Sunday, January 10, 2010

Pity, for Pity's sake: pt: 2....... (Sign the Pledge!)

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If you haven't read Pity, for Pity's Sake: pt 1 ..... please do so :)


Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin.  (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ...  the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys.  You can only hope for a happy "normal" life, but realize it may not be a reality.   You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really.  You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into.   Marriage, isn't in the future...  Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized... 

But then I met HIM ...  and my world changed.  We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer.  I had the chance to date him, without the kids getting involved.  He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah.  So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives.  Dennis and Mommy were planning on getting married the following year.   No one else really knew, but we had decided to haphazardly try for a baby together too.  We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding.  We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ...  so September we were going to start trying and I was just waiting for the cycle for August to end.  I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming.  I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's.  Finally, Jenna got on my case, and yelled at me to take a test.  I had already taken one, it had been negative, but just to shut her up, I took one.   As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

 And the lines got darker!


I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result.  A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals. 

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart.  Sure enough, there he was.  I ended up having another one  between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine.  Then came the 12 week ultrasound and yet again, I was watching my due dates travel south.  I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June.  I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure.  Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy! 

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway!  We still plan on having a big wedding someday, but we decided we needed to focus on our family.  I was 18 weeks pregnant for our wedding...  




The day after Christmas, we went in for our 20 week ultrasound.  And just as we were ready to welcome in the New Year ...  we got the phone call that would, yet again, change our lives. 

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it."  Oh GREAT.  "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there.  The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain."  WHAT??  A CYST in his BRAIN??  OOOOMGosh what does that mean???   "It seems to be stable right now, we just need to keep an eye on it."  She couldn't give me any other information, really.  I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt.   Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm.  Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through.   She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head.   I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........  I was terrified.   Something WAS wrong, because he wasn't growing.   As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah.   Only this time, I didn't find any.  All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....)  was stable and they'd keep a good eye on it.  I was having ultrasounds every 2 weeks from then on.  I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest. 


It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable.   But I was ordered the shots for the lungs, just incase.  They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose. 


But Junior and I hung on there ...  and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck. 


I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time. 

Noah had been running a fever, he'd vomit a little, but the fever was so very bad.  He was complaining about a pain in his right side, he was not himself.  The fever was getting lower and going back up and dancing around.  We took him into the ER.  They did no testing.  He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything.  When we mentioned appendicitis, we were told he was to young.  What gets me, is he gave them a urine sample, but it was never run. 

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice.  Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home.   I kept thinking, if he gets admitted, at least we'll be in the same hospital.  Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born.  I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later.  It was April 17th.  I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th.  Then we took Noah to the Ped's department where the Urgent Care kids are sent.  So we got him in, and ended up waiting in the office for an hour.  By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self.  The DR, when she finally came in, took one look at him... and knew something was wrong.  She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him.  When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong.   We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him.  He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.


Pity walked into the room, again, with pretty much every nurse and confused DRs.  Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave.  I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother.   That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another... 

Pity was there then too.  Only by now, I had let all my anxiety I had been fighting off take over.  I was breaking out in tears, I was a mess.  Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't....  he was in good hands, my Mom and his big brother Cal, but I wanted to be there.  But obviously, I had to get Nathan out.  It was time for him to be born and I was scared.  Scared about everything.  

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm.  Word had spread that my other son was up in PEDs but everyone tried to focus on now.  There were questions though.  "Why is he there"  "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR.  It took them 20 minutes to place my spinal this time.  I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room...  and brought along some luggage.  She planned to stay for awhile. 

Things went okay, Dennis finally came in and thought I had to be knocked out.  He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under.  So this would be the first birth of one of his children, that he'd witness.  And he was all eyes.  I told Dennis, I didn't care about me, I wanted him to stay with the baby.  Where ever the baby went, he went.  And to take pictures.  Don't let the baby be alone.  So he did. 

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches.  He came out SCREAMING ..... and I cried.  I cried with joy to hear his little voice, to hear his lungs working ...  to have what I wasn't given with Noah.  They brought him by me, for a quick look-see and a picture...  and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah.  Nathan's experience was the same one I had needed with Noah, but never got.


Then Pity started doing her dance.  For 36 1/2 weeks, he was extremely tiny.   Pity pity ... 

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong...  I heard things like "cleft palate" and "heart issues" and various other things.   Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.


What are the odds of one person having two such dramatically different children with such widely spread health issues...  with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been.   (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born)  All the nurses knew me, remembering me from when Noah was in there.  I had kept in touch with a few of them.  I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could.  I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done.  I knew when to leave him alone, and I knew when I could reach in there and hold his hand.  Dennis, though, was another story.  This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there.  It scared him, just like it does every parent walking into it for the first time.  I taught him a lot of what to do.  How to change his diaper in the incubator.  How to kangaroo, how to tube feed him, how to burp a tiny tiny baby.  He was a pro, though.  He was showed it once, and that was all he needed.




Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date. 



Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line.  I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)


 His tiny hands, and tiny feet amazed me ...

 But he did slowly grow........ he averaged about an ounce a week in weight gain.  That's it... just an ounce.  Sometimes less, sometimes more...  (ages under pics)

 4 months old

 6 months old


 9 months

 11 months


 One year old... STILL in 0-3 month clothes, some 3-6 month


Pity especially came out, after we brought Nathan home and in public.  After he got a little older and the questions would come.  "Oh how old is he?" and I'd tell them... "Really?  He doesn't look that old!"  Well he is.  My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ...  "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask.  I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain.   Then I get the "can it be fixed?" um, no, he has to live with it like that forever.  It could get bigger, it could cause problems, but right now it's stable and we are thankful.   Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.

(some of my fav pics of him, Dancing in the Rain - Taken just after his 2nd Birthday, on his Adjusted Birthday - May 13, 2009 - 2 years after he was due)






Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?"  Especially when out in this Cadillac of a stroller...


 (you can see the seats actually face either way, it's the BEST stroller in the world .. a pain to break down but who cares!) 

And I'd have to say "no, they aren't... there is 16 months between them."  To which I would often get the rubber necking between looking at them, and they would guess who was older.   Usually picking Nathan, because he had more teeth.   Then they want to know what's wrong with Nathan.  Pity comes back, and Nathan now ignores them.  Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to.  Nathan has gotten to be very stand offish to people...  they are okay, as long as they are at a distance.  Please don't get to close.. he doesn't like that much. 


 Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together.  Kaedyn is in 18 month to 24 month/2T clothes.  He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that...   Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...
Here is Nate showing you how long his feet are... (these last 3 pics, btw, were taken just before I published this blog.)


Now that Kaedyn is BIGGER then Nathan, it's hard.   Nathan, you can tell, is noticing.   He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs.   He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well.  It's a type of Primordial Dwarfism.  We have watched Kenadie's story on TLC.   She reminds us so much of Nathan, only Nathan is a little bigger. 

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't.  It's hard, because it seems like each year, the list of Nathan's issues grow with each year.  And grow...... and grow. and grow...   but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

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

5 comments:

April said...

Thank you for sharing your story! You have such special children and they have a wonderful mother!

Lily said...

Thank you very much for sharing your story, I loved reading it, i was completely into it.

well pity doesn't live here right now, lol, so hi, my name is lily, and i'm here if you ever want a new friend ;)

Becky said...

WOW! What an amazing story. These kids were sent to the right mom. :)

CJ Sime said...

I am happy for your outlook. It reminds me of my mom's. My brother has down syndrome and she has never expressed a sense of loss that often evokes pity from one's self and others.

As with most things dearest to us it is hard not to get emotional. The act of writing out our stories inadvertently shows our hopes and fears, for this reason I am sure writing out your story was emotional.

Thank you so much for sharing your story! I love a good attitude and I love cute little boys.

the momma said...

You have such an amazing story! You seem like such a strong person--which is exactly what your children need!
Happy SITS Day!!!