Props and Props... Ohhhhhh My...

The basket I got to put Nathan in ... havn't gotten it done yet...

Some fune yarn I found.....

My Mission ....

My Mission.... if I choose to accept it ... for this weekend... is create some banners for my three bloggers... and create my buisness logo ... and work on something for one of my mom's friends... seems this photography buisness will be taking off after all :) WHOOHOOO...

Gotta love me being a woman of many talents!!

My son.... the STUD...

He's 11 going on too dang old for my own good....

He has my eyes... my hair... and my Irish temper and stubborness.... Lord help him!

My Purse.... And a Baby....

My girlfriend Di requested to see my purse... lol....

So I figured.... I carry the diaper bag around with me all the time too ------ sooooo... lol...

So now that is done with....


Several things happened today.... Dennis ended up in the ER today... he got a migraine last night and he couldn't kick it... he still went to work this morning but ended up calling me and asking me to come get him and take him in... so I did... 3 drugs and several hours later.... he was FINALLY better :)


But while there... I got a text message from my ex boyfriend...... His newest addition arrived a month early.... all 7lbs 14oz and 19 inches of him.... I started laughing because he's 10oz bigger then Nathan and 3 months younger... His name is different... but it's cute. Anyway he's a cutie...
My arse got soppin wet tonight.... was in Walmart and it poured out... I shut the windows... and my moon roof automatically shuts when you turn off the van.... well... tonight it didn't automatically shut.... tonight..... it stayed WIDE open... and I sat my butt down in the van and ..... it wasn't a good feeling...


I'm all excited :) I wanna get this buisness going .... I'm going to work on my buisness cards and such tomorrow... whooohooooo ...


Anyway - time to go try and get some rest!!

Backgrounds... Mats... and more Backgrounds...

OMGosh.... I picked up a few "backgrounds" for my photography buisness today.... and then I went back, and got MORE.... here is a pic of the ones that I got this morning (that white one on top is semi-sheer)...

And then.......... I got all of these............ OH MY!!!! The Bottom two are more for mats (to sit on)...

Genetic Disorders

Would anyone like one? I have a few that may possible running through my family right now...

Is this a doctors answer to EVERYTHING?!?!?!!?

My son has a rare genetic disorder - we knew this while I was pregnant with him... It's called Mosaic Trisomy 16.... it's enough to give a parent nightmares for a lifetime... seriously!! To be there, 20 weeks pregnant, that glorious half way point...to be told "your child will die" ...

:::shakes head and pops eyes out of head::: Excuse me... my eyes fell out...

plops them back in....

So ... I hemorrhage after Natahn is born and SUDDENLY I *may* have a genetic disorder called Noonan's Syndrome ...

Calahan has had bleeding issues from birth and I just now *TODAY* after fighting for YEARS to find out what was wrong with him, after having his Leukemia scare at 2 1/2 .... I just wanted to know WHAT was going on so I could help him... so... today I find out that he's HAD a diagnosis for who knows how long.... called.... idiopathic thrombocytopenia purpura (ITP for short).... which (researching it a little) fits him well, heck it fits me too... but they also want to check him for "Fragile X Syndrome" ...

And then there is poor Nathan who shows so many of the characteristics that we saw with Noah and some we expected to see with Noah but didn't... and yet, he comes back genetically perfect - AWESOME... what do they say today? "When he gets bigger we want to run another test on him to check the arms of the choromosomes to make sure THEY are alright" ... fine fine fine... I mean if there IS something wrong with him, I want to know, I want him to know...

So they are going to run this Noonan's check on me and it will take UP TO 5 weeks to come back ... once that comes back, depending on how it comes back... then they will start the testing on Calahan (maybe adding a Noonan's check to him also if I do have it) ...

My head is spinning - I'm frustrated....... I want to be reading Harry Potter...

But I still have to write my ex a letter....... OYE!!!

Harry Potter

I love Harry Potter.... yes, yet another adult who just loves the books & movies. I am currently reading the last book and part of me doesn't want to ..... it is the LAST book........ I don't want it to end of course. I'm worse then a kid there.... ::sigh::

Regardless... I just finished chapter 6. I have my thoughts on other blogs that those who choose NOT to read them can skip over that entry.... incase they want to read the book and are slower then me at reading it (which is just crazy to say, because it has only been out 4 days and pretty much everyone I know has FINISHED it..) ... but once I finish it (I say I'll be done by tomorrow night, Dennis thought it would take me a week... lol.. he doesn't understand that once I get some cleaning done and can sit down and do nothing but read it - that's what I'll be doing - ALL NIGHT... can't sleep.. LOL... I got up at 4:30 this morning and read chapters 4, & 5... and couldn't go back to sleep!! Yeah I've been up since 4:30 this morning...

So ... I have cleaned off my kitchen table... I hate when it gets lost, but it has been, dare I say, lost for awhile.... though it has now returned. I also moved stuff around in my kitchen and scrubed the floor... wow... a clean floor!! Now all I have to do is put some dishes away.... clean off the stove and tell Calahan to finish the dishes in the sink so I can get the last load in there. Then I can finish cleaning it... wash down the counter and stove top and all that...

The kitchen is that room that I just HATE to clean....

So once I do that real quick, then I'm gonna go pick up the living room and vacuum it so that I feel okay putting Nater on the floor to play for a little while ....

Tomorrow the boys and I have to all go in for a DR appointment... I am not looking forward to it.

Wow... Time to get some stuff done I suppose....

New Camera & PhotoBlog

I have gotten and am using.... getting use to.... my AWESOME new camera... I had a lot of guilt about getting it, but Dennis kept telling me that I deserved it, the way I take pictures, and what I want to do ... he said it would be used everyday and to him that it is worth it, and he says, the fact is, I have not gotten anything for me in a long time.

Still going through this guilt... or buyers remorse I suppose... a friend of mine said.. "how many times have you given up something you wanted or needed to get something for someone else?" I said "all the time" .. she said "then accept the fact that Dennis is right, you deserve this."

I am no longer using my Kodak EasyShare... and am now using my Canon PhowerShot S3 IS

Yes, I see his nails need to be clipped! LOL.... But isn't that awesome detail?? And I was about 3 inches from his hand when I took that picture

Baby Bubbles.....
So I have been working on my photoblog today. (Link in the left menu) ... so far I got some of my photography from trips put up late last month, and the last couple days I've been working on getting some of my favorite pictures up of the boys... and then I'm going to work on getting some photography sessions up that I did with my Kodak... soon I'll start doing some for friends, to get some practice... for a small fee.

I'm going to start a buisness for the "lower income" type family who doesn't have $100+ to plop down for only a few actual pictures. I am going to give them a CD of picture, do touch up and cropping if needed... and a copy right release so that they can print off any pictures that they want and as many as they want. For what I charge, it'll include the my time & use of my camera and photography skills... and along with all of that blah blah stuff... the CD. I was thinking $25 for a 1/2 hour session... $50 for an hour... etc. These are just thoughts so far anyway...

The name of my "company" ...

Moon N Star Memories

A couple of my friends are doing this, and although I have wanted to do this for a long time, I never had a good enough camera and they really gave me the umph to stand up and say this is what I want to do with my life... ya know? SO I really have to thank both Di & Mandy :) They are both awesome photographers themselves!! Acutally, most my friends are... Mel & Kelly and a lot of other people too :)

First thing I see in the morning...

This is the face I woke up to this morning... how awesome is that? I mean, he makes my day, everyday...

This morning was hard, I woke up tired and nauseated ... (oh boy!!)... not to mention I'm peein every 2 hours - literally!! (Nate is eatting every 2 hours and I'm peein on his schedule - how sad is that?) .... So my mind is going .... hummmmm ... but it's too soon to tell anything either way. Although I did buy a few dollar store tests the other day and I threw them at Dennis, and I said... "My chart looks TOO good, so I probably won't need them" ... I don't really trust them either, but they are better then nothing. Everyone is asking me "are you pregnant yet?" ha ha... I'm okay either way, it's all good. It'll happen, when and if, it is meant to. Right now..... Nathan is what I wake up to every morning... he is my prince ... heehee... I mean - who couldn't love that face? He is finally getting up to typical "newborn" weight and size... WHOOHOOOO

5 Things About.... MEmeME

Mandy "Tagged" me... so now I have to do it.... and yes, she is holding a squirt gun to my head... and she has Matty ya know --- ya NEVER know what she put in that water pistol! Teeehheee... just kidding...

FIVE THINGS TO DO BEFORE I DIE:
* Go to Ireland
* Go to Italy
* Take the boys to Disney
* Get Published
* Stablize my family (house, money, complete it with kids, etc)

FIVE THINGS I CAN DO:
* Write a poem in 15 minutes
* Write a book
* Take Pretty Pictures
* Scrapbook
* Collect blinkies... (and now avatars) .. cuz I am the QUEEN...

FIVE THINGS I CANNOT DO: (yet)
* Keep my house clean (grrrrr)
* Keep up on all my blogs (lol)
* Be in 3 places at once... (I'm not an octopus boys!!)
* Understand my hubby's ex... (and why she uses their daughter to punish him)
* Understand my ex

FIVE THINGS THAT MAKE A MAN ATTRACTIVE TO ME:
* Tall .. Dark... and Handsome...
* Quick Witted
* Able to make me laugh
* Makes my heart soar walking into a room
* Being Sensitive

FIVE CELEBRITY CRUSHES: (Hotties)
* Heath Ledger
* Paul Walker
* Vin Diesel
* David Duchovny
* Mark Ruffalo

FIVE PEOPLE I WOULD LIKE TO DO THIS IF THEY WANT:
* Kelly
* Dianna (although I'm sure one of the girls already said that)
* Nancy
* And any two from the Hotties List (bahahahaa)

The MEN are Making Cookies...

The MEN are in the kitchen .. making cookies....

..................... yes you actually read that right!! The MEN... The big one, the older little one, and the middle little one... lol... while the little one is sleeping in his swing and I'm taking a much needed time out to myself....

and I get cookies in the end! What is better then that?

Heehee...

Nothing much going on in our house right now, we're broker then broke right now.

It has been a long week with Nathan, and although I love every moment of it, I am so tired. And that tired may very well be partially because ... yeah, well I'll take a test in the morning, and maybe we'll see what it's because.

Regardless, it was a nice weekend at home.

Got some beautiful pictures of Nathan ... he is growing, which is a great thing - but as every parent knows, is hard to watch and some days it just catches up to you. As much as you love watching them grow, and evolve ... it is sad at the same time, because you know that... them being 11 and starting puberty is just around the corner!! (oye vey!)

I can't believe he is 12 weeks old now... still hasn't hit newborn weight but... still, he's 12 weeks...

So I am worried about Dennis.... he has fallen down I don't know how many times this weekend, his legs are weak, his head is hurting, and all those symptoms that just refuse to go away. I am worried and the more worried I am... the more worried I become.. I just don't know what to think anymore - it is hard to watch him be sick like that. But he pushes on and past it and through it and continues to work... but I know it's hard for him. He likes to pretend it's not there...

Shhhhhhhh .... I'm Stinkin....

That is what my 5 year old said this morning after trying for about 5 minutes to wake Daddy Dennis up... lol... "Shhhhhh .. I'm Stinkin... "... he meant he was thinking of course, but it was funny... it made Dennis laugh and give away that he was no longer asleep.

Dennis and I have been house hunting, our first house... not only together as a couple, but seperate too.

We need a house with at LEAST 4 bedrooms (hoping more, or at least room to make more?) ... more then one bathroom (at least a half bathroom extra) ... it has to have a garage... a big back yard isn't a must but would definitely be a plus. It at least has to be big enough to fit the huge swing set that I designed for Noah's physical therapy. On top of all that - I very much want a wood burning fire place.

Most of all, I have to be able to walk into a house, with Dennis ... and think... I can be there forever with him. That it can hold all 5 of the kids now... and in the future, be someplace for all the kids to bring their familes for Christmas and holidays. I want a big family home, for our big family. It is my dream... a house like I grew up in... with lots of room... that feels like home.

There have been a ton of houses that have been nice, that look okay ... for our budget... and only a few gave us that punch of "home" that I discribed above. But one has really pop'd out for us, and screamed it.

There are only a few things about the house though, that are negitives... one being it's on a horribly busy street, and has a very short narrow driveway - not to mention it would be hard getting in and out of ... and the other being that it has a small kitchen and no real dining room. Otherwise, it has more then enough space for all the kids, and a growing family - I could see us there for a life time....

We are still looking though. We'll have our budget figured out... and going to talk to a morgage company here soon. As soon as Dennis gets his Comp & Pen decision handed down. So we know where we will be, exactly, financially.

Anyway.... we are having a HUGE party this coming weekend, a week from today, and I have GOT to get started cleaning for it. ::sigh::

It's all about Nathan...

I was so touched tonight (last night) ... by a YOUTUBE video called 99 Balloons. It is a story about a little boy named Eliot... one who thrived despite his Trisomy 18 diagnosis... and gave his parents 99 days of pure joy.

I was sitting here, on my laptop crying... when Noah came up to me... just on my nerves tonight because he - by 10 pm - had not gotten his PJs on... saying he "can't" ... his leg hurts ... I really discourage Noah from saying he "can't" do anything...

Because he can... he is here, he is alive, he can do ANYTHING he puts his little heart to...

Although, he is way too use to having me wait on him hand and foot ... although I really don't, I do in ways...

The second that Noah gets an unusual cough or cold, or fever, I'm starting to flip out... trying not to panic... "I want to sleep upstairs" he says... "Okay" I quickly give in because, I want to, need to, keep an eye on him - must have him with in ear shot... the second I ignore it, he's vomiting all over his bed and crying, yelling for his Mommy...

I live with constant fear that I bury... and usually, I keep it buried very deep... so deep that I forget about it... until that unusual symptom pops up, and my heart and mind start to race...

Well, tonight, I watched Eliot's video several times... I listened to his Dad talk to him, I was lucky enough to catch a glimpse of the miracle he is... to watch him grow and thrive ...

It touched my soul so deep, that it hurt...

Because I understand all too well...

And Noah was beside me... watching the "baby" on the computer screen... saying "That looks like Nathan" ... because like Eliot, Nathan had a feeding tube for what seemed like forever, but really wasn't... I kept telling Noah "that baby is like you" but he doesn't understand... he's 5 years old, he can't understand yet how special he is... all he knows is he gets a lot of attention... and too much of it from doctors lately...

It is awful when your child, at the age of 5 or younger, uses terms like IV and asking if they are going to take blood from him, insisting he has none left... and wanting to know why the DRs always hurt him...

But instead of Noah associating it with himself, he associates it with his little brother... and at the end, when the celebration of Eliot's 99 days comes... and Noah realizes that he was no longer alive.. but an angel... he says, "Nathan is okay, right?" ...

... and I just cry more...

I have 2 special needs children, 3 if you count Calahan's ADHD... lol.. but I have been honored with 2 true miracles...

I wondered what I would write about on here... what I would say, what my first post would be about.... and tonight, it came to me... do what I always do, and share Noah's story...

Touch some souls... honor who Noah is... share what a miracle can be...

As he sat next to me, watching another miracle on the computer screen... I looked at my son, grateful, and yet I mourned a child I never met, but was so happy that I learned of his story..

Against the Odds...

Against the Odds

Pregnancy is supposed to be filled with joys and happiness. You are supposed to go buy cute little baby things. Your friends and family are supposed to throw you a baby shower where you are given useful, and charming things. You are supposed to complain about all those horrible pregnancy symptoms, marvel in first kicks, and delight in the sight of your child on ultrasound. It's a time for plans and excitement.

Not for terror and confusion.

It's not supposed to be a time of unknowns, and such fear that you can't bear to create a beautiful nursery for your baby-to-be. Where you wander around the baby departments at your local stores, pick up little things in pure want, and feel your heart sink as you place it back. Having a million questions that can't be answered by anyone, including the best doctors, and simply not knowing what will be in store for your precious baby. Being too scared to complain, because you are afraid that God will take your baby away. No one can ease your fears, they only seem to add to it, with more questions and new worries.

Welcome to the world of a rare genetic disorder called Mosaic Trisomy 16, and many others like it. Countless families have stepped into these shoes, and yet there is still only as much known about these disorder, and specifically MT16 as there was ten years ago.

What is Mosaic Trisomy 16? A Trisomy is when there is three of the same chromosome, instead of two, in each cell.. Mosaic means that the extra chromosome is not in all of the cells, but only in a select number, or pieces. 16 is the chromosome number affected.
This is an extremely rare genetic disorder. If a child had Trisomy 16, meaning all cells were affected, they would die in utero, probably before the first trimester is over. It is believed to be one of the most common reason's why some babies are miscarried. There are also several other Trisomy disorders not only affecting the 16th chromosome group, but many of the other 23 groups of chromosomes. Some of the more common ones have names, Trisomy 21 is Down's Syndrome, and probably the most common Trisomy there is. Trisomy 18 is Edward's Syndrome, and Trisomy 13 is Patau Syndrome. It is commonly believed that any child with a Trisomy will have no quality of life, but that is simply not the case. A lot of children who survive pregnancy, birth, and infancy with a Trisomy have problems, but not all have the worst-case scenario the doctors and genetic teams would like for you to believe. Some of these children prove those disbelievers completely wrong, and you would never know there was a thing wrong with them.

In the instance of Mosaic Trisomy 16, or as those who deal with it on a daily basis call it, MT16, there are no known absolute "this is how your child will be" cases. Each child born with MT16 is different and has varying medical problems and conditions. Some of the more common things are; Intrauterine Growth Retardation (IUGR), Prematurity, Two-Vessel Umbilical cord (they usually have 3 vessels), Congenital Heart Defects, and a lot of the boys have needed Hypospadious Corrections. The other problems are too far and wide a list to share. Each case, as each child, are different. As is each story.

Our story started in 2001. Five years of secondary infertility and several miscarriages after our first child my doctor offered the possible solution of a common fertility drug. Clomid is commonly used to help with ovulation difficulties. On our third month of this medication, and when we least expected it, I finally conceived, on my birthday. Only a few days later I went into the office for a routine blood test, knowing it would be like all the rest, a big fat negative. Instead, I was surprised and shocked into tears with a positive result. Completely disbelieving, I took a home pregnancy test the following Monday, and was still shocked and amazed that it had too, come back positive. We had an early ultrasound done the following week, and saw nothing. I was worried there, a little, but somehow I knew, this time was different. At least that's what I wanted to believe.

On July 26th, we went in for our second ultrasound. Still only a few weeks along, we were looking for that baby, and the relief of seeing a heartbeat. When the ultrasound tech began, we saw a little line and a little beating bubble connected to it. That was our baby, and the heartbeat. We were given the gift of actually hearing the baby's heartbeat through the ultrasound machine. The heart rate was 107. Not many people can say that they heard their baby's heartbeat at 6 weeks gestation! It was a gift, a miracle, and I knew right then and there, if nothing else, this baby was a fighter!! Our due date was March 17th 2002, St. Patrick's Day.

When we had our 3rd ultrasound the following month, we were blessed by hearing the baby's heartbeat again. The little heart was beating at a rate of 180! We were so excited, this time we could make out a little head, body, arms and legs! Then the ultrasound tech made a comment about how the due date based on measurements was March 22nd. I know five days isn't much, but this struck me as odd. I asked my OB about it, and he just said not to worry about it. I tried to brush it off, but it seemed to stick in the back of my mind.

In September I wasn't feeling well and had our first official OB appointment. The baby's heartbeat was detected with the Doppler, and was beating at a rate of 158. Everything seemed fine and we were past that point where I was finally able to really get excited. We went ahead and scheduled the Alpha Fetal Protein (AFP, Triple Screen) test for the following week. I had one done with our oldest child and expected nothing but a normal result with this one too.

In October I began feeling movement. This was one of the aspects of pregnancy I loved! On the 9th we went in for my routine OB visit. We found out the AFP had come back abnormal, giving off possibilities of both Downs Syndrome and Spina Bifida. Between my Doctor and my husband, they talked me into getting an amino. So on the 19th I went in, and as terrified as I was, it was better then I had expected. I still never wanted to do it again, and was a bit traumatized due to my own feelings on needles. The results came back on October 30th and we went into the office to discuss them. My mom, husband, our oldest son, and I were in a small little exam room when the doctor came in. He told us, "It's not Downs or Spina Bifida. The baby has a rare genetic disorder called Mosaic Trisomy 16." Everything from then on fell on half deaf ears, up until he said, "Oh and by the way, it's a boy!" All I could think was, it's a boy. Our new little boy. His name had been picked out for a while, he would be named Noah Alexander. It seemed like a nice strong name, and in this case, this baby needed every ounce of help he could get!

A genetics appointment was made quickly in Marshfield, about two hours from home. When we got home after making the appointment, first thing I did was jump on the internet and try to look up any information on Mosaic Trisomy 16. We couldn't find anything, until one thing popped up, a site called Disorders of Chromosome 16, or better known as DOC16. A woman, named Karen, who a little over 6 years before had been in my shoes, with her daughter Shayna, contacted me. She's the founder of the organization and the whole goal was to make sure that other families had information to go on, other then the worst-case scenarios given by the Doctors. She became an angel on earth to me, because she provided me with as much information as she could to help us learn more about MT16. I read all the stories on the website, I wanted all the info, good or bad. I wanted to be prepared, and most importantly, I wanted our 5 year old son Calahan to be prepared. We learned that no matter when his birth occurred (early or full term) he would be tiny, that was a very big commonality between all the cases. We found out he would probably have some sort of heart issues, and possibly some umbilical cord problems but other then that, the list was long and wide of possible complications to both pregnancy and baby. It was overwhelming and scary. But I managed to hold onto all the good in the stories too. These babies were making it, past pregnancy, past infancy, into childhood. They were smart, they were reaching their milestones, and they were beautiful.

We went to Marshfield a few short days after the diagnosis was revealed. I was close to 21 weeks, over half way through the pregnancy, and only a few weeks away from a "viable" pregnancy if he were to be born then. First thing we ended up doing was getting a Level II ultrasound, they pushed and poked and let me tell you, that was the most painful ultrasound of my life. I got a few pictures out of the deal. Then we went down to the genetics department after the 2 hour poking session and was escorted to a conference room. They started out by telling us how this happens. While the egg is splitting two of the same chromosome goes into one and two go into another but in this case, three go into one egg and one goes into the other the egg with one cell dies off, but the one with three continues to split and multiply. It wasn't anything my husband and I could have prevented, or caused, it was just a fluke of nature.

They went on, telling me how he would have no quality of life, would be mentally and physically delayed, would probably die in-utero or shortly after birth every possibly bad outcome was given to us, but not a single positive thing. Then he said he had to give us the option to "interrupt the pregnancy." It took me a moment. I'd never heard it phrased like that before. "Interrupt the Pregnancy." I was half way through how could that even be an option. It made me sick. This was my child and this person was sitting there, across the table, giving me the option to terminate the life that was inside me. The life I had fought over five long years for? This miracle that my womb held? MY MIRACLE? He had the audacity to actually suggest it, especially after giving us every bad case scenario there was. "That is not a possibility," I said after finally getting over the shock that he just suggested I kill my baby because his health wasn't perfect. He then turned to my husband, and shocked me even more, by asking him how he felt about it. "I feel the same way she does," he told him. "The only way we'd do anything of that sort," he continued, "is if Noah could have better chances outside then inside."

He finally asked if we had any questions, and I asked him how big we should expect Noah to be. He told us that he would have low birth weight, even if he went full-term he would only be 4 to 6 pounds at birth, depending on how well he grew inside. As things were going, he was going to be small, and I was thinking he'd be 4lbs at birth, that was the number I had in my head since finding out the news. Our specific conditions inside had some problems. The placenta was small, the fluid around him was low, and Noah was small for gestation. Other then that, they didn't find anything wrong with his heart, or umbilical cord, but would give us no guarantees that there wouldn't be any present at birth. He told me that there would be physical and mental delays. When I said "That's not necessarily true," as I knew from the information I had read off the website, he stressed the point that there would be. Making me feel that he would not be convinced otherwise, it would happen. I felt as if I left there, or went in there for that matter, knowing more then they did.

In November, just a few days after my routine doctors appointment, we had a scare. I lived in denial for four days. I had been feeling Noah move, and then all of a sudden, for 4 days I didn't feel Noah move at all. The first day I noticed but brushed it off. The second day I tried not to notice. The third day I was in denial and prayed he was moving around while I was sleeping. The fourth day I was petrified, but too must so to make the call. Though by the fifth day, I prayed and prayed and then called the doctor. They told me to come in immediately, and I did. The second they put the little microphone to my belly and we heard his heartbeat, found out all was fine, the little stinker decided to become a wiggle worm and didn't stop moving all day. He had several days to make up for you know. He managed to give his mother a heart attack though.

Just a few short days later, on November 17th, the contractions started, and would continue through the rest of the pregnancy, and with-in a month it would start being very noticeable, to the point where the contractions would hurt.

December 7th I had my 6th ultrasound. His heartbeat was 167, the determined that the placenta was smaller then what it should be, the fluid was low, and Noah had asymmetrical IUGR meaning that his brain was getting the most nutrients, then going to his organs, and then to his extremities. He weighed, approximately, 15 oz. Now to put this into perspective, a baby at 26 weeks gestation, should be an estimated weight of 2 lbs.

January is when things calmed down, at first, and then the tiny little holes in that dam, broke. My blood pressure increased, to the danger point. I went in on January 28th for a Non-stress test, where they measure contractions, movement, and heartbeat. During this NST, they lost Noah's heartbeat, which wasn't unusual, but this time, it was a very obvious heart deceleration, and not just the little monkey moving around too much. This was a sign that the conditions on the inside, were starting to become unhealthy. On January 29th,, I went in for another NST, and right away my blood pressure was so high, and they detected protein levels in my urine, and that right there, put me in full diagnosis of a pregnancy complication called Pre-eclampsia, which I had also experienced with my first pregnancy. Not only that, but during the actually NST Noah had several heart decelerations. Before they even let me leave from the office, they gave me the first steroid shot to help mature Noah's lungs, unknowing if he would have to be delivered that very day, or not. I had instructions to go straight to the hospital, no stops anywhere, only there and that was it.

I got there, and once I was admitted and hooked up to every machine they could possibly think of, I was barely allowed to get up to use the bathroom. I was teased with food, and had it taken away because they weren't sure if they would have to perform an emergency c-section. Here I was, 33 weeks pregnant, scared to death, and the end of this pregnancy was looming above us. They gave me 2 other steroid shots to help mature Noah's lungs. Doing an amnio on January 31st, to check his lung maturity. Noah on the other hand, thought the needle was a toy and tried to play with it to which my doctor said "Bad Baby" and the fluid came out a pale yellow, meaning biliruben was in the fluid. My pre-eclampsia was getting worse, and Noah's heart decelerations were getting worse every sign said, take him out now. The following morning, on February 1st, 2002, my doctor came into my hospital room and told me he was no longer giving me a choice about going to the level three NICU hospital two hours away, I was going, but they wouldn't take the baby until the following day.

I traveled by ambulance to Marshfield, Wisconsin, to St. Joseph Hospital. Admitted and put into a room where I was promptly told I could have nothing to eat or drink, would be getting more blood work done and another ultrasound, my 10th. Then they would determine if they would take Noah now, or later. After doing so, the team came in and told us, they were taking him now. He had to come out.

They prepared me quickly shaved me, put the horrible catheter in. By about 3:15pm I was in the operating room (I had gotten there about noon!) They gave me a spinal. Things went quickly from there... I was trying so hard not to cry. Trying not to think about Noah, but what else is there to think about. The ONLY thing I had hoped for, was to hear him cry. I just wanted to hear him cry and know he was ok!! Next thing I knew everyone is yelling "3:45, 3:45" I didn't know what was going on! Only took us a few minutes to figure out Noah had been born, no one told us. We looked over to the room where he had been taken, a room off to the side of the OR, closed off but with a window of it's own... and there were a bunch of doctors and people in there. We didn't even see him... hadn't even known he was born. No one said "It's a boy" or anything......... and that's one of those things that still kills me to this day. We just wanted to know if he was ok, and didn't know anything.



I was taken back to my room... and we knew nothing. It took a little while for people to start coming in. First thing out of everyone's mouth was what a cutie he was. We were told of specific little problems... micro preemie weight - told to us in grams (that means what?) ... looks good, on the vent - didn't want him to even try to breath so they didn't let him.... had 3 little holes in his heart... and a few other things... Said we (meaning everyone but me) could go see him in about 20 minutes. 4 hours later, Noah's Dad, his Dad's mom, my mom and big brother Calahan finally got in to see him, (after 7pm). Came back showing me one of his diapers, and some video... and told me he was 1lb 12.2oz and 13 3/4 inches. (At a normal 33 week pregnancy, a baby would be around 4lbs and 15 inches.) They gave me some Polaroid's too. My husband and Calahan left shortly after, leaving my Mom with me. We played Uno for awhile waiting for my feeling to come back in my legs. Finally it came back enough that I could move my feet and legs - and so they told me I could go see Noah now... it was around 9:20pm. I tried so hard not to cry when I first saw him. He was SO TINY... just unbelievable..... I couldn't believe it.... just couldn't. "The first 24 hours will tell the difference" I was told..... I had no doubt, he was here, HE WOULD MAKE IT.

I pushed myself the morning after he was born, I wanted to get up and do it NOW because I wanted to go see him. I almost fainted. Came so close I had tunnel vision and couldn't hear a thing. But I did it..... and I was up and walking around the rest of the day. Back and forth to the NICU... Noah did great though!! He came off the vent about 40 hours after he had been born...... the nurses would walk past his bed and stop dead, wondering why this 1 lb baby was OFF the vent. And after a week, he was basically termed as a "feeder, grower" ...

Noah had several problems in the NICU... he had hyperbilirubinsim (his jaundice would keep coming back), he had his heart murmurs, he had some bradys (basically heart decelerations) - mostly the couple weeks before coming home - some of them were not "true" bradys... he had some fluid on his brain they were concerned about, ended up putting me in a panic - but we were suspicious because our friends baby had the same thing, what are the odds of that? It ended up being a temporary ultrasound technician and the normal one who deals with the NICU babies said it was a variation of normal, and they were fine.... they saw his right kidney was enlarged (I don't know if that has gotten better or not) ... he had umbilical and groin hernias... and a hypospadious (his urinary tract went to the underside of his penis instead of the tip)... and he went through other tests for his MT16. We found out the placenta was 100% Trisomy 16, the blood was 0% Trisomy 16, they did a skin graph on him, and his skin cells were 30% Trisomy 16 which is what they found in the amniotic fluid was 30% from the amnio. We are lucky to have him.

We were there 6 1/2 long weeks, and he came home the day after his due date. He came home at 3lb 10oz! Everyone asks me if I was freaked out taking him home then, but I wasn't at all. I had been taking care of him while he was in the NICU - by the time he was 3 weeks old I was doing a lot of what the nurses did. I was there between 8 and 9am and didn't leave until 10 pm usually. A week after coming home he ended up back in the NICU for 5 days, due to a cold. That was heartbreaking. We had just left and there we were again.

18 months old, finally going to walk!

Noah has been in the hospital only a few times since, and is doing better then anyone could have or would have expected. He's smart and although he is mildly delayed, mostly just due to his small size, he is doing so well. You wouldn't know looking at him, that anything was wrong with him. So much for that death sentence, that "no quality of life" warning, we were given when he was only 4 months inside. Although anything can happen at any time, and there is always the chance that something could drastically go wrong, it's a fear we have to live with, and not dwell on. This disorder can affect any organ, and you can't test a child's organs for piece of mind. I made a decision, a long time ago when I was first told about Noah's disorder, that I would accept any time I was given with him, even if it was just a few short moments. That is the vow I live by everyday. That is what I concentrate on. Making the life of my child, the best it can be.


I hold a miracle in my arms everyday because I put my trust in God, and not in the medical professional I was suppose to trust giving me information. I am thankful and know that it was technology and many many doctors and nurses who did their jobs so well that kept him alive, doing what they needed to do to get him here safe, and home healthy. Most of all, I thank God, everyday, for the miracle I hold in my arms. I cherish every good moment, and every bad. I never gave up on him, and I never will.

Today, my miracle is almost 5 1/2 years old. He has been sick lately, suffering, the DRs never seem to know what is going on... and I'm afraid our time is coming, but I try not to think about it, it is only a fear. The sudden problems with his stomach and kidneys weight heavily on me. I worry, I am his mom, I can't help it.

At 5, Noah is only 30 lbs and 38 inches. But he doesn't care. He just wants to be BIG like his brother. He has become a big brother himslef now... his brother was small, but bigger then him, at 3lbs 4oz... he was in the same exact spot Noah was in the NICU. Nathan loves his brother. Noah knows it...

Even though my son has a defect in his heart... it is so huge and so full of love. He can wrap love around anyone he meets. One of my goals, since finding out about his difficulties, I want to get the word out about genetic disorders like this.

You really do not understand what a miracle is, until you hold one, and love one....