Thursday, November 28, 2013

Happy Thanksgiving

.Happy Thanksgiving from our Home to YOURS :)

Wednesday, November 27, 2013


 click here --->   REINDEER CAM  <---- click here 
(or on the above graphic) 

So one of my family members tagged me in this when she shared it.......   it's a 24/7 Live Webcam broadcast ....  but at certain times of the day, Santa will come out and feed the reindeer himself!  
This is super fun! Watch Santa feed the reindeer LIVE!! 

Mon-Fri at 11am, 6pm, & 9pm EST. (which is 8am, 3pm, & 6pm for use West Coasters) Weekends at 6pm only (3pm PST). Let your friends know about this, it's fun for kids of all ages!

When does Santa feed the reindeer?

Santa and friends will appear at the following times beginning November 1st:
Monday through Friday:
PST (Pacific) – 8AM, 3PM & 6PM
MST (Mountain) – 9AM, 4PM & 7PM
CST (Central) – 10AM, 5PM & 8PM
EST (Eastern) – 11AM, 6PM & 9PM
GMT UTC – 4PM, 11PM, 2AM
Saturday and Sunday:
PST (Pacific) – 3PM
MST (Mountain) – 4PM
CST (Central) – 5PM
EST (Eastern) – 6PM
You can even write Santa a letter and get on the NICE LIST that scrolls!!  (You can also get on the NICE LIST two other ways (on is by donations!), check out the FAQ's to find out how and the address to send the letters to!)

Here are some of the pictures of the kids watching Santa feeding the reindeer ....

I have an alarm set on my phone for the latest time because the kids are home from school then.

Friday, November 22, 2013

Amazing Video of Katy Perry and Jodi DiPiazza from 2012

This was floating around Facebook last year around this time, and I got chills from it then.  Even now, a year later, it still gives me chills.

This is the amazing video of Katy Perry and young Jodi DiPiazza, an adorable 11-year-old girl who has autism.  They were singing during an Autism Fundraiser that Comedy Central puts on called The Night Of Too Many Stars ...  this was from last year.  

It is absolutely amazing and will continue to be so.

You can see the article HERE from last year...

Amazing Video of Ward Miles - Premature through his first year...


I saw this video floating around on facebook.   I just couldn't not share it.  So of course I have to share it on here too.  With the fact that it is Premature Awareness Month ....  it's a touching tribute.

I have to say, that ...  the first scene, where she's holding him for the first time and doing Kangaroo Care ... I started to cry because, frankly - you never forget that feeling of holding your child for the first time, after days of their birth and the feelings that overwhelm you.  All those tubes and cords, and all of that makes it equally overwhelming because you have to balance all of it.

Now Noah was off the vent the first time I got to hold him, he had just actually come off the vent.  I had him on Friday afternoon (3:45pm), I didn't get to actually SEE him for the first time until after 9pm Friday night, and I didn't get to hold him - for the first time, until Sunday morning just after he came off the vent and was completely breathing on his own.  Regardless, he had IVs and cords and everything else.  Same with Nathan, he was never on the vent.  Luckily they had both been given the steroids to help their lungs to develop and it worked. But those feelings NEVER go away ....  

And I just sat there watching, watching Mom smiling, and trying to be strong for the camera, and I kept thinking - how can she not be bawling her eyes out right now..... and just after I thought that, she broke, and I thought........ there it is.

There it is....  

If you want to read more about amazing little miracle Ward, and his family - you can click HERE ... and read the article off of Yahoo.

Sunday, November 17, 2013

World Prematurity Awareness Day ...


Today is World Prematurity Day. November is Prematurity Awareness Month.

I am the mom to two preemies. I have had two different and unique experiences. I just shared both Noah's story and Nathan's story on my Facebook ... trust me, they are edited short versions, but you get the jist.

Watching these boys grow up - through all their struggles .. not just from prematurity but from their medical issues that have nothing to do with them being early .... it has made me appreciate and view things so differently.

I have to say - that having a premature baby, and being in the NICU - is something ONLY ANOTHER PARENT who has been through it can truly understand.

So if you know someone who has a baby too soon, be a support. Do whatever you can do to help them out. Don't stress them out because - trust me - being there with your child is stressful enough. You feel - a lot of the time - like it's not even your child.

Imagine.... you have to ask permission to touch your child. You have to ask permission or be supervised to do a diaper change. Your baby is fed through a tube instead of at the breast or with a bottle. You are told you cannot hold your baby because their fragile little bodies can't handle it. When you do hold your child, there are so many tubes and wires connected to them then Frankenstein's monster himself. You are there alone. No one visits, sometimes due to NICU rules no one can. When you do get visitors, it's like a holiday.... actual people you know! You make friends with the nurses, and you miss them when you leave... it's like Stockholm syndrome. And you are grateful beyond measure to what they have done for your child and for you.

Having a preemie is hard.

So to all the parents out there who have had a preemie, {{HUGS}}. We are an elite group.

World Prematurity Day - NATHAN'S STORY

18 weeks pregnant on the day Dennis and I got married 
In 2006 I was pregnant with Nathan. We were told - via amnio - that Nathan was genetically healthy - as far as they could tell. However, his pregnancy mimicked Noah's greatly and it gave me great pause. I felt as if something was wrong, but there was no proof. At our 20 week ultrasound we found out that Nathan had a two vessel cord (normally there are three vessels ... two going in, one going out ... Nathan's case there was one going in and one going out. So Nathan was getting half the nutrients any other baby would.) ... So in addition to that - they found out that I had Fibroid tumors in my uterus, pretty big ones from what I understood, which also restricted things, and Nathan had a "cyst in his brain" ....
Valentines Day 2007

But there was NO WAY to know what the future held.

To be safe, I was given steroid shots around 33 weeks. At that point, things were taken week by week, but they didn't want to let me go past 36 weeks.

We hit 35 weeks, Noah developed an ear infection. So he went on some antibiotics. However, over that weekend - he started to get really sick. He was complaining that his right side hurt, he was feverish, vomiting - we took him into the local ER and got brushed off "It's just a virus" ... but in my gut, I felt it was more. The next day, he actually seemed to get a little better, so I thought - well, maybe I'm wrong. But the following morning, the day I needed to go to the hospital - the same hospital Noah was born at, 2 hours away - where Nathan would also be born.... for an appointment to determine when Nathan was coming, Noah was so sick that I was torn about even going to the appointment. He had a 104 temp, he was lethargic, vomiting, and I couldn't leave him. So Dennis and I packed him up, took him the 2 hours away to the hospital - to have him seen in urgent care there.

What does that have to do with anything? Well ... Noah was so sick he was hospitalized. Noah almost died that week. I was told if we hadn't gotten him in - it wouldn't have been long. Regardless, I had to go from Noah's hospital room, down a floor, on April 19th 2007, to give birth to Nathan.

Thankfully - Noah got better... 

It was a planned c-section - wasn't life or death - like it was with Noah. But it was time. And I had a very very hard time because of the Noah's birth was traumatizing for me. I told Dennis, I made him promise, NOT to leave the baby.

During Nathan's birth - they did pause a moment so we could see him, Dennis was taken to the room off to the side of the OR where they took the babies prior to taking them into the NICU...

He was 3lbs 4oz and 15 3/4 inches long. He was born at 36 weeks. He was put in the EXACT same spot in the NICU that Noah had been in.... and the nurses kept saying "You are a pro, you take care of him, you know how to do it..." LOL... since it was Dennis' first experience in the NICU, I let him do a lot of the firsts when it came to Nathan. I walked him through a lot, and told him how to do stuff and what to expect. I hope that my experience with Noah helped me make his experience with Nathan less traumatizing as a parent.

Later we learned that Nathan's lack of growth is due to him having a rare type of Primordial Dwarfism (primordial meaning he's proportionate, and dwarfism meaning he is expected to grow under a certain height) ... called Russell Silver Syndrome. He was born with a cleft palate that was repaired May 2012, among a lot of other things. He also has Autism. I hate to say he's non-verbal because he tries so hard.

He is 6 years old, the size of a 2 or 3 year old, he is 27-28 lbs and about 33-34 inches. He is my hero!

World Prematurity Day - NOAH'S STORY

In 2001 we learned that Noah Alexander would be born with an extremely rare genetic disorder called Mosaic Trisomy 16. We were told - he wouldn't live. Period. I knew better, I had done my research and learned there were survivors. If he had been full Trisomy 16, there was no hope, but with that word "Mosaic" infront of it, gave hope. The third chromosome wasn't in every cell. I was told - though - there was no hope.
31-32 weeks pregnant

We did know, for sure, that most likely he would be born early. Many of the babies who made it 9 months were actually stillborn. In Noah's case, it seemed it would be best if he was born early. I didn't expect what did happen.

At 32 weeks - Noah started to have heart deceleration, I developed Eclampsia, and I was having contractions. I was hospitalized.

At 33 weeks, I was rushed to a hospital with a high level NICU. My OB sent us off saying "you'll probably deliver tomorrow" (the date would have been 2-2-02 for his birth) ... but when I got to the hospital on the 1st of February 2002 they denied me any food or drink and ran a ton of tests. One showed that blood flow to the placenta was barely existent and the placenta was failing.

The placenta through the pregnancy had been smaller than normal and functioning poorly.

We learned later, the placenta was full Trisomy 16.

When they realized this, they said they had no choice, I would under go an emergency c-section to save us both.

What I didn't know at the time, was that all these DRs and nurses were being told Noah wouldn't survive. There was no hope. Not to do anything extraordinary because it would be pointless.

I was rushed back into surgery, and I remember how the OR was silent. The only sound, other than a few surgery commands, I heard was "3:45" ... when I finally asked what it meant, I was told ... "It's when your baby was born." There was no announcement. No "It's a Boy!" ... not a peep. Not one consideration for me. They whisked him away without even letting me see him. IF he had died - I would have never had the one thing I asked for ... and that was to just hold him alive once.

February 2, 2002  (aka 02-02-02) and his Nana's birthday.  1 day old

Luckily they weren't right. He didn't die. He was born 1lb 12oz and 13 3/4 inches long. And he THRIVED. When I got hospitalized - I was given the steroid shots for his lungs. At 12 hours old they were already starting to wean him off the oxygen. But the time he was 40 hours old (LESS THAN 2 DAYS!) ... he was taken off the vent and completely breathing on his own.

Shortly - he was labeled as a "feeder grower" .... meaning, the only reason he couldn't go home yet, was because he needed to learn to feed and grow some.

First time I got to hold him - just after coming off the vent at about 40 hours old
February 3, 2002 - Day he came off the vent and at his lowest weight - 1lb 11oz
the 6.6 is the weight of the diaper.  They would take that away from the total weight of the diaper when it was used to find out their output
I believe this was the first time we did Kangaroo Care
Valentines Day - 2 weeks old - hit 2lbs that day
 Tiny hands and tiny feet ......

Kangaroo Care
With Wedding Rings
Noah came home from the NICU the day after his St. Patrick's Day due date. He was out for a week and ended up back in for Easter because he caught a bad cold and was in quarantine. They told me it wasn't RSV, but they treated him as if he did.

One of the nurses took these for me to walk into the NICU to see St. Patrick's Da
SMILES on his due date!! 
This is about actual size (what I have it sized to on the computer) 
Today, Noah is 11 years old. He is the boy who wasn't suppose to live.... He does have some developmental delays, and he is smaller than a typical 11 year old ... but he is an amazing kid. AMAZING. I can honestly say that I witnessed a miracle. I witnessed him.
Noah - Age 11 

Monday, November 11, 2013

Nightly Struggle with Meds ..


This is what I have to dish out for nightly meds for my kids.  Nathan is sick - freaking bronchitis/pneumonia  - Nate and I have both been sick since before Halloween.  It hit me so hard I couldn't go out Trick or Treating with the kids on Halloween - first year I have ever missed since Calahan was born.  (CRY!) ...  anyway ... so both of us are on antibodics, we're both on multiple daily  nebbies ...

We are hanging out in our beds all day - coughing and hacking and feeling like we're going to die

So .... despite the sick factor right now.....  Every night is a struggle with meds.  The first cup there (on the left) is Kaedyn's.  That's his Zyrtec/Benedryl cocktail.   Then there is the pain meds Nate takes on a nightly basis to try to combat his migraines.  We have found that if we give him ibuprofen at bedtime, it helps him not wake up with migraines.  The second cup is Nathan's Zyrtec/Benedryl with addition of his migraine medicine cocktail.  Nathan's migraine med tastes like peppermint, but he doesn't like it ... so I put it in the cocktail to try to mask the taste he doesn't like.  The next one is cough meds.  The last one has his thyroid pill and his Singular (Asthma med) in there.   The only thing that he DOESN'T take o a normal nightly basis is the cough meds. PLUS in addition to that, he has his nightly shot of HGH (human growth hormone) ...  which isn't pictured.

You call Nathan in and he realizes what time it is .... this is the reaction that you see....

See how icky his poor little nose is from this nastyness we have?????

We try to get the worse assult out of the way.  Breaks our hearts on a nightly basis.

Ugh!  We're trying to come up with a way to make this easier for him.  Right now handing him the puppy and letting the puppy lick his face to no end helps by distracting him just a little.