MFH and I arrived at the unit last Thursday, just in time for the staff meeting. We made a quick pit stop to see Little Bird first, letting her know we were there. When we got to her bedside, we discovered that her physical therapist was just finishing up a session with her. This PT comes in once a week, and typically Thursdays, from the rehab center of which three of Little Bird's neonatologists have been pressuring us to consent sending her to. As he handed her off to me, he told us that she was doing very well with her Jane Fonda, and explained to his student shadow how far she's actually come in regards to progress. No sooner did he leave did Little Bird begin coughing. I could feel it on her back, the need for her airway to be suctioned. Even though this is something MFH and I are trained to do, it can be a tricky procedure, and therefore, we decided to look for her nurse in order to supervise us. But as soon as we said those words to each other, Little Bird spewed her lunch all over both me and herself. I flipped her onto her side and did a quick finger sweep of her mouth as MFH began grabbing the first couple of nurses he could find. By the time her nurse actually came over, I already had stripped the baby down, cleaned her up, and changed her clothing. Rebecca had been caring for her since seven o' clock that morning, and when she came over, she explained that the combination of too much activity and the full ounce she happened to drink for her by bottle right before we came was what probably led to this little afternoon delight. She took over from there, as Little Bird's social worker was summoning us to the conference room across the hall.
We walked into what was supposed to be a meeting concerning the baby's discharge to come home, and immediately knew something was amiss. Only one neonatologist, when Little Bird had eight on her team. The physical therapist and student shadow who had worked with her only a few minutes earlier. A respiratory therapist. A speech therapist. Two social workers. And eventually, Rebecca. We suddenly realized that this had nothing to do with the baby actually coming home.
The doctor began the meeting by introducing everyone and asking us if we had any questions in regards to Little Bird's medical history. I opened our NICU Bible (a notebook of every date, name, and procedure kept from the moment she was born), and started by asking her technical questions about the ventilator that our electric provider needs to know ahead of time. The doctor then asked us when we thought Little Bird would be coming home. We explained exactly what we were told during the course of the two weeks leading up to that moment. I told her how that day, for us, began with this meeting, followed by CPR training and rooming in. And that's when they ambushed us.
The doctor, sitting directly across from the nurse who had only just bottle fed Little Bird an hour earlier, began to reiterate the whole she-can't-eat-by-bottle-and-needs-long-term-care routine. She told us, knowing full well that she was lying and in full view of the medical professional who just let the cat out of the bag to us, that Little Bird was considered a failure by their standards. Obviously, I called them both out on this, and when I did, the speech therapist (also an employee of this long term care facility) jumped into the conversation, stating that Little Bird doesn't know how to wrap her tongue around the nipple of the bottle properly in order to create adequate suction. MFH cut us all off and declared that our mind was made up weeks ago, and that Little Bird would not be shoved off into a nursing home for babies. We would seek a second or even third opinion if need be, and deal with this on an outpatient basis. He told her that we strongly felt that she will eventually overcome this issue and that we saw no need for our daughter to be essentially institutionalized over something that they've never allowed us to see for ourselves, first hand. Up until that day, and as a matter of fact even as I currently type this, no one has allowed us to attempt to feed her. There was no way in hell we'd take their advice seriously when everytime we've asked, we've been shot down with the excuse of "she's too tired". Too tired because she just underwent a trach change, we totally understand. But, too tired because she just underwent a diaper change? Really, now?
The doctor went on to explain that for Little Bird, it was simply impossible to set up in-home care in any time span of less than three weeks. She then confided to the room that they hadn't even begun the process, yet. She said that because of this, it would be best to admit her into this inpatient rehab on a long term basis. Basically, Little Bird's medical needs were too much of a burden on MFH and I here at home. The therapists began to mimic her statements, describing what they were selling to us as this most wonderful hospice who would allow us to bring the entire family in on holidays and birthdays. I also took notice to the fact that neither social worker was saying a word. At that point, I could see the anger in MFH's face and knew that things were about to become very ugly, very quickly. In order to stop the meeting, I agreed that we would consider it, but for them not to expect an answer from us that day. I had to get MFH out of there before he verbally exploded on someone.
We left the meeting on those terms, and returned to the baby. Rebecca met us at the bedside and asked us if we wanted to partake in any care procedures. We agreed, and she lined up the next three hours for us. Bathing Little Bird for the first time, the G-tube care, trach tie changing and site care, suctioning as needed, and finally, us being taught the techniques she used in order to get Little Bird to eat those thirty millimeters by bottle. We'd also be given the opportunity to try this ourselves. We completed each procedure, step by step, but when it came time for the bottle, once again, we were brushed aside. Rebecca did show us each manipulation, of both baby and bottle. But she stopped short of handing the baby over, claiming that she was too tired to feed. I would have believed her had I not been standing there watching Little Bird make goofy faces at MFH. She was wide awake and wanting to play.
The social worker saved us from a scene. As I was about to enter into an argument of epic proportions with this nurse, she came over to speak to us. She wanted to know who specifically was responsible for scheduling the rooming in. I gave her the name of the doctor I'd spoken to four days earlier. And she informed me that they did not even offer rooming in to parents of mechanically dependent babies. In order to do this, the baby would have to be stabile. And as long as she's on the vent, Little Bird will always be classified as critical. Therefore, we couldn't be alone in a private room, without first-hand staff supervision. I kind of just stared at her, wondering what kind of a twilight zone I stepped in to. Believe it or not, I actually questioned whether or not I was truly awake. Was I having a nightmare? Was this really happening?
I had no time to question or discuss the fuckery we were suddenly encountering, as the CPR instructor came by to tell us that the course was about to begin. We followed her across the hall and back into the conference room we were just in a few hours earlier, scratching our heads the entire time. I don't know why the next incident even came as a shock to us, given the events of the day thus far, but it did. Right after we sat down, the instructor informed us that she didn't understand why they scheduled or even mandated this for us. It was basic CPR. Not the vent/trach class we required in order to actually save Little Bird's life if it ever came to that. And, to top it all off, she told us that they did not even offer the class we needed. We'd need to seek this skill elsewhere. In that moment, we both wanted to leave the room. But knowing we were being yanked already, I didn't want to give the staff any reason to say that we refused any aspect of the training. And so there went another two hours, wasted, which should have been spent with our baby.
As soon as we were deemed certified, we left the room, and the fourth floor all together. We needed to talk. We needed to vent. We need to take a minute and clear our heads. What now? What do we do? Where do we go? Who can help us? Never in the past nine and a half years since her passing have I ever wished to hear my own mother's voice more than in that moment. And so I told MFH to call his. Grammy would know what to do. She's been by our side throughout all of this. If anyone knows what we are up against, it's her. Aside from all of that, we needed the safety and comfort that only her voice could give us.
After spending a half an hour on the phone describing to her what had just happened to us, we decided that we needed time to take in everything, and to make a phone book's worth of calls to several other professionals, both medical and legal. We went back inside, and tucked Little Bird in for the night before coming home and beginning the process.
I spent that sleepless night collecting my thoughts and the entire timeline of events. I also devised a plan of action with MFH, which we immediately provoked the next morning at the ass crack of dawn. We began by calling the NICU of another hospital in our area. I spoke to the attending neonatologist, who confirmed that we were being snowed. She validated what we already figured as much. That it wouldn't take anywhere near the length of time they were giving us to hire a nurse, and that it should have been in place the moment the doctor scheduled our CPR course. After asking, she agreed that their unit could and would accept Little Bird as a transport patient, if for nothing else than to properly discharge her home.
Hearing that gave me the second wind of confidence that I needed to proceed. I placed a call with the respiratory technician who will be assigned Little Bird as a patient. He is also MFH's cousin, and he gave us some incredible insight into what he felt could have been happening in our situation. However, I was heartbroken to hear that one of his current patients who also started her life in this very same NICU, was eventually released with a nasogastric feeding tube. We're talking about a release that happened less than a year ago. Even now, I still can't help but hate myself for ever allowing the G tube surgery. As it is now crystal clear that it was a procedure Little Bird did not need. Knowing that I allowed them to talk me into it feels like I cut her open myself. For that alone, I will never forgive myself.
After a couple more days of several more calls to everyone from social workers to insurance coordinators to the specialists who performed the tracheostomy on her, MFH and I knew where we stood, and we knew that we weren't going to budge. The bullshit had to end. They were tying our child up in medical red tape which was impeding on her progress. Progress that they were suddenly considering to be a waste of time.
That following Monday morning, we received a phone call from the NICU social worker. She wanted to apologize for the waylay of the meeting four days before, and admitted that she had no idea what even she was walking into herself. She then asked MFH where I got the notion that Little Bird was about to be released. He explained everything to her. From. Day. One. And then, we heard the light bulb above her head turn on.
She told us that the director of the NICU is the only person authorized to transfer a patient out, to any facility. The doctor who concocted this half-assed attempt to send her to long term care didn't even have the power to do so. And this made sense as to why, when I initially got her on the phone days before the G tube surgery and demanded a transport to a NICU actually competent and willing to help us, she began back peddling as if her life depended on it. Her career absolutely did. Had I forced the issue that day, she would have had a lot of explaining to do. Because the NICU director was out of state for the entire month of November, busy with patient advocacy conferences. She had absolutely no idea what was going on. This was very much a case of "when the cat's away...". The social worker then asked if we'd be willing to take a phone conference with her and the director the next morning, so that the director could hear first-hand the kind of punches her staff was pulling behind her back.
The very next morning, we did exactly that. An hour an a half of resolving six weeks worth of bullshit. I'll spare you the boring details, but I will tell you this: immediately after that phone call, there are three less neonatologists on this weeks scheduled rotation. We also came to an agreement with the director, in terms of Little Bird's medical needs and what we feel is best for her as her parents. We made our stance very clear, and told her that there will never be another word about shoving our child off into medical oblivion.
I don't know why this had to happen to Little Bird. Now, I know a lot of people, and maybe even especially those who are parents of preemies, may read this and think "They're insane. They aren't considering their baby". But let me assure you, we are thinking about nothing but her. Little Bird came into this world physically unprepared, at twenty six weeks and four days gestation. Her untimely birth was unexpected, as we never made it to the hospital to deliver. Instead, she was born in the back of the ambulance that was called to assist us. The paramedics who saved her life were nothing less than godsends that day, and I will always consider them that. That being said, the conditions in which she arrived were the worst possible in terms of a micro preemie. Risk of infection. Hypothermia. Severe bruising from the birth canal. All of these were stacked against her. Given the circumstances, when I say that she shouldn't be here, this is what I'm taking about. About two percent of babies could survive something like that simply long enough to make it to the hospital. Yet, here she is, five months later. Granted, she does require a ventilator and a G tube, and we are no where near safe, yet. But, she is here. She struggled so hard just to achieve the status of which she has right now, which is still critical. I know she is going to require years and years worth of so many different interventions in order for her to accomplish abilities like crawling, walking, running, or even just holding her head up on her own. However, knowing first-hand what she's been thru. Seeing her fight for every single breath she takes. That is enough for us right now. It is enough for me to say, "You know what? Give the girl some credit. And maybe even a little break. Let her come home and be loved. We'll work on everything else in due time." I realize that a lot of people may take what I'm trying to explain the wrong way, but to me, she is perfect exactly as she is. If she was blind. If she was deaf. If she could never feed herself, much less drink from a bottle. If she requires diapers for the rest of her life. I couldn't possibly love her any less. This is who I was given, for whatever reason. I accept that. I've accepted that, from the minute she was born. If it's my destiny to not only be this person's mother, but to care for her every need for the rest of my life, then I will happily oblige. Anything beyond this point, to me and to my family, is simply icing on the cake. I don't care to know the numbers. I don't care to see the comparisons. From this point on, everyone who treats this baby needs to look at her as if she is the only baby to ever exist. Because she is very much one of a kind. Whenever she learns to sit up on her own, and unsupported, I will consider that to be ahead of her time, just as she has been to me from day one. She's already spent the past five months, and the first of her lifetime, doing everything she can to maintain. Why overload her and impede on that progress now? Why can't she ever be good enough to everyone else? She will always be a miracle to me, no matter what. No matter when. Nothing will ever change that.
Three days agp, Little Bird was transferred to a PICU a bit closer to home, and with the hope that from this point on, she will not be deemed a failure at anything. For how idiotic it is to have to put her thru another change in location, it was absolutely necessary and probably one of the smartest decisions we could have made on her behalf. For how badly I want her to come home, this does add more time to her stay. However, she is safe. And I'd rather wait it out, for however long it takes, than to continue carrying the doubt and mental weight that the NICU was causing. We're going to take our time, and make sure we dot our I's and cross our T's.
After having her entire medical history evaluated by this new team of specialists, a new direction has been charted for us. The PICU's opinions about the NICU echoed our own when they realized that since Little Bird returned to them at the end of October, they failed to provide the care she required. Care that was supposed to include them trying to ween her off of the ventilator. One of the benefits of her having the trach was that it would make these attempts a lot easier on Little Bird, because it wouldn't require any reintubations. But they never tried. She was flunked before she ever even had the chance to take the test. To hear someone, anyone, say that they have every hope in the world for Little Bird's full recovery? I can't even begin to describe what that means to me.
So, we're trying this, now. Immediately. For the past two days, her respiratory team has been playing with her vent settings, trying to get a feel for what she can handle and what she can't. But, there hasn't been much success to this regard, as Little Bird hasn't tolerated any of the changes very well. She is, however, able to withstand nine hours under CPAP settings. For her, a record time. They have begun to suspect bronchomalacia and tracheomalacia may be the reasons behind this. In short, they believe that part of her airway may have collapsed, or at least weakened to the point of not being able to sustain the repetition of respiration. Since they have yet to receive her complete medical file, and her last bronchoscopy was in mid September, she is going to have to endure another one.
The test has been scheduled for tomorrow morning. As they examine her airway in depth, they are also going to readjust the vent pressures, in order to get a very definitive view of what's going on inside of her lungs. They need to find out not only why her body is reacting the way that it is, but also how. By this time tomorrow, we will know exactly the best course of action and how we need to proceed from this point. If malacia is the issue, there really isn't a whole lot that can be done, other than give her time to gain and grow. It is possible that her airway will strengthen over the next few years.
If it isn't the problem, then we move forward with the process of weening, lowering and adjusting her vent settings to the most minimal possible before pulling the vent all together, and seeing what she does and how she handles it. If this isn't something she can do right now, it doesn't mean that she never will. It just means that now is not the time. So we will wait, and try it again in a few more months. In a few more months, as an outpatient. As I type this, they are readying her, and us, to enlist in their vent program. This will not only teach us absolutely everything there is to know about the machine and her on it, we will be damn near experts in it by the time we discharge. And, as I type this, her discharge from the PICU is being formally prepared.
We don't know how long all of this will take, exactly. But we did ask for a realistic timeline. Honestly is the best policy, and they were very up-front. She may be home in as little as two weeks, or she may have to stay until as late as mid February. We won't even begin to know what's in store in this regard until after tomorrow's scope reveals our true path. But this is what I was talking about in my last entry. We'll take our time, and do what needs to be done. We won't just do it the right way, we'll do it the best way. For Little Bird.
As for Friday's transfer, Little Bird is a champion. She rather enjoyed her outing and has completely adjusted to this new facility so amazing well. She's a baby, and babies love naked. And therefore, her nurses are allowing her to be just that. With the exception of her diaper and swaddling blankets, she is as happy as a clam. No mittens to restrain her hands. No clothing to restrict her movement. She's the most comfortable that we've ever seen her be. As far as that so called feeding aversion is concerned? What feeding aversion? She's been continuously taking no less than ten millimeters per feeding by mouth, and averages around twenty. It isn't so much that she is afraid of drinking a bottle, she wants to do this very much. She just hasn't realized yet that this is how she is supposed to eat. She'd been utilizing an NG tube for months before being fitted with the mic-key button. To her, dinner just magically appears in her belly. But she is learning that she has to work for it now, and is very interested in this new activity. Feeding her requires a lot of patience, but that's understandable. Wouldn't you take it slow, too, if you felt as if you were being water boarded?
Hopefully, this has been the last transfer we will have to make. With any luck, the next move will be home. Five long and frightful months of this so far. One hundred and fifty six days spent. More medical terms that I'd ever imagined my vocabulary would include. More procedures than I ever thought a human being could withstand. But Little Bird is nothing if not magnificently strong. That is something that will never cease to amaze me.
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