...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, November 13, 2009

A New Day

With morning came a little difficulty in nursing. Jack latched on fine, but kept coming off and going back to sleep. I'd heard that Ds babies could be sleepy. This seemed to be what I was seeing. The morning nurse came on duty and assessed me and then moved Jack back to his isolette to assess him. She undressed him so she could see his chest movements. And then she called one of the NICU nurses to assess him, because he seemed to have some accessory muscle use and some sternal retractions. The NICU nurse brought an SpO2 monitor and hooked it to Jack's little foot. He wasn't saturating well. He remained nice and pink but he'd started having nasal flaring. The NICU nurse called a respiratory therapist and she put him on "blow-by" oxygen and his saturations improved and he stopped having retractions, but once again, my newborn was surrounded by medical personnel. After a few minutes they took the O2 off and his saturations dropped. They did this a few times with the same results and then phone calls were made and then the decision to take him to the NICU. All I could really do was watch while they wheeled in a giant covered isolette. The nurse handed him to me to kiss before they closed him up naked except for his diaper in the isolette and wheeled him away.

The nurse said that NICU would call me as soon as I could visit him there. She gave me pain meds and recommended that I try to sleep.

I must have cried myself to sleep thinking about all the things that must be going on in my tiny little baby's body that had him suddenly struggling for air. I was terrified in the way one can only be from knowing that my child, my infant, was in trouble and I could do nothing about it. I remember thinking that this was the begining of big troubles. I woke up to the phone by my bed ringing. The voice on the line introduced himself as Dr Somebody or Other and said he was William's cardiologist. His WHAT? My tiny little baby had a cardiologist? He'd done a Doppler color flow and an echocardiogram on Jack's heart. The reason for the distress he explained was that Jack has a small VSD, an opening between the ventricles, and that it was so small it would likely close within a few days. He said he was 'in house' if William had any more problems. If I had any questions I could call him. So. That was the problem. A small VSD. That was music to my ears. I could deal with a small VSD. That would likely close within a few days. That would not require surgery!

When I hung up the phone with the doctor I buzzed the nurse to take me down to NICU. She brought a wheelchair and helped me get loaded into it. Once in the NICU I had to stand at a sink and do a three minute scrub. The NICU secretary set a timer for me. It was a long three minutes. I couldn't wait to see my baby. Once done I was loaded back into the wheelchair and taken down the longest hallway of my life. Jack must be in pretty good shape, because he was farthest down at the end, the secretary explained. She stopped just outside of a diamond shaped room with stars and moons in the floor and embossed in the ceiling tiles.

A nurse was standing at a covered isolette with a pink baby inside. My Baby. My Jack. My William.

The nurse said he was due to eat in 30 minutes, that in 20 minutes I could take him out of the isolette to diaper him and then I could sit in the rocker to feed him. She explained that the cardiologist had ordered that he be bottle fed until the VSD closed. She explained that he shouldn't expend extra energy nursing until his heart was healed. She showed me how to open the little doors so I could touch him. He was once again naked except for a diaper. The nurse had snuggled him into a U-shaped roll of blankets and explained that it would help him feel secure. There was an IV tubing coming from under wrapping on his right hand. I could see the hub sticking out and noticed the IV pump for the first time.

He had a tiny little cannula in his nose, and EKG patches on his tiny chest. An SpO2 probe was wrapped around his tiny foot and glowed red.

There was a minuscule blood pressure cuff on his bitsy little arm. I looked at the monitor. His vital signs were all good, the nurse said. He'd stabilized, she said. While I stood there stroking his hand with my thumb, his fingers tightly wrapped around mine, the nurse explained that his oxygen had been reduced to .5L, so if he did well with his next feeding, he would likely stay off oxygen. She pulled a chair up to his isolette so I could sit by him while holding his hand. His tiny little hand. I asked if he had opened his eyes yet. No, not yet. Not since she'd admitted him to the NICU, and she'd been at his side continually.

When the 20 minutes had passed, the nurse showed me how to raise the lid on the isolette so I could change William's diaper. Then she had me sit in the rocker on the other side while she wrapped him in a blanket and then she lifted him into my arms. She took the oxygen off but his IV was still running. She said he had to eat 35 mls. That was barely an ounce, but the doctor had calculated what he needed to eat. I finally noticed that he was getting TPN. She showed me how to keep him upright to eat. He was quite messy about the whole affair. I'm pretty sure that at least 1/4 of that ounce had ran down his chin. His cute pointy little chin. It took a long time to feed him because he kept falling asleep. When the nurse put him back into the box she said she would try to leave his oxygen off as long as he did well. I took a few more pictures to keep with me until I could have William back.

By the time he'd eaten the required amount, I was done in. The NICU nurse called my nurse and said, "Mom needs pain meds and an escort back." The NICU nurse said she'd burp Jack and put him back into his bed. My nurse arrived and gave me a pain shot. They both helped me into the chair. I was just barely able to stand because I was hurting so badly. The NICU nurse said that if I came back in exactly 3 hours, I could feed him again. I noticed as my nurse wheeled me away that Jack's isolette was decorated at the foot with a bright blue piece of paper with his name on in, thin strips of blue ribbon, and stamps of baby footprints. Sweet!

That simple little act of kindness, that personalizing of his isolette, let me leave him for a while and still know that not only was he was being taken care of, but that he was being cared for.

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