Day 157

Well things have seem to come full circle here at the NICU for all of us. It seems that after 5 months of being here we have arrived back to many of the emotions and circumstances that held true the first few weeks. The good days, the bad days, 1 step forward, 2 step backwards and me awake at 4 am staring at the ceiling while these words ache to get out...

The one thing that has changed is the fact that we are no longer dealing with a premature baby that is developing outside of the womb. We are dealing with a full term beautiful little girl that is very, very sick. That alone changes everything.

What I have come to accept in the past week is that there is no balancing life outside of the hospital right now. There is no "new normal" to stay on schedule and do everything that "needs" to be done. There is today. There is right now. She is here right now and she might not be tomorrow. That realization does not change the amount of faith and trust we are putting into her making a recovery from this, it just helps us to prioritize what really matters- spending as much time with her as we physically and possibly can. It has been very limited this week but that changes today. From here forward I will spend as much time with her as I possibly can without any guilt or pressures to take care of all of the things that can be taken care of when I may not be able to take care of her.

The past month has brought many, many emotions. Emotions more raw and intense than we have ever known....

Anger at a doctor for not telling us what we wanted to hear, anger at a doctor for reassuring us we were young and could have another baby, anger at a doctor for doing absolutely nothing for an entire week to at least try to help her, anger at ourselves for not holding her enough when we could, for not giving her those bottles at night when she was feeding, anger at each other for no reason at all just because we are angry and don't know who else to be angry at. And in all honesty at moments I have been angry with God. I have cried out to him " just take her Lord if you are going to take her" and in the next sentence" Please God just give me another day, just one more day." The anger is subsiding. Then came fear.

Fear...Fear that every time the phone rings it could be the NICU with bad news. Fear in walking away from her and having it be the last time. Fear that people have given up on her. Fear that our world is going to fall apart because of this. Fear that if we hold her we will actually cause more pain than comfort. Fear that she doesnt know how much we love her. Fear that our prayers are not enough. Fear that our love is not enough. Fear that we willl not make it thru. Then came sadness.

Sadness in watching her fight against the tube down her throat, fighting against the very thing that is saving her life. Sadness in her immobility because of the tube. Sadness in touching her, smelling her and kissing her knowing that some day I may not be able to do that. Sadness in hearing Dylan ask when are we going to bring home baby. Sadness in trying to figure out where her pain is coming from. Sadness in seeing the emotions on my husband face. Sadness in just seeing a new mom with her 3 year old and newborn. A sadness so heart breaking it is phyisically and horribly painful. The sadness is always there but today also brought peace.

Peace in feeling the hands of God on me again and easing my pain. Peace in knowing that those same hands are on Bella and easing her pain. Peace in knowing that I can love her while I have her. Peace in knowing that no doctor is going to convince me that my daughter is going to die anymore than I am going to convince them that my God is bigger than her lungs. Peace in knowing that I can give her a bath to comfort her. Peace in watching her delight in a toy mirror in her bed and when relaxed she is okay. Peace in knowing that there have been other families before us going thru what we are going thru right now and they are home with their beautiful child who's lungs were "incompatible with life." Peace in the love of her nurses and staff who give her their everything. Peace in the Dr this week who is doing everything he possibly knows to do to get her to wean on the vent. Peace that God's grace is sufficient.

Bella's status seems to change daily. It is hard for me to report the ups and downs. We have made improvements, we have worsened, we have made improvements again, we have worsened again. The important thing to know is that she is still here, she is still fighting. She still smiles on occassion and her eyes are still bright & full of life and fire. We are still here fighting with her and for her. Some wise words I heard today were: there would be no crown without a cross, there is no day without a night and there is no victory without a fight.
The only weapons we must carry is faith, trust and love.

Much love to you all
Telisha