Knowing the neighbors cat frequents our property, I urged him to retrieve the avian and bring it inside. While he found a cardboard box and some old towels, I started looking into all things how-to-care-for-an-abandoned-bird on the internet. For the rest of the day and well into that night, we followed the clock, feeding it with an eye dropper as instructed. Before falling asleep, MFH decided to check on it one more time. Unfortunately, old towels and artificial lighting did not compare to the warmth of its mother's feathers. Our rescue didn't make it.
Days later...Little Bird. But I thought nothing of that creature until nearly two weeks after that, when I awoke to the sounds of cawing just outside of my bedroom window. There it was. An adult crow, looking directly at me from his perch on the power line a few feet away. He kept his vigil for well over an hour.
A few weeks after that, he came back. Just like the last time, first thing in the morning. Watching. Cawing. Perhaps warning? I don't know. I would have been able to chalk it all up to coincidence if it weren't for the fact that it is now November, and once again, the crow is back. This morning, on the wire, outside of my window. Trust me, the voice in the back of my head agrees with you right now. She's paranoid. It's nothing. Just a friggin' bird. Right? Right?
And I do feel like I'm being paranoid. Actually, I feel like I'm going fucking crazy. We are currently in the midst of a very heated debate with one doctor on staff at Little Bird's NICU. Six days ago, she asked us for consent to surgically place a PEG tube. Of course, we asked why this was necessary, considering that Little Bird now weighs eight pounds, five ounces, and has steadily gained throughout the past week. We've been told more than once that unless weight loss became an issue, this was something that would be avoided. The doctor went on to explain that she felt long term rehabilitation was best for our baby, that she'd already consulted with a local facility, but that this place would not accept Little Bird as a patient with the NG tube that she's been thriving on.
In other words, she wants us to agree to risking our daughter's life in order to satisfy a legality. And speaking of legalities, when we declined consent, her words to us were "I would really prefer not to have to take this in front of a judge". And so, MFH and I did what I'm fairly certain any other parent in our position would do. We immediately retained counsel and passed it along to them.
You see, according to this one, solitary doctor, Little Bird isn't doing as statistically well enough in terms of learning the reflex to suck and drink from a bottle. It's also the hospital's policy to not discharge a neonate with an NG tube, even though she'd be coming home on a ventilator with oxygen, and with a nurse here eighteen out of every twenty four hours. According to this doctor's chart, she should be able to take at least a half ounce by mouth, because her gestational age says so. But, because Little Bird can only tolerate between four and ten milliliters per attempt, she is considered to be, in the eyes of this doctor, a failure. This doctor, only having had ever treated my child on three rotations during the last four and a half months. This doctor, who knows nothing about Little Bird, or what she is capable of accomplishing, when she's ready. This doctor, who has no idea the extent of the maternal wasp's nest she just pissed all over. I. Do not. Take threats. Regarding my children. Lightly. Ever.
As of today, Little Bird also takes two and a half ounces of formula every three hours, along with however much she decides to take by bottle, at each feed. She's been working with the CPAP mask, and recently broke four hours at a time under it. Her platelets have been holding steady and she hasn't required a transfusion in weeks. She's also learned how to communicate with the trach, by making noises within her throat that are very similar to that of a bull frog when she wants to play (and she thinks this is pretty funny, too! Showoff!). She loves her binky, and regularly signals when she wants it by looking back and forth and sticking her tongue out. Tell me, does this sound or look like she is failing at anything? Because if it does, I fail to recognize it.
MFH made a very good point the other night as we sat here debating what the hell we are supposed to do in a situation like this. I exclaimed that I could not believe that the very hospital that essentially saved Number Four's life eleven years ago could be so fucking bass ackwards. And not just the audacity to even attempt to force us into consenting to an unnecessary procedure. But since the twenty ninth of October, we've been working with one of their social workers in preparation for her homecoming. To now have some one say they feel she requires up to eight months of rehabilitation in an inpatient setting? Seriously? But, MFH is right. At some point in our lives, we all have at least one experience with a hospital. Most of the time, it's a good experience. Maybe even great. But, most of the time, these instances only last a few days. When you've spent four and a half months within a certain environment, you get a really good understanding of how functional (or dysfunctional) it truly is.
I can't even begin to adequately describe the kind of pressure that the last week has brought on our family. To say that we are cracking would be the understatement of the year. But then again, who wouldn't be? Who's fourteen year old wouldn't be skipping class? Who's fourteen year old wouldn't be having an emotional breakdown upon the realization that his baby sister can not cry? Who's fifteen year old wouldn't punch walls out of frustration? Who's eleven year old wouldn't crave attention so badly that she'd incite a family riot to get it? Who's three year old wouldn't play with her baby dolls and imagine that it's time to change their tracheostomy because she thinks it's normal? Who can honestly say that they can juggle this situation with a smile on their face the entire time? Because I can't. I don't know how.
If Little Bird needed the PEG, believe me, I would be the first person to suggest it. If I thought for a single second that she could not make progress with the bottle, this would be a non-issue. But I will not take the risk of anesthesia and infection based on the opinion of one physician. If this doctor is so dead-set on her need to subject a child to something like this, let her own children be her guinea pigs. Not mine. Little Bird can do this. I know she can do this. In fact, I am so certain that I am willing to bet a court order on it.
A big part of me was daydreaming over the past few weeks, hoping that by dumb luck, Little Bird would be home in time for Thanksgiving. We are a hundred and thirty four days into this fray today. How much longer without her? How much more could one family take before they completely crumble? That's all I want to know. Maybe someone will wake up and take their head out of their ass long enough to realize that a defunct policy is nothing more than a wedge between point A and point B. Maybe someone will find the courage to say, "Hey! You know what? This is a really stupid reason to ship an infant off to long term care", and break a rule. Little Bird has been breaking every one of their rules since day one. I think it's time someone open their eyes and see it for themselves. I think this doctor could stand to learn a thing or two from her.
For the time being, we're heading to the hospital, in hopes of spending a peaceful Sunday with her. Perhaps that crow that's been stalking me is an omen? Perhaps he's just watchfully waiting, as are we. I suppose we'll find out soon enough. Either way, I'll update on the situation. Prayers for strength, patience, and self control would be greatly appreciated right about now....
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