13 Years Ago .....

Thirteen years ago this very moment, I was awake in a hospital room.  Nervous.  Scared.  Paying attention to every kick, roll, movement, and the constant beeping of my baby's heartbeat on the fetal monitor I had been attached two for about 58-ish hours.

Something would happen soon that would worry me more ...  his heartbeat would drop dramatically and they came in and threw an oxygen mask on me.

But yet, I was so exhausted, I did sleep.

It was the eve of the birth of my miracle.  My first miracle.

The Boy Who Lived.

How terrified can you be about the birth of your baby???

Well I was.

As is every parent who hears the words that break their hearts into millions of pieces when they are told "Your baby won't live" ....

There are more of us out there then you think.

I - however - was one of the "lucky" ones....

My little boy came into the world weighing only ONE POUND TWELVE POINT TWO OUNCES and THIRTEEN AND THREE QUARTERS INCHES. I was unaware, but the staff had been assured he'd die.

This is the only picture I took of him on the day he was born.

I really spent the first week of his life in shock I think.   I also think that's the first time I've ever admitted to it.  I know I cried behind closed doors by myself a lot.  I was sooo lonely while he was in the NICU but I was also afraid to leave his side.

Being a NICU parent is something that cannot be explained to someone who hasn't experienced it.  There is now way to explain the constant ups and downs of emotions, the full on emotional breakdowns of worry and fear that your child will die.  Having to come to terms with it if it happens.  Getting emotionally involved with other families and watching babies die.  Being so lonely and far away from home. Being at the mercy and schedule of the doctors and nurses.  Having nurses (not all nurses) act as if YOUR CHILD is not YOUR CHILD.  Having to ask permission to touch, hold, interact with your baby.  Having your life, completely and utterly put on hold.

I can put the above words to it, but just that little bit is not the huge impact it has because even with that - no one can even imagine.

My little itty bitty fighting miracle went from this ........

To this.....

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.

Nathan's Story ...... World Prematurity Day

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!

Noah's Story ...... World Prematurity Day

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 

HAPPY 5TH BIRTHDAY NATHAN PATRICK!!!

Once upon a time....... this man and woman fell in love ...  and only a few months into their relationship, she found out she was pregnant .... soon they found out it was a little boy and much like his older (half) brother - he would have medical issues....... not the same medical issues.... but...... different.

Through the pregnancy - the Mommy tried not to worry - because, unlike the hope she got researching the older brother's genetic disorder.... all the stuff she read online, this time, was disturbing, and upsetting to her .... so she stopped.

And gave it up to the Higher Power ....

She worried about the birth, because the older brother's had been an emergency and traumatizing for her.  She was scared.  Especially when the older brother got sick and almost died the week that the baby was born.  Thankfully, she listened to her Mommy instinct and found someone who listened to her ... and finally, they treated what was wrong after a lot of tests and some extremely strong antibiotics.

Nothing like spending the last few days of your pregnancy sleeping on a window bench when you are suppose to be on bedrest :/ 

There was a ....haphazard sort of fumble deciding Nathan's name.  Originally he was going to be named Dennis Phillip Bernard Y. the II  ....  (that's the SECOND ... Dennis didn't like Junior)  .... one day while at a check up complete with level II ultrasound (had to go every other week for one) ... we were in the waiting room and he said "We should name him Patrick if he's born ON St. Patrick's Day."  I replied back with a long drawn out "okay" ...  because naming his son after himself was important to him so I was going to let him....... even though I am not fond of the name Dennis... and definitely not Bernard ... even though he was the best elf in Santa's Village on Santa Clause ....  he stated, ONLY if he was born on St. Patrick's Day.   But then he says "what should his middle name be?"   I'm just rather quiet.  He says "How about Nathan?  Your Mom is fighting for a Nathan, we could make her happy."  So I simple said "Nathan Patrick sounds better....."   pretty soon, he decided the baby was not a Dennis the II ...  but definitely Nathan Patrick. 


My name was suppose to be Nathan Allen.  I was suppose to be a boy .... so SURPRISE when I came out a female type of child, my mom had to come up with a name for me on the spot.  Ha!  So with both Calahan and Noah, she fought for the name Nathan - she still wanted her Nathan.  So she finally got him.


I had to leave Noah - in his hospital room - at 8am to go one floor down and start getting ready for Nathan's birth.  It was definitely one of the hardest days of my life.  Luckily - Noah wasn't fighting for his life anymore.  He was definitely on the upswing.  It really didn't make it any less hard though.

I had Noah in the same hospital, with a level III NICU....  the staff in the delivery room with me hadn't told me that Noah had been born.  The whole pregnancy I was making my doctor promise me that he would make sure I at least got to see Noah alive - once - I wanted him born alive and at least wanted to see him alive, once.  There was a very good chance that I could lose him.  I had faith I wouldn't.  I had given that all up to God too...  I just wanted one thing.  So when they didn't even tell me he had been born - they took that away from me.  They didn't give me a chance to see him, he didn't make a sound because they didn't even want him to try (he was only 1lb 12oz ... we expected him to be small - but not THAT small) ...  the only reason I knew he had been born was because someone kept repeating "3:45" and I asked why - he said "that's when your baby was born."  They fully expected Noah to die.  The Doctors told the staff - he probably won't make it the next 24 hours.  Etc and so on.....   no, this isn't about Noah ...  but I told you that so you'd understand why the birth had been traumatizing and why I was so afraid it would happen again....

So when I went through all the prep for Nathan's birth, I was in tears the whole time.  THE WHOLE TIME.  I just couldn't stop crying.  I'm being poked, prodded, shaved, shoved with a cath ... and then it took them TWENTY MINUTES and it seemed like 100 pokes to get the spinal to finally get in the space it needed to be.  Half my back was bruised from it.

So when they finally got it - and let Dennis in, I was a little relieved.  I knew he would make sure things didn't go the way they had with Noah.

So when Nathan was born .... he took a deep breath and started to cry, immediately - I started to cry.  I was exactly what I needed, music to my ears ... it was like angels were telling me everything was perfect.

They stopped at my side so I could see him, Dennis snapped a quick picture....  

Everything wasn't perfect, but it was good.

I made Dennis stay with Nathan.  I didn't want him leaving his side.

Nathan right after he was born

Nathan Patrick - 3lbs 4oz and 15 3/4 inches ....

He was put in the same spot (same Pod) in the NICU that Noah had been in.... there was no talk of him not making it - and they let me do the majority of the care because they all knew me and knew I could do it...  I taught Dennis too because this was his first preemie.

Regardless..... he came home a few weeks later, a couple days before his Mother's Day due date...

He had to come home in a carseat bed (much like Noah) ... which is what you use in the car prior to 5lbs - if you put a baby smaller than 5lbs in a baby carseat, their airway is likely to get cut off...


He was so tiny we had to pack stuff around him in the swing just to keep him stable....

And he came home with an NG tube.  Dennis and I had to go through training so we knew how to put it in and take it out - feed through it - and all of it.

I worked really hard to get him off that NG tube and bottle feeding.  Even though I had spent a lot of time pumping breast-milk for him - I had to stop because it was too much for me.  He had to feed every two hours - We'd wake up, I'd get everything set up for a feeding, change him, feed him, spend time with him, after he fell back to sleep I'd pump, take care of my own needs, and if I was lucky, I'd be able to get ten or fifteen minutes of sleep.  Something had to give.  Sadly - it was pumping.  But I had a whole freezer full.  Unfortunately - when we ran out of fresh and got to the frozen, he had an adverse reaction to it and would projectile vomit after each feeding.  So I got formula one day and tried that - much better and much more satisfying for him.

Still - something like that happens - and you know breastfeeding is super important - you just feel like a failure.

Nathan was an amazing smiling happy little boy - he was such a character and so bright with life.

He was always willing to let me take his picture....

When he was about 18-19 months - he got shots, and shortly after that - something changed in him.  He started getting severe mirages, hiding in the dark, and showing autistic tendencies ....  making eye contact took a long time, and he stopped responding to his name.... but he was still, ALWAYS a joy and lovebug....

TODAY ......... my little lovebug turns FIVE YEARS OLD!!!! 

See next post for his birthday pictures...