No Plan

I visited Clara yesterday and found her peacefully asleep on her tummy, and swaddled. She looked very comfortable and so peaceful. 

Her heart rate began getting up in the high 190's and peaking at 201. When I asked the nurse about it, she checked her temp and found that she had high temp reading of 40 c, which is 104 F. Of course I start thinking that she is sick, but they believed again she was over heated with all that she had on and the isolette had overheated. Eventually her temp came down, and it wasn't mentioned this morning when I called. Infections are rampid in the NICU, so of course it was the forefront of my thoughts. 

She was suspiciously up 78 grams yesterday in her weight. A usual daily weight gain is 30 grams. The above photo is a chart on her notebook that I read everyday. It tells me how she is growing day to day. 

This morning when I called she was down 20 grams, which now is 1160 grams (almost 2 pounds 9 ounces)

With Madeline, I never even thought about her day to day weight, or even her weekly weight. But in the NICU mothers look at this chart, clinging for progress. Growth is a huge deal. The lack of can open the door to all sorts of issues and concerns. In the past week Clara has gained 5 ounces. Even in the NICU growth is still really looked at weekly. So Clara is doing well with this, and continues to grow and tolerate more milk and calories. 21 mls and 28 calories. 

However with her respiratory issues there has been no progress lately. She is still on the vent at 56 days of life. The pulmonary doctor looked at her on Friday and said there was no way they could perform a broncoscopy. She needed to grow 500 more grams. This is test where a camera is put down her nose into her airway to look for obstructions that would cause her not to be able to breathe on her own. With this knowledge of what kind of obstruction it is, we could go from there and start treating. 

 I asked was she supposed to just wait on the vent until 500 more grams, which took take another month. I was told they didn't have a plan, maybe to just let her grow another week????

This devastated me. No plan is the worst. 

Of course I have read of all of kinds of things that they could ultimately do if Clara can not get off the vent, as she approaches her due date. Last night and even today they all haunt me. 

I feel like Grumpy bear from Care bears, with a rain cloud above him. Except my cloud is an all out storm, with wind and rain.  

The idea of her coming home with us, just gets further and further away. This feeling makes me incredibly sad. 

I have since prayed over and over again for God to intervene with a miracle. Maybe Pulmonary will change their minds and do the procedure soon, maybe Clara will gain 500 grams like in a week. Maybe tomorrow there will be another genius plan, that we can pray and hope for. As child like as it may seem, I pray and pray and pray over and over again for God to just get in the middle and say this is enough and make it better. 

No plan is just rotten.