Conflict of Interest.....

So much happens from one day to the next lately, that it's difficult to recap on here unless I'm able to write every day. And so much has been happening at home that makes blogging next to impossible (attempting to blog from the PICU? forget it!) So I'll try my best to fill you all in on where we are as of today. It's not succinct, and probably the most bi-polar post I've ever written. And such is our lives the last two weeks. So please, bear with me.

Yesterday afternoon, we had a scheduled trach change with Little Bird. We do this every Monday, and unless (knock on wood) something happens requiring us to perform this in an emergency and on a different day, Monday's it is, from here on in. MFH and I arrived at the PICU in plenty of time for it, as we wanted to hang out with her for a bit before getting into anything. It's better this way, because it gives her time to prepare with some cuddles, and us to tell her what's coming next. I hate springing anything on her like a doctor or nurse. 

We also got a call from Cheech, our respiratory therapist and home health supply coordinator once we're released. We'd met with him on Friday afternoon and completed the initial assessment of our house. The crib must be within so many feet of a major exit, and as close to the kitchen as possible. The oxygen can't be any closer than ten feet of any source of heat. Four dedicated outlets and a two hundred amp service line to handle the 1.21 gigawatts that her flux capacitor is going to throw out. It is a logistical migraine. Today, he wanted to give us a heads-up that the letters of necessity and scripts were received by his company, and our equipment is being ordered. And now, we await the barrage of FedEx trucks, and one more assessment from him before we can clear that to-do off our list. Our list, being a binder and six folders worth of so much that needs to be accomplished before they can give us the green light. One almost down, a thousand more to go.

As soon as we got on the floor, one of the nurses grabbed us and warned us that Little Bird had been placed under isolation a few hours earlier. Over the weekend, she began showing signs of illness. They took cultures, but we don't yet know what the exact problem is as of late. So, we passed off her car seat, which they asked us to bring it in order to perform a pneumogram on her while she's in it, ensuring that she can ride upright in a vehicle without incident. And we scrubbed in, and gowned up before greeting her. A sight for sore eyes, she was wide awake and doing her damndest to catch the mobile above her bed. The sutures and clamp from the repair surgery were removed on Saturday, and two weeks ahead of schedule. It was becoming infected even after the surgeon irrigated the wound. So they started her on a course of antibiotics and took them out, and her comfort level is now clearly visible. 

We also nagged the team to run some tests to prove what we had been suspecting for a long time, that she isn't able to digest lactic sugar. These results proved positive a week ago, and even though she was still crying in pain with every feed, her nutritionist was refusing to budge on switching her formula. She was on a preemie concoction, with it being mixed to double her caloric intake. And this was necessary because she burns so much energy healing and growing and breathing. But one of her nurses sided with us and cracked the whip, and as of Friday night, she was swapped to something else that is also showing definite improvement. Imagine experiencing a gall stone attack every single time you eat, which for her happens to be every four hours throughout the day and continuously during the night. But, no more belly aches, and no more tears. Two tiny thumbs up!

After we said our hello's, we jumped right into her care. Now, if you're eating, you may want to wait to read any further. This is about to get pretty graphic...

Little Bird requires suctioning of her airway as needed, or approximately six times an hour. The drawback to her being on antibiotics to clear up the wound infection is that it can also mask other illnesses. She wasn't presenting with a fever, but her suctioning needs have essentially doubled, and the secretions are discolored. This is what prompted the isolation and tests. I made two passes with her catheter, and typically that's all it takes to stop the rattling in her chest. It helped, but not enough. The catch twenty two with suctioning is that the more you do it, the juicier (sorry, but I warned you that it was gross, and this is the word we use to describe it) she becomes. It took another couple of tries to completely clear her trach. 

MFH set up her feeding pump and Farrell bag, and prepped a bottle in hopes that she would want to give that a try, too. I swaddled her, and we got comfy in the rocking chair while he gave her her four o' clock meds thru the mic-key. However, the sight of us in full gear was too much for her, and she became totally enthralled and distracted by the masks. 

"Are we playing dress-up today?"

"I want to play, too!"

So, we hung out and snuggled while exchanging info with her shift nurse. We gave her a run-down of where we currently stand in terms of our homecoming checklist, as well as a list of what we were hoping to knock back out of the way while we were there last night. We were awaiting a visit from our in-home nursing coordinator, so she could officially meet Little Bird, assess her needs, and get a first-hand background of our family before they walk into the circus that is our life. This was supposed to take maybe an hour, tops. And we decided to hold off on any further care until afterward. 

Our nursing coordinator arrived, and we immediately began filling her in on everything she needs to know before she can schedule our meet and greets with the nurses who will be assigned to help us. Now, this is where it gets interesting. Even though we do have the majority of Little Bird's care techniques under our belts, believe me. MFH and I walk out of that hospital every day, scratching our heads and seriously doubting ourselves. What if we are totally inept? Because there are plenty of times when it feels like we are. Throughout this vent program, we are being silently graded by the entire staff. But they don't tell us how we're scoring. It's only during the weekly staff meetings where we learn exactly how her team is viewing us in terms of all of this sinking in, or not. So far, so good. Though, it certainly feels like we are completely clueless most of the time. But, last night was a very positive confirmation to us both. We know our daughter. 

Little Bird's pulsoximeter began alerting that her oxygen level was below the norm. Her probe is taped to her foot, and it's pretty common for her to kick and it to give a false read. But even after adjusting it and the wire that attaches it to the monitor, it was still hanging around eighty. For Little Bird, the closest to a hundred, the better. Though, we don't want it anywhere under ninety. Her shift nurse came in and applied a warm compress, hoping that increased blood flow to her foot would mean a better connection. After it didn't, she went ahead and bumped up her oxygen and vent pressure settings. Still, the machine kept beeping, and the coordinator continued to ask questions about everything else. MFH and I sensed something wasn't quite right. Even though Little Bird wasn't showing obvious signs of respiratory distress, we noticed that she was becoming increasingly upset. She also began double timing her breathing, and her nostrils were beginning to flare. For her, this is sign number one. It wasn't the equipment. 

"Momma, I tink I gots dem boogers!"

I picked her up, hoping that maybe she was just intimidated by the new face in the room. But two seconds into trying to rock her to calm her down was all it took for MFH and I to look at each other and make the call. Let's go ahead and change the trach, right now. Something was wrong. We alerted her nurse that we were going to go ahead with the procedure and not wait any longer. As the machine began to alarm that her sats were dipping below seventy, and the coordinator continued to ask a thousand questions about the placement of the crib at home and the ages of the other kids, we blocked everything out. It wasn't an emergency, but we managed to accomplish the entire change in under two minutes. And that was all it took for Little Bird's oxygen level to increase to ninety five. No obstructions, but a hell of a lot of mucous came out along with the old piece. Enough to make breathing difficult. This, we knew. Because when Little Bird isn't getting enough air, she tells us by looking up at the fish on her ceiling, and concentrating as hard as she can. We've seen it happen enough times to know better, and to know that this is her text-book S.O.S. 

I am so proud of the two of us. We didn't skip a beat. And even her nurse, and the doctor who came in afterward to assess Little Bird seemed to concur. Last night was the first time that we'd taken charge of the situation, as knowledgeably equal to the professionals who do it every day. It was the first time where I truly felt one hundred and fifty percent competent and capable of her care. It was the first time in which we called the shots, and directed everyone else as to what needed to be done. Little Bird also agrees. She trusts us, and she let us know by completely relaxing her body during the procedure, extending her neck toward us in a move that made everything happen seamlessly. Right after the change, we wrapped her up, and positioned her onto her side, where she comfortably fell asleep.

"Can I has a nap time now?"

"I'll be right back, Mom!"

Suffice it to say, we didn't get any further in regards to our list last night. What was supposed to be an hour-long meeting continued throughout the duration of our visit. MFH didn't even get to hold Little Bird. With so much going on around us and all at once, Little Bird's health was our priority. I can tell you that hiring five strangers to come into our home around the clock is the easy part. Trusting them is damn near impossible. Maybe we're just being picky, but something isn't clicking with us and this agency. Last night's events weren't a critical situation, but it was enough for us to see, and to be able to say that we don't feel that this company has our daughter's best interests at heart. Changing her trach is not something that's taken lightly, in the least. Having someone standing beside us, and chatting the entire time? Well, put it this way. If you were Little Bird, would you appreciate that? Our focus needed to be on the baby, and it was. But, in that moment, I really didn't care to hear how many kids you've performed CPR on while driving down an expressway in the middle of the night. Or what your son is going to college for. Or your personal preference of ventilators. Or how many children you had hoped to have yourself. She was very nice, and I'm sure she's a wonderful person. But we already know, this isn't going to work.

So, we've put the ball into motion. Our Plan B. We're contacting our social worker and vent program coordinator and requesting an interview with another agency in our area. Both agencies have been on standby for us since the middle of December, and I'm thanking my lucky stars for options right now. I just don't want any conflicts once Little Bird comes home. As I've mentioned, we are on schedule for the projected date of discharge. But, should anything arise (like this), and we need the extra time, it's there. Maybe it will take us longer, but I'd rather everything be as perfect as it can be later. I'm willing to deal with any type of personality, just as long as it doesn't interfere with my daughter's health.

And, as I'm typing this, we just received word from the PICU that Little Bird's initial cultures came back positive for a tracheal infection. Bacterial, not viral. She spiked a fever an hour after we left last night, and has not been a happy camper since. They ran an x-ray of her lungs, and so far, they're clear. But she's back on vent support with increased oxygen, and an IV line has been placed. They also took a million other samples to test, but we won't know any more until at least this time tomorrow. I'm praying like crazy that this problem doesn't snowball, and that it remains under control. Tomorrow, she and I have a play date. Or, maybe a snuggle date. Depending on what she's feeling up for. No check list. No preparations. No more strangers coming in to meet her. Not until she's feeling better. I said so. 

 
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Panic! At The PICU.....

Holy mother of an update, Batman! I know it's been a while since the last one, but things have become insanely hectic around here during the last few weeks. Please ignore any typos, redundancy, and errors (I'll come back later and fix them). For now, I just wanted to recap, and give you all a sample of what we've been dealing with lately. Proceed with caution. 

Nearly two weeks ago, we had a staff meeting with Little Bird's team to discuss the prospect of entering the hospital's vent-to-home program. Last Wednesday afternoon, Cathy (our inpatient social worker, because now we have two) called to notify us that we've been officially accepted. We'd been given the green light by the hospital's administration to be discharged, which was no easy feat itself. In order for them to even consider allowing a patient to take part in this, there are some seriously important and mandatory standards that must be met. Do we have a two hundred amp circuit breaker in the house? Can we run two separate, dedicated lines for the ventilator? Will there be at least two full-time care givers available at all times? What do our finances look like? Are the other kids prepared for this new lifestyle? The fate of our family laid in the hands of thirty seven strangers. Like you can't even imagine. They needed to know absolutely everything about our lives from the moments of our births, including if we had any unpaid parking tickets and what kind of font do I use to post to this blog. You name it, they asked it, and we answered it. And that was the easy part. 

We celebrated the news by rushing to Little Bird's bedside within the hour, and telling her face-to face. We were sooo pumped. We walked into that hospital slingin' guns and ready to rumble. But our excitement was short lived. Since the evisceration, something inside of her has changed. In hindsight, I'm kind of surprised that it took as long for this inevitability to happen. Since the surgery to repair the fundo? She's become terrified of people. She startles very easily, and it takes at least twenty minutes of standing next to her bedside while talking to her and making eye contact with lots of genuine smiles from us before she becomes trusting enough to allow us to hold her. Us. Her own parents. When her nurses or respiratory technicians enter her room, if she sees them before she hears them, it takes just as long to calm her down. So many tears, and so much fear. And who could blame her? After a good while, she did allow for us to pick her up and hold her, although she was extremely cautious and guarding. 

"Please don't hurt me!"

"No boo-boo's....right?"

"Those needles scare me."

"They're always pinching me."

"Don't Let Them Poke Me, Daddy!"

If you have kids, or have ever had the displeasure of witnessing one receive routine vaccinations when they are already old enough to be aware of what's about to come, it's kind of like that. Only multiplied by twenty. But she is starting to come around. Especially after the last week. The vent program has a strict and very particular policy concerning the great amount of time that both parents need to be at the hospital, at the same time, throughout participation. For a minimum of eight hours a day, every single day, for approximately eight weeks. Two months for MFH and I to learn everything that every single medical professional on her team has had the privilege of years to acquire the knowledge of. Pulmonologists, ENT's, respiratory technicians, dieticians, speech, physical, and occupational therapsits. Gastroenterologists. Cardiologists. Nurses. We are essentially preparing to bring the PICU into our home, indefinitely.

Because we have five other kids here at home, this is an impossibility for our family. I would do anything for Little Bird. Anything, but completely abandon her siblings. Maybe that sounds harsh, but they did not ask for this. None of us did. And if it were any of them, I certainly wouldn't drop my responsibilities toward Little Bird, either. This has been our greatest guilt from the beginning. Though they may be older, they still need us just the same. Knowing this, we begged for mercy, and took a shot at asking the program coordinator to bend the rules for us. Just a tad. For our family and our given situation, the only way we can feasibly stay in the program (because to miss a day means getting kicked out, and getting kicked out means long term care), is for MFH and I to take turns. Shifts. He spends two to three days at the hospital, while I'm at home holding down the fort. And then we swap. Our team took pity on us, and granted us permission to accomplish everything this way. Such is life as we've known it for the past six days. It has also been a culture shock and wake up call beyond words. 

This scheduled routine is like rooming in, on crack. Because the only times that the staff is allowed to help us interact with us is during training procedures, in the event of an emergency, or we specifically request them to enter Little Bird's room (i.e., we need to break for a meal, shower, etc.). Caring for a baby is one thing. I've successfully and simultaneously handled a potty trainer, with two more in diapers and on the spectrum, while out-to-there-pregnant with the fourth. But this? This, is extraordinary. This is something MFH and I have learned quite frankly will be no walk in the park, by any standards. This is something that has already forced us to admit our very real doubts to each other. 

MFH opted to take the first round, bunking in with the baby from Friday until Sunday when we swapped. After he picked me up last night, we were on our way home (yes, both of us, and as directed by the staff. I'll get to that in a second) when he asked me if I was thinking what he was thinking. And I was. What. Did. We. Get. Ourselves. Into? Feeling it was just as bad as saying it out loud. Unless you have a child who's life is completely dependent upon a few hundred thousand dollars worth of technology, you can not even fathom what I'm talking about. But I will do my best to explain it. 

Now That's What I Like To See!

"Are You Taking My Picture?"

Grabbing For The Camera

Watching The Big Game With Dad

It has only been a week, and we are already exhausted. Physically, mentally, and emotionally drained. We were sent home last night by direction of Little Bird's team who've witnessed our first crash and burn. First, vent babies are the cure for insomnia. Because there is no such things as sleep, for even five minutes, when you are constantly aware that an outage can end your daughter's life. The average adult can go approximately five minutes (I'm not quite certain, though), without breathing or oxygen before permanent or deadly damage sets in. In Little Bird's case? She's got about two minutes, tops. We know this to be a certainty after Monday evening's trach change. This is a procedure we do with her every week, and will continue to do so after she comes home. However, this was the first emergency change we've ever participated in. Before we could properly set up our supplies, her piece dislodged from her stoma. We were very, very lucky to have one of the smartest nurses we've ever met observing us. She very calmly walked us thru it all before we were even aware of the severity of the situation. Don't panic. A hundred percent o2 from the dial on your left. Crank it all the way up, don't be shy. Grab the ambu-bag, there's no time for the machine to calibrate. Compress. Count. Compress. She's back. Give her a minute to recoup. You've got it under control. We watched Little Bird go from wiggling to woozy in thirty seconds. We also saw that event, considered minor by most professionals, wipe her out for the next few hours. Immediately after the new trach was in place and her sats were normal, she curled up in a protective, fetal position and fell asleep. 

All of this took it's toll on us, as well. By the time we reached the house last night, we were both in tears, wondering if we were making the wrong decision. But we were also smart enough to realize that we were incredibly tired, and you never make any decision about your child's medical needs when you are. So we alotted ourselves the night to rest and regain our composure before doing anything out of haste. After a solid twelve hours of sleep, we awoke this morning still afraid, but no longer driven to the brink. 

This afternoon beheld another team meeting, which we'll continue having once a week until she's released. We weren't even about to lie to them. We told the staff exactly what we were thinking and feeling, and to our surprise, we discovered that this is completely normal. And after receiving commendable remarks concerning our progress (which shocked the shit out of me, personally, because I feel like I don't have a clue as to what I'm doing half the time), we were given doctor's orders to take today off for our own respite. They tell us that this is to be expected, and often. They tell us that there isn't a single vent parent in existence who hasn't thought twice about running for the hills. We wouldn't know. Because we don't personally know anyone else who's ever been exactly where we are right now. It is the scariest feeling in the world.

Believe me, I'm not whining. I'm not expecting any of this to be easy, ever. And I am no stranger to care giving. It's been almost nine years since I lost my mom to metastatic lung cancer. I know exactly what burning out does to a person. Quite honestly, this is the most difficult situation I have ever lived thru. Period. But, how can I look this little girl in the eye and tell her that I am not strong enough to be her mother? I would rather cut my own heart out with a spoon. We may end up in the funny farm by the time this is all said and done. But we will die trying. MFH and I refuse to quit on her. 

"Can I Has My Puppy Now?"

The Award For Best Hair-Do Goes To....

Tiny Hands, Giant Heart

Guarding

Stinky Winker

That being said, we are officially calling all cars. A big part of the program involves resourcing. Learning how and where to find a back up for our back up. Having a Plan C, D, and E before we can anticipate needing them. So many people have offered us help for months now. And now is the time when we need it the most. So, if you happen to owe me one, I'm cashing in. As of three o'clock this afternoon, we now have a tentative date of discharge. Tentative, as in any little hiccup can set us back for several more months. If we miss a day, or Little Bird has any further medical issues, we will be kicked out of the program, and getting back in takes an act of God. Tentative, as in because of the situation we've experienced back in November, we are both far too superstitious to publicly announce it, yet. But it is upon us. All I am willing to say is that it is sooner than you may think, and certainly a lot sooner than we expected. Keep your eyes on the blog for further updates. Believe me, when it happens, the world will hear me singing from the rooftop.

Her Reaction To The News

  
During my first over-nighter with Little Bird, she and I concentrated on rebuilding the trust so many surgeries stole from her. We spent, literally, two entire days in a rocking chair, cuddling and catching up. Trying to get her better than good. It's not something that can be magically cured in a few days, but we're getting there. She still cringes when caught off guard, but she no longer feels like we're going to hurt her. In fact, this afternoon? As we were in the meeting, her respiratory team was in the midst of transferring her onto the vent she will be released to come home on. When we entered her room, she was guarding again, and outwardly expressing physical signals of fear toward the four strangers in her room. We approached her bed and held her hands to let her know she wasn't alone. She squeezed our fingers and smiled, and calmed down enough for them to successfully bump her down to room air on the machine. Her feedings are also almost back to where they previously were, and she's begun to take the bottle once again. Not a lot, just a half ounce per attempt. But it is better than nothing. Her wound is also healing, even though the clamp and sutures will remain in place for several more days. It started to look suspect to us over the weekend, and her surgeon irrigated it this morning. However, they're being overly cautious and have already started her on another course of antibiotics to prevent the slightest possibility of infection. 

I never knew it was possible to want something so badly, yet not at all, at the same time. To have fear and anticipation all at once. In a million years, I never imagined I'd be in this position. To be so incredibly blessed with the most amazing presence I've ever known. I think back as recently as Number Five's arrival. Those first, precious months with her. When she was this age. How lucky we were. How lucky we are. Life is so amazingly fleeting and fragile. Every minute is a gift. No matter where you stand, in this very moment, take a minute. Consider your position. If you're broke. If you're lonely. If you're worn out. If you're hurting in any way, or want for anything. Take a look around you, and think of all you have. When you take your next breath, inhale as deeply as you can, and hold it for a second. Go ahead. Do it right now. See that? See how incredible that ability is? Feels pretty good, doesn't it? Cherish every single chance you get to do that. You never know how easily something we all take for granted can be taken away from you, just like that. So appreciate it all. The worst of the bad, and the very best of the good. 






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Soul Searching.....

Last Wednesday, we heard from Cathy, our PICU social worker. She called to tell us that the cancelled team meeting was rescheduled for Friday afternoon. I spent the time in between pushing fluids, popping antibiotics like they were Pez, and tokin' on two different inhalers in my best attempt to eradicate the bronchitis that was keeping me out of the PICU. Sick or not, I had to be there. But I held onto the hope that resembling slightly healthy might mean a quick peek at Little Bird, even if only thru the glass of her door.

When we got there, MFH buzzed in and spoke to a nurse who instructed us to hang out in the waiting area until we were summoned to the conference room down the hall. Seven different medical professionals, plus us. Little Bird's attending physician began by briefing everyone on her medical status. Concerning last week's emergency, she is stable and steady, and holding her own. They found no evidence of any neurological issues, meaning that what she had experienced in the midst of the evisceration wasn't a seizure, but rather pain. Very excruciating, very overwhelming, very raw pain. Her team spared no time in getting the situation under control. Her surgeon made certain that the wound will not reopen again by suturing and stapling a clamp in place around the site. It definitely isn't pretty, but it works.

Even though her pain meds are being weened down as I type this, she's still on some pretty powerful stuff. But it's keeping her from feeling the severity and the extent of the healing. We're not back to bottle feedings yet, but she is taking bolus feeds thru the G-tube. Though we still have a way to go in regards to getting back to the amounts and frequencies that she was at. Her vent settings are also being slowly bumped down to where they once were. It may not seem like much, but she's busting her Pamper's to get well, and all of this progress is pretty hard core.

Immediately after that update, our vent-to-home program coordinator began explaining the outline of what the next few months of our lives will now involve. Before we could be officially accepted into this eight week long boot camp, certain criteria must be met. And before that can even be evaluated, they needed to ensure that we were ready, willing, and able to continue forward. Because it isn't simply "Well, this is what she's going to need once she comes home", but more along the lines of "Are you a hundred and fifty percent sure that you can do this?". Parental duties and responsibilities are one thing. But being a caregiver, for however long that may take, is above and beyond.

I can tell you that this wasn't something we wantonly agreed to. Even though the emotional us had the immediate response of "Yes! Bring it on!", we spent a long time looking at the situation from every single possible perspective. Like, what happens once she's home, and Number Four has three friends in for a slumber party, and I'm sick? Or, what happens if MFH's back blow's out? Can I handle caring for her, him, and everyone else, without any help for several days at a time? And even the don't-want-to-go-there-but-we-need-to scenario of what about if she can never make the jump off of the vent? Should her prognosis ever change for the worse, are we capable of making this commitment to her? Are we completely aware of and prepared for what's in store? Long stretches of stressful days and nights with no sleep. Kissing any prospect of a social life beyond emails and Facebook goodbye. Our electric bill tripling. Weekly visits to several different specialists. Opening our lives up to strange medical personnel, as well as our home to physical and structural changes. If we had any reservations at all, this was the time to voice them. Our one opportunity to speak now or forever hold our peace.

I'd be a liar if I told you that I didn't have any doubts. The biggest being can I give Little Bird the kind of life she deserves and still maintain a balance with my other five children. Am I stretching myself too far? Am I taking away from the other kids? The good news is, I already had six months to contemplate all of the above. And the plus side is that tomorrow will always only be another twenty four hours. I won't suddenly wake up and have to take on a year's worth of everything all at once. When we do bring her home, she will only be one day older than the day before. One day at a time. Can I handle that? Yes. Are we ready? Absolutely.

We ended the meeting on that note, and expected to head home immediately afterward. However, the PICU charge nurse took pity on my boo-boo face, taught to me by none other than Little Bird herself, and cornered her doc on the way out. "C'mon, Doc, just five minutes!". Doc L caved, and they handed me a surgical mask. Bazinga! 

"Mom, you're embarrassing me!"

"What's going on 'round here?"

"Oh! I get it! Dress-up!"

"You're lucky I have a good sense of humor!"

We actually got quite a bit more than five minutes, thanks to Cathy popping in to *cough*remind us about umm....something*cough*. She bought us a bit over an hour total of snuggles and luvins and kisses. Little Bird was sitting upright in her seat, and smiled at us the second our eyes made contact. To my surprise, her nurse pulled up a rocking chair. I honestly didn't even expect to be permitted to hold her, but certainly wasn't about to object. She thought the mask, and my Go-Go Gadget glasses, were hysterical. This was also a tiny blessing, because I was worried that she'd surely see it and immediately freak out, thinking she was about to be cut open again. You wouldn't believe that a six month old infant is aware, but she very much is. MFH and I have witnessed her zone herself out and concentrate on the fish on her ceiling during suctioning or trach care. She does recognize when the boo-boo's are coming, and it is heart wrenching. But at the same time, she knows when they're not, and that's a both a blessing and a curse. Because no child should ever have to realize the difference. 






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Two Steps Forward, Three Miles Back....

This morning, we received a very distressed phone call from Little Bird's nurse. Literally moments earlier, the baby's ventilator began to alert that she wasn't breathing. Her nurse rushed into her room to find our daughter holding her breath, and staring blankly and directly ahead of her. Her nurse immediately unwrapped her blankets in an attempt to stimulate her, and that's when she noticed the bulge thru the baby's sleeper. She opened her clothing and found that last week's fundo surgery site opened, and her intestines had eviscerated through the wound. 

In between the staff passing the phone back and forth between the surgeon, anesthesiologist, nurse, and specialist, we were asked if Little Bird had a history of seizures. Her team isn't sure if she was experiencing one when her machine alarmed, or if she was in the midst of shock. As it stands, they are classifying it as the latter until neurology can run further tests. 

Little Bird's surgeon called us as soon as they finished up in the OR. The repair took three hours, but so far she is stabile and will remain under heavy sedation until tomorrow. She is on full vent support right now, as well. I've been arguing with the staff to allow me in for just two minutes to see her. But even swearing on a stack of bibles not to touch her isn't enough to convince them. My head keeps telling me it's too dangerous to expose her to illness, especially right now. But my heart wants to hold her hand and let her know we're watching over her. 

MFH says that maybe she was staring at her guardian angel, and that maybe whoever it is was talking her thru it. I really want to believe him. Yesterday marked six months since Little Bird's birth. Six months spent within the confinements of various hospitals. Today was supposed to include a team meeting to discuss all that her eventual homecoming will involve. It was cancelled yesterday, because of me being sick. When we got the call this morning, we assumed it was about rescheduling this before we even answered the phone. How does it go from a planned conference concerning her release to a life threatening emergency so quickly? We knew from the beginning that it wasn't going to be easy. I just never expected this. 






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Recovery....

A really brief update, as I've been hit with another bout of bronchitis and looking forward to bedtime like never before. Little Bird made it thru yesterday's fundo surgery without any major events. Her surgeon was pleasantly surprised to get in there and discover that the gastrostomy scarring was a lot more minimal that he expected it to be. Therefore, no need to repeat the G-tube in a different location. The incision is pretty big, and the procedure took a while, but she was out of the operating room and in recovery by noon. She spent the night there under observation because they've been keeping her sedated and controlling her pain before she even experiences any. They raised the vent pressure settings and oxygen a good bit to give her little body a break. But, she's as comfortable as she can get at the moment. She's stabile and snoozing, and will hopefully be more alert tomorrow. With any luck, I'll have this bug gone as soon as possible, as well as a less generic post for everyone. Thank you all, so much, for keeping Little Bird in your thoughts and prayers. Until all of this, I've never witnessed this kind of power in action. It really is incredible, and it continues to prove to be some of the best medicine for her. Words will never be able to describe how much it means to us.

 
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It Comes In Threes......

We were woken up today by a swift kick in the ass from the cosmos. MFH struggles with a complicated health issue himself, which includes scoliosis secondary to multiple Scwhannoma tumors on his spine, that are ultimately wreaking havoc and pushing everything out of alignment. This is something we've been dealing with for years, as it was discovered merely weeks before Number Four's birth. When he attempted to stand up this morning, he quickly realized that he couldn't, as he was on the brink of another blow-out. Normally, he doesn't get any warning as to when this will occur. There have been times when he simultaneously lifted a coffee pot and coughed, causing him to end up on his hands and knees, and writhing in pain. I've also witnessed him black out from shock caused by the agony that he endures on a hit or miss basis.

This Morning. He's Actually Standing Upright

His condition has progressed to the point where the spasms have become severe enough to completely manipulate his posture (see above). The good news is that this time, he had warning. He felt the pressure in his back yesterday evening. However, it is still excruciating. And I've spent the day helping him in and out of his desk chair, which is the only piece of furniture that offers him any relief right now. To squat the extra few inches in order to sit on the sofa is impossible, and he refuses to lie in bed "like an invalid". Until this subsides, the next couple of weeks aren't going to be easy.

After staving off a bout of bronchitis in the beginning of December, I awoke this morning to a ridiculously irritating and painful cough. Other than a low grade fever, I don't have any other symptoms. But I do have an appointment tomorrow, in the hopes of receiving something to clear this up once and for all. This is what I get for sharing cups and forks with Number Five. If there is a germ in a fifty mile radius from that child, she will surely catch it, and pass it along. But, she's assured me that I will be just fine. All I have to do is make her some chicken noo-noo soup, and I'll be a hundred percent.

All of this causes a huge rift in life right now. About two weeks ago, one of Little Bird's nurses took notice to some problems that she's been having. There's no way to make this sound anywhere near discreet or ladylike, so I'm just going to explain it straight up. She's gassy. She's been gassy. Since the day she switched from breast milk to formula, this has been an ongoing issue with her. But because she requires a certain high calorie, preemie formula to maintain her growth, it's been in her best interest to leave her on it, rather than switch her to a different type or brand right now.

 She's also a puker, prone to spitting up all the time. Months ago, she was diagnosed with GERD. But it wasn't until this nurse was assigned to Little Bird did the missing pieces of the puzzle fall into place. She took notice to these symptoms right away, and proposed a Farrell bag to help Little Bird. Because the G typically cancels out the need to do so, she wasn't being burped. A Farrell bag is simply an empty IV bag that attaches to her mic-key tubing during and after feeds. It's designed to eliminate extra gas in G-Tube patients by way of the weight of the food forcing air into this device, rather than through the digestive system. And for the most part, it's been helping her tremendously. She no longer gets belly aches after each meal, making the experience that much more pleasant for her.

About a week ago, her respiratory team lowered her vent pressure settings down to five, since she's been doing so well on seven. She was able to handle this, but began showing signs that something was wrong. She started to bog out during her bottle feedings, and was only able to eat a fraction of what she now does. They chalked it up to exhaustion, and opted to raise her pressure back up to seven. And this is when our PA, Claire, put two and two together. She started to suspect that Little Bird's reflux might have been the cause of the feeding problems, as well as her inability to maintain the lower vent setting. She ordered some tests to check for the possibility that the baby's formula could be backing up into her lungs, and the results came back positive. 

After consulting with one of their pediatric gastroenterologists, it's been decided that the best course of action to take right now is to regretfully, put Little Bird thru another surgery. An operation that was actually supposed to have happened back in the NICU and at the same time her G-Tube was placed. Or, so we were told by one of the neonatologists while we were there. Though, when it came time for the procedure itself, the surgeon that we spoke to told us that he saw no need for her to have it done, and decided against in while they were already in the operating room. Something that would have taken twenty minutes of time spent performing a laparoscopy then will now take a minimum of two and a half hours during a laparotomy at seven thirty tomorrow morning. 

And that's if they don't run into the complications that they are already expecting. That of scar tissue that has formed as a result of the G-Tube, which they suspect will interfere with the Nissen fundoplication that they are hoping to achieve. If the scarring is as vast as they are considering it to be, they will essentially have to remove her feeding tube in order to properly wrap the upper part of her stomach around her espophagus. Once that's accomplished, she'll likely then have to have the gastrostomy placed in a new site. 

I can't even remember, off the top of my head, how many times this child's been placed under general anesthesia already. She's not even quite six months old yet. But I can say that it's been at least twice the amount I've ever experienced as an adult. The fear. The worry. The heartbreak. That awful look in her eyes when she wakes up. I wish I could do this for her. I wish I could somehow transfer all of the pain that she is going to endure, and take it away. I hate that I can't help her. It just isn't something she or I will ever get used to.

Only four days into the new year, and the universe is already beginning to pile it on. They say things like this come in threes. Maybe if we get it all out of the way now, the months ahead will prove to be a lot smoother. Hopefully Little Bird's later years will be blessed with nothing but happiness. God knows she's already earned that right. 








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Explaining A Ventilator and Tracheostomy To A Four Year Old.....

Last night, I had the most in-depth conversation about Little Bird with Number Five. It all began with an abrupt phone call. Early that afternoon, as I dressed and packed up the girls in preparation for a visit with their sister, MFH placed a quick call to the baby's nurse. We wanted to give her a head's up, that we would be bringing a couple of stow away's along. Though, the advanced knowledge of this was more of a necessity in regards to our preschooler. The only children allowed to visit Little Bird's PICU are siblings, but absolutely no one three years of age or younger, related or not. They'd previously never given us an issue with this before. Still, it was best to warn them because we can never be sure of what changes occur with the wee one from day to day. Being that she's under close monitoring with the new vent pressure settings, her becoming too excited can cause a false record of her breathing. There have been days when MFH and I couldn't pick her up or hold her because of this. 

Her nurse immediately advised us against not only not bringing the kids, but also said it would be best not to come, ourselves. She wasn't saying "No, you can't see your baby", but she did inform us of an outbreak of RSV within the unit. RSV is a highly contagious virus that typically affects preemies, and young children with heart or lung complications or weakened immune systems. It's very common, and especially between the months of November and April. If you have kids, chances are, they've had this before. However, in healthy youngsters, it presents as a mere head cold. Stuffy or runny nose, a cough, some sniffles. For a preemie, it can be life threatening. Imagine pneumonia, and multiply it by ten. 

On December 5th, Little Bird was given her first dose of Synagis, which is an antibody used to help prevent and combat the affects should a neonate contract or be exposed to this illness. This is something she'll receive every twenty eight days until April 15th. Tomorrow, she is scheduled for her second dose. But the staff on her floor is erring on the side of caution regardless. They've taken the initiative to isolate Little Bird as much as they can, hoping that the less people she is exposed to, the better. That's not to say that we couldn't walk in there right now. But to do so now means a full surgical scrub in, and gowning and gloving up. And not that we would mind it, but should we become carriers ourselves, we will essentially pass it directly to her. They are also looking out for the well being of Number Five catching this. 

Number Five had specifically asked me, the night before, if she could visit her baby. I'd already had her dressed and was putting her boots on her when I had to stop mid way and tell her that she and Number Four wouldn't be able to go. Before I could get any further than that, she burst into tears, and complete hysterics. "But that's my bay-bee too! I want to give her luvins!". Call me a sucker for a crying, little, curly-haired girl with big blue eyes, because I damn near cried myself. In an instant, our plans changed. We called Hope back, and our itinerary off. I knew there would be no way I could pull away from the house with her, standing in the window, crying and waving like she would have. So, we opted instead to take a quick drive in the rain, stopping to buy her and Number Four some parentally guilted candy and the boys some equally contrite fried chicken. I can't help but think it was the right thing to do. As I type this, Number Five is scratching what looked like a contact reaction to some new body wash but just might be a viral rash. She's also sneezing, and beginning to sound stuffy.   

Hours later, we were back at the house, where I was busy researching all things respiratory syncytial, when Number Five approached me and began asking questions. Before this, the extent of her awareness concerning Little Bird's medical issues was pretty limited. How do you explain to someone this small a ventilator or trach, let alone why it's necessary? How do you make her understand what these tubes and numbers and wires and beeps mean? Well, let me tell ya. 

First, I sat her on my lap and pulled up the compilation of photographs that we have of Little Bird, and all of her equipment. I began by instructing her to take a big, deep, breath, and told her to hold it in, pretending that she was going under water. She did this, and exhaled after a few seconds. I then Google'd an drawing of an image of human lungs in correlation with where they are located within the body. I told her what they were and what they did. She thought this was pretty interesting in itself. I then showed her a picture of Little Bird's ventilator, and described to her how it breathes for people. I know she can not yet comprehend why the baby's lungs don't work the same way her's do. So, I told her that her baby sister's were broken, and that the machine breathes for her thru a tube that goes into a small hole in her neck. 

You'd think this would terrify a four year old, right? Evidently, not my four year old. She was even more intrigued, and asked about a hundred different questions. Including how could Little Bird sit in her car seat with all of these tubes and wires, when she comes home. She knows what an ambulance is, and what it's for. So I told her that when she does come home, the ambulance will drive her here. Even I was surprised at how easily she grasped this idea. She also asked me if we could take the tube out of her boo-boo (aka, the stoma), once she get's in the door. This proved to be the most difficult aspect of all for her to realize. Number Five has absolutely no experiences with death. Not a pet. Not a relative. Nothing aside from the occasional bug she squishes in between her thumb and index finger. She doesn't quite get what this is or what it means. And at that point, all I could explain to her was that if her tube comes off, Little Bird can not breathe. But she knew the seriousness of my tone when I told her that under no circumstances is she to ever, ever touch that tube once Little Bird is here. That much, she did get, and said "Don't worry Mom, I not gonna touch nothin'!". I'd be a monkey's uncle if I said I believed her, or any other kid her age, when it comes to this. And we will be certain to have a set of eyes on Number Five at all times, too!

Because she still has soooo many questions about everything, I am now on the hunt for the perfect baby doll for her. Perfect, as in one able to withstand a tracheostomy without breaking or falling apart. I got the idea from fellow parents on a support forum I joined several weeks ago. The concept of trach'ing a model in order for not only Little Bird, but also her sister, to come to terms with that of which makes her so unique. From what I've gathered, patients old enough to distinguish this difference really appreciate the effort and the ability to have a little buddy that's so similar to themselves. I think this will help drive it home to Number Five on a level that she can accept. Perhaps my old laptop can even act as the ventilator.

For what it's worth, Number Five is beginning to distinguish some of the special needs of her baby sister. Which is kind of staggering to me. Up until recently, I've known very little about being in this position myself. For her to be able to perceive it as much, though very little, as she does isn't something I would have ever expected. It's kind of like that song by Louis Armstrong:  They'll learn much more, than I'll never know. Those are some truly, genuine words, right there. 






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From The Mouths Of Babes....

Since it's 2012 now, I thought I'd kick off the new year with a little comedy. Years ago, I began keeping a file of some of the funniest shit ever to come out of the mouths of my kids. This habit turned into a damn near daily ritual. I recommend it to anyone with children, because you never know what they're going to say or how they are going to view the world around them at any given time. Plus, it really helps to look back and read the log during days when you might begin to wonder if Joan Crawford was simply just misunderstood. Trust me, if you haven't already, sooner or later you will ask yourself "What the hell were they thinking?". Something like this can offer a lot of insight. Some of these little proverbs are older, and some are newer. Some are pretty disgusting, so I'm warning you now not to eat or drink anything beyond this point...




Number Five: "I want to play my keyboard in here."

Me: "It's very loud. Go play with it in your room."

Number Five: "But I like to play it here!"

Me: "But I'm trying to concentrate."

Number Five: "You're supposed to concentrate on the potty!"



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Me: "Two, if you keep doing his laundry for him, you're gonna be stuck with Three as a roomie when you guys grow up".

Two: "No, I'm not. He's never going to leave home..."



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Two: "What smells like hoagies?"

Three: "Hoagies...."

Two: "Oh, I thought it was just me...."




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Me: "Five, did you poop?"

Five: "No!"

Me: "Yes, you did! I can smell you from over here!"

Five: "It's not poop! It's ice cream!"



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As she was leaning, head-first, from the recliner and onto the floor...

MFH: "Five! What the hell are you doing?!" 

Five: "Falling...."



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A typical Sunday morning in our house. The phone rings, and we're all too lazy to get up and answer it. Hearing the machine pick up, Number Five hauls ass into the kitchen, and stands a couple of feet away from where the phone is mounted on the wall....


On The Machine, My Father In Law's Voice: "Hey MFH, It's me. Are you there?"

Number Five, On The Top Of Her Lungs: "It's me! Five! I am here Pop! I can hear you! It's me, Five! Can you hear me? Can you hear me!?!"





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Five, In Her Sleep: "It's NOT Ghandi!"




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While Watching Dora The Explorer One Afternoon...

Dora: "Can you say aqua?"

Five: "No!"


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Me: "Five, Where's my phone?"

Five: "I not Five, I a penguin. You hafta say penguin, where is my phone."

Me: "Okay. Penguin, where is my phone?"

Five: "I don't know! I just a penguin!"


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More Number Five Randomness...

"I got TWO legs! I got TWO legs!". This finally occurred to her.

Singing to herself one morning..." Mary, Mary, little ham! Little ham! Lit-tle ham!"

"Cock-a cock-a caw! That's a morning chicken!"




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Five: "I soooo hungry!"

Me: "Daddy is picking up KFC. Do you want mac n' cheese?"

Five: "No! I want dog food!"




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Four: "I hate roller coasters. I hate that feeling you get in your stomach when you go down the hills. I hate butterflies."

Five: "I hate puppies!"


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MFH, as he was changing Number Five's diaper: "I'm sick of this, it's disgusting!"

Five: "Whomp! Whomp! Whomp!"




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MFH To Number Five: "C'mon honey, let's go."

Number Five: "Honey? I not Mommy! I Number Five!"




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Me: "What am I going to do with you, kid?"

Number Five: "You silly Mommy! You love me!"




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Number Five: "Can we go to the beach?"

Me: "Not yet."

Five: "Why not?"

Me: "It's too cold."

Five: "But, it's summer!"

Me: "No, it's not. It's fall".

Five: (she ponders this for a minute, before saying...) "But you can use my flashlight at the beach and then you won't fall!"




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Five: "That's my baby Little Bird!"

Me: "Yep! And you're my baby Five."

Five: "I not a baby anymore, I am a big girl!"

Me: "You will always be my baby, even when you're a grown up." 

Five: "And then I can say bad words when I a grown up?"




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Three: "Dad! That lady on the commercial was just making out with her toothbrush!"

MFH: "Ooooh! What's her number?"

Me: "1-800-DIVORCE..."




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Me: "Number Five, are you stinky?"

Number Five: "No. I lucky."




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Two: "What's a democrat?"

One: "Not a republican..."

Two: "No, really. What is it?"

One: "Barack Obama is a democrat."

Two: "So, it's a black man?"






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