Saturday, September 10, 2011

Did You Know?

As a kindness for their patients, Little Bird's hospital has an e-card service, where well wishers can send virtual messages of support. These cards can be created, free of charge, at http://www.chop.edu/ecards/ecards.cfm. They are printed out by staff in the Family Library, and hand delivered to the recipient's bedside. If anyone is interested in relaying a little bit of hope & love, you can do so by accessing the link above and addressing it to "Main Campus/NIICU EAST", and she'll receive your message in one to two business days! 

One day, when she's old enough to understand, she'll have these momentos to look at. I know she'll appreciate how many people were praying for her recovery, and know that they've helped her pull thru :)
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Wednesday, September 7, 2011

In Other News....

Little Bird withstood the transport rather well. And to think that it took a physician, a respiratory technician, two critical care nurses, and two paramedics to relocate all four pounds of her from point A to point B. She was very sassy during the trip, letting her entourage know that she would not tolerate anything less than the best. She is a tiny diva.

Yes, you read correctly. I did write 'four'. She currently tips the scales at four pounds, four ounces. Her nurses are also stunned by this, with several of them weighing her twice a shift just to be sure. Since the events of this past weekend, she's also unbelievably and impressively breathing with vent settings that have been adjusted to mimic C-PAP. Something she hasn't been able to do since Day 10. She subsequently required yet another blood transfusion after Saturday's episode, but her blood count has held steady since. Yesterday, an ENT specialist evaluated her airway in order to better assess the situation with the BPD. As far as they can tell, she may not have subglottic stenosis. And they are trying to refrain from invasively scoping her. Did I mention that I love this new facility?

Last night, her nursing team decided that it's in Little Bird's best interests to completely prohibit her from sleeping on her belly. They've also decided to sedate her, to reduce the risk of her removing her breathing tube again. Not a lot, just enough to keep her comfortably calm and quiet. A little common sense goes a long way. The attending physician on the floor concurs with what I've been preaching all along. That her lungs are still a bit too immature, but that she will come off of the machine. Little Bird will fly, in her own time. 

This afternoon, we spoke to her ophthalmologist. Her eyes will be rescanned tomorrow, in order to keep track of how her vision is progressing. They asked us for consent to allow Little Bird to be part of a study in which they'll take digital images of her retinas and email them halfway around the world, in order to prove that accurate diagnosis' can be determined this way. Not quite two months old and she's already pioneering medical technology. Kind of makes the rest of us feel inadequate, no?

At least for now, she is stable and content. She's eating. She's resting. She's growing. She's healing. Maybe she can't do that as quickly as the statistics say she should be able to. But then again, she isn't a statistic. Over the past two months, she's endured more than I ever could. And considering that she is not supposed to be here yet, I'd say that's pretty damn immeasurable. 


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Those We Can't See...

This past Saturday, I was sick as shit. Like, I-can't-even-remember-the-last-time-I-was-ever-this-sick kind of diseased. A few days earlier, one of the bigger kids brought the bubonic plague home with them during their first week into the new school year, and everyone but MFH (who, for the record, never gets sick) was ill. We were planning on visiting Little Bird, but I knew there was no way in hell they'd even allow me beyond the buzzer. So I sent MFH and Grammy, in my place, along with the camera and virtual hugs and kisses.

When they got there, they were surprised to find the top of the baby's isolette opened. She was dressed and bundled, and quietly sleeping thru what was her first real trial of maintaining her own body temperature. This is something she is starting to accomplish now, and something she must be able to do before she can come home. But this was also the calm before the storm. The tranquility of the moment would prove short lived. Later on that night, I sat with MFH and listened to him try his best to gently describe, in detail, his account of the second time he bore witness to our daughter's resuscitation.

Only moments after they arrived, her ventilator began to alert. Her nurse came over to check her status. Right behind her was another nurse, asking if Little Bird was breathing. "Not yet", she replied, as she began to vigorously rub the baby's back in an attempt to stimulate her. Immediately after that, the vent alarm went fucking insane, as did her monitors. Not a single measurable wave on that screen. Her heart stopped beating. 

That quickly, every staff member in the unit was at her bedside, and they began systematically shuffling families into the hallway. The last thing MFH saw was Little Bird's body fall limp, eyes and mouth agape, her face blue. The last thing he heard was one nurse calling for respiratory and a cart, and another calling a code. Just as MFH and Grammy were heading thru the doors on their way outside to await procedure, Doc H. sprinted past them down the hallway. 

After what felt like forever, but in actuality was approximately twenty five minutes, they were ushered back inside. MFH said that his physical being shook so fiercely that he was certain he was going to collapse. He was absolutely rocked to the core. When they reached her bed, her nurse greeted them with a relieved smile. Little Bird was stable and conscious. The culprit? An obstruction in the base of her breathing tube that completely blocked her airway. They tried to suction her but weren't able to clear it. The respiratory technician that responded to the call wasted no time in immediately extubating her. In the instant that the tube came out, she gasped so strongly for a breath that it visibly shocked everyone who saw her do it. 

It took a lot of effort for me to write this post. It wasn't something I really wanted to emotionally touch on, even in third person. But it had to be told. It's part of her story. And how else would I be able to show you these...




They were taken shortly after MFH collected his sensibility. Doesn't even look like the same baby, does she? I'd like to assume she doesn't and won't remember that incident. But something tells me she is quite aware. Part of me almost knows that she wasn't alone. That someone was whispering in her ear. Never, in my thirty three years, have I ever known an individual to be so tenacious. She has no intentions of giving up this fight. And we certainly have no intentions of giving up on her. 





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Friday, September 2, 2011

Hell On Earth....

It's been a tough two months. I've previously described this, in part, in recent entries. But it's been more than just what's occurred inside of the NICU, and I'd essentially be lying if I didn't admit all of it. By publicly posting these updates, I'm giving everyone a window into what our lives have been like since July 9th. I'm disclosing some pretty intimate details about our daughter and this family, and it is only fair to everyone involved that I force that curtain back a little further no matter how much I may be afraid to.

Last night, I came to terms with the truth that I've been purposefully discreet about a big part of the past eight weeks. That of which we do not speak of outside of the confinement of these walls. Not even to extended family. Not even to the staff at the hospital. Not until now. 

Shortly after the birth of Number Five, MFH began to sense that something was very wrong. I thought it was just hormones. I blamed it on lack of sleep. I assumed it would pass. I became a monster. I despised everyone around me. I hated myself even more. I couldn't look in a mirror without wanting to spit on the reflection that stared back at me. I couldn't stand being touched, and ultimately withheld affection from my own children. I didn't want to hurt anyone else, but I couldn't do enough to hurt myself, both mentally and physically. It got to the point where I was saying and doing things that I am ashamed to so much as introspectively recollect. It wasn't until he gave me the ultimatum to either get help or get out did I recognize that the situation was no longer within the boundaries of my own control. And he was more than justified in his demand. 

So, I did. About a week later, I sat in front of my doctor and damn near palpably forced the words from my lips. I needed help, and I needed it yesterday. He didn't second guess me, and that alone was terrifying. I got very lucky with the first medication I tried. Within a few more weeks, MFH and the kids noticed the change. I no longer locked myself in the bedroom when the baby cried. I was able to answer the telephone again. I stopped screaming over stupid shit like an overlooked wet towel on the bathroom floor or a disregarded lamp not being turned off. I didn't overreact to spur of the moment changes in daily routines anymore, such as an unexpected call from the school nurse or a forgotten item on the shopping list. Going out in public no longer reduced me to tears. I felt normal again. I was normal again. And things remained that way until early this year, when I began to suspect that the rabbit was about to meet it's demise. 

The most ironic part of being pregnant is that you can not take most mood stabilizing pharmaceuticals. I know, right? If at any time during the course of a woman's life a situation absolutely warrants the need for them, that would be it. So I stopped taking the medicine, and everything was okay, or at least under control. And then along came Little Bird. So very early. So very critical. So very emotionally unprepared. It was merely days before I felt the seams begin to pull apart again. I lost all composure when they didn't prepare my discharge paperwork quickly enough, and unleashed a violent and verbal, and embarrassingly obscene tongue lashing upon the unsuspecting nursing staff. Having been an insomniac for as long as I could remember, as much as fourteen hours wasn't nearly enough sleep. I was 'accidentally' forgetting to eat for days at a time. Showering became a chore that I began to avoid. I knew it was a matter of time before I'd come undone. I was beginning to self destruct. After realizing that more than three weeks had passed and I was still leaving the house in pajama bottoms and bedroom slippers, there was no doubt about it. The creature was back and rearing it's ugly head full force. 

I had a decision to make. I could either continue pumping for the benefit of the baby, and risk the well being of the other five kids as well as my husband. Or, I could wake up and smell the Enfamil. I was fully prepared to take the responsibility of that risk until two weeks ago. Not particularly giving a flying fuck anymore, I pulled the phone cord out of the wall. No longer wanting to get out of bed, I ripped the ID bracelets off of my wrist. It was dark. It was unnerving. It was life threatening. And to no one more so than Little Bird.

A day later, and as a direct result of my selfishness, we missed a very important phone call that nearly cost that baby her life. That was uncalled for. And that was literally my wake up call. Last night, I finally came face to face with the demon, and I've begun to beat it back into submission. I swallowed the pill. It was a lot less bitter than I had anticipated it would be. It tasted like sanity. It tasted like self worth. 

I consciously passed on the only opportunity that I had to be able to offer Little Bird the one form of help and healing that I can right now. Benefit versus risk. I hope that the staff at the hospital can understand this decision, let alone what forced me to make it. I hope that none of you will view me as that unstable, shopping cart shoving personality found in too many a late night Wal Mart parking lot. It took a lot to acknowledge this problem, especially for the second time. It took a lot more to confess it to everyone who knows me. And it took everything to concede to it to myself. But it is what it is. An incredible relief to no longer have to shoulder the burden of.

Maybe my family can rest easy tonight, knowing that they are safe from any flying cutlery. They don't have to fear another sudden, sobbing tantrum or unpredicted onslaught of profanity. They can once again invite friends over and not worry about being humiliated by having to explain why their mother's clothing doesn't match or why that pile of dishes is still in the sink from yesterday. They don't have to draw straws and send the unlucky relative to my door to check up on us again (thank you for that K & H). We're okay now. I'm okay now. Or at least, I know I'm going to be




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