...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, January 29, 2010

Hated It!

I thought I was on to something when The Ducky took to his first three baths like, well - like a duck to water. His first big tub bath was an extreme hit! He kicked and wiggled like a piglet in mud. Every bath after that? Not so much. I do have other pictures where he's really howling and turning all red in the face. His mouth is open so wide you can see his tonsils. But...My Girlie took those pictures with an utter disregard for anatomical discretionary selection. Despite my best efforts, I cannot make them decent for viewing. So here's this one.

Tuesday, January 26, 2010

10 1/2 Weeks old




Just cuz he's so danged cute!

Sunday, January 24, 2010

Cooing!

William 10 1/2 weeks old and he is definitely cooing once in a while. I bought a play mat for tummy time and he likes it! I also bought a bright mirror for him with a bright blue trim and black and white strips on it. It has a lady bug with crunchy cellophane wings and a black and white spinner ball, and a little bee. He likes that too! I bought a giant vinyl ball for his core strength but I have not put him on it yet. My breast milk supply is quite diminished. Will's been taking only two ounces from a bottle and I struggle to get the other 1-2 ounces in him.

Thursday, January 21, 2010

Second Visit to the Neonatologist

Sweet William is 10 weeks old! We visited the neonatologist again today, Dr M. I am not very fond of him. The first time he tried to fold Willie in half to show me "How floppy these babies are," meaning babies with Down syndrome, pretty much ruined any like I had for him. We got the karyotype results. It's just plain old trisomy 21, but I guess I already knew that from the report that The Beloved Dr S gave me from the amniocentesis. My little dumpling weighs 8 pounds and 4 ounces. He is 20 ½ inches long, and his head is 37 ¼ cm. I just wish his doctor treated him more like a baby than a specimen in a petri dish.

Wednesday, January 20, 2010

We Did It!

We had success at the breast at last! I tried him this morning after the kids were off to school and he was able to latch right on! I nursed him for about 30 minutes before I switched to a bottle. He comes off pretty often and after only a few swallows he falls asleep. I hadn't pumped yet, so it was easy for him to suck and get enough to swallow! I'm so thrilled that we were finally able to nurse! If it never happens again, at least we had this one time!

Willie Boy likes the mobile above his crib. It plays “Lullaby and Goodnight” and he watches it until it stops and then keeps looking at it. He seems to follow Eeyore the most. He's also quite fond of the tall brown oatmeal bear and when he gets bored with the mobile, he stares at the bear. I've been leaving him in his crib for short periods of time each day, for about 15 minutes at a time. I'm sure he needs to get away from the noise and hustle and bustle of the household! He seems to like the wall hanging above his crib, but like with the bear, his view is upside down. I've placed him in the crib so that he can look at the hanging upright, but then he stops looking! He seems to prefer it upside down!

Tuesday, January 12, 2010

2 Months Old

Yes there is a difference between 8 weeks and two months. Just ask any first time mom! Or a mom who has given birth to a baby 8 weeks early. So he is today, two months old! I was worried a few nights ago that William had a growth on his forehead. There seemed to be a bit of a bump...but upon closer inspection, it was also on the other side too so I forced myself to stop worrying about it. Then I noticed it again the next night when William was in the exact same place in the room. So...was it nothing or was it a shadow being created by some horrible growth that would take over his beautiful little face? Well tonight I solved the mystery! We were in my bed and I was holding him and playing with him before I settled him in for the night...and low and behold, that shadow is really tiny little eyebrows! It's on both sides and I could see them clearly even without my glasses! His eyebrows are filling in from the outsides of his forehead. He has eyebrows!

The babycenter.com postings say that William should be cooing by now. I'm trying not to be upset that he isn't. He does make a single “aaaah” sound sometimes, but I can't see that it's in response to anything. I just have to remember that he was early, and he does have Down syndrome, so he might do it later.

Friday, January 8, 2010

Where's the Baby?

This is how William's night starts each night. Safe. Sound. Secure.

And this is what I find every morning. I can barely see the top of his head in the reflection of the mirror.

And this is about all I can see of him if I stand on one leg and lean way over! This version of peek-a-boo does not do a mother's heart good. A solution is in store! Stay tuned for a new use for the doughnut!

Thursday, January 7, 2010

8 Weeks Old

William has settled into a routine pretty well. He eats “dinner” sometime after 10:30 pm and then burps and gets a diaper change. After that he's pretty much down for the night. He sleeps at least eight hours. If he eats before ten pm I can be sure he'll eat again before bedtime. In the morning he varies. Sometimes he wakes up starving and crying and sometimes he just fusses. Either way, he is always very happy to get his first bottle of the day! I'm still pumping. He gets breast milk for the most part. I think he may have gotten one formula bottle about ten days ago, but it's not often enough that I even keep track. I get anxious when there aren't several bottles waiting in the fridge, but really I must be doing okay with production or he'd be getting formula more often. He's taking 4 ounces every three to four hours. I don't know if it's wise, but if I cannot get him to finish the bottle, I save it for later. Even if it's only a half ounce.

Once he's had his morning bottle I change his didee. He's often not very wet first thing in the morning. After he's eaten and changed I get him comfy on the couch and he goes back to sleep for a good nap before his next bottle. He's not a morning baby! Later in the day, after his second and third bottles, then he's awake for a while. He kicks and waves his arms and looks around. I placed a checkerboard in front of him this evening and he really liked it! He immediately tried to turn over onto his side while looking at it. While he was on his blanket on the floor with some toys he seemed to be batting at them...so I moved them to his other side and he started batting at them there!

One of my favorite things to do with William is to kiss him about a million times while he's on my shoulder. I love to kiss his left temple. Besides, it's closest to my lips while he's being burped. I kiss his open mouth all the time! I might be imagining it, but it seems to me that when I'm holding him in front of me, kissing him, he aims his face at my lips. Is he trying to suck or is he trying to get another kiss? I don't know really, but it's nice to think that he's trying to get another kiss. Sometimes I make a sucking noise into his mouth and sometimes I do raspberries into his open lips. He is a sweet baby. It kills me when he cries really hard from gas pain. And I still have to sleep with my back to him most times to keep from staying awake all night staring at him. I simply adore snuggling with him for a nap!

William has gotten decidedly more assertive! I'd initially worried that I'd miss some need he had because he's such a calm baby. I really let this thought plague me thinking that he might be unhappy, or in pain, or simply just desire something and I wouldn't know. Not to worry though! He cries when he has gas pain, and now he actually cries when he's poopy. Neither of The Littles would have cared if I'd dipped them in poopy, but William lets me know he doesn't like it! He's always gotten upset since his first week when he has spit up through his nose – he still hates that!

For the most part, I can only see Jack's Down syndrome when he opens his eyes. While he is sleeping he looks just like any other baby. And now and then I can see what The Girlie means when she says, "Mom. William looks just like you!"

Nekid Baby

Nekid boy getting ready for a bath!

Wednesday, January 6, 2010

My Boy

Jack is my only baby who has maintained any interest in his thumb. I love it that he has his thumb. It's just so normal. And it's such a baby thing to do, it melts my heart to see his thumb in his mouth! He really only takes his binky when he wants to settle in for a snuggle with me, and when he does that, his thumb is busy holding onto me!

Tuesday, January 5, 2010

Sunday, January 3, 2010

Movies!

My Puppy smiled at me today! It was very brief, but it seemed genuine! The Littles and I took our Pup to his first real movie! We went to see Alvin and the Chipmunks, The Squeaquel. He sat asleep in his car seat for the first half of the movie. When he started squeaking I got him out and held him over my shoulder. He kept doing giant head bobs trying to turn around, so I sat him on my lap and he was happy as could be! I do believe my Little Chipmunk was watching the movie...he was kicking to beat the band and waving his little arms all over the place!