Created a few new Graphics (MT16, Kangaroo Care)

I created a few new graphics this morning ...

For Noah, for Mosaic Trisomy 16

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And a series of three for Kanagroo Care Education/Awareness ....   when I was in the NICU with Noah, I had to ASK to Kangaroo Care and then got "training" to do it (I had to watch a video) ... with Nathan, I brought it up right away - DB was trained (he's not Noah's bio-Dad so he wasn't around at that time, all things NICU was new to him with Nathan) ...  and we started right away.  I think Noah was about a 5 or 6 days old when we started Kangaroo Care with him, and Nathan was 2 to 3 days old....

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

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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.

World Prematurity Awareness Day ...

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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 

Rare Disease Day 2013

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I know it's been awhile since I've updated - and I promise, I will do so soon....

However, today is Rare Disease Day ... and as a parent who is trying to bring awareness to rare disorders, especially those of my children ...  then I - of course - must post today!!

So .... here are the short stories of our Noah and Nathan...

Noah ...  after five years of secondary infertility, four more miscarriages (my oldest was a twin and I miscarried his twin, so it was five all together) ....  and at the breaking point of all lost hope on having another child, I found out I was pregnant at one of the worst times in my life.  I was fully of stress, worry and the unknown ...  but I grasped onto that baby like a lifeline.  We saw his heart beating and I just knew - knew - he would make it and I wouldn't loose him in miscarriage.  A few months went by and I had my 12 week ultrasound...  only, he was smaller than he should have been.  Further ultrasounds, still the same, too small.  Finally I agreed to an amnio and at 19 weeks I found out that we were having A BOY!!!  And that our lives would change forever.   We found out he has MOSAIC TRISOMY 16.  A very rare genetic disorder that very little is known about.  We were told he would die - period.  When I wouldn't accept that answer, we were told that if by some miracle he did come home, he would be so mentally and physically delayed "it wouldn't be worth it" ....  but I wasn't going to give up.  I kept saying, I'll take whatever time God grants me with him.  He was born at 33 weeks - 1lb 12oz and 13 3/4 inches....  and although we have had a lot of hurdles, and challenges ...  he is a very smart, compassionate, stubborn 11 year old now.  Because he is a miracle, and he is rare.

Nathan ....  was a surprise.  We weren't trying to get pregnant, and so when I found out .... I was in complete and utter shock ...  His pregnancy started to mirror Noah's with the growth issues.  I knew something was wrong but kept being told it was fine.  We found out at my 20 week ultrasound he had a "cyst" in his brain called a Dandy Walker Variant .... and although we later found out it's not a "cyst" but an absence of what's suppose to be there.... it's still considered a DWV.   He was born about a month early .... 3lbs 4oz and 15 3/4 inches.  Through the years - it seems like the diagnosises never stop.  He has such a dramatic list, Hypothyroidism, Cleft Palate, another brain malformation other than the DWV, Autism....  but the one we really wanted was the one that would explain his failure to thrive and lack of growth.  In April 2010 he was diagnosed with clinical Russell Silver Syndrome.  It's a type of primordial dwarfism and it's not common.  Although there are a lot more families who deal with it then the Mosiac Trisomy 16 that Noah has - but it's still scary.  Especially when Nathan is almost 6 years old and only 27lbs.   He is a rare miracle too.

I hold mine every day!

Preemie Remembrance....

November 17 - Prematurity Awareness Day ....

As many of you know, who read my blog regularly, I have had two premature babies.

Noah Alexander - born weighting 1lb 12.2 oz ...... 13 3/4 inches long.......... born at 33 weeks, the size of a 24 weeker ...

 Noah was on a vent for the first 40 hours of his life, then proving all the doctors who said he wouldn't live wrong...... he was off of it!! 

 With Beanie Baby HOPE ... Noah at his lowest weight - 1lb 11oz at 3 days old... 

 His itty bitty foot in my hand ....  

Nathan Patrick - born weighting 3lbs 4oz .... 15 3/4 inches long ........ born at 36 weeks, the size of a 31 weeker ... 

 Nathan was constantly under the bili lights ....... I called him my sunbather ...  and he was tube fed because he couldn't get nippling a bottle  ... thanks to his sub-mucus cleft palate ... 

 The picture below is of Calahan and Noah looking in on Nathan through his bed...  the NICU actually loved this picture - stole it from me (ha ha ha) and asked if they could use it in future publications to talk about how siblings are integrated in the NICU ... of course I said yes!!

I am the Mommy to TWO Preemies!  Two babies with medical issues.  Two babies who game too early and too small.  I've been in the NICU twice, and I've brought home two babies who were under five pounds. 

Before having a preemie - you are so naive ...  you know there is a world out there of babies who are too small, you know some of them don't make it ... you know it exists but it's the whole IT WON'T HAPPEN TO ME mentality....

It does happen ...

Then you become way to familiar with all the things that can go wrong ...  brain bleeds, feeding issues, A's & B's...  temperature holding issues, sensory issues, tube feeding, PIC lines, leads and daily weigh ins... not to mention the world of breathing tubes, oxygen... and RSV ...

It's not an easy world to enter into once.... let alone twice. 

Educate yourself....  you never know if it could happen to you, or someone you love.......

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