Well, figgured I could convince everyone I wasn't dead.... Yet... *chuckles*.

Since I've last written alot has gone on with the little one...

Lets see, He's had a few more surgeries... One to recconnect his ostomy, and one on his eyes to combat ROP. He's also now on medicines for anemia and high blood pressure as well as hypertension, not to mention the steroids for his lungs as well as the lasix for the fluid retention. Then we've also been transferred from Albany to Syracuse and back...  I've moved from Monticello to a smaller town called Hurleyville... Been home for a week or two, came back to the Ronald McDonald house and I plan on bouncing between here and home on the regular.

He's still in the hospital, STILL having breathing problems, however, He's eating like a champ which is why they won't put Clinton back on the SiPap (he's on high-flow now). Tey've even talked abut transferring him to the PICU because he's getting too old/big for the NICU. Mind you he's nearly five months now... The road is still long, rough and filled with various potholes and obstacles before I can even begin to think about getting him home and having him there with specialists and theripists comming right to my house. They've also considered sending him to a rehab facility to try and get him off the breathing equipment. 

If only he'd cooperate instead of being stubborn like his father and myself... We'd be getting somewhere...

Terry of course is taking this all in stride... Bless his little heart. For a two year old he's amazingly well behaved (any of you out there who own your own two year olds know what I'm saying). 

Well, I gotta run, chasing Terry is a never ending chore.... 

Tags: Moved Stillinalbany Still Dried Up

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Alright, so it was NYE last night and for the third one in a row, I din't do anything. Just sat around with the hubby. My life is JUST that exciting... But I did have yet another trip to the ER with DS1 for the second time in a week.

 Why?!? You may be asking. Well it's my nemisis 'nursemaid's elbow'. Pretty much a partial dislocation of his elbow... This is the third time in his life that it happened. Meaning it'll keep happening till he's 5 or 6 because his ligaments on his left side are stretched out. Yay! *some more sarcasm*. Well he's fine now, and the next time it happens I should be able to put it back in place myself instead of making yet another trip to the ER. 

Isn't it bad enough I have DS2 in the hospital? *chuckles wryly* I mean come on now! Don't I have enough to think about? lol!

Anyhow DS2 is doing well on the SiPap thank goodness! I don't want him to take a step back at this point. It'd be horrible! I love being able to hold him now and talk to him on the regular while he's sleeping away on my chest.

Even though my breasts just arn't made for making milk. I was looking over some of the info on this site and it hit home quick. During this pregnancy my breasts didn't really increase in size at all. There wasn't any noticable change.  I'm stil a size B... a low size B. It's really sad for me that I just didn't have enough for him and I'm missing out on giving him all of those importaint nutrients and bonding with him like I did with DS1. I know that he got all of the little coloustrum that I had and some actuall BM but since my production just stopped in the course of a week I've been saddened that I'm not producing anything. It didn't matter that I was taking fenugreek, or pumping like a madwoman... It just stopped for some reason. No mastisis or clogged ducts, I just stopped producing. Even manually expressing didn't help. I know some of you are asking why I didn't go the prescription route, well to be honest, if fenugreek didn't work, I wouldn't expect a prescription to fare any better. 

Make any sense? Well at least he got some of the benifits... He got all I had. I'm just so sad that I can't give him any more. I guess it was a horrible combo of stress and nerves. But if your kid was in the NICU since birth and had various health issues the same happens for most mothers experiencing what I've gone through. It is disheartening though for me. I see all these women who get bottle after bottle of milk from themselves and I got squat. *frown* I'm a little jealous! But can I be blamed for it? No not really. This isn't like the jelousy I had for women who were pregnant that I saw right after having him though, when things where their absolute most critical. I'd get so mad at other woman walking around with their little ones still safe inside their tummy's and get so angry that I wanted to scream. And running into other mommy's who's newborns where healthy and not early I had the same reaction. For a minute, I thought about going to counseling to get the guilt and anger off my chest. Things have improved all on their own. I sorta made peace with myself after Clinton turned a month old and things stabilized. But, I know that anger and jelousy rears it's ugly head occassionally, especially for me. Especially when I'm sitting at a house that is not my own,  watching other moms leave week by week while I have to stay. Don't get me wrong, I'm truly happy for them, but, at the same time, I'm sad because I know that I still have a long road ahead of me before both Clinton and myself are ready to do that. I just have to keep my head up and praying that he doesn't have any more setbacks. 

The gods have been smilng on him, I just hope that they continue to do so. 

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Alright, so as some of you now know I got to hold the little one the day after Christmas. It was the best gift I got this year. Not only that but they took him off the jet ventilator that night as well. They've been steadily turning his pressures down and he's been doing beautifully.

I'm convinced it's because of all the comfort he's getting by snuggling with me. It's definately helping him to the point that he decided to extubate himself and get put on another machine! He's now on a SiPap machine. It does almost the same thing as the conventional vent was doing but it's less evasive because it's a 'mask' that goes over his nose instead of a tube down his throat. He seems more happy too. Although he started to cry today when the nurse took him away from me. He sounded like a little kitten, but it was the sweetest sound I've ever heard. I'm just tickled that he's doing so well now. He's gotten strong to the point that he's moving his head around and he opens his eyes wide to stare at me when I speak to him. He even smiles at me. I can't even express how happy I am!

This is a pic of me holding him today!

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 Well, I tried to no avail it seems. Hopefully, I can get it back but nothing seems to work. Even the Lactation Consultant at the hospital said I was doing everything I could. But It seems like I'm drying up. Every time I express milk now, whether manually or with the pump it's always less and less. I can't help being stressed out. I mean, my kid is practically living by machines and I cant hold him, or even hear him when he cries. It's horrible, watching his face scrunch up and turn red while he screams around his tube. But, it's a silent scream. His little eyes even well up with tears. It's heartbreaking that I can't hold him or comfort him. If I touch him he immediately 'clamps down' and his sats bottom out. He's just not ready for me to try and comfort him. Even when I just set my hand near him. Sometimes I can touch him, but he's usually too tired from trying to grow to like me to do it. I can only do it for literally seconds at a time. I know, he's still supposed to be inside me and wouldn't get that reassurance, but it'd be nice for ME to get that reassurance.

The new steroid they started him on IS working however. His pressures are getting turned down bit by cautious bit. It seems like it's taking forever though. All I can do is sit back and watch. I hate not being able to spend time with him. It seems now that every time I step into the nursery Terry immediately begins making a ruckus, so I have to turn right back around and go out in the hall. It's terribly stressful for me. Every now and then I get lucky and there is another parent willing to watch him for me, but that doesn't happen every day. With Christmas looming, I'm practically the only person left at the Ronald McDonald house because all of my friends I've made have been able to go home with their little ones. I'm quite happy for them, meanwhile mourning the fact that I can't leave. I even feel guilty for being an hour away from him. I keep counting the days and trying to stay positive, but it's really only getting harder. Now that I've pretty much 'lost' my milk I just feel so downhearted.

I literaly can't do anything for my son...

My one wish for Christmas this year, is that I can hold him, REALLY hold him. 

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Yup that right girls, thats all I'm getting from BOTH breasts, even while swallowing fenugreek (4 times a day), double pumping (every 2 hours), massaging, drinking water till I feel afloat, and mowing on oatmeal like it's my job. NOTHING IS WORKING!!!! *sob*

If that isn't bad enough, every time I go into the NICU with Terry he starts screaming and thrashing so I have to leave 1 minute after I step in the door. There isn't anyone who can watch him for me so I can spend more time over at the hospital with Clinton. Thank god that my hubby is gonna be here tomorrow. He and I can take turns watching my monster so we can both visit the little peanut without a screaming two year old waking all the babies in the NICU up.

The Doctor came and talked to me today. They are going to change Clintons meds. again.  They are taking him off the hydrocortizone and putting him on Dexamethasone in hopes that it stregnthens his lungs enough so that they can begin to wean him off of one of the vents and turn his pressures down. Eventually taking him off the vent all together. I'm happy with that idea, but not so happy with the side effects of this steroid. The side effects are a rise is blood glucose, blood pressure, and it can also affect his congnitive development later on in life. This concerns me alot. I mean, I've already been told that his chances of having Cerebral Palsy are almost definate, but stunting him cognitivly even more?!?! IT makes me want to cry that I have to make a decision like this. I mean what would you choose if this was your child? If you had to make this kind of choice? It really isn't as cut and dry as one would expect. I worry that I could be doing him more harm than good sometimes. He's so tiny and fragile and I'm calling the shots for him. Sometimes I even wonder if I made the right decision from the get-go. I know I shouldn't doubt myself but put in my place I'm sure any one of you would think the same thing. I mean, I can't even produce enough milk to feed him anymore, and I havn't held him, nor am I really caring for him. I guess I'm just going throug ha tough time right now. Things are really hard for me to handle and I feel useless....

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Alright, so Clinton has been doing quite well since the last time I wrote on this. Getting bigger and stronger (he's now officially 2lbs. 5oz.- a whole pound heavier than he was at birth!) and oddly enough, more 'social'. Whenever I'm near his issolette he tries to turn his head twords me if he's facing the other way and he opens his eyes wide to stare at me for a few minutes. He's even cracked a smile or two. I know I know, "it's a reflex, not a real smile..."

 Shut-up! Let me have my moment...

My milk production is still craptasticly awful, but I have fenugreek now and it can take 72 hours to really start working (started it 48 hrs ago, 2 pills 4 times a day)... so I'm hopeing that it helps out alot. I've also been double pumping *clutches boobs and whimpers softly* Not fun! But a necessity if I want to continue to BF the boy. They took him off the 'jet' (a vent that vibrates his chest so he can breath) for 8 hrs. Because he was trying to breath on his own. The nurse wanted to see what would happen if they gave him the oppourtunity. He did exceedingly well for his problems he's had. Eight hours is a long time... Granted he's hooked up to two ventilators... :D But I'm proud of my boy. He still hates it when the nurses touch him or move him around. But he's been relitvly well behaved lately.

Well, I gotta get going and get my ass back to pumping *whimpers again*  

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Well, lets see... Since the last updateon the little 'un. There have been a few changes for the peanut. They started giving him my breastmilk *screams like a little fangirl and does a happy dance*. They've also started the little peanut on Lasix so he could drop some of the water weight he's gained since his surgery. He looks very very puffy because of all the water he's retained. Other than that he's been doing wonderfully.

*Warning* Entering Pissed off (ranting) Mommy Zone

Ok, since when  can doctors decide to NOT tell a parent about a procedure that's been done? I.E. the results... Last time I checked they HAVE to tell me everything I want/need to know. Which, in my case, I WANT to know everything. Every tiny insignifigant (at least to them) detail that they don't worry about. I don't care, I want to know. I have that right as Clinton's parent to have that info. 

Correct me if I'm wrong here...

SO, they did an ultrasound of his brain last Friday. Did any of the nurses taking care of him over the weekend tell me about this even when I specifically asked about it??

NOPE!

Did any of them think of telling me the results (because we all know that there IS paperwork about every procedure in a hospital) because I know damn well that they had the information sitting right in front of them? THE ENTIRE TIME!!!

STILL... NOPE!

Now, put yourself in my shoes for a moment... If YOUR newborn child was in the hospital and was getting his/her head checked for possible hemmorraging, swelling, or another problem. Even if it was 'all clear' you'd want to be informed immediately right?

Well according to the resident Dr. at Albany Med. "I didn't need to be concerned..." EVEN THOUGH THERE WAS SOMETHING ON THE ULTRASOUND. 

Who in their right mind wouldn't want to know about a change, even if it was minute? ESPECIALLY if it has to do with YOUR child's brain?

Thankfully it's a very small (not even a grade 1) bleed. Doesn't matter, I still should have been told right?!?

  You'd think so... But this is a direct quote from the doctor... "I didn't want to worry them over nothing." What kind of ASSHOLE says something like that?!? Especially about someone else's kid? He must not have children...

Not to fear though, my primary nurse corrected him right quick. She got mad for me... Explaining to him that I'd RATHER KNOW EVERYTHING. than know nothing. EVEN if it's something he deems 'insignifigant.'

*End Rant Session... For now...*

Finally got over being sick. Having to stay away from the hospital and Clinton for five days was AGONIZING! Not only that but my milk production is down to 10-20 ml's per pumping session. *cries* I wish I could let Terry help a bit more but he's apt to bite. Argh. I've been trying to relax, and stay calm but it's so hard to do. Not only that but being sick seems to have sapped my boobs of their milk making properties, even though I've been guzzling water and chowing on oatmeal since I started feeling sick. Pumping as often as humanly possible with a two year old is not an easy feat in and of itself. Hopefuly I can begin to produce more so that he can remain on BM instead of switching to formula. I'll cry my eyes out if he has to switch to formula. *sigh* Well, hopefully I can overcome this obstacle. The Electric pump is NOT my friend, I seem to have more luck with a manual one, so I'll stick with that. Unless of course I really need to get going on the milk making. Then I'll pump the crap outta my boobs with the electric. I wish I had my van so I could drive to a pharmacy or an organic's store to get some fenugreek. I guess I'll just have to wait till Monday when my hubby comes out. Well I have to get going, it's almost time to 'inflict more torture' on myself.

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This poem made me cry... I just wanted to share it with everyone who cares to read it.

You Can't Imagine

By Kerry Bone

You can't imagine the fear in your heart
When the contractions won't stop, even with meds
And to hold off delivery
You'll be confined to a bed.

Can you imagine just what it's like
When plans for your new life
Are sliced from your heart
With the sharpest of knives?

And what does it feel like,
You wonder aloud,
To feel like your world
Is under a black cloud?

In your wildest of dreams
This would never occur.
Did I cause this to happen?
Something you'll never know.

As you're raced across town
By maternity transport
You search in their eyes for some kind of support.
And every last person says they will pray,
But not even your OB knows what to say.

Taken so quickly,
Moved through so fast,
Who knew that this pregnancy
Was just not meant to last?

In a rush of bright lights
The OR doctors a swirl,
In the darkest of nights,
Comes my babe to the world.

You give out a loud cry
And you're rushed through the door.
I guess we're too stunned
For our tears just don't come.

The next several hours
Are just a big blur.
For all of my troubles,
I have nothing to show.

In the wee hours
They push me upstairs,
To see my mere tot,
That was born on a prayer.

You can't imagine
The joy that I feel
To look into your face
And know you are real.

Your dad and I both
Approach your new bed,
And look at our fighter
With wires from foot up to head.

As I reach out my finger
To give yours a test,
I ask - will you make it?
You squeeze back - I'll do my best.

Can you imagine just what it is like
To lay in your bed clutching only a photo,
Able to do
Absolutely nothing at all?

I wish I could help you
My poor little sprite
To give you the ability
To last through the night.

But then at that moment
I see it's not true.
I can pray to my Lord.
He'll know just what to do.

For I know in His plans
He sees what is best.
He knows what you can handle
And will give you no less.

Try to imagine
Your heart as it breaks.
When you leave to go home
Your son in his warmer, fragile and alone.

Having held him just once,
But that once was enough
To know that his fight
Would be strengthened with love.

And so the day starts,
But seems never to end.
Until you are with him
Near your babe once again.

The days grow in number
And closer you grow.
As your baby progresses,
Faith you do know.

But still there are the days
With the setbacks so large.
You wonder if this babe
Will ever be home in your arms.

You must trust that there's always
A plan that we follow.
So you celebrate the success
And weep at the sorrow.

And you watch "normal" moms
Your heart feels like lead.
As they hold their newborns
Just like you had read.

But for you it is different.
It can't be the same.
Instead call it a blessing,
"Miracle" is his name.

What must it be like?
Just think for a minute,
When the days number months.
This life - how do you live it?

Somewhere deep inside
You grow stronger, too.
Gathering strength from your baby

Who longs to be with you.

Slowly you come to accept
All you could not change.
Your spirit, it heals.
Your heart no longer is drained.

It's all right this new life
Started differently than most.
You entered a new world,
With your child as the host.

And these days, they will fade,
Just good feelings remain.
Like the love you received
On those darkest of days.

Consider yourself blessed,
For a gift was your babe.
Who brightened those walls
In his earliest of days.

He brought you to friends
You would never have met.
And gave you a family,
You can't ever forget.

You can never imagine
The heartbeats I feel
When I look at my son,
And know he is real.
The chills that run through me,
With each breath he can breathe.
The warmth in my arms
When he cuddles and feeds.
The tears in my eyes
Because you stayed with me,

My sweet little Ty.

And though words try to express
All we've been through,
Imagination just doesn't come close,
To experiencing a true miracle - or two.

Kinda suits my situation at the moment... At least I know I'm not alone.

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Wow... Thanks! :D

On to other things... Clinton had his surgery, he's still doing incredibly well compared to all the other preemies they've ever had to give 2 ostomies so early to. His O2 Sat was a bit low the day after but thats normal with all of the swelling and fluid buildup from them messing wih his tummy. They started him on Lasix and he's peeing alot, about 44 cc's each change. But other than that he's happy, well behaved and drugged up on morphine once again. 

Those of you who are wondering about the 'well behaved' comment havn't read any info about NICU's before so I'll give you an idea. The nurses lovingly joke that babies either 'behave' themselves, by not making the nurse go crazy and have to do alot of things for said baby. Or they 'misbehave'... As I've said before, Clinton is a might stubborn and there are things he'll tolerate and things he hates. When said nurse does something he hates he retaliates by D-Stating (droping his O2 Stat) or his blood pressure shoots up sky high (although since they've started him on the hydrocortizone he hasn't done this as much). All in all he's doing wonderfully.

Ack! I'm sick though... and so is my husband. My head is pounding, my throat is sore and my body aches everywhere. I can't go to the NICU to see Clinton for fear that I'll end up passing on this evilness to him. My toddler is even a bit sick. Poor littl'un. I've been giving him a decongestant and following it with tylenol so his aches and pains don't feel as bad as mine. I've been chasing tylenol cold with ibuprofen all day to try and alleviate some of the fever and aches I have. That and I'm dog ass tired from waking up shivering in a 72 degree room with three blankets covering me at 5am this morning. After finally going to bed after finishing my laundry at 2am. For the rest of the day the Ronald house was filled with people because it was their big christmas party. So yeah... My head is trying to kill me... Anurism anyone?!? I've attempted to sweat my fever out by drawing a hot as I could bath and laying in it for about an hour before going back to bed this morning only to be woken up an hour later by Terry. Then hearing people talking loud and having a good time all day and screaming children to boot... Yup I'm convinced I'm dying!

But Terry of course had fun... All the people he had to flirt with and he got to sit in Santa's lap wich interested him a bit. But all in all, I think he had a good time even though I really didn't. I had to bribe him with a lolly pop to get him to go into the room with 'Santa' because there was just too many people in there and he wanted to play in the 'train room'. So of course when I picked him up to bring him into that room he started screaming and kicking, hence the bribe... But he's got some new funt toys that I don't have to worry about them getting recalled or anything, like on his birthday for instace I had to throw out one of his toys because of the recalls. *shrug* Oh well, the kid's got a bunch of toys anyhow. :D Well i'm off, I have to go to bed and see if I can't fight off this illness some more.

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