The beginning of the end...

This is my first post of many I hope. I want to get my story out there and provide hope to others who have or are facing the loss of an infant. I have not lost my unborn child yet, but I will soon. Talking about it this past week has helped a lot, and I will really need to continue to get through the worst of what's to come. First of all, here is a little sum up about me:

I am 25 years old. I am married to a wonderful man named Andrew, who is 26. We met by chance in a gas station late at night when we were 19 and 20. The gas station was close to where i was working at that time and was the only one open during the late night. He would continue every night to show up when i did and ask me for my number. I kept refusing, but finally gave in, under ONE condition: i drove. We went for Chinese and to the mall, where he passed my first test: can i control his wardrobe habits? YES! He let me dress him up in a horrible all white ensemble from Structure (it hadn't changed to Express yet).

He proposed to me during my favorite thing to do in the whole world... a bubble bath. I swear if i could live in water 24/7, i would; especially if it smells like lavender!

We were married August 4th, 2007. We had a very humble gathering in a park and BBQ at my cousin's house afterwards. We are very happy to have done it under $1,000. That was Good Decision #1 of our married life together. We planned that within 5 years or less we will buy a house.
Well, 10 months later, we bought our first house! Good thing too because we were also pregnant! We didn't close on our house until August 15th, 2008. 16 days later, August 31, 2008 our son was born! We named him Paighton Neil. I really liked the name Peyton, but i was working in banking sales during my pregnancy and i had opened 3 savings accounts for Peytons; all of which were girls. My name is a little different, and I wanted my son's to be as well. So i thought and thought about it, until i decided that i would also somehow incorporate my God-Daughter's name: Paige.

The first year of Paighton's life was very challenging, stressful, tearful, and spiked my anxiety like never before. At 11 days old, he stopped breathing. He was rushed to the ER in an ambulance. We were sent home being told nothing was wrong, he probably refluxed a little bit. I thought out loud with my husband "uh, NO, he didn't 'just' reflux a little bit, he completely stopped breathing!" Never the less we went home.

A month later, October, he had another "episode" where he was having troubles breathing. During this whole time, he was also refusing to eat. He was hospitalized and tested for apnea. We were sent home with instructions to put him on an acid reflux medication and to seek occupational therapy for his "sensory" issues regarding his comfort ability to eat. We visited his OT twice a week.

At few months later, he had another breathing "episode". He was hospitalized again. This time having to endure watching my son go through scans to test his swallowing and any aspirations within his lungs. This was painful to watch, as my son was strapped to a board, forced to swallow gross chalky substance of some sort, and screaming the whole time. I wanted to die. I felt helpless, only wanting to save my son from what the doctors were doing, but didn't know how.

At 7 months of age, he had another "episode". This one was the worst of them all; going in and out of conscientiousness. He was hospitalized again. He was FINALLY tested for a milk allergy. That came back positive. I had suspicion of more, but the doctors refused to test him due to his age. We were told to wait until after he turned 1 year old.

So we waited, and on his 1 year birthday, during his very own b-day party, he had a reaction to his cake. This was specially made by a cousin of mine to unsure no dairy would be present. i bought special ingredients from the organic section and everything. He broke out in hives and began to swell. We didn't have anything with us, so we just left the party and our guests and rushed to the ER. He was seen right away, but wasn't given anything because his body started to take care of itself and the hives receded.

Finally, he was tested for dairy, eggs, peanuts, cats, and wheat. he is allergic to dairy, eggs and nuts. he has an Epi-pen, which i am thankful we never had to use yet since we are more educated on his food allergies and how to react more calmly in situations where he did get into dangerous foods.

My son no longer sees his OT, he is no longer on meds for reflux, and i have bought a cookbook that is dairy-, egg-, and nut-free so that i may feed my family safely.


The day before Thanksgiving, 2009, we found out that we were pregnant again. I was so excited as we were trying and i have always had the idea of my children being close in age. i didn't tell anyone but my husband of course, and held on to our little secret of joy so that i may gift the news to my mother during Christmas. I bought a new tree topper, an angel, and labeled it "To: Grandma, From: Baby". she opened it up and screamed and jumped so high i thought she would hit the ceiling. everyone in the room was confused, and kind of laughing. it was a funny sight to see. so the news was out. We are having another baby.

as the days went on, i got more and more excited for my ultrasound appointment. i am a person that needs to be in control of everything and prepared for anything. i wanted to know; boy or girl? i just feel more relived to have everything ready before baby's arrival. i was really hoping for my own selfish reasons that we would have a baby girl, but for my son Paighton, i was praying for a boy. i wanted my sons to have a "best friend" type of relationship, plus its easier in the clothes department. I am kind of a fashionista when it comes to little girls. we probably would go bankrupt if we had a girl.


Thursday, April 1st 2010.

I woke up early to go into work. I was so tired from not getting much sleep the night before, knowing that tomorrow i get to meet my baby through ultrasound. I was 20 weeks pregnant! YAAY!

the ultrasound took longer than it did with my son. i didn't think too much into it though. i was a little bummed though that the sonographer couldn't tell it it was a boy or girl... he said it kinda looked like both... but the umbilical cord was in the way... so i understood.
after the ultrasound, we saw Dr. Dennis. she came in with a worried look on her face and said "i hate to be bringer of bad news" i knew right away something was wrong... of course... she said bad news, not good news...

she explained that the sonographer saw an abnormally shaped cerebellum which could indicate either something genetic or chromosomal wrong. the 2nd issue was he spotted spina bifida. OH MY GOD, MY BABY WILL NEVER WALK?!
we were squeezed into an a appointment right away the same day down at United Hospital in St Paul for a closer look by a specialist. the specialist wouldn't say much, wouldn't even tell me the gender, just said "the Dr. will go over that with you" and ran out the room.
the Dr came in and said there are multiple issues going on all at once. she said if it was just one or two issues, big deal, but not a huge deal. but this is a very very wrong BIG deal...

at 19 weeks and 5 days pregnant, i am carrying a baby that will not live.... my baby has extra toes on both feet and the feet are extremely deformed, same with the hands, extra fingers and squished up in a mass of flesh. my baby has spina bifida... but not like normal where it is only in the low part of the back. the ENTIRE spine is open. from bottom to top of neck. since the whole spine is open, its putting pressure on the spine and pulling the head down therefore mis-shaping it and giving it what Dr's call "lemon head". my baby has a hole in its heart. it does not have a gender, kind of a mess of mangled flesh of a penis and vagina together. and there is major excessive amniotic fluid and barely nothing in my baby's tummy or bladder, indicating the baby is not swallowing very well. the last thing is the legs where they attach to your hips, are turned slightly backwards, so my baby's legs are forced out sideways and cant even close them; sitting in like a Buddha position.

the Dr and Geneticist says that my baby has Triploidy and that i could miscarry, but puts me a risk. or if i did make it full term or even prematurely, the baby wouldn't be able to survive out of the womb. and if for some miracle... it did... they (the doctors) will do nothing to help my baby.

we had another perinatal appointment on Monday. we were told if we decide to continue, no one will help us. babies with spina bifida are given a chance by surgically closing the spine. but since my baby's entire spine is open, no one in the state of MN (or any other state) is willing to even attempt such surgery. the Perintologist refused to refer us to other people, said there is nothing anyone can do. Centracare is refusing me to deliver the baby here because they are not equipped or experienced to handle my baby's needs. if i continue, i am forced to deliver the baby at United. United said they will refuse my wishes for a C-section as it is deemed medically unnecessary (baby will not survive the pressure and stress of a vaginal birth). United also said they will refuse any care to the baby once it is born if it has survived the labor and delivery. they will not provide any care to sustain, save, resisitate my baby. they will not close it's spine, they will not even provide it food.

i have no clue what to do... i am so lost, in so much pain... i want to die... but i have a baby boy here now that needs his mommy. i don't know how to be strong for him right now. i cant believe this is happening to me. a year and a half ago, i watched as my son almost died, now i have to make a decision of letting my baby die now... or later, in a more painful way.....

i am now planning my baby's funeral. I need to prepare myself for the worst. I wish there were more doctors, specialists, scientists, or whoever could do to help my baby, and all others who are facing the cruel, heartbreaking diagnosis of Triploidy.

I am pro-life, i am a Christian... what does God want me to do when something so beautiful and is wanted so badly puts my life at risk? risking my living child to lose his mommy and a husband to lose his wife?