**This post is days in the making, bits and pieces, here and there. It's all over the place, and my apologies in advance. But I wanted to update for the many well wishers. Every single prayer is delivered to her personally, and we thank you all for that. Further updates might be just as sporadic, but we will give them as soon as we can.**
My heart hurts. I want to scream. I want to hit someone. I want to pull my hair out. I want to cry. But, I can't. I want to shop for little pink hats. I want to feel her kick me. I want the leg cramps, the heartburn, the mood swings, the God damned bed rest. But, I can't.
I want to be able to tell #3 that his sister is going to be okay. I want to tell #4 that it's not wrong to laugh and be happy about something, anything. I want to be able to reassure this family. I want to upload the photos without something bad happening. I want to not have to share my baby with a thousand strangers who's names I will never remember. I want to not die a little inside every time the mother fucking phone rings. But, I can't.
I want to kiss her. I want to be able to touch her without it hurting her. I want to take that fucking tube out of her throat. I want her bruises to heal. I want her eyes to see me. I want to hear her cry. I want to hold my daughter. I just want to hold her. Just one time. But. I. Can't.
A perfect storm. Bleeding from the subchorionic hemmorhage made a slow amniotic leak that apparently began two weeks earlier undetectable. Nerve damage from a pre existing condition masked the pain of true labor. At 3am, I felt uncomfortable. By 10:30am, I began to question the symptoms. By 11am, it was time to go to the hospital. By 11:30am, it was too late. As the paramedics were walking thru the door, I could feel her coming out. We barely made it off the hill when she arrived in the back of the rig. There was no sound. Absolute silence. Seven people in that ambulance, yet no one was saying a word. She was inches away from me but I refused to look until she finally did cry. And there she was. Fourteen weeks early.
We went directly to the closest helipad. She flew out first and arrived at the NICU within minutes. When I got there, the staff was working hard to stabilize her. One pound, thirteen ounces, thirteen inches. She was cold, and in shock. A ventilator, to help her breath. IV's, to increase her blood pressure. A thousand hands, all holding her, but none of them were mine. It would be hours before I could even see her. MFH got there, and the look on his face explained everything. I could always judge a situation by that, he really sucks at hiding emotion. His efforts at my bedside were useless. I sent him to be with Baby Girl. She needed to know we were there, she wasn't alone. He came back a while later with an update. She was finally stable. And so it began.
Later that night, I finally got to see her. And to touch her, albeit brief. Nothing could have prepared me for what lay ahead of those doors. There are no words to describe her fragile size. So many machines, all working for her, and her, fighting against every one of them. A ventilator and oxygen, to help her breath. Phototherapy lights, to diminish the build of billirubin in her blood. Various IV's, to sustain her electrolytes and sugars. A PICC line, to administer medications that would ultimately assist her in accomplishing the smallest of tasks we all take for granted, like blood pressure regulation and the ability to urinate. A gavage tube, because it will be weeks before she learns the reflex of sucking from a bottle. So many leads crisscrossing her frame and closely watching every heartbeat, every respiration. My instinct wanted me to reach into her bed and pick her up. Take her away from all that hell. But I couldn't.
The thing about the NICU is that time is of the essence. The staff never pulls punches. Whether the news is good or bad, they will never waste a second sugar coating anything, no matter how much you may want them to. Her doctor approached her bedside, and gave it to me straight up. Twenty five percent. Those are her odds for the first ten days. Plugging the dam. That's what she described this time period as. Every effort geared toward sustaining stabilization and keeping her from getting any worse. After the first ten days, then we'll concentrate on progress. But for now, she holds the reigns. We follow her lead. Hope for the best but prepare for the worst.
And so we did. The next evening, MFH brought her siblings in to meet her. How do you explain all of this to a three year old? An eleven year old? A fourteen year old? Even a fifteen year old? There is no way. You just do. We sat them down and did our best to describe the war zone they were about to walk in to. They went into the unit, one at a time, but came back as a collective whole. And they broke my heart when they returned to my room and said "She's part of us. She's gonna fight thru this". Hearing those words from anyone else means nothing to me. Hearing it from them gives me comfort, and hope.
Today is day eight. And she remains stable. She has a grade one choroid plexus bleed on her brain that can only be monitored for now. The NICU director said if we have to have a bleed, it's the best we can ask for. She has jaundice, which is to be expected. Her liver is only that of a twenty six week fetus. Her blood pressure was critically low, but dopamine helped, and so far, she's able to regulate it on her own. She couldn't pee, but a transfusion of plasma kick started her body into doing that, too. She was severely bruised from the delivery. A few days time brought the swelling down, and the marks are now all but diminished. She has apnea, and caffeine is helping her lungs remember to breathe. Antibiotics are keeping any infections at bay. Tropic feedings of breast milk are preparing her stomach for when she finally can tolerate food. They switched her vent, a downgrade from the high frequency oscillator that she did nothing but fight and breath over, causing her blood gases to keep coming back fluctuated. You'd be pissed off too if you were trying to sleep thru all of that shaking. But she seems to like the new one, because her oxygen needs have decreased to twenty two percent. Her umbilical line was removed a few days ago, because her PICC line was a success. No rejections, no reactions. And she no longer requires glucose. Baby steps. I'll take every bit of good news I can get.
And she is so damn feisty. All of her nurses agree. In fact, they are actually sedating her, to give her body the opportunity to grow. She knows when we're there, I know she does. She works so hard to open her eyes when she hears us. Just a peek here and there, a split second. But she can hear us. Her eyes can also sense light. We know this, because the overheads piss her off. She can touch with her tiny hands. She can kick her legs that are no longer than my index finger. And she can lift her arms, splints and all. On day five, I got an unexpected and pleasant surprise. We arrived in time for her care, and I got to change her diaper for the first time. It was nerve wracking, and so bittersweet. These are the only moments that we get to touch her. She can't tolerate stimulation. It took everything in me to pull my hands back out of that isolette.
We do have photos, and video. But I'm stingy right now. And very superstitious. We won't be out of the woods for quite some time, but if we make it to day ten without any major changes or events, I promise I will post all of them. Twice. What she needs now is time. Time to heal. Time to grow. And prayers. Lots of 'em. I'm not a religious person, but I have to believe that for whatever reason, she was meant to be here now. I have to believe that there are no coincidences. I have to believe that she will get better, that she will thrive. That she will come home. Positive thoughts only. I have to believe.
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