The Best Laid Plans.....

I didn't include this is the last update, because I wasn't quite sure that it was real. I'm still pinching myself. During Sunday's visit with Little Bird, one of the docs on her team came by to chat. She told me that they feel that Little Bird is medically ready to come home. She asked if we had a specific date in mind. A deadline for her release. A due date. My response? "Yesterday!". She kind of just chuckled, and looked at me. And that's when I got the hint. She was serious. On December 9th, Little Bird will be five months old. I told her that we would love to have her home with us by then. We immediately started to make arrangements.

Yesterday afternoon, we had a two hour meeting with a social worker in order to begin the process. I never realized how much planning is involved in something so seemingly simple. Like the need for our nurse and respiratory technician to meet us at the house upon our arrival. I can't imagine anything else requiring this much precise organization. The house itself needs to be coordinated specifically to meet Little Bird's needs. This, meaning she won't sleep upstairs in her cradle next to our bed. Instead, we overhauled the downstairs in order to comply with a few standards. Such as her and her equipment needing to be as close to the kitchen as possible, as well as have a constant source of overhead lighting in order to properly complete certain procedures that are part of her daily care. In other words, half of our living room just became a children's unit. But this is something we've anticipated, and there is a big difference between a sterile hospital environment as compared to the comforts of home.

Parents wear a lot of hats. Last night, I was a NICU nurse, and a respiratory technician. We got there early, and Little Bird was sound asleep. We hung out at her bedside for a while, looking over her chart and the stacks of instructions and protocols that we eventually took home with us to study and memorize. It didn't seem like she was about to wake up any time soon, and we were still two and a half hours away from her next care time. So we took a walk to the cafeteria for a quick cup of coffee and to kill some time. We got back to the unit a little while later to find Little Bird wide awake, and in need of a suction and a diaper. Her nurse was called out to a delivery, and I didn't feel like either was something she could have waited for. I also saw no need to call for backup. This was something MFH and I could do ourselves, and so, we did. Ten minutes after we finished, it was shift change. Her evening nurse arrived and was pleasantly surprised to see that we not only took the initiative, but accomplished the task sufficiently. Team Little Bird, for the win! We took so many photos, as well. Apparently Daddy is more comical than Mommy. I couldn't get her to crack a smile to save my life, but for MFH, she wouldn't stop...

Waiting For Little Bird To Wake

So Comfy

And So Peaceful

Dreaming Of Flying

I'm Awake! Pick Me Up, Please!

Blurry, But She's Smiling :)

Telling Me About Her Day

Her Kissy Face!

Thinking About Tomorrow

Discussing Our Plans

More Kisses, Please!

She's Very Excited!

Look At Those Eyes!

  
Little Bird has also worn a lot of hats. I mean this very literally. Before we left last night, her nurse gave me a paper bag. In it was every single hat she wore since the time of her birth. The pink one. The smallest of her collection, worn only when they opened her bed for procedures such as x-rays, ultrasounds, and PICC line placements. The rainbow colored pastel one. The first one to properly fit her head, once she grew into it. The one with the ruffled brim. As tiny as the others, but it was her first real dress-me-up accessory. The pale purple one. The one she was wearing the night her breathing tube obstructed and she crashed. I haven't seen them since before she transferred to Philadelphia, since she grew out of them. I never thought I would see them again. And I certainly never expected such an amazing gift from the nursing staff.

With the exception of CPR certification which is scheduled for tomorrow evening, we've completed the rest of the training. Today was our last 'free' day at home, and today, I was a secretary. So many phone calls and emails. Including her pediatrician, to give him an update on her progress and this projected release. Our electricity provider, because they needed to know the specs of the machinery in the event of any weather related urgency. The hospital, just to double check the plan. The in-home respiratory specialists, because we have a relative who does this for a living and we're trying to get him assigned to Little Bird. And an impromptu dental crisis which Number One began experiencing last night. But we're getting there, and knocking each task off of our itinerary one by one. During dinner tonight, we had a meeting of sorts with the big kids over dinner, just to make sure we're all on the same page in regards to the changes that are about to affect us all. Their questions were interesting, and not quite what I'd expected. Does the vent have an alarm in case of an emergency? What do they need to do if it alerts? How soon will the nurse get here? Our family, as we knew it, is no longer, and we are all very much aware. It's about to become very complicated, and we are about to become complete.  

MFH and I will spend the rest of the evening packing Little Bird's welcome home bags, and an overnighter for myself. We have an early afternoon meeting with her team tomorrow. One last get together before the big day. Tomorrow night, she and I will begin our slumber party. Rooming in at the NICU until I'm confident enough to say that I can handle her care on my own. The staff will be there as backup, just in case. And once I can give them the green light, we will be on our way.

I can not believe that this blessing is actually upon us. The fact that she has made it this far is a testament to her will to live. There were so many nights spent at her isolette, silently praying for the next morning. And each time the sun rose, a tiny sigh of relief. For how exciting these days are, they are also riddled with anxiety. We are not safe yet, this we know. Even after she's here. Especially after she's here. But it is a very welcomed and huge step of her recovery. To be able to come home means, at least to me, that she is truly stabile. Life for Little Bird is about to truly begin. We have so much to look forward to. 
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Sisters....

This afternoon, we took a spur-of-the-moment ride to the NICU. I know, right? How can something we've been doing for almost the past five months be spontaneous? It wasn't so much the destination or the timing, but the company. Number Four asked to see Little Bird. This may sound strange, and actually, it is. Because she is our fainter. I've watched this child drop while having her own blood drawn. The night after the baby was born, MFH brought the kids in to see their baby sister. I was in the midst of a transfusion when they arrived. The sight of bagged blood products was enough for her knees to buckle, and she refused to sit with me on my bed. During the past twenty weeks, we've offered her these opportunities time and again, only for her to decline them all. For her to choose to be around all of the machines and equipment, knowing full well the chances of her coming face to face with Little Bird's surgical site? This was a pretty big phobia for her to face. Since Number Five was so well behaved on Thanksgiving, and all-consumed with the excitement of just the possibility of kissing her baby today, we couldn't refuse her request, either. So, we threw a couple of 'just in case' bags together, and away we went. 

We arrived and scrubbed in, and met Nurse Megan at the baby's bedside. She gave us an update, explaining that today, Little Bird weighs eight pounds, thirteen ounces, a total gain of seven pounds since her birth. Her IV's are gone, and she has worked her way back up to an ounce and a half per feed. She also took five millimeters by bottle right before we got there. Her vent pressures have been lowered, along with her oxygen, and she's already back to CPAP trials. Little Bird was asleep until she heard us conversing about today's events. She opened her eyes to the sight of her sisters smiling down upon her. And just like that, she went bananas. Like a kid on Christmas morning, she began to flail her arms and kick her legs, and smile at her female counterparts. In an instant, she knew. Her partners in crime. Her best friends, forever...

The three of them spent several minutes catching up with one another while Megan gave me the low down on the care and training I was about to do. Cleaning the wound area and rotating the mickey, examining her stoma and trach for any breakdown, suctioning her airway, my first administered PEG feeding, and eventually, taking her temperature and a diaper change. Little Bird wanted no part of any of it, and began to fuss and cry out of frustration because no one had picked her up yet. She wanted out of that crib, stat!

Mommy's New Desktop Background

Hey! You Look Just Like Me!

Look! No Tapes Or Tubes!

We began the rundown of procedures, knocking them off of the list one by one, but clearly, not fast enough for Ms. Diva. She wanted to play, and she wanted to play now. Number Four did an excellent job of distracting her long enough for us to get everything accomplished. Number Five did a fabulous job of snapping photos of everyone, and everything, in the unit. I wish I could show them to you. However, I'm pretty sure it would be a huge HIPPA violation to post random pics of anonymous babies that don't belong to us. What can I say? The girl found her calling. When she grows up, she's going to become a paparazzo.

One More Minute, Sweet Love, I Promise

Almost Done

Megan walked me thru prepping the feed, programming the pump, and attaching the tube. This sounds and certainly looks a hell of a lot more complicated than it is. But, after dealing with all things mechanical ventilation, it really is much 'ado about nothing. Even though it's only been three days since the surgery, Little Bird is recovering astoundingly well. She does have a bit of tenderness, but other than that, unless you knew her medical background, you wouldn't know this to look at her. With that being said, her hands are being kept in mittens at all times, regardless. They removed her NG tube this afternoon, and when they did, she helped. Before they could stop her, she grabbed a hold of the tape and yanked it off of her face, leaving a bit of a mark on her left cheek. But I can't blame her for wanting it gone. It's been there since day one.

Once we got her situated, Megan handed her off to me. Little Bird had a lot to talk about today. She knows how to control her trach enough to squeak. Just like any four month old can coo, this is her very own way of communicating with us. And it is precious. I don't know why, but I always think she's forgotten who I am between each visit. Even day to day, I worry that because she sees so many different people every hour, she'll view me as another nurse or technician. On an average day, she meets at least four nurses, two attending neonatologists, a therapist, two respiratory technicians, and a specialist. This evening, I've finally come to realize that she knows I'm not going to hurt her. She knows. I'm Momma. And I'm there to give her sweet luvins...

Hearing Some Great Gossip

Have You Ever Saw Eyes So Big?

By this time, Number Five's attention span peaked and began to dip. MFH decided to take her for a walk and bribe her with some sugary goodness at the closest vending machines. Considering that she'd lasted almost an hour without a meltdown, this was a well deserved treat for her. Number Four pulled up another rocker and sat down beside us, quietly contemplating getting any closer than that. While she did assist us with Little Bird's care, she kept her head turned the entire time, avoiding as much of the visual reality of everything as she could. Megan had to tend to her other baby, and so she turned down the overhead lights and gave us time to snuggle in private. I asked Number Four if she was nervous, and she admitted as much. But before I could explain that there was really nothing to be afraid of, Little Bird smiled at her. That simple assurance was all she needed to see. And then, she asked me if she could hold her sister...

Love's Truest Form

Pleasantly Surprised

"Mom, I don't ever want to put her down"

Evidently, Little Bird adored this time with her big sister. She fell asleep in Number Four's arms, and began to snore (by the way, she does not get that from me, I'm just sayin'...). For months, I've watched my oldest daughter struggle with the anxiety she carried about this baby. Not even two weeks ago, she shocked MFH and I both when she declared that she did not want Little Bird to come home. She explained that she wasn't scared, she was petrified. And I can't blame her for that. We're all a bit apprehensive. Even tonight. The thought of something going wrong is so very real to her. She essentially witnessed Little Bird's very premature arrival on our living room sofa only months ago. In the blink of an eye, her entire world drastically changed that Saturday morning. For as much as I wish I could, I can't change that. And I can't make her forget she ever saw what she saw. But I can show her that allowing that kind of fear to cripple her will shut her down and away from some of the most magical moments she may ever experience. By reaching out and holding Little Bird tonight, she allowed her heart to open and accept one of the truest forms of love that this life bestows upon those of us who choose to receive it. It is theirs for the taking. 
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What Lies Beneath, What Lies Ahead....

On the evening of July 9th, I was escorted into the NICU to meet Little Bird for the first time. I knew it would be bad. I knew it would be. I knew she'd be small. I knew she wasn't ready yet. I knew she wasn't supposed to be here. I had no idea. 

When you see the pictures, and even the good ones. The ones I am able to post? It is overwhelming. It is. But when you are face to face with your own child who is in such condition, it is paralyzing. It's safe to say that I can speak for those of us who were in that ambulance and witnessed her entrance into this world when I tell you that the only way to describe what we saw is that it was the visual equivalent of the word 'broken'. All the king's horses, and all the king's men. 

I don't know why I expected her to cry, but I did. And when she didn't? I thought she'd left me. But then all of a sudden, there she was. Having seen what I had seen, and having just heard what I had heard, it was nothing short of a miracle. It was as if someone reached in from the great beyond, and you could almost see that hand. I certainly felt it.

And so later that night, I sat with her, next to her. And just watched. The machine, vibrating oxygen into her lungs. The fluids, passing thru her IV lines drop by drop. The blue lights above her, radiating down upon her skin. I can't tell you what it sounded like. I don't remember. Hysterical deafness, perhaps. But it felt primitive. In spite of everything. In spite of all of the equipment. In spite of all of the technology that surrounded her, it was primordial. 

In that moment, and for the nine days that followed, she was fueled by nothing more than instinct. It was obvious and recognizable by the naked eye. If I had to verbally depict my belief of what a human soul might look like, I'd say that was it. You could almost see hers, driving her from one day into the next. Her appearance began to change almost hourly. Her core became less transparent. Her pigment began to show. What's known as filling out was occurring, but it was more as if she was filling over. The physical protection of her spiritual entity. Her body, growing around her substance. From one visit into another, we continuously relived her birth, again and again. We weren't just watching her develop, we were witness to her form. We beheld something only God himself is ever supposed to see. 

She wasn't able to do much in those first days. She was literally powerless to fight against the changes. Like a runner, bent over, hands upon knees, gasping for breath. Except her race was just beginning. Time was yet to tell us how far she'd be able to go. On the ninth day, we saw her sprint. You could sense the transformation of energy in her as compared to day one. Or day two. Or even day three. A little bit stronger. A little bit more. Just simply sitting next to her, and holding her hand, you could feel it. The humming, like an engine. It was her body, actively taking over. 

For months, I debated posting these first consecrated reflections. Even thru all of the words, it can't quite be adequately described. A stack of dictionaries in every conceivable language could not do it justice. That force of nature, that force within her. And I came close to not even uploading them. But I ultimately decided to do it. It's not everyday that a person gets to give testimony to their own actual genesis. Her immortality, captured on digital images. It's not every day that the world gets to experience such a miracle. Again, I think about what she would choose to do. I think she would be proud to say "This was me. I'm not supposed to be here today. But. I. Am. I am the strongest person you will probably ever know. This is what I overcame. I am unstoppable." Because it's true. And she is.

There are still more photos of Little Bird that we will never post. Some things should and will remain sacred, for our eyes only. Days in which she was catching her second wind, and likely didn't want her picture taken. Nights in which a single second distracted with adjusting the lens could have very well been her last. But given the situation, and never knowing how much time we'd be allotted with her, we had to. One of the best pieces of advice I could offer to any parent is to make a record of every memory, good or bad. Keep a camera handy at all times. Take a picture every single day. Even the worst days are worth capturing. And you will never, ever regret a moment of it. 






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That's My Girl.....

Last Sunday afternoon, MFH and I met with one of Little Bird's doctors. The same neonatologist who, on October 28th, told us that he foresaw no need for a PEG tube. Yet, three weeks later, he sat in front of us, telling us that Little Bird is now classified as having an eating aversion. All of a sudden, his opinion is that she will never be able to sustain her caloric needs by bottle. His reasoning for the surgery was not only for this so-called issue, but that it will allow her to bypass learning how to bottle feed all together, and go straight to a sippy cup and spoon feedings when the time comes. As he was describing my daughter's lack of muscle control within her jaw, mouth, and esophagus, I was holding her. I was also watching her stick her tongue out at MFH, and I could feel her clamping down on my finger thru her binky. 

I wanted to argue these very valid points with him. But I let Little Bird have the pleasure of proving him wrong in that moment. He then went on to explain that long term, intensive rehabilitation was the only way she will ever learn how to eat. I couldn't bite my tongue anymore. I cut him off at the chase. I asked him something directly and point blank. If we agreed to the surgery, how much longer until she could be released to come home? No more ping ponging the preemie. No more treating her like a number on a chart. No more doubting her abilities. No more bureaucratic bullshit. Enough is enough. Home. 

For about ten seconds, he said nothing, and actually gave my question some thought. And then? He replied that so long as no complications arose, seven to ten days. From the date of the procedure. And suddenly, this became the game plan. She would have the feeding tube inserted. During her recovery time, MFH and I would complete the rest of the vent training plus that of the PEG care. And then, she would be discharged to finally come home. For how easy it all sounds, it is still morally vacant. But it's hard enough to sleep at night when your child is hospitalized miles away, if not damn near impossible to function at all when you know that she is surrounded by strangers who are treating her like a fucking statistic. I had to put myself in her booties. What would she choose, if she could?

We didn't give a definite answer that night, instead opting for enough time to make sure that this was absolutely the best we could do for her, given the circumstances. After struggling with it overnight, we called her team on Monday morning to give them our consent. Only to hear that the rest of them were not on board. Once again, they slung the word 'policy' at us. But this time, I'd had about as much as I could take. After ending the call with them, I immediately placed another with the NICU of a different hospital.

Right after a discussion with their attending physician, I called Little Bird's unit once again and told them to prep her for transfer. Apparently, that was enough for them to realize that we'd had enough of their fuckery. No sooner did I say it did they begin to back peddle. In an instant, all of the cards were back on the table. They very quickly agreed that the strategy we brainstormed with Doc K was ultimately the way to go. Two hours later, their surgical team contacted us to inform us that Friday would be the day.

Except, it wasn't. I don't have a whole lot of experience with surgeries. But I do know enough to know that this was not an emergency procedure. Little Bird was doing just fine. As of Wednesday, she weighed eight pounds, eight ounces. A gain of three ounces in just a few short days. She was eating two and three quarters of an ounce of formula per NG feeding, as well as ten millimeters by bottle. Her CPAP trials had been increased to nine hours at a time. She was doing so amazingly well.

Which is why I couldn't understand why they decided to reschedule the procedure for Thursday morning at eight o' clock. Her first Thanksgiving. Spent in the OR. Her first Thanksgiving. With her feeds having been paused Wednesday at midnight,  not resuming until a few hours ago. Our plans, weeks in the making, to bring all of her siblings to visit her at once, and spend the day watching them hold her for what would have been the first time any of them ever got to, were thwarted. I would like to think this was nothing more than an oversight. But, knowing that most surgeons prefer not to do elective procedures on major holidays? Knowing that for the past week, I've emphasized to the staff how much her brothers and sisters were anticipating this Thanksgiving, so much more than any other?

Somehow, the rest of us managed to make it thru our holiday meal without a hitch. For how much my kids can drive me to consider a career in alcoholism, days like Thursday are the perfect example of why I say, without any doubt, that I have the most wonderful offspring on the planet. While MFH and I scurried around the kitchen like an episode of Iron Chef, the five of them (Number Five included), pulled out and put on their Sunday best without even needing to be asked. In all honesty, they could have stayed in sweatpants or pajamas. After all, it was just the seven of us, celebrating together before heading down to the hospital to see Little Bird. But this was a big occasion for them. And they dressed as if they were about to spend the day with the President of the United States. When I laughed and pointed out exactly that, they replied that Barack Obama had nothing on their sister. 

Immediately after dinner, we rounded each other up and hustled to the unit. Because of the surgery, we couldn't all be next to her bedside as we'd arranged weeks earlier. Because of the surgery, we couldn't even touch her. So during the drive there, we decided that the girls and I would go in first, and visit for as long as Number Five's attention span would allow before swapping with MFH and the boys. We buzzed in, and no sooner did we pass the main door did Number Four and I pull Number Five aside and explain that she needed to use her indoor voice so that she wouldn't wake the sleeping babies. She doesn't understand what an operation is, so we told her that Little Bird was very tired and that her belly hurt, and we couldn't give her kisses until she was feeling better. She was able to sympathize with that, and was on her absolute best behavior. We scrubbed in and made our way to Little Bird's corner.

Since she was only a few hours out of recovery, she was in a warming bed instead of her crib. Number Five quietly gasped when she saw her. It was the first time she had ever stood face to face with her baby sister. Although, she's seen every photograph and watched every video a hundred times, it wasn't real until that moment. In those first few seconds, the connection was made in her mind. Her baby (as she calls her) was suddenly very real. And she was not afraid, like I thought she might be. Even though all of the IV's are back. Even though she has two incisions on her belly, which was exposed as she only wore a diaper. Even though she was covered in leads. Even though the ventilator was once again breathing for her completely, and we could hear the increased oxygen hissing thru the tubes. Number Five smiled and said, "Awe! That's my baby! She grow'd so big! Good girl!".

Number Four's reaction was a bit opposite. I could tell by the look on her face that she was shocked. Uneasy at the sight of just needles, she was a bit scared. But she held up like a trooper, and was happy to see how much bigger Little Bird has grown. She asked me what each wire and piece of equipment was, and I explained it all to her. This seemed to help put her at ease. I also explained that she wasn't in any pain, and was able to sleep thru the worst of it. She wanted to touch her hair, but knew that it was best not to disturb her. A few minutes later, Number Five said she was ready to go, and we went out to the waiting area where we switched positions with MFH and the boys.

They went inside, and were also surprised at the sight of the now eight and a half pound baby in front of them. The last time they'd seen her, she easily fit in the palm of either of their hands. Number One, I think, had the most difficult time biting his tongue. Quite frankly, he is just as upset as I am about Little Bird having to undergo the procedure. But he conducted himself as I expected he would, like an adult who knew that his baby sister's bedside was not the time or place for an emotional confrontation. MFH took a few pictures for our album (which we've decided against publicly posting, something I'll explain in the next entry). While he was answering the boys questions and talking to the nurse, Little Bird heard their voices and smiled. She tried very hard to open her eyes and take a peek at her visitors, but she'd just had a dose of pain medication before we'd arrived, and couldn't quite keep them open. Though, we were all happy just to know that she was okay, and that she knew she was not alone.

As of tonight, Little Bird is kicking ass and taking names. She isn't allowing anyone to put or keep her down. She stabilized her temperature throughout last night, and is now dressed and back in a crib. Her physical therapist worked with her this afternoon. No bottle, just leg exercises and sitting upright. But she sailed right thru those, and gave both the PT and her nurse a cocky little smile as she did (that's my girl!). She isn't experiencing a whole lot of pain, only requiring one dose of meds all day. And she successfully took two small feeds thru the PEG so far. Her vent pressure settings remain the same as they were last night, with a bump in oxygen. Tomorrow, they'll attempt to lower them and see how she handles it. Her IV's will also be removed, as well as the NG tube. For the first time since she was born, she'll have nothing obstructing that beautiful little face.

All that stands in the way from her being released is some further training on our part. Primarily, how to care for this new device. She is two weeks away from turning five months old. Today is day one hundred and thirty nine. Hopefully, the next two weeks will be the home stretch. She is ready. She's saying as much herself thru her actions. She wants to feel the sunshine on her face and the wind in her hair. She wants to be with her family. She wants to come home.

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Not Thankful. Grateful.....

         From our family to yours....Happy Thanksgiving!
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Black Bird....

A few days before Little Bird arrived, MFH was outback tending to some yard work when he came across a baby crow on the ground. It had apparently fallen from its nest near the peak of the roof, so putting it back wasn't an option. He came inside and told me about his discovery, but oddly enough, didn't want to bring this nestling inside in an attempt to save it. Very unlike MFH. He's known to save bumble bees from the pool. 

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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Dreams and Nightmares....

I was with Number Five, walking thru this wooded area near our house. It was Fall, with orange and yellow leaves everywhere. She ran ahead of me and through these leaves that were falling from the trees like rain. Two older gentlemen ahead of us, standing on the path that we were on. They were dressed in suits and hats and smiled at her as they pointed toward a hill just behind them. They were beckoning her to go up this hill. I yelled out to her to go to her right. Suddenly, I was in front of her and she was following me. There was a pit in the ground, a drop down from where we were walking. Carved out, perfect edges. I heard a baby crying and began to make my way into this pit. Wet leaves were everywhere. Number Five began to climb down behind me even though I told her to stay where she was. I dug thru the leaves with my hands. It was Little Bird, in this pit. But she didn't have a face. I turned and looked up, wondering how I was going to climb out of the pit while carrying both girls, and saw my mother standing at the edge of it, looking down at me as I held this faceless, crying baby. I realized that it wasn't a pit. It was a grave. 

And then I woke up. Two hours ago. I couldn't fall back to sleep after that. I don't know what this dream is supposed to signal, but I do know enough to pay attention to it. A few months ago, I was clearing space on my hard drive when I came across a log I began keeping almost four years ago. Dreams. As much as I could remember and as soon as I would awake, I would write them all down. I started paging thru the passages and saw a pattern. Every few weeks, over the course of several months, I would dream of a newborn baby girl with black hair. And, my mother, who's been gone since 2003. The most significant of these dreams was dated April 2008. I was walking behind my old elementary school, pushing a baby carriage. In this carriage was that little, black-haired baby girl. She began to cry, so I stopped and picked her up. I unbuttoned her sleeper to find a red rash in the shape of a footprint on her belly. I ran down the street to my mother's house, with this baby in my arms. My mother met us on her front porch. She examined the baby and said, "Don't worry. It's Scarlet Fever, but she's going to be okay."

After finding that entry, I literally could not breathe. Like a panic attack. And after reviewing the rest of the journal, apparently, the pattern was that my mother was trying to warn me. About Little Bird. About her coming so early. I wouldn't call this dream thing a psychic ability, or even a sixth sense. I don't know what it is. But these certainly aren't the first instances of it. I've predicted the pregnancies of three separate friends by this, as well as issues between MFH and I long before they even came to pass. I don't write down every dream, just the one's that tend to stick with me. The one's I can't shake the emotion of. Last night was one of them. 

I'm putting it on here not only to vent it, in hopes that I might be able to go back to sleep afterward, but to also have this entry to look back on later. Just in case....


 
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