Today, we are at least one step ahead. Delaney's sats continue to be high, and after slowly weaning her off of the ventitlator she is now breathing on her own, with some oxygen support. They took the vent out at approximately 6pm and will only replace the the tube if her sats become compromised or her secretions do not remain clear.
Last night we were able to leave the hospital for a while with my parents, brother Jamie & girlfriend Sarah. It was a welcome distraction but not easy as so often our hearts and minds turn to our sweet baby girl. We are so overwrought with the unfairness of all of this, but despite that fact we remain optimistic. We are taking things really one moment at a time.
When we went to tuck her in last night her breathing was very "junky" with oral secretions and mucous. We were holding her and she seemed to be really uncomfortable and upset. So we thought it best to put her back in bed and let the nurses treat her. We really had a hard night, seeing her in pain and having difficulty breathing clearly brought back those awful memories from a week ago. We are just so thankful that we have eachother, we couldn't do this without such a strong relationship - let alone our faith.
Most recently, this afternoon I was able to hold her for about 2 hours. Her heart rate was calm and her blood pressure was down from where it had been. We know that she responds to us in some way. She just seems to be so much more at peace in my arms. I will continue to hold her and soothe her as much as possible. I can't tell you how good it feels to see her calm an breathing on her own, on my chest...like it was just a week ago. Lindsay is holding her as I write and it's wonderful to see that motherly glow in her face. I imagine her taking an afternoon nap on our couch, we long for those days.
Medically, they have weaned her completely off of dopamine, and adjust her oxygen feed as needed there may be a day soon when she doesn't even need that. They are also looking to reduce one of the siezure medications so that she may be less sedated and possibly engage her senses more. We are hoping that when the meds are reduced we will see more of her "typical baby" behavior return. More importantly we want to see her suck and swallow which will mean that when they allow feeding by mouth we can trust that she won't need assistance. Time will tell.
Today is Easter and is a day of rejuvenation, rejoice, and rebirth. We hope and pray that gods plan is to bring back our Delaney to truly be a part of our family. We want her to truly live, engage with us, and have some sense of autonomy. If this is not His plan we hope thy he will embrace her in His arms and bring her in peace to those who have already passed and that they may be able to look after our sweet Delaney.
We hope this message reaches you in peace and happiness on this Easter Sunday. Please continue to share in our intentions. We thank you for being with us on this most difficult stretch of our journey. You continue to give us strength and optimism.
B & L & d