...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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Friday, October 30, 2009

34 Weeks, NST & Dr Skeevy

This will be a long post. As I write this I am closing out my 34th week. And I've had yet another trip to the hopspittle. I went for my NST on Tuesday and it all went very much as usual. I waited. I peed in a cup. I got my BP checked, weight checked, pee checked. No new news. BP was still high. My blood sugar was fine. My weight was holding at 55 pounds. Shudder! Roughly 20 more pounds and I'd be back to my heaviest weight ever. My pee continued to show a very mild protein spill, no sugar spill. Then I went out to wait my turn in the big comfy recliner with the pink and blue straps wrapped around Jack and I.

Finally they call me in and as I waddle down the hall to the chair, I see a sight that sends chills through me. It was Dr SF. When I'd first found out that this pig was one of the doctors who practiced at the PHC, I'd asked specifically that I not be seen by him. I'd said at the time, all those weeks ago, that I'd sooner stick my hand into a running garbage disposal rather than be seen by him. I actually said that. I'd been assured that Dr ER and then later Dr RF would be my only physicians. But he was here this particular day. Dr RF has the day off, so Dr SF was filling in.

Back up to when I was 5-6 weeks pregnant with Hannah. I'd gone to see Dr SF for a one time visit because he could take me that very day. At 11:00 am. And his office didn't open until 11:45 when someone finally showed up to let us all in. His waiting room was filthy, and actually had mismatched office furniture stacked along one wall. The remaining walls were lined with big sagging couches that I'm sure had all been found on the side of the road or by someones garbage cans. Or were rejects from a crack house. The carpet was badly stained but none of the teenage girls with their bellies under their chins and their cell phones to their ears seemed to notice. My friend Bits and I were the only adults! We waited until 12:45 when the gal behind the desk said the good doctor was finally on his way in. Then we waited for another hour. It went down hill from there.

Bits and I were shown into a hot bathroom with two folding chairs and a TV set up on the sink vanity and a VCR sitting precariously on the toilet. The faucet behind the TV was dripping and Bits kindly offered to let me sit closest to the door, "Just in case that thing shorts out and catches fire." Really? Yes, really. We exchanged glances and sat in the chairs, shuffling for space in the tiny room with the gal who was not going to wait for us to either move or sit down to shove a cassette into the VCR. She pressed play and then stomped on both of our feet making her exit without saying a word. What followed was a grainy image of the pig that I have forever renamed Dr Skeevy. The recording was Dr Skeevy's way of introducing himself to new patients. It went on for an hour while this hubric ass described his talents and expertise. Who does this? Who? He even had a portion dedicated to describing in detail how discreetly everything would be handled for those opting to abort. I don't know why we didn't leave right then. It must have been like when you come upon a scene of a horrible accident. You know there's going to be blood and gore, but you look anyway. We kept watching. And yes, I know the word is hubris, but that would require sentence restructuring, so I am making up my own words again. I can. It's my blog! Eventually Bits did have to leave but I promised I'd call her as soon as I got out.

I was shown to a tiny exam room where I was told to undress completely and was given a sheet. Not a gown. A sheet. I asked why I had to disrobe completely and I was told that Dr Skeevy would do a complete exam. I said I'd specifically told the gal who gave me my appointment that I was only here for a one time visit to determine if the baby had a heart beat; there was no need for a full exam. She said, "Your choice" and walked out without pulling the curtain across the doorless entry. I guess this is what you get for $350.00 cash and being in too big a hurry to wait for the doctor your insurance will cover to have an appointment sometime after next summer. Then I waited some more. I woke up to see Dr Skeevy smiling down at me. Make that leering. He was pissy but said that he understood I was just there for a trans-vag ultra sound and not interested in the full exam. And he got right to it. He found Hannah's heart beating. He said there had been a twin and that it had died. He showed me a large bubble with nothing in it. And he said Hannah would die. Her heart rate was in the 70's. Too low. Probably today or tomorrow. Certainly by the end of the week. And he sat there smiling up at me saying that I should schedule a D&C with the gal at the desk. For tomorrow.

I went down to the van and called my beloved Dr S. I hadn't seen him since my pregnancy with The Middle. I told him what Dr Skeevy had said and done. Including suggesting that I schedule an abortion. His first words were, "My dear. I am so sorry you even considered going to Dr F. We have had many, many disagreements about his practices. Come here tomorrow and I will see you." Okay now, I have been an ICU nurse for my entire career. To date I can count on maybe 3 fingers the times that a doctor has even hinted at maligning another doctor. It's a boys club of the highest order. It's just not done. At my appointment with the Beloved Dr S the next day, he also did a trans-vag ultra sound. "Tell me what you see," he said. I described the little bubble with the baby's heart beat and said I'd judge it to be about 150. "161" he said, letting me hear her. "What else do you see?" he pressed. I described a yolk sac and a broken bubble that I thought might be the corpus something or other that is left behind when the ball of cells that will become the baby burrows into the endometrium. "Correct," he said. "Exactly correct. You can come to work for me if you decide to become a tech," he joked. He patted my leg and said that the broken bubble was likely Dr Skeevy's dead twin, either that or he was unable to recognize a yolk sac. He also said that Dr Skeevy's low heart rate of 72 was my own uterine thrill. "Do not go back to see him my dear. Come back to me in four weeks and I will follow you again." My beloved Dr S!

Okay, so fast forward to now. The tech was checking Jack's reactivity and as always said it looked just fine. At the end of 30 minutes, she tore of the strip and took it to the doctor to check. She came back and slipped it into a brown envelope and slid it into the back of my chart, just like always. Then she said the NST was fine, but the doctor wanted to adjust my BP meds. And in walked Dr Skeevy. He sat on a stool and started looking through my chart. Without even looking at me he stuck out his hand and said, "I'm Dr F." I didn't shake his hand. He said my BP was still high and that he wanted to add another agent. Then he asked my age and allergies. "You are too old to have a baby" he said, "This is no good. Lets add another agent. That's a med-i-cine to bring down your blood pressure" he said, finally looking at me. Really? And here I'd confused it with a med-i-ca-tion. Stupid me. So he writes out a script and reviews what meds I'm already taking. Then he gets to the lab section. Reviews those. Notes out loud that none of my slightly abnormal labs have become any more abnormal over the course of my pregnancy. "This is amazing. You are really old and yet you are doing relatively well." He's a charming man. But it's about to get really good! He handed me the script, stood up and turned to walk away, but then he turned back and asked if I'd had prenatal testing. "You know, tests to see if the baby's genes are okay?" Oh, I'd thought it was to check the baby's jeans for proper fit. I felt almost smug when I said "Yes. I had an am-ni-o-cen-te-sis at 16 weeks which shows trisomy 21." I wasn't prepared for what followed next.

This giant incredible filthy no good ass of an excuse for a human being actually slapped his hands to his face, pulling his cheeks down enough to distort his face and said, "Oh. My. God." Damn him to hell, he does not worship my God. "This is no good!" he said, taking the script out of my hand and sitting down. "You need to go over to the hospital right away! You need to be delivered! Your blood pressure is dangerous! You need to be delivered by tonight if not this afternoon!" I took a deep sigh. I said that I was only 34 weeks, my blood pressure and labs had not changed, and asked quite frankly, "Why is this an emergency now?" He said I was "e-clamptic" and that I had to be delivered "to-day." I said that the labs I'd had drawn two days ago didn't indicate pre-eclampsia, much less had I had any seizures, spots, hyper-reflexia, protein spills or headaches to indicate that I was suddenly eclamptic now that he knew my baby has Down syndrome. "How do you know this terminology?" he asks. I tell him I've been an ICU nurse for 15 years and that I've done my fair share of high risk pregnancies. "Well all the same, you could still have a stroke. You are going to the hospital to get that out," pointing at Jack. Bastard. I looked Dr Skeevy in the face, something he was incapable of doing for me. I said I was not going to deliver my baby at 34 weeks, that I was going home to take a nap and then meet my children's buses and spend the evening with them. But the guy wouldn't give up. "Call someone to get your kids. Ask a neighbor or something." This went on for another 15 minutes, while he dictated orders for my admission to the nurse.

I went out to the van to call Dr S. I explained the situation with Dr Skeevy. I explained what I remembered of my labs, that the baby's reactivity on the NST was just fine, That Dr Skeevy had already signed off on it, and that he'd been perfectly content to send me home with a script until he found out the baby has Down syndrome. "I believe you my dear." Then Dr S excused himself and put me on hold. When he came back on the line he said Dr Skeevy had just called him and that he'd said my labs were all severely abnormal and that the NST was grossly non-reactive. "Do not worry my dear. I would believe anything you said before I would believe him that the sky is blue. I have more faith in your knowledge than his. But I want you to go over to the hospital overnight to get your blood pressure better controlled. I disagree that you should deliver this early, but please, my dear, go get your blood pressure a little better controlled. Will you promise me that?" Okay, so I promised that I'd go as soon as I could arrange care for the Kidlets, as The Beloved was working out of town, and he promised me he'd see me at the hospital tonight. Eeesh.

I made a zillion phone calls on the way home and checked into the hopspittle by noon. I had orders in hand for IV solution, lab draws and another 24 hour pee test. That was it. The admitting nurse called Dr Skeevy four times but he never called back to give further orders. I'd had no lunch and it was past dinner time by the time Dr RF was on call, so he gave orders for the night nurse. Dr S arrived just before 8 pm. Good thing too! Dr RF, having listened to what Dr Skeevy said, ordered a Magnesium Sulfate drip and the nurse was explaining all the side effects I was likely to have. Dr S said not to start the drip. The nurse was a little peeved now that she had conflicting orders. "Well she's set to deliver either tonight or tomorrow, are you planning to do an amnio to see if the lungs are good?" Dr S said that he'd spoken to Dr RF, and that he'd been given inaccurate information. He said that he'd reviewed my current labs and that I would not be delivering any time soon, that I was just here for my blood pressure. He wrote orders for several other agents to try before starting a Mag drip. He also said that she should remove the fetal monitor and just check every 4 hours. He took my hand and said that he was deeply sorry for what I'd been put through and assured me that my labs had not changed, they were just as I'd reported to him, and that Jack would be staying put!

I went home the next day, once the 24 hour pee test was completed, with a script for Labetolol 300 mg three times daily. It was increased the next day to four times daily. And Dr RF said that when I return on Tuesday, we will look at the dates and decide when to schedule my delivery!

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