Saturday, January 31, 2015

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.....

January Feed Bag Art #2 ....

Here are the rest of the Feed Bag Art (that I took pics of) for the rest of January.  The one at the bottom is the one that we did the night before Noah's birthday on January 31.  (His Birthday is Feb 1)

Wednesday, January 28, 2015

I could Cry ....

This morning's Facebook post on my Facebook.... 
Every year on this day for the last 12 years I start the spiral into the memories that proceeded Noah coming into the world.

It never fails.  Ever....  

January 28th and I'm thrown back 13 years ago .....  I was at the end of my 32nd week of pregnancy.

Pregnant - with a baby - that I didn't know if I'd be bringing home or not.   The baby that I'd been carrying and wanting so badly.  The baby I had fought for a long time.  And I loved that baby every moment I had him in my belly.  Every second.  I relished every movement, every kick and hiccup.

I was told he would die, there was no question about it.  We wouldn't bring him home.

But I had hope.  I did.  I hoped and prayed and believed every moment, but the realistic part of me had to face the reality that I might not bring home a baby.

So because of that, I had very little at home.  We had been given a changing table, we had been given gifts, I bought some stuff from Goodwill, and my mom got us a bassinet and a stroller/carseat combo.  But I got nothing new.  Everything was used, cheap....  and if I didn't come home with a baby, I didn't want to see any of it.

Every time I walked into the baby department in a store, I would touch little clothes and I would pick things up and carry it around at times....  but I'd always end up putting it back.  I couldn't ....just couldn't bring myself to do that.

January 28th was Calahan's first day of Kindergarten in public school.  I had been homeschooling him but knew that the baby was going to be a lot of work ...  so I didn't like the choice I made, but felt like the was the only one to make.

After I dropped him off at school, I drove myself to my DRs appointment.  I had a Non-Stress Test and blood pressure check.  I got there at about 8:30, and I ended up being there until after noon!

Here are the notes from that week....

January 28 – Full Moon - 2nd NST – Blood Pressure 153/96 getting high  - had traceable contractions, even threatened to get a shot to stop them  - and had one heart deceleration  …  Strict instructions to go home, and go to bed, and be back the following morning at 8am for NST number 3

January 29 – Full Moon – 3rd NST – BP 150’s/100’s L  Protein in the urine - Contractions every 2 minutes – Noah has SEVERAL heart decelerations -  DR is admitting me, gives me 1st steroid shot to mature Noah’s lungs in the office – can’t get the baby's Dad, so I call him.  Admitted in the hospital, start 24 hr urine test, fetal monitor   2nd steroid shot given at hospital.  Officially stuck in the HOSPITAL!  8th Ultrasound.

January 30 – Hospitalization – Noah had many heart decelerations and Mom’s BP didn’t get better through the night.  3rd steroid shot given in AM.  Officially Pre-eclampsic-  Not going home until after Noah’s born

January 31 – Hospitalization – 4 AM Noah’s heart decelerations are worse, they have my put on the O2 mask for 2 hours and put in an IV.  1 PM- Dr. comes in to do amino to check Noah’s lung maturity.  9th Ultrasound during Amino. Noah thought the needle was a toy and tried to play with it.  Fluid came out a pale yellow.  Instead of waiting the normal hour and a half for the results, we had to wait 10 hours.  Found out Noah’s lungs were almost mature and there was biliruben in the fluid.

February 1 – Hospitalization – DR came in AM and told us he was no longer giving us the the choice of staying or going to better hospital 2 hours away – he was sending us.   Transferred to Marshfield’s St. Joseph’s Hospital.  10th ultrasound was given, baby’s weight estimated to be 2lbs.  Blood tests taken.  DRs discussed, and came back with the news……. Emergency C-Section, NOW. (The Placenta was failing)

Noah Alexander was born February 1st 2002 at 3:45 PM
1 lb  12.2 oz  ~ 13 ¾ inches  ~ 26 cm Head Circumference
APGAR   4 @ 1min  ~ 8 @ 5 min

I remember calling my mom on the 28th and telling her what happened, and she said "Do I need to look for a plane ticket?" and I told her no no no .. not to worry ....   and the very next day I called her from the doctors office crying - she answered the phone and all I said was "you need to worry now" .... and burst into tears.

I have to say that Noah's pregnancy, his birth, him being my first Preemie....  it was all traumatizing for me.  It was all worth it, don't get me wrong.  I wouldn't change anything of it except maybe one thing....  but I'm so thankful to have this little boy in my life.  In our lives.

Saturday, January 24, 2015


.Double entry day ... woohooo..... yep yep ...

So two days ago, Nathan announced he had a loose tooth!  This is his first (not removed by the dentist) ....  so it's super exciting!!!

Well, yesterday he could push that sucker almost all the way out of his mouth!  We did a video, it's on our youtube channel .....   but here it is for anyone who wants to watch.  Um excuse the burping...  but at least he has manners! LOL

Well, this morning, he wakes me up and tells me -- "I LOST MY TOOTH!"

I guess Daddy and him were on the computer this morning, and he was playing with it, and all of a sudden Daddy heard something hit the desk.  It was Nate's tooth!!  LOL....  Nathan grabbed it and immediately put it under his pillow!!  Oye....

Thursday, January 15, 2015

Nathan has FAT!!! Wowzah!

.So ....  just a little bit of back history.

While I was pregnant with Nathan, his pregnancy mimic'ed Noah's but there wasn't anything (genetically) that shows up through the amnio.  The only things that Nathan was diagnosed with prior to birth was Dandy Walker, 2 Vessel Cord, and IUGR.

Since birth ..... he has been diagnosed with the following.

Nathan's Medical Issues:
He is almost 8 years old and just about 38 lbs (depending on the scale) and 3 foot 4 inches thanks to daily injections of Human Growth Hormone. In Nathan's short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency, and Autism.  Nathan's prognosis: Is completely unknown.  We just take every day as it is, but we think it's pretty good.  He just has to suffer through a lot.

So  growth has never been easy for Nathan.  After he came how he would average about 1/2 an ounce or an ounce a month.  Which never made the nurse that came over happy.  Frankly, didn't make me happy either.  But I knew we were doing everything we could

So G-tube got brought up initially and I bucked.  I had my reasons.  Nathan was born with a cleft palate and getting him to suck on a bottle was HORRIBLE hard.   He came home with an NG Tube.

Which is a tube that goes in his nose, down the back of his throat and into his stomach.  This was not a fun process, it had to be changed (at least) every three days and with him, it was like three times a day because he kept pulling it out.

But I worked REALLY hard to get him to bottle feed and I got him to!

And we worked really hard to get him to eat food.

And sometimes that wasn't easy at all ....  there were things he would eat, things he wouldn't eat, he had issues with tastes and textures and smells, and things could change from day to day sometimes.

 But sometimes...... sometimes it was a lot of fun :)

But he still didn't gain weight much.  He's gain a few pounds here and there....  but just not so much.  He followed the RSS curve.  But every time he had surgery, he'd lose weight.

This is his growth chart from about when he was almost 3 years old.....  the bold black line on the bottom is the Russell Silver Syndrome curve.  You can see he follows it pretty close.  (Feb 6, 2010)  The line above that is the 3% line on the "normal" chart.

It took us a long time to agree to a G-Tube.  But we did.

Nathan was about 28 to 30 lbs the day of surgery (depending on the scale.)

A lot of my friends and family were shocked by this picture.  Usually they see him in pictures with clothes on and just never realized how tiny and skinny he was.  This was right before surgery so he wasn't very happy.

Now, I took these today.  It's a little over 6 months since his surgery (June 24, 2014) ... which is when the above picture was taken.  He started tube feedings on July 10th, 2014 ... so it's just been 6 months and a few days since starting that.

So 6 month progress.

Amazing isn't it????  A-M-A-Z-I-N-G!!!

Even though things have been tough since getting it - infections, sicknesses, And sometimes he just doesn't tolerate it well, so he gets tummy sick.  It sucks.

But the change is AMAZING!