This update is loooong. You have been warned....
The past three and half weeks have been impossible. Impossible to make sense of. Impossible to hold it together. Impossible to properly verbalize. But I will try. Out of respect for him, and for my family as a whole, I won't go into specifics about it. But what I can say is that MFH and I spent a lot of time loathing each other. Unspoken accusations. Misplacing blame. Slamming doors. The fucking stink eye. Oh yeah, we went there. Obviously, the stress of our youngest child being critically ill is taking it's toll. For as bad as that sounds, and for the most part, we are okay. We're trying as best as we know how to. We get angry, and then we get over it. But there's nothing like hearing some seriously shitty news about your sick child to unite two people for the greater good.
She was hangin' in there. Gaining and growing. Doing her thing. They performed the bronchoscopy two weeks ago and discovered nothing. No sublgottic stenosis. Chalk one up for Team Little Bird. Sounds like some awesome news, right? Not so fast. I'd give my left lung right now for that diagnosis.
Her blood gases kept coming back really, really good. Time to reattempt extubation yet again. The tube came out, and this time she lasted four whole hours before she began to struggle enough for her doctors to cry 'uncle'. She was overexerting herself, and unable to sustain the physical stress of simply breathing. Her doctor tried to reintubate her, but failed, twice. She then called for a respiratory technician to assist her. The tech made two more attempts, but still could not insert the tube. An ENT specialist was immediately summoned to her bedside, along with two anesthesiologists who induced general in order to finally be able to place it.
This made no sense. The scope showed no obstructions. Up until four hours earlier, Little Bird looked fantastic. Her vitals were spot on. She was alert, and very playful. She looked physically wonderful. So they opted to take a CT scan of her lungs, rather than the usual x-rays, to get a better look and hopefully pinpoint the problem. The results? Were absolutely devastating.
We've known, since her birth, that Little bird was facing upwards of eighty percent odds of having chronic lung disease. We knew, since August, that she has bronchopulmonary dysplasia. We also knew she was developing scar tissue, and was becoming dependent upon the ventilator. We've known, that because her lungs never had the opportunity to fully develop, that all of the above could or would happen. And we were aware that there was a very strong possibility of the ventilator making it all so much worse. But we never fully expected this.
This, the prognosis that we've dreaded from the word 'Decadron'. Approximately ninety percent of her lung tissue is scarred. Ninety percent. Steroids are no longer an option. The only course of treatment now, the only thing that is sustaining our daughter's life, is the very piece of equipment that threatens it. We have no other choice. She needs a tracheotomy. Our very first question to them, our first response to this news, was "How long will she be on it?". Her doctor replied, "Well, in the event of something miraculous happening...". She needn't say another word. We would not have heard her anyway.
And that is the best it gets. They've since formed a team of breathing specialists exclusively assigned to her 'round-the-clock care. At any given time while she is a patient in their NICU, she will now have one of these professionals at her bedside. In the event of an emergency, they don't even want to risk the time it would take to get someone to respond to a code. Because of her size and current condition, they were hoping to buy her another month. They wanted to wait until she reached four months of age before having to have to do this to her. Hoping, even from a scientific viewpoint, for some divine intervention. But after being re-examined by the ENT specialist, the sand slipped thru that hourglass faster than they had anticipated. They fear the odds of her potentially pulling her tube out again, or it becoming clogged. In the event that it comes out, they no longer feel that they could even replace it all. Her airway is too narrow to allow the tube to easily pass thru one more time. The procedure is scheduled for this coming Monday.
From that point, it will be several more weeks before she might eventually be released to a step down nursery. She'll need that time for observation. Once she becomes stable enough, she'll be transferred to a hospital closer to home in order for us to undertake the required six weeks of training we will need to learn in order to care for her. She won't be home in time for Halloween. She can't be here on Thanksgiving. And she likely will not experience her first Christmas in front of a decorated tree in her own living room. Best case scenario, she might be home by mid January.
The only medical hope we have left is just a sliver. We talking ten percent. Had she been sixteen or seventeen years old with these same issues, we'd have none. But because she is in the midst of experiencing the fastest and largest growth period of her life, there is window of opportunity, albeit very small, that her lungs may overgrow some of the scarring enough for her to hopefully, one day be completely extubated. But the amount of damage that's already there is so vast. Every day that passes while she's on the machine only causes more destruction. Just as quickly as new alveoli develop, the pressurized oxygen being pumped into her lungs causes new tissue to deteriorate. It is very literally a race against time.
I tried to sleep last night, but couldn't. I ended up downstairs, on the sofa, crying, at three o' clock on the morning. Until I remembered that she will likely never cry again. At least not in the vocal sense. Because of so many unsuccessful attempts at removing the breathing tube, and then having to reinsert it, her vocal cords have been severely damaged. There is a very real possibility that she may not ever gain the ability to speak. As it now stands, she can no longer orally express any sound. That alone just crushes me. When Number Five was born, she was our little Paul Revere. She cried, and cried, and cried. Colic, for the first three months of her life. We wore out tracks in the living room carpet from continuously pacing the floor with her perched on our shoulders, doing whatever it took to help her be calm. We actually bitched about that. We complained that she wouldn't stop. That all we wanted was one night of peace and quiet. And now, we have Little Bird, who can't and may never be able to verbally drive us crazy. I would give anything for her to be able to do that. Anything, for her to be able to wail at the top of her lungs in the middle of a crowded grocery store one day. Anything, for her to become a teenager and tell me off while stomping up the stairs. Anything, for her to lie to me and say that she did do her homework, or argue that her curfew isn't late enough. Because I can't stop thinking about everything, every single aspect of her life that this is going to affect. How do I erase from my mind the knowing that I have only ever heard that precious sound twice, and I may never hear it again?
This is exactly what we've been trying to avoid for the past I don't even know how many weeks. This eventuality. This outcome. I never thought I would ever second guess my decision to decline medication that may or may not have prevented all of this. Since the day after she was born, I've made a conscious effort to continuously remind myself of the positives. At least she made it thru the first twenty four hours. At least the brain bleed is gone. At least she's gaining weight. At least I got to touch her. I'm not ungrateful. And we knew she would almost definitely come home with something. Some sort of fall out. But for crying out fucking loud. WHY THIS? What the fuck did she ever do to anyone to deserve a lifetime of this? I'm probably going to offend, well...just about everyone when I say this. But God really needs to get his priorities straight. Take away the voice of someone who maliciously used it to hurt others. But not hers. Maybe I'm selfish, but I don't just want her to be okay. I want her to have the best quality of life that she possibly can. She deserves nothing less than that.
MFH and I have spent hour over hour discussing so much. The one constant question that keeps popping up between us is how are we going to do this? How is this going to happen? I don't doubt our ability to learn what we need to learn. We're already doing everything in our power to prepare our family as best we can for all of the changes that are coming. But I would be a liar if I said I trusted myself with her life. The risk is everything. There is no margin for error. And the equipment she requires might come with a manual, but it doesn't come with any guarantees.
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