We're nearly 4 days out from the day we removed Ellis from her vent. We've made it past the crucial stage. She continues to do well. She's not had any breathing problems whatsoever and she continues to take her bottle. I wish there was a way to put into words what a miracle this is. I wish there was a way to give you the increase of faith we feel based on the facts we know of her case. According to her scans none of these things should be happening. According to her scans she shouldn't be here. We are most likely heading home this weekend after 3 long weeks in the hospital. The fact that my girl is going home without a trach or a feeding tube are two major miracles no one was saying she would obtain. She is going be going home on seizure meds for the foreseeable future. We want to see this stop. We want to see her swelling decrease. These are two very real needs for her among others.
Time will tell on many things for my daughter. Right now she's doing exactly what babies at this age should be doing: eating, sleeping and giving us dirty diapers. As time goes on there's normal baby milestones that we are believing she will hit. She will also be in therapy to help her with these things. As her Mom I will give her every opportunity to succeed in her therapies, it's up to the Lord to do the rest. We know He can, we believe He will.
All that being said, going home will be a significant milestone for us and trust me, I'm thrilled. But in many ways it's just the beginning of phase two. Phase two is going to be hard work. Phase two holds a lot of uncertainty. Still, phase two is also the time where we get to see the extent of His miraculous hand on her life. Every milestone reached will be celebrated for the miracle and gift that it is.
I've received several emails from people wanting to know ways they can help our family during this journey. Some amazing friends of mine heard that call and set up a fundraising page for us. Should you desire a tangible way to help, this is a way to do so. We're so appreciative of your prayers, which for us, is the most important way you can bless us. But I wanted you to know this page was out there as a resource as well. You can click here to be routed over. Thank you all.
I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.
The picture below is the day before Ellis came of her vent and the day after. My, how far she's come already...