Why?

The past eleven days have been an emotional and medical tug of war. I don't even know where to begin explaining everything that's been happening. In my last update, I mentioned that Little Bird's platelets were once again low. The next day, she ended up needing and receiving the second transfusion. She was such a little trooper, and soldiered on thru it again without an issue. For the following few days afterward, she continued to progress. Her weight even surpassed the three pound mark which was definitely something to celebrate. Her IV's were also gone, again. And she was holding steady on the vent. But by Wednesday afternoon, she began to decline. 

She is forty three days old today. Thirty six of them have been spent on a ventilator. A ventilator that is now causing damage and deterioration of her lung tissue. Her most recent chest x-rays have revealed that her airway is inflamed, making it that much more difficult for her to successfully breathe on her own. She has become dependent upon the machine. We knew that her risk of developing lung disease was already phenomenally high just from the severity of her prematurity itself. But now, the issue is extremely concerning. Three days ago, we were pressed to make a decision concerning consent of a controversial intervention that the hospital wants to give her in order to reattempt extubation. Basically, they want to administer a long course of high dose steroids aimed at bulking up her lung tissue and capacity enough to overthrow the scar tissue she is developing. Sounds simple enough. Until they told us that there are some very serious long term side affects. Side affects that include the statistics that say that as many as sixteen out of sixty two neonates who've received this therapy have not survived.


About an hour ago, I made the call, and declined the medication. I hear them when they tell us that the benefit outweighs the risk. I get it. But something about this just does not feel right to me. I can not, in good conscience, agree to it. And it kills me to have to say no. I know she needs to get off of this machine. Believe me, I do. I want nothing more than to see that monstrosity of a tube gone from her beautiful little face. To see her smile in comfort rather than wince in pain when she tries to stretch or yawn. But not like that.There are a few other options that she may be a candidate for, and tomorrow, we'll discuss those with her doctors.


Doc H noticed some recent and telling changes in her that prompted him to run a series of tests that have since confirmed that she does in fact have the early stages of NEC. The cultures came back negative for infection, but x-rays have indicated that there is a section of her bowel that looks extremely suspicious. Her feeds were halted on Friday, and she began broad spectrum antibiotics in an attempt to gain some sort of control over the situation. All of her IV's have since been reintroduced to provide fluids, lipids, and glucose. She is very, very angry about not having her food. And I am very, very angry that she's already lost forty grams because of this. The hardest part is knowing that this is the best this coming week is going to be, because it will be at least seven more days before she will be able to eat again, and that's best case scenario. 

Why is it that the most evil and horrid human beings roam this Earth so effortlessly, and do nothing but bring pain and harm to everything and everyone they touch, yet my daughter is forced to suffer like this? Why is it that she has to endure test after test and needle after fucking needle? Or days without food? Or even so much as the comfort of a hug? Why? Where is that fair? She does not deserve to hurt like this. 




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