowing tomorrows troubles or trying to control/understand/worry about a situation that we have no control over.

We covet your prayers as we walk this journey and pray a miracle may take place and that Grace will grow up to be a powerful testimony to what God can do!