Well….if I can be so honest to say that these last few days I have been dwindling down and feeling so broken, so weak. It definitely didnt help when the staff began to wean Jane off of one her meds and it failed because she was not ready for it. I was sooooo hoping that all of these steps would continue to lead in a positive direction. So, as I walked through the NICU doors this morning with my head hung low I ran into our social worker, Dana. She stopped me to ask how I was doing…she noticed the look I had on my face and said, “I will be in your room shortly.” After a nice chat with her and taking a few moments to breathe, I soon realized that God has not let me down and is not about to. TODAY he sent me Dana to listen to me and allow me to freely express my concerns. I also saw today that many of your prayers have been for renewed strength and peace. God couldnt have timed it more perfectly!
As for Jane, she is just hanging out. The first weaning wasnt successful, but the respiratory therapist said that is ok. They will try again. The cardiologist reminded me that every baby is different; for some it only takes one time and for others it takes 3 weeks to reduce pulmonary pressure (which is what the weaning process is all about). He also told us that they are still waiting to hear back from Stanford about their opionion. Apparently, Stanford has a little more experience working with smaller babies that have Ebsteins. Either way, we are in good hands.
Elisabeth, I am so sorry that your day started off low, and that these days that should be filled with joy are layered over with sadness. We can only imagine how hard this is for you. I continue to be amazed each day by how much strength you have shown through this ordeal, and that even in your despair you still recognize the hand of God. I wish I could be there every day to give you a hug and let you know we love you. God loves you. He has this!
The Lord your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.
Zepheniah 3:17
I am looking forward to a day when we can sing in gladness over your daughter, hoping for the time when the wretchedness of the day is past and joy swallows up all your sadness. Until that time, we love you and continue to pray for your strength and your patience, and a deep peace that comes from our Father, that He would take away your exaustion and fill you with the knowledge of His presence and His love for you.