*sorry, this post is emotional, reflective, and detailed, but I've been needing to write it for about five years, so I understand if you don't want to read the whole thing!*
I turned 26 weeks yesterday! By the end of next week I'll move out of my second trimester and into the third!!!! Yikes!
26 weekers are amazing little people. I don't want to have one, but I do admire them. They're feisty and are way more aware of what's going on around them than anyone will ever credit them. They hear, cry, respond to pain, wrap their whisper-thin fingers around their ventilator tubes and try to yank them out...they're crafty little boogers. They have spunk and personality. But they're still oh so fragile. Any amount of stress - even a brief crying episode - can have devastating effects on the fragile blood vessels in their brain, and crossing the line from "turning out okay" to living with a lifetime of challenges can happen as quickly as you can say boo.
One of my favorite people on the planet was a 26 weeker. She's been on my mind a lot today, and I don't know why, except that I maybe am just breathing that subconscious sigh of relief with every day that passes by...and now I have an image in my mind of a 26-weeker who turned out healthy and thriving and well.
But she's not the one who turned out healthy, thriving, and well, unfortunately. Her twin sister did. I'll call them Maddie and Sonja.
Maddie and Sonja were born at an outlying hospital. The hospital was equipped to stabilize the twins but, without the backup of a Level III NICU right there, could only do so much before the transport team arrived. They did what they could, and what they did was appropriate. The girls had breathing tubes inserted in their airways and were being ventilated with a hand-operated mechanism.
What no one knew was that Maddie, while looking like your average 26-weeker on the outside, was far from one on the inside. She had a defect where she had a tiny connection between her trachea (airway that leads to the lungs) and her esophagus. Essentially, while she was being ventilated, not only were the air and pressure entering her lungs, but also her stomach.
Basically, her stomach popped like a balloon.
The course for her was set. She lived a life like no other person I can imagine or describe. I, like many other nurses, was too intimidated by her problems to take care of her. I took on her sister Sonja as a primary nurse, looking on at Maddie's bedside with a shudder. She had a tube coming out of her stomach to a water bottle to provide enough back-pressure to provide the ability to ventilate her extremely immature lungs. She was on a high-frequency ventilator for longer than I can remember (for some perspective, we as adults breathe 10-20 times a minute...babies breathe between 20-60 times a minute...a hi-fi vent will deliver between 400-900 breaths a minute, in rapid succession, to minimize pressure trauma to the lungs...it kind of sounds like being ventilated by a lawn mower).
Her story is long and convoluted. Maddie lived far longer than she had any business living, with the issues that she had. She survived heart surgery to repair a common, well, not "defect," but common "thingy" that preemies have. She survived surgery to have a feeding tube placed below her stomach into her intestine...and then survived that feeding tube puncturing her intestine and essentially being "fed" into her abdominal cavity, the subsequent infection, and then the surgery to repair that. She had infection after infection after infection, feeding difficulty after feeding difficulty. She could never be fed from a bottle because the connection between her windpipe and her esophagus still needed to be repaired.
Maddie was an absolute Christmas tree, with the less-than-lovely ornamentation of a NICU patient: a long-term IV line in her scalp where she received IV nutrition 24 hours a day, the wound where she still had a tube coming out of her stomach, a feeding tube in another part of her abdomen, extra IV lines in her hands, arms, or feet for antibiotics or whatever else we needed to give...she was beyond fat from months in the NICU, being fed mega-doses of calories but never having much opportunity to develop the muscle tone that other babies are able to develop. The IV nutrition that was keeping her alive was also wrecking her liver, leaving her jaundiced.
Essentially, Maddie was fat, yellow, had a bad haircut (we shave a lot of hair from those babies' heads to have access to their veins), weird stuff inserted in weird places on her body, and she had a bad attitude.
And I LOVED that baby.
Maddie had a wonderful family, but they had a handful of other kids (in addition to Sonja, who eventually went home after a few months) and couldn't be with her as much as they would have loved. So most nights I had Maddie all to myself. We had a great relationship. By the time I picked her up as a primary - after Sonja went home - she was a few months old, breathing on her own, and in an "open crib" (as opposed to those plastic boxes - isolettes - that the littler preemies are in). When I came on for report, she'd hear my voice and twist her chunky little body around so she could see me. We had our little routine, which included what I called the nightly eruption of "Mt. St. Maddie" because her foul temper would take over the entire room as I assessed her, cleaned her, and changed her dressings. Then I would set her in her little baby papasan, set it on vibrate, and sit on the floor next to her while I charted so she could keep looking at me.
Every morning at 2am we had the chance to snuggle. You don't get many chances to snuggle NICU babies. They're not exactly in much of a position to be interacted with like normal babies. Snuggling Maddie was...exciting...with her tricky array of accouterments. I'd have to drape her scalp line over my shoulder, her other IV over my arm, and clutch her back-pressure bottle from her stomach between my legs as I sat in the rocking chair. But then we'd rock, and I'd play with her hair and tell her how beautiful Miss Jenny thinks she is, even if she was fat, yellow, and grumpy.
Maddie wouldn't make eye contact with me. Or with much of anyone. Many NICU babies won't. But one night, as I sat with her, she fixed straight on my eyes and wouldn't look away. Another nurse grabbed the unit's camera, set up a sheet behind us, and we had a "photo montage" so we could capture the moment...this yellow little basketball staring at me with huge brown eyes.
Maddie "barked" when she wanted attention. I'd be charting at another bedside across the room, and she'd peer at me through the jail-bar-like slats of her crib and yap - a sharp, raspy "MEH!" to get my attention. So now I had a fat, yellow, and bossy baby on my hands.
Ah, but things started happening, things that any NICU nurse can predict for a life like the one Maddie lived. Her story becomes even more long and convoluted and I'll leave it at that. She needed surgery to repair her defects, but the procedure was life-threatening for her. She got sick from the IV nutrition she was receiving. Her wound in her stomach would never heal, and the doctors were tired of me chasing them down every shift asking what more I could do...because, there was very little anyone could do. She was a medical and surgical atrocity, basically. Her dear parents knew what was ahead. At 4am one morning, her mom asked me to tell her as honestly as possible what I thought would happen, and I told her...and she quietly conceded, "That's what I was thinking, too."
During one of the worst nights of my life, I spent roughly ten hours with about six other doctors and nurses trying every last effort to keep this baby alive. I was exhausted and apologizing profusely in my spirit for making her endure things that not one of us would ever want to endure, given the choice.
Maddie had her surgery as a do-or-die effort to close off the airway-esophagus connection once and for all. And that's when they found the truth: she had hundreds - HUNDREDS - of these connections, interlacing two parts of her body that snuggle like buddies next to each other in all of us but were never, ever meant to communicate in such a way. She was sent back to the NICU. Shortly thereafter, she put her foot down and said no more, and now she's whole in heaven, God be praised.
Maddie's story rocked me. We all do our best to maintain a professional distance, but every once in a while - maybe once in a career, even - one patient's heart weaves into our own. I have so much respect for Maddie. I wish I could have treated her with even more dignity, but we had to do what we had to do...babies don't exactly come with living wills for what they do or don't want to have done in the event of a crisis - and many of those babies are one crisis after another. Their parents and families dance the tenuous shuffle between grief and horror and hope, sometimes from one minute to the next, and we as nurses have to remain objective and truthful and supportive of their decisions.
So all that to say, as I feel this little person moving around inside of me, I know what he or she looks like, I know what he or she is capable of, and I know what he or she would endure to have a chance at life. And that is awesome, in ever literal sense of the word. These little people are amazing and deserve so much respect. God has made them more fearfully and wonderfully than we can ever imagine.
So "Maddie," I still love you, and Miss Jenny thinks you're beautiful, and I can't wait to hold you again someday on the other side of heaven.
And Little Bird, you stay put, alright? Good things await you on this side of heaven!