...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Thursday, November 12, 2009

That Night

I arrived at the hopspittle dragging my rolling suitcase and had the diaper bag and two fluffy pillows in the other hand. The other hand that was also holding my cell phone to talk with The Beloved. We had a dilemma. There was no way he could make it from here to there before the birth of our son even if they waited until morning. We were both hoping against the odds that the docs would stabilize my blood pressure and either wait a few more days to deliver or even send me home. Should he leave now and take the chance that he'd miss the work only to have me sent home anyway? That money would make a big difference in the days after we came home from the hospital. And since there was no way he could make it in time for our son's birth, should he stay there until we knew for sure what was going to happen? There are long stretches of no cell phone coverage between here and there. Long, wide open spaces. What if there were complications? What if someone had to make decisions? What if The Baby had to be moved to a higher level of care...did I want him to stop closer and go to The Baby, or make a two hour long trip so I could discharge myself against medical advice and then we would both turn around to come back the way he'd just come? What to do...The Other Mommy had collected The Kidlets. Miss Susie had locked up the house. Our neighbor was looking after the dogs. The Beloved had asked if I could call someone to be with me. Grandma ME was still at work. Bits was sick. My Big Sis was hours away in the valley. Neither one of us have family nearby except for each other. We said our tearful good byes and I love yous and I strolled into the facility and muttered the much repeated words that by now I've come to hate, "Hi, I'm your direct admit from Dr So & So..."

So...I got an IV. After three tries. A large bore IV. And then they started pumping fluids into my already bloated body. And then they decided to stop that and started giving me boluses of something to bring down my blood pressure. They decided that if my BP bottomed out in surgery they would deal with it then and start pumping the fluids again. If I wound up delivering tonight. If. They monitored Jack with the pink and blue straps. It seemed that I was already having some mild contractions. Then they did other things to my person that I won't detail here, but I won't be needing to get up to pee! And more BP meds. A nurse came in to shave my belly. And then more BP meds. The OR nurse came into my room to review my orders and stopped short. At that particular moment, there were eight other people in my room doing something to me! And then! The Other Mommy appeared behind the OR nurse. She'd left the Kidlets with her husband and returned to be with me! Like I've often said, she rocks!

The appearance of the OR nurse was in itself news. Apparently we were going. Soon. But she had other news too. Good news! The head of anesthesiology was doing my case. She said "He's the best! I've had a spinal from him, and he's really good! He's the guy you want!" And then I guess the obvious question was who would be delivering me? "Oh that's another good one. This is your lucky night! It's Dr ER! You'll have our best anesthesiologist and one of our best surgeons!" And that was good news! Dr ER was the first doctor I'd seen at the PHC and had liked so well, and the one I'd hoped to have when my stitch was placed.

I was calling The Beloved to say that it looked like it would be tonight. Then I heard the OR nurse on her phone saying, "Yeah, blood pressure's good now. Yeah. yeah. She's had three doses, no four...come now? Roll? Okay, We're on our way." She hung up and I'd just barely had time to tell The Beloved that we were going right now. He said he loved me. He sounded as scared as I was. "Please be safe. Please be okay, both of you. I'm so sorry I'm not there." I said I knew. I knew. And that I loved him and I'd call him as soon after as I could. So this was really happening. Our son was going to be born without him here. But at least The Other Mommy was here and she was already suiting up to go to OR with me. The tears started in earnest as I handed my phone to her and they started rolling me down the hall.

Once in OR I was moved to the operating table from the gurney. Then I was instructed by a voice behind and above me to sit up and straddle the table. What followed is an ordeal that makes me want to cry to even recount. I've had several epidurals. They suck while they're being done. This time I was having a spinal. It also sucks to have that done, but a little more so! The shot into the back is nothing. It's that part where the dura are penetrated and the electrical zing and instantly deep bone penetrating ache that hits and spreads rapidly outward and down as the doctor first injects fluid into that space that gives me nightmares. And all the while I was being held by an OR nurse to keep my back curved and my shoulders forward, holding my belly, my baby, in the protective circle of my arms, and trying to breath, trying to hold onto Jack for just a little longer, tears silently rolling down my cheeks. I could feel my pulse in my neck. I thought my head might explode with the pounding of my heart. I was on the verge of panic when the nether voice behind me said that it was all finished and that I should start feeling numb any minute. I was assisted to lay back down. I could still move my legs, just barely, but I could still feel them! Was this normal? Yes said the nether-voice, once again above and behind me. Then the nurse started prepping my belly with orange fluid. People were moving all around me. Suddenly I had a bloody nose from the hydralazine I'd been give so much of. I tell a nurse. She says it's probably nothing. No, I can taste it I insist. "Well..." she looks around, "Here. That's all we have," and she handed me a thick blue sterile fabric OR towel. And then three nurses hoisted my now able to feel but unable to move body into a sitting position and held me while I blew. She seemed impressed that I'd actually gotten a bloody nose. "It's the hydralazine," smiles sympathetically. Then they all three assisted me back into position and the nurse resumed scrubbing with the orange stuff in wide circles, then wiping with cold clear stuff in wide circles. I asked if it was okay that I could still feel my tummy? "Yes," from the nether-voice, "We'll make sure you can't feel anything when it's time. Try to be calm. Try to relax so we don't have to put you to sleep." Relax? Was he nuts? They were about to rip my premature baby from my body and then who knew what kind of health problems he would have! Might as well set my head on fire and then tell me not to think about it! My own heartbeat continued to reverberate through my chest, neck and head. Then someone came rushing in, asking "Do we know for sure that this is Down syndrome?" Yes. "How do we know?" I piped up this time saying "Amniocentesis at 16 weeks." "Okay then." And the person rushed back out. And I laid there weeping quietly. Were we doing the right thing delivering him early? Wasn't it better to keep him in since my blood pressure was okay now? Couldn't I just stay in the hospital and keep doing what we're doing until closer to my due date? I was terrified. It was all I could do to not sit up on the OR table and cradle my belly protectively and order every one to just get away from me and my baby.

I kept looking over at the baby warmer which was now flipped on. People were gathering around it. Blue scrubs clad people. And they were gathering around me. A drape was hung in front of me, blocking my view. My arms were strapped and velcroed to arms that swung out from the table. I was aware of the blue masked doctor that was the nether voice injecting fluids from a syringe into an IV attached to me somewhere. Then was distracted by Dr ER in my vision, and I was vaguely aware that I was a little fuzzy suddenly. "Tracy! I haven't seen you since...well I don't remember when!" He was cheerful and smiling behind his mask, so I wiped my teary face against my shoulder and said, "Since you bailed on my McDonald Procedure!" He laughed and said "Well I'm here for this! This is the important thing, right?" As a nurse put a sterile gown on him, took the rip cord, and another nurse assisted him into sterile gloves. Then all was quiet. "Is my babysitter here yet?" I asked and got confused looks. "I'm sorry. My friend. She's also my babysitter. Is she here yet?" and she was finally allowed into the room to stand by my right shoulder.

I could see a few people's shoulders standing very close to me. I still had some sensation in my feet but no where else. "Are you cutting yet?" I asked. "No" says Dr ER. "Yes you are! I can smell burnt bacon." A nurse at my head says, "That's burnt protein, bacon smells good." Dr ER says, "Okay I am opening but I'm not cutting!" "Okay, cautery then." I asked him to tell me when he opened my uterus. "That's right, you're a nurse aren't you?" he asked by way of answering. I said yes, a very terrified nurse. The next thing I heard was, "We've got fluid. Lots of fluid. Wow, lots of fluid!" I asked if it was clear, he said yes and The Other Mommy patted my shoulder. Then I heard the tiniest of little cries. "Head's out" and I heard suctioning sounds and a few more tiny little mews. "Do you know what you're having?" from Dr ER. "A boy" I say. "You're right!" he said and finally I heard newborn crying, wailing, in a high pitched, somewhat weak baby voice. Jack's voice. My baby William. People were suddenly moving away from the table as I heard, "He's peeing on me!" from Dr ER. "There he goes again!"

You know those shows on TV where they hold the baby over the curtain for Mom to see? That didn't happen. They took him right over to the warmer and while en route I saw people once again stand away and heard that he was peeing again! He was surrounded by blue clad bodies and I could only see what I thought might be a very pink leg. And he peed again.


He was crying all along but it didn't sound to me like a very lusty cry. The Other Mommy went to the warmer and came back to tell me he was okay, he was fine, they were holding oxygen in front of him, but he was pink and wiggly and beautiful and that he looked like The Middle.








But why wasn't his cry more lusty? I waited a few beats and asked what his 1 minute Apgar was. 7. Not bad. Not 9, but not 5 either. Or 2. Every time he stopped crying I looked to The Other Mommy who quickly reassured me. She could actually see him but I was still laying down and could not. Oh yeah...I was still undergoing surgery and would not be scootching up to sneak a look at him. His five minute Apgar was 9. Okay. Nine is good. Nine is very good. Nine is great! No one scores a perfect 10 due to acrocyanosis of the newborn, which basically means their hands and feet stay blue. Finally they wrapped him up in a tiny bundle and brought him to me to see, to kiss, to whisper to before they took him off to recovery, where I was assured I would join him very soon.








Once in recovery I got to see my whole Baby for the time it took them to wheel me past his warmer and put my bed in place across from him. He was under a clear plastic hood to flood his air space with supplemental oxygen because he had been struggling for air.




He was pink and wiggly and I could hear him let out an occasional weak sounding little cry. The spinal had been removed and was wearing off. I could feel everything but I still couldn't move. The Other Mommy had gone with William into recovery and she brought my camera and hers over so I could see pictures she'd taken of him. The head of my bed was about level with Jack's warmer, so all I could really see of him was what I'd be able to see with my eyes level with his bed. She went over to take pictures of him several more times, and then brought them to me. Thank goodness for the digital age! She also fed me ice chips for my parched mouth. She is an angel!

A nurse came to start my PCA. She gave me a bolus of Morphine that took my pain level from 10 down to 9 1/2. She handed me the PCA button and I started watching the clock. This was way more pain than I'd had before. I was able to reach The Beloved and tell him that William was born safely and about his size and length, that he was doing pretty well but was getting some supplemental oxygen. He was tearful. I could hear it in his voice, in the sniffles he tried to hide. I described William to him. Told him how small he was. How perfect he was. "Kiss him for me" he said. I promised him that I would. He was going to try to get some sleep and then make the long trip home. As we hung up he said, "Thank you for being alright. Thank you that you're both alright." And then I had to hang up. My pain level was sky rocketing. Every ten minutes I hit that button hoping, hoping, to hear the beep that meant it was delivering a dose of pain medication. The nurse gave me two more boluses in addition to what I got hitting the button, but after 45 minutes all I could do was lay there moaning and listening to William's weak cry and trying to see something more than his feet and tummy and an occasionally waved hand. I could not understand why this cesarean was so much more painful than with The Littles, but I felt like my upper left abdomen was being pulled out of my body and held over fire. I finally told the nurse to call the doctor and get something else. "I want 2 mg of dilaudid and I want it IV!" She rushed out and came back not too much later, thank God above, to put me out of my misery. She got the orders and gave me the new medication. Oh. What. Relief! For the next little while I actually felt like I might live.


I then I finally got to hold him. Here was My Baby. The one I'd worried and fretted over so very much. Safe and sound. In my arms. The Other Mommy put him into my arms like the most fragile little piece of delicate glass that had ever been spun. I remember the most intimate of looks that passed between us as she handed him to me. It was a look that required no words. It was a look that said, "You got to hold him first and that is just so perfectly right, my friend, my sister, my Sometimes Mother!" It seems I didn't get to hold him for very long, not nearly long enough, before they were taking him to the NICU to be checked over and to have his first bath.


When I finally got wheeled to my room I was told that William would arrive in a while, that he was being seen by the neonatologist. I think by that point I was so out of my mind with pain that I was just grateful that he was getting the care he needed, that he was being looked after by a specialist. The Other Mommy stood by me, stroking my forehead and running her fingers through my hair trying to sooth me. Eventually the nurse brought another dose of the blessed pain medicine and I once again had some relief. Of all the ways I'd imagined how Will's birth story would unfold, I had always just known that I'd be beside my newborn, no matter how serious his condition might be, but I never once imagined that I'd be trying to hold myself in a fetal position to ward off such horrid torrents of pain.

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