Saturday, January 9, 2010

Pity, for Pity's sake: pt: 1....... (Sign the Pledge!)

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My world changed forever, for the better (and worse) ... in 2001. I was pregnant, and one of the only reasons I was staying in my marriage, at that time, was because of that. The changing forever, for the better, would be the baby ... and we're going to focus on that.

I remember the day I found out I was pregnant, I was certain I wasn't. CERTAIN. After 5 years of infertility and miscarriages, there was no way. But Sara (my DR's Assistant at the time) .. came in and said "Congrats, you are PREGNANT!" After asking her if she was serious, I broke down into rivers of tears. It was the worst possible moment I could have heard the news, my marriage was basically shattered. From that point, all I wanted was to see that baby's heartbeat, and to feel some sort of confirmation this wasn't going to be yet another miscarriage. That day came, and I saw his little fetal pole and the heart flickering away, strong as could be. This was it... he was going to stick...

With every ultrasound, my due date would get moved back... a few days... a week.. I was due March 17th, the ultrasound where we saw his heartbeat, they determined I was due March 22 ... If I was due March 22nd, I wouldn't have found out I was pregnant when I did, because I found out a week and a half after he was conceived. The following ultrasound, the due date based on size was much further off then that. So I took the triple screen, which lead to a chance of the baby having Downs AND Spina Bifida.. which lead to an amnio... which lead to me sitting in one of the exam rooms, with my ex-husband, my 5 year old son, and my mom .... when my DR came in and announced.....

........ Your child has something called {Mosaic Trisomy 16} ... he went on to explain it and it feel on deaf ears, I was in shock... I heard "rare genetic disorder" and "happens much in the same way that Downs does" .... and I was numb. Until I heard "Oh and by the way, it's a boy" ....

.... Pity might have been in that room, at that time, but it's hard to tell....  My DR is an awesome guy.  He never let me doubt that that baby would be born..... alive.  However, when I left the room, to numb to even cry ... there were some glances from others, I barely caught them in my tunnel of silence... but they were there... She's been fighting for another baby for so long, now THIS happens...... I could practically hear their thoughts.

What was THIS?  ... a child who would be born with some issues?  Issues I couldn't even be TOLD about because the condition is so rare?   That didn't make him any less special... that didn't make him any less wanted... it didn't make him any less LOVED!

When I got home, I dove into the internet.  Trying to find any sort of information, a light at the end of the tunnel, but I found nothing.  Not until I happened upon the website of the Disorders of Chromosome 16 FoundationTHERE I found {HOPE} ..  not pity.  I even spoke to the president of the foundation, a woman who's child - with the same condition as mine - was the same age as my oldest son.  She sent me {HOPE} in the mail.  Along with a ton of medical documents, she send me a small, brown, kneeling and praying, TY Beanie Bear, named Hope.  I vowed that bear would be next to the baby the moment he was born.  As soon as I could get it there, it would never leave his side.

Then I met with other DRs...  Genetic DRs ...  and I saw cold pity ......  harsh pity.... "This is the way your child will be, no doubt" ... Mentally, Physically Delayed..... No Quailty of Life....  Your Child will most likely die in utero before it's even born...  if not, it'll die in the hospital shortly after, and if by some miracle ... your child comes home, it'll have no quality of life......We highly recommend that you interrupt your pregnancy .....

..... IT? ......  My child is not an IT ... he is a HE..... and he has a name, it's Noah ......   I wanted to shout it so bad.  Yell it ...  at this man who was fighting with me over outcomes and medical issues that my child may or may not be born with.   Over the GOOD outcomes I had read about, children I had read about, and not his cold medical statistics.   And I told him, as far as "interrupting" my pregnancy, which by the way it took me a minute to realize that hew as suggesting that I kill my baby just because he's unique! ...  I told him "That's not an option" ...  to which he shocked me by turning to my ex-husband and asking "And how do you feel?" ...  I felt like yelling again ...  "Who the fuck gives a crap how he feels, I said it's not an option!" and my ex just said "I feel the same way she does" ...  good answer...

Pity was in that room, Cold and Hard ... Unrelenting and Unfeeling.... screaming "I feel sorry for you because I don't think you have the capability to take care of a child like this, so lets hope this child dies on it's own" .. 

But he didn't, he continued to grow, slowly, but semi-steady ...  he would wave to us during ultrasounds, and flip around to flash his little boy parts as if to say "Here is a reminder" ...

And then I was rushed into the hospital sick with Pre-eclampsia, baby was having heart decelerations, things weren't looking good, steroid shots shoved in my skin to help him out... nurses and nursing students coming in and out, pity, pity... thinking "your baby isn't going to make it" ...  "it's time to send you away," my DR came in and said the morning of February 1st.  I was 33 weeks pregnant... "he needs to be born, soon, probably tomorrow" ..  tomorrow, was my Mom's birthday...  My Mom who was beside me holding my hand ...

In a snow storm I was loaded up into an ambulance with a fetal monitor and a nurse, who had been there to help me deliver my first son in the hospital I was leaving...  she tried to keep tracings of his heart-rate, but it was pretty pointless, he was tiny and moving around so much ...  but traces would be caught here and there...  I was scared.  Rushed into the hospital I had never been to, up to 2nd floor where the L&D wing was, and the level III NICU..... a NICU that could handle such a small, needy baby.

Everything was a whirlwind...  meeting DRs, blood drawn, ultrasound done, can't drink anything - you might have him today.  WHAT?  ... Not today, tomorrow.....  but nope, my pre-eclampsia was bad, his heart decelerations were getting worse, the placenta, they found out, was dying...  it was time to get him out.  Rush rush, more people, prepping, shaving, shoving a catheter inside me, coming in talking about chances of death and how this is an emergency, they'll have to do a classic cut to get him out which means c-sections from now on with other children, did I understand .. yes...  there was a chance the baby would die, did I understand ... yes...  they would ventilate the baby and get him to the NICU, I wouldn't be able to see him until later ...  whisked into the OR and the drape went up... I tried not to cry...  they were talking to each other, "should only be a few minutes" someone said... "you're going to feel pressure" ...  I swear that Noah hightailed it under my ribs because they had to dig to get him out ... but there was never a cry, not even a hint of one... no one said "It's a Boy!" or even bothered to stop beside me for a millisecond so I could see him.. all of a sudden "3:45" was being repeated around the room and finally, I asked "what is "3:45?"  and I was told "It's when your baby was born" ...  what?   He was born?  I had gotten there just after noon, and a few hours later, my second child had been born. My head shot around to the closed room, I knew they had taken him, I could see it ... barely ...  and I could see, through the waist high to head window all the DRs gathered around him.   My baby was in there, I didn't get to hear him try to cry, I didn't get to see him... they are telling me he might die, and if he does ... I won't get to hold him alive...  Pity had crept into me..... fear was taking over...... but I pushed it away as quickly as it came, and tried to focus on him, sending all my energy to him.....

I was taken to my room and various Doctors would come in, with reports and updates ... Nurses were in and out....... Pity walked in with each one of them, being unable to say much else then "He's Beautiful" "He's Handsome" "He's a Cute Little Devil" ...  I would ask how much he weighted, they didn't know.  I would ask if he was okay and get "he's stable for now, he's on a vent" ...    When can we see him?  "In a half hour.."

It was after 7pm before anyone came to get the family.  My Mom, my ex's Mom, our Son, my Ex, I insisted that HOPE the bear go with them, it was important to me, so they took Hope ... they all got to go back, they brought me back video and Polaroids, a diaper that wouldn't even cover my hand... Mom would tell me the diaper was so big on him that his Polish was showing...  (meaning his butt crack) ... He was clearly going to be a plumber when he grew up ...

It was after 9pm when finally, I got taken back.  There is no preparing you for what you'll see.  He was so tiny, not an ounce of fat on him...  he was 1lb 12oz and 13 3/4 inches long... he had 10 perfect, tiny, long fingers and ten tiny tiny toes...  he had wires hooked up to him from head to toe, and IV, and a vent ... and he was stuck in a plastic box...

Pity was in that room, with the nurses..... I didn't know it at the time, and wouldn't learn the fact until one of the nurses said something about it at a visit where we returned to the NICU ...  but they hadn't expected him to live through the night.  They were told, he probably wouldn't.

Instead, he relaxed and started breathing on his own, making efforts to where they were turning down the ventilator and after about 40 hours of being on it, he was taken off - and never went back on. 

Noah with Hope on 2-4-02
As time went on ... I stopped seeing Pity in all of their faces, and I started to see {AMAZEMENT} ... as they started to realize that he was an utter and sheer {MIRACLE}... he was nipple feeding at just a few days old and increasing his intake... 

Mommy & Noah on Valentines Day, 
setting up for Kangaroo Care - he hit 2lbs!
He was labeled as a "Feeder Grower" which meant they were just waiting for him to gain weight for him to go home...



His due date, St. Patrick's Day, was great for us because I'm Irish and I went over early that morning to find one of our favorite nurses had taken these to celebrate ...  with the shamrock I had made him, and he was in an OPEN CRIB


And he SMILED ....

And he came home the day after his St. Patrick's Day due date, on March 18th ...  weighing only 3lbs 10oz..
He continued to prove all those nay-sayers wrong.  Slowly but surely he thrived, he excelled and he met his milestones, late, but he met them.

He rolled over for the first time, on September 11th, I remember it vividly because it was the 1 year anniversary...
He started sitting just in time for Christmas ...
He started crawling at about 14 months...
And standing at about 18 months, walking at about 20 months...


We went to San Antonio to go to the first World Congress On Genetic Abnormalities Conference (or something like that) and it was one of the best decisions ...  we met a ton of awesome families... including a lot of families from our DOC16 Group...  and Noah hung on a famous photographer named Rick Guidotti, he called Noah "Little Buddy" ... Rick has made it a mission to show that kids with disabilities are not "ugly" but very beautiful.  His website is called "Positive Exposure" and he is a wonderful presenter.  He took these photos of Noah ...

Noah is about to turn 8 years old, in just a couple weeks...  he's an amazing kid now, his health issues aren't that apparent, but living with the fear knowing that anything can go wrong in his little body at any time, haunts you.  Fact is, we don't know when or if anything will happen, and we can only enjoy everyday and try to count on tomorrows.  His kidney issues scare me, right now.  But otherwise, he's a normal kid.  He struggles a lot with some understanding stuff, we are still working on the fundamentals of reading.  He can sound out a word perfectly but had trouble putting those sounds together.  Math is hard for him to grasp too, but he's such a smart kid - and he gets so excited when something finally clicks for him.

So let's stop PITY...  PITY is 100 % CURABLE .... take a stand against Pity, and sign the Pledge!  I did!

Read:  Pity, for Pity's sake: pt 2

5 comments:

Amber Page Writes said...

What a beautiful post - and a miraculous little boy. No pity here, just a big old high five.

Kristina said...

Thanks for visiting my blog. I stopped here to take a look and am totally inspired by Noah! What an amazing young man! What a great story of love. I think we need more stories like yours out there to inspire people rather than giving parents-to-be the only messages from the doctors.

Keri said...

Such an inspiration! Thanks for sharing such a beautiful story of a handsome young man.

kys said...

That was a beautiful story. It was very uplifting.

I'm going to share the photographer's link with some therapists that I work with. I think they will all enjoy it.

jocalyn said...

Your boys are beautiful. Thanks for sharing your journey. You are one strong woman...that's for sure :)