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 

April 17 ~ Doctor Appointments

MRI, Neurology (all Nathan) … Endocrinology added (Nathan)

Sorry I didn't update right away last night (written 4-18).... I was so tired :( I still ended up being awake until almost midnight.

Anyway .... we left the house at 6:45 am ... getting to the clinic at 8:30...walking back out the door at 5pm, getting home at 7pm. Oye!

We got there and Nathan got the Cloral Hydrate ... and thankfully did NOT need an IV this time. It took awhile for him to go to sleep but he finally did. So off to the MRI he was whisked while Dennis and I got sandwiches - then went back up to the room. It wasn't very long after we got back up to the room 40 minutes later or so that he came back into the room. While the nurse was doing something, he woke up - hates being messed with. She had put some patches on his arm to help numb the skin just incase they had to do an IV and for the blood work that had been ordered. So after she gave up and realized he wasn't going to pass back out, Dennis and I got up an were talking to him. Lab came up and Jenny (our sedation nurse) asked if they had all the orders. Apparently it wasn't just genetics ordering tests, but neurology too. Then it came to light that - our appointment with neuro had gotten switched from 1:45 to 11:30 ... well... Nathan was still in the MRI at 11:30... so since he didn't show, and they didn't call (not knowing that the appointment had been switched) ... then he got marked as a "no show" and the labs were taken out. (rolling eyes, what a mess) ... so after we got all that situated, Nathan got poked AGAIN for the neurology labs.

After Nathan woke up, we were basically told we'd have to go back to our original appointment (the DR had a conference or something until 2) ... so we walked up and down the hall outside of Neurology while Dennis sat in the playroom with Nathan ... Kaedyn was tired, was the only way I could get him to go to sleep... so after he did - it was a little bit before we got called back.

Basically - Dr. M said that the MRI came back good - there was no signs of hydrocephalus and his Dandy Walker was still stable (whew!) but when she had run the labs, checking his hormones and other stuff... his thyroid level came back showing hypothyroidism, but since it was just one blood test, and slightly elevated, she wasn't sure if he actually had it and it can be a sign of migraines (which we have been suspecting) ... so she decided that she wanted us to see the Endocrinologist right away and talk to him about the Growth Hormone and so he could keep an eye on him starting the migraine med that she was going to start him on. She decided to go with a med that one of the side effects is to make you more hungry, and hopes he gets that side effect. He's starting out at a tiny bit once a day for a week, then the same tiny bit twice a day for a week, and then the following week doing it three times a day which is where we'll be at. She wants me keeping a migraine diary for her too, for him. So I asked her about my suspecting Autism and when I handed her the list I had made up, she nodded in agreement and said, she agreed and he is showing a lot of key symptoms. So she was putting in for an assessment at the Autism clinic - which will take a few months to actually happen. So I'm going to keep that diary along with his migraine one. She called Endocrinology and we couldn't see him until 4pm - so, we were stuck there for awhile longer.

Made some phone calls and then settled down for another long wait. Once we got called back, he did a bunch of measurements said that even though it doesn't look it, his head is larger for his frame and he really does fit the symptoms for Russell Silver Syndrome (which is one of the things that genetics is testing him for but we won't know the results to for several months) ... anyway - he said based on what he was seeing, he thought that Nathan would be a great candidate for Human Growth Hormone. He wants to do further testing for the thyroid issue to see if that is a true thing, or if it was just a fluke today... and some other testing, and then he thinks in about 6 months, odds are, we'll be starting it.

HGH is a daily injection so that means that Dennis and I will have to learn to give it to him.

At this point..... I really just want to know what else this poor kid could have wrong.

And it's driving me insane that when I was pregnant with Noah and we found out about his MT16 I was told he would be so mentally and physically delayed it wouldn't be worth it, and was basically made to worry - and with Nathan, when they discovered the cyst and 2-vessel cord at the 20 week ultrasound, they told me "not to worry" that "everything would be fine" ... and now he has this coming up and that coming up and more diagnoses and more things going on then Noah EVER had. Noah was in the hospital more, but I feel so bad for Nathan.

When we tried to pick up the medication for his migraines - we were told they had to order it, so we asked them to send the prescription to the pharmacy at home, and we'll go through them.

Basically - that was it. By the time all that was done I had two very tired babies...

Honored.... & News...

I have been asked to write up Noah and Nathan's stories... sharing the ups and downs, but highlighting their fights and positive outcomes :)

Benotafraid.net An Outreach to Parents with a Poor Prenatal Diagnosis

I already have an article written about Noah's journey but I haven't yet written one about Nathan. So I'll be reviewing and working on that :) I'm really excited and very very honored!!

In other news.... I found out recently that I am................

Yep.... Here is Nathan learning the news....
He's not real impressed...

How'd you like it if you were the baby and found out that you wouldn't be for long!?!? LOL... They will be 16 months apart... we are currently wondering if it may be twins due to my high hCG numbers... we'll see... I mean they aren't SUPER high but they are definitely higher then what Nathan's were.

We are excited, due Sept. 20 - but due to repeat c-sections they probably won't let me go past 36 1/2 weeks agian like they told me with Nathan ... in that case, it'll be the end of August.

I am scared to death right now though.... not in certain ways, but I've had 13 miscarriages over 12 years... I will not be able to breath until the baby is born, however the weight of worry on me will ease through the time... seeing the heartbeat on ultrasound... getting into the 2nd trimester when miscarriage factors drop dramatically... starting to feel the baby move and kick, daily reminders that everything is okay... getting past the amino ... getting past 24 weeks when the baby is considered viable for birth... and finally - the birth of the baby when I can finally breath and have all that weight lifted off me.... in which case, all new worries start .. but good ones :)

I am - at this point - just hoping for a nice healthy fat baby.... that I can put pink on, but even if it is another blue baby, I'll still be happy :)