Formal Results...

Maybe I was feeling a little too 'safe'; a little cocky about Elijah's future. I was hoping, and thinking that he just HAD to be mosaic triploidy...

Tonight's post is going to be short... I mean really short...

The formal results are in from the amnio test. FULL triploidy is confirmed...

The geneticist said in her 32 years of experience, she has never been wrong about her amnio test results...

I can't even cry if I wanted to...

Thanks God.... thanks a lot...

Games

For every family, there is always that one favorite game. May it be a card game, board game, electronic game, or just a simple made-up-on-the-spot game; young children are good at those kind. When I really take a look at life, I mean really study it with a magnify glass, I see that we as humans play many games within ourselves and each other. Our opponents: friends, family, co-workers, children, strangers, and worse of all, ourselves. Someone as simple as pulling out in front of you while driving on the highway is an opponent. Your own mind can turn into your opponent.

It is our choice, a decision to be made again and again every day, if our opponent is to be our teammate. To work right along side us as an equal. That then leads into another choice, the decision if our opponent-turned-teammate is to become labeled as more or less than ourselves. Don't fool yourself, everyone does it. It is human nature, when we hear or see someone doing or saying something we view as horrible, we take a rhetorical peg on our board and knock them down below our own peg. It works the other way too. We, as humans, automatically put people of certain types on the rhetoric board of pegs, higher, much higher than our own peg. This is done without even knowing the person. How can that even be? Without knowing someone?

If we really knew anyone, I mean really know them in the way God knows us, there would be no board or pegs. We are all equal. Then why social status? Why the status of education, religion, or even convenience? Here is what I mean...

Take Monopoly for example. The amount of property and money you have places you as a higher status then your opponents in the game. This works for real life as well. People seem so impressed with big fancy houses and a fat pocket. What does that say about the person who holds that in his hands? How many people's pegs did he have to knock down to get "up there"?

The game operation comes to mind. The steadier your hand, the better operator you are. How does one doctor become better than the next in real life? How many opponents in his life did he have to knock down? I would rather think how many lives did he save in ratio to those lost. You cant save everyone, but you can make choices, the decision to save and act upon it. You can say "it is not over, until it is over".

I am saying, it isn't over until it is over. I was told my baby's spine is 100% open; head to butt. This was a 'guess' from a 2D picture using sound waves. Then I was told, no, it isn't, just the lower sacral lumbar area. Again, using the same technique. So who is right? Which doctor is better than the other? I say the best doctor is whom choose "it isn't over, till its over". Now I am being told my baby is Triploidy. Well, in reality, yes, I have been told that. But I have only been told that for the first 3 pairs or chromosomes. The "full" picture of the amnio test results have not been completed yet. Below is a chromosome picture of a "normal" human. I am being very vague, by the way. I am not a geneticist...

A normal person gets 46 chromosomes: 23 from dad (sperm) and 23 from mom (egg). The last pair, which is the 23rd, decides the gender of our babies. With full triploidy, every single one of the 23 pairs gets a extra chromosome, resulting in 69 total chromosomes. Below is a picture of a "full triploidy" human.

Now, my point... I have been running into another term called Diploid Triploid, also known as Mosaic Triploidy. For someone who studies numbers and not biology, like me, this is obviously easy to disregard when looking for your own answers. I cannot rely on doctors only, I have to become my own opponent and teammate in the game of life. I do math, not science. Mosaic Triploidy is when some of the 23 pairs are normal and some have 3 chromosomes. I have mentioned before of a 24-year old man that has triploidy and he is still living. He has Mosaic Triploidy. I have been finding more and more children with the mosaic version. For the most part, and from what I know and understand, they live normal lives with a few adjustments. They seem happy in pictures, they are beautiful with their families and older/younger siblings. Their parents are happy.

I want to be happy. I have not received the full amnio test results yet. I am still waiting. But even then, am I going to be satisfied and content with them? I am praying for Mosaic Triploidy. I know that sounds odd, why would I pray for such a thing? But from what I am seeing and understanding mosaic has a better chance, and chance of quality even, at life. It isn't over until it is over. Over equals the death of my baby. I still have hope. Miracles can happen...

I have an uncle that when he was in his 20s, was diagnosed with Hodgkin's Lymphoma. He was told he had about 3-5 months to live. He refused treatment, and basically made the choice to live the rest of his short life "well" instead of "sick" from treatments. He is alive today; in his 40s. I never knew this about him until about a week ago when my two aunts were trying to make a point, trying to make me see that miracles happen all around us everyday and we don't even know it. My uncle played the game of life. Although he may be winning now, someday, he will cross the finish line. Possibly happier, slower, yet wiser, but finished. We all have to finish our game someday. Where we place our peg, and effect those pegs around us, will always make a determination in how our game is played.

Some pieces are placed by strategy. We go to school, then college, maybe volunteer in our community. All these things and those that are similar are conscience choices we can control. We decide when, where, and how long. Some moves in life are solely by risk. We make the decision to move our peg in a manner we cannot control. Remember that really cool tattoo you thought you would love forever and ever? Well, I played and I lost, kind of. I got a tattoo in honor of a person. It didn't work out; now no person and a really annoying tattoo. This is a very innocent teenager thing; head over heals in love. It didn't stop me from finding my true love; my husband. What about those who get tattoos and then now are fighting for their life because of a dirty needle? You cannot control everything! You can control who you marry, but you cannot control that person alone. The person you marry is your teammate, yet can also be an opponent in your game of life. It is your choice which role your spouse plays.

Then there are moves in the game of life that you do not make, you cannot control, you do not even see it coming. Chutes N Ladders was always fun. The excitement of rolling the dice, not knowing what number it will add up to when it finally stops spinning on the board. Your opponent counts them up, 1, 2, 3, 4, 5, ... He moves his person 5 pieces. Going up... and up...and up. He stops, at the top of a slide; down he does.... What a shame. So does he just stop there and say "I quit!"? No. He waits for his next moves, rolls again, and moves on. We as parents have the responsibility to teach out children that it is okay to fall down, more than once even. It is okay if we have to take a few steps back in order to get ahead. It is okay, as long as we keep going. We have to get up, brush off the dirt, and move on.

Sounds easy right? Well how is a person to move on knowing that there are more slides ahead, and chance might have its way and we would fall victim to it all over again? Maybe if we knew of all of the slides that are relevant, those that will actually make us fall, we can better catch ourselves. Its those slides that magically appear right under our foot as we are about to take a step up. We don't see it coming, we over react. Ever pick up a close to empty milk jug that you were expecting to be full? Your arm swings it straight up and you almost hit yourself in the face; maybe you actually do hit yourself in the face. You overreact. Funny, but still tragic if someone saw you do it.

I feel right now that my life has entered the "charades" episode of the game. All these people, whose pegs are above mine, are overreacting, trying to make decisions for me. My job is to guess who they are, what role they play. It is confusing because I see them, but I cannot hear them. I see their mouths moving, but no sounds. I see the frustration on their face. We are becoming opponents; enemies in the game, and they do not even know me. I do not know them. Yet they feel they have some say, well, say that would actually provoke action, to determine where I place my own peg. I have asked people for their opinions, yes, I admit that. Therefore I cannot judge any of those who have done so. I do not judge them. I try to see it from their view, but I will place my own peg where I feel it should be placed. I ask those to return the favor; do not judge me, you do not know me.

The placement on my peg in regards to my precious unborn baby boy, Elijah, is not up to me. It is not my choice, although it is my decision. The decision of life; it is not over until it is over. Even though I am daily preparing myself for the death of my baby (my painful slide I may take) I am holding the dice in the palms of my hands as I shake them with all the strength I have. I close my eyes tightly to pray to God; hands still shaking and shaking. I am afraid to let go, for fear what might add up. Is my slide due next, or will I coast for now? The power of prayer may give me one more day of pregnancy. Elijah is extremely active, almost more than Paighton was, especially at this gestational age. The power of prayer may give me mosaic triploidy diagnosis instead of full triploidy. Again, the amnio test results are not yet finished. The doctors, who peg themselves above me, have already had their "oops" moment. I do not peg them above me in terms of knowing what is best for Elijah, but I do peg them above me in healing my Elijah. It is up to them to choose. What will their decision be? It is not over until it is over. Flat line.

Will the power of prayer give me a whole month, maybe a whole year, of holding my sweet Elijah in my arms, alive. What is better? Four Oreo cookies, or just one Oreo cookie? Easy right? Four. If only it were that easy....

An angel at work today gifted me the strength to continue praying. To not give up, just as I was becoming weak. Just as I was about to turn off the communication because I thought I had lost the signal. I thought I was talking to no one. She could not foresee my weakness, yet she made a move in her game of life not knowing it effects mine. Not only did she gift me strength to pray more and more, but also supported and encourages the belief that prayers do work. They are answered. Maybe not right away, like the flip of a light switch. Let there be light! No. My slide will come... but I have many people playing the game along side me, making their own moves, showing me that going forward is possible. Going forward matters to all those in the game, like my husband, my 20 month old son, my parents, and even Elijah. His life depends on my life.

I ask all of you to find your reason to pray, and pray. Pray that God guides you as you make choices, risks, and pure luck in your own game of life. Please be courteous of those playing, taking care not to knock down their peg; they might have a harder time getting up than you.

Tonight, I pray to You oh Lord, please bless me now with life. Amen.

Work

Monday, the 26th is officially the day I go back to work. I am so excited. Not only to put some normalcy back into my life, but also to take away some thought and redirect the energy to something more productive. There is no reason I cant work, it makes no sense and does me no good to sit around feeling sorry for myself.

In a way, I am nervous to go back to work. I worry about things I cannot control. What if something happens... with me, or the baby... at work? The other thing I worry is seeing my co-workers that are pregnant, and how happy they are. Knowing they get to hold their babies, and I cant mine... just tears my heart apart. I have been uncomfortable around pregnant women lately, even newborns. I feel my body begin to shake, my eyes swell, and there's that lump again in my throat. I am happy for my friends and co-workers that are expecting. I really am, but I am also very envious. God says do not covet thy neighbor... it is so hard not to at times...

Last night I had a very strange dream. I dreamt that Elijah was born, but I couldn't find him. No matter how much I searched and searched at the hospital, I could not find him. Finally, I entered a room, and it had multiple queen size beds. Maybe about 10. In the beds were babies, about the age of 9 months; all lined up at the head against the pillows. They were cooing and grabbing at their feet. All babies were naked, wearing diapers only. Why queen beds, I do not know. I saw one bed with a full grown man in it, with about 5 babies lined up next to him. He was sitting up, leaning back against the headboard. In his arms, was Elijah. He was holding Elijah lifting him up and back down again, making faces and funny noises at him, like a game. He was smaller than the other babies, but laughing and kicking his obviously deformed legs wildly like he was trying to swim in water. He was laughing, a huge smile on his face, biting at his hands as if he had butterflies in his tummy from too much excitement. I stood in the doorway, watching. I didn't want to disturb them, Elijah was having too much fun. He was happy.

I woke up to my husband's alarm clock ringing. I felt odd. I wasn't sure what emotion my mind was trying to run through the rest of my body. In a way, I interpreted the dream as if Elijah will live. He does has a chance. I was happy. Then fear set in. I was afraid again for how Elijah's life might effect my own, and my son Paighton's. How will I juggle work? How will Elijah's life be? Will he be happy? Or in pain?

I read a story of a 24-year old man who is living today, diagnosed with Diploid Triploid Mosaic Syndrome. How that differs from Elijah's Triploidy, I do not know...
What I do know is he has the mind of a toddler, and gets very upset often because he does not understand his physical limitations. I am afraid of having to relive this nightmare for 24+ years with Elijah. Watching him grow up, but never really growing up.

Was it selfish of me to feel disappointed that Elijah was alive in my dream? In reality, I do want him to live. I don't want my baby to die. But I also don't want my baby to suffer, be in pain, and have a life that isn't much of a life to begin with. By the way, who ever set the standard, the 'norm' for quality of life anyways? When and where was it determined that a life is a life, and when a life is no longer a life? Who determines this?

So in fear for both of my sons, I also fear the change in life that effects my work. It was hard enough trying to juggle my work schedule with my son's appointments for occupational therapy, well-child, ill-child, allergy testing, allergic reactions, hospitalizations, accidents at daycare, what have you. The list goes on. Thankfully almost all of these have stopped. I have never taken a day of PTO for myself just because.
How will I juggle now my work schedule with Elijah's many, upon many appointments for who knows what yet...?

No matter my struggles God puts before me, I will try my best. I will trust in Him to always find a way for balance. I just have to be open to hearing and receiving Him and understanding what He wants.

Life is hard. I have a friend who also keeps a blog. In it she spoke about a theory of life; her own personal view. It is something along the lines of a person's purpose in life is to die. Meaning, we are here to live and serve our purpose, once our purpose is done, we are no longer needed here on Earth. So, we die and God takes us home. God is very particular in how we go home, and when. It all means something, we just need to interpret it correctly. Understanding death is another hard part of life. Sometimes we just simply do not want to understand it. Seems like being a mother, my purpose is to make sure my children live to serve their purposes. So with that said, what purpose would Elijah's life have?

Working with disabled adults in a group home setting, I have seen true testaments that those men have purposes. I am a better person for knowing them. I enjoyed going to work and seeing them, they uplifted my spirit every day. But at the end of my shift, my heart would sink as I drove home. Why did I feel so sorry for them? They were happy, they were not sorry for themselves, so why was I?

I hope that no matter the length of Elijah's life, that I will see and understand his purpose and help others to see and understand it as well. If Elijah outlives me in this physical world, I hope he will let his purpose shine and infect others with love and life of their own.

Work, I will see you Monday. I hope I don't fall asleep since my schedule has been so out of wack...

Blanket

What comes to your mind when you hear the word "blanket"? I think of warm, cozy, soft, and most of all, sleep. What I see right away is my son's blankie that he drags everywhere. He likes to chew and suck on the edges, and for some reason feels the need to chew on it while he just snuck a cracker into his mouth without Mommy seeing him do it. Needless to say, his blankie is disgusting. It is close to impossible to wash it; I don't dare get caught.

Here he is with his favorite blankie. Not even during a tickle fight will he surrender it...



In a way, it brings me comfort when I see him pick up his blankie, meticulously feel around the edges until he finds the perfect spot, shovel it into his mouth, his eyes slowly close only halfway, and then he lays his head down into my lap. It is like no other feeling, I feel like my toddler is still Mommy's tiny little baby. He needs me and I need him more. I never want him to grow up. He can have 20 temper tantrums a day as long as he stays young; never grows up... never dies...

I asked my grandma and aunt to make a special blankie for Elijah. I start to cry when I think that Elijah may never get to see or feel it. My heart drops and I feel a hard lump in my throat when I think Elijah will never get to drag it around or throw a temper tantrum because I am attempting to run it through the laundry. He will never get to fight his sleepiness, and come lay in Mommy's lap while clutching his blankie in his hand and holding it against his face. He will never really know just exactly how much his Mommy and Daddy loves him.

Today I received a package in the mail from a complete stranger. I was aware that something would be coming, but I was not in any way prepared to open it and see what's inside. I brought it in the house, and set it next to the couch. I tried to ignore it; I kept walking past it as I played with my son, did dishes, and made dinner. I caught a glimpse of my son trying to open a few times. It brought a smile to my face knowing his curiosity is one of his cutest features. I waited until my son went to bed to open it. I knew I would need to be alone. Inside the box was a very soft blanket, and on the blanket was a tag stitched in. It said "Luke's Blanket of Love". Luke lived for 2 months. Now Luke's mommy is making these blankets in his memory to help bring comfort to other babies and their mommies. As I read the card attached to it, I cried so hard I couldn't see any more. I grabbed my son's red zip-up hoodie laying near me to dry my tears because I was too afraid to drop tears on the very new blankie. This blankie is meant to bring comfort, but it didn't. It brought more hurt, sadness, and more hate. I am so angry. Angry my son will not know or understand the meaning of this blanket.

Also in the box was another blankie from the Prenatal Partners for Life. It is a soft baby lamb, just the head and arms, and its body is a soft off-white blanket. On the blankie is embroidered "Child of God". Again, first sadness, then anger. I trust God, really I do. But He is really trying my faith right now. I am so angry with Him, and I want to lash out and say horrible things to Him. I want to hate him, but I cant. I need Him to hold me and tell me everything is going to be okay. But then I want to punch Him in the face. My emotions are such a bipolar mess right now. I am confused between feelings, and cant find a balance amongst them all.

The box also held a CD of 7 songs. I am not sure I can listen to it quite yet....

As I sat there with the contents of the box laying in my lap, trying to catch each tear from falling on these wonderful gifts, I neatly packed them back into the box. I closed the top, and it felt like I was shutting my baby up in the box. Is this how its going to be? I will have to "pack" my son away? I added to the box the coin with Elijah's name on it from my sister-in-law, and another blanket I purchased impulsively at a specialty baby store.

Blankets are meant to stop tears and bring warmth, yet they seem to bring tears and a chilly sense of loneliness for me.

Was I really such a horrible person that God felt it necessary to put me through this? Or what about my unborn son? What did he ever do to deserve this? Nothing...



For more information on the gifts I received today, please visit their sites and support their causes. Because of loving strangers, parents like me can find some comfort and support...
http://www.prenatalpartnersforlife.org/ and http://www.lukesblanketoflove.org/

Tears

My glasses feel like a really dirty windshield of a fast moving car at night; windshield washer fluid is empty. I try to turn on the wipers and wash away the mess, but it just smears it across my view, making things harder to see. Making it dangerous to move for fear I might make the wrong move; a wrong decision.

The only thing is my glasses are not a windshield. I wish they were. Instead they are just my glasses; some stupid materialistic piece of plastic and metal screws. Stupid glasses. They are attached to my face always, reminding me I am flawed. But I am still living. My flaw reflects into my own eyes the tears that never stop. They run down my face, making my skin feel tight as the path they make dry up. I cant stop crying. My wet eyelashes smear my tears across my lenses, as the light in my room magnifies the spots and blinds me. I am tired of cleaning them, tired of crying; just tired...

Today my appointment down at Abbott was okay I guess. Nothing changed of course. We did the transfer of care, and met with the Geneticist again. I was able to finally tell not only the geneticist, but also the doctor how upset I am about the whole "miscommunication" ordeal. Not only that, but also the MAJOR roadblock one Doctor was for us, telling us "no" to every request we made for another opinion, another ultrasound, more testing, more anything...

Hopefully the entire Allina Perinatal group of doctors will be getting together soon to discuss our case and re-evaluate themselves as doctors; they need to be more careful when diagnosing and leave their personal beliefs/opinions at the door before telling parents of bad news. Although their 'hunch-diagnosis' was correct... yes, my baby does has spina bifida, and yes my baby does have triploidy after final confirmation of an amnio; they were not only willing, but pressuring me and making my decision for me that termination was the only option. They made this decision for me BEFORE I even did the amnio. So, in other words, they were willing to terminate a life on a 'hunch'.

I wonder how many other women out there have terminated their pregnancy because they felt they HAD to; they felt there was no other option. There are options. I now know that.

I am still Pro-Life, but I understand better now for choices. I understand, in certain circumstances, whether a diagnosis or a 'pressured decision' from a doctor could lead to termination. I cannot judge without knowing the whole story, all the facts, risks, pros/cons, what have you, about they 'why'. I cannot judge.... ever.... I am so heartbroken for those who have or have not terminated after receiving news that their precious baby will not live. I cry for them, for their babies.... I cry for myself... I cry for my Baby Elijah...

Last night my husband showed me a website. http://www.projectcuddle.org/. I can not believe people actually throw away babies. It made me angry, very angry. I cried. I am happy to know that there is an organization out there trying to stop it from happening from the beginning. I wish I could save ALL the babies in the entire world from any kind of pain or suffering. When I was younger, I would try to save anything that was alive. I cried when my cactus died and I had to throw it in the garbage. I stayed up all night feeding milk-substitute from an eyedropper to a kitten that was only a few hours old; I saved it from two dogs that stole it form its mother and were using it as a frisbee. I knew I wouldn't be able to sustain life, so I brought it to a shelter. Once I knew they would just put it to sleep, terminate, I then took it to my local vet who cared for my cats. She said she would try everything she could. I never did ask how the kitten turned out, I didn't want to know. I cried as I walked out that day, leaving the kitten behind...

That story makes me think of how I might feel the day Elijah is born. What is it going to be like to go though all the work and pain of labor and delivery, only to lay there for the rest of the night alone, with no baby. The next day, going home, being wheeled out in a wheelchair... empty handed... no baby... I rather walk the plank. Talk about the walk of shame. I feel shame for not being able to save my baby's life and fix his pain. I feel like a failure not only as a woman, but also as a mother.

So I have yet another decision to think about before I make it. When, and if, Baby Elijah is born alive I have 2 options. Option #1, Elijah's spina bifida will be operated on immediately. If I choose this, I may be causing more pain, and losing more time I could be spending with him. He would be hooked up to wires and tubes. Option #2, Elijah will not be operated on. Instead he will live out the reminder of his life in my arms, with me. I get MORE time to see him, touch him, kiss him, smell him... I get more time...

All I want is my baby. I want to see my baby's eyes open, looking into mine. I do not want him to feel pain, suffer in any way.

I wish that with my tears would come the emotions that I am feeling. The emotions could run out of my body, being flushed from my soul as the tears fall. As I cry a this very moment, my emotions are left behind, inside me; eating away at every once of energy I have left. I feel sad, worthless, confused, frustrated, pain, hate, lots of hate...

One thing... just one thing God... please give me all the pain and none to my sweet, innocent Baby Elijah.

Sleep

Today is Monday. Ugh. All I feel like doing is sleeping, but I cant...

My husband finally was tired last night and wanted to sleep. So unlike what we usually do each night since April 1st, I wasn't able to lay in bed numbly browsing the Internet as the flicker of the TV washed over us. He wanted to sleep. I couldn't.

I went outside for a little bit. The weather was so nice. A little chilly, no wind, calm, quite, no bugs; nice. It didn't last long. My mind got the best of me. All I could think of was Cujo the neighbor dog cornering me again (I cannot wait for the neighbor to finish his fence!). That, and my 'view' was the cemetery I live next to. The site of it left a hard lump in my throat; making it difficult to swallow.

I tried to organize my office, but got overwhelmed just by looking at it. So I tried to scrapbook. That didn't work either. The first picture I pulled out was of my son at 7 months old during his last hospitalized visit with an IV in his arm. His arm was wrapped and taped to a board the same size of his whole arm to prevent him from bending it and pulling out the IV. That was a hard 4 nights. Plus it didn't feel the same scrapbooking without my girls. I felt like I was cheating on them. Its not as much fun without them.

For those who know me well, can understand this next part. But if you do not know me, well, try your best to understand. I am a weird person; I take education very seriously. If you don't use it, you will loose it! Since sitting outside, cleaning my office, or even scrapbooking didn't help, I broke out my college calculus textbook and worked an entire page of problems. I should have just don't that first because it worked. I always feel better if I give myself a good mental challenge. I am not one for physical challenges; I never feel the need to prove anything in that area. I know I am a wimp. A whole 105 pounds of pure WIMP! Not that I am ashamed of it. I am however ashamed of someone being smarter than me, especially when that subject is math, physics, or english/grammar (by the way, my grammar has suffered greatly since my college days; laziness got the best of me). I am proud when people call me a math geek. And no, I was never teased in high school or college for being smart. I never did understand why that is for some people. I did however get teased when people find out I kept my college math and physics textbooks for my own personal pleasure. That's okay. Again, I am not ashamed of anything.

After my math problems, I felt more relaxed and thought I would try the "sleep" thing again. It worked. I even felt more refreshed this morning, waking up to the sounds of "Da-Da!" coming from my son's room. Little did he know he was going to get Ma-Ma instead! It was nice to get half-sleepy, drooly kisses. They are the best kind.

This morning was a first for something I didn't expect. I dropped my son off at his daycare and he wiggled to get out of my arms. As I set him down, he ran up to his daycare lady with great joy to see her and jumped into her arms squealing like a little piggy; the cute baby kind. Maybe he has done that before, I don't know. This was the first time I saw that. He was happy to be there, and didn't cry when I left. My heart filled with relief, comfort, and happiness. I was so happy to see that he loves her and is comfortable being in her care. He is making friends, and her whole family enjoys his company. He never did that before with our previous daycare lady. I don't blame him. Previous daycare lady made me feel like my son was just a daily business transaction. Ours now makes us feel like part of the family, and I can really see the difference and positiveness in my son's behavior and newly found personality. He is truly the love of my life.

Speaking of love. When my husband and I first got married, a high school girlfriend of mine gave us a Christmas cactus. Sure, it may be viewed as an odd gift to give (some people give me funny looks when I explain to them how I got the plant), but in my mind it was the best kind. I knew it came from the heart and she put thought into it. Besides, I love cacti! It is a gift that keeps giving. How did she know? We call it out Love Cactus; a spin off of the Love Fern from the movie How to Lose a Guy in 10 Days. If you haven't seen it, you should. Its cute and endearing. So we have had out Love Cactus for 3 years now and it has never bloomed until one day; the month we found out we were pregnant with Baby Elijah! It popped two bright pink flowers. It must have went back to sleep because then next time it bloomed again was the beginning of April, the month we found out about Elijah's condition. It has many pink flowers on it now, and wont stop. When one drops off, another somewhere takes its place. I hope it continues to flower as long as Elijah is alive. Even if it doesn't, that's okay too. Its not only my husband's and mine Love Cactus, but it is also the Cactus of Life for our sweet Baby Elijah. Here is a picture of it a few days ago...

The rest of today I will be mentally preparing myself for our two appointments down at Abbott Northwestern in Minneapolis tomorrow. I have to think of a game plan, prepare myself for when I hear the words "no". I don't want to hear those words unless they benefit the life of my unborn child.

I hope we get the formal results back too from the amnio test. Triploidy has 3 versions, or groups per say. All 3 have an extra set of chromosomes, but depending on which extra set of chromosomes they get results in which version they are diagnosed with. A child can be 69 XXX, 69 XXY, or 69 XYY. A 'normal' person is either 46 XX (girl) or 46 XY (boy). So that is how I am understanding it so far. One of these triploidy versions does better and has a higher chance of survival then the other two. Tomorrow I hope to have this clarified of which one it is, and which one my baby is.

I found 2 stories of triploidy children living today. One is named Sabrina, she will be 8 years old this year. She is full triploidy 69 XXX. I have hope for my child, but I have been told that Sabrina's case is not a "normal" triploidy case. She was a miracle and beat all the odds. She had two holes in her heart, that completely healed on its own! Baby Elijah has only one hole, so.... All I can do is hope. The other story is a 24 year old man. I don't know much about him, or which triploidy he has. But all in all, I am amazed he is alive. I still do not know though if either of them has spina bifida...

In all honestly, not only am I terrified of losing my child; I am equally terrified of having a child with so many medical complications and disabilities and trying to care for it long term. Am I strong enough? Will I know what to do? Something so fragile and delicate as Baby Elijah, what if I hurt him? Will my emotional health hold up? Will my finances deplete and I will have to sell my house? What kind of life would my son Paighton have? Will he grow up with a negative or positive view on disabled people because mommy couldn't go on his field trip at school, but had to stay home and take care of Elijah instead. That would kill me if my son was cruel to those with disabilities. Some of the greatest moments of my life have been time spent with my group home guys. My mother always told me I am the queen of "what-ifs". I know.... my mind starts to run and it is hard to catch up to it.

All of this thinking, some of it mindless, other parts exhausting, makes me feel like sleeping. If only my thoughts would go away in my sleep. Instead I just dream my fears and they feel all more real life than they actually are at this point. It would be interesting to be in a situation like Alice's form Alice in Wonderland. I would just eat some cake and stomp on my problems, or drink some elixir and shrink down into a small dark whole where I could be found by no one.

Sweet dreams Alice...

Normal

Normal –adjective [nawr-muhl] 1. conforming to the standard or the common type; usual; not abnormal; regular; natural.

So there IS such thing as 'normal'. Well I would love to see it right now. I think I might have seen it today, or got somewhat close to it.

My husband has been amazing through all of this. I just feel like crap in the morning partly because of my headaches. If I sit up/stand up too fast I get really dizzy and my headache turns into a migraine pretty much instantly. So he has been the one getting up with our son in the morning and gives me a few extra minutes alone in bed to slowly get to my feet. Last night I felt I wouldn't need his help, and we agreed he would get to sleep in this morning while I got up with our son instead. I really wanted to do that for him. But of course, out of all nights/mornings to pick it, I had to have a worse one yet. I didn't get up...

After I did finally get up, I tried to be normal. I tried to think of what would I normally do if I wasn't pregnant, or if I had a 'normal' pregnancy. I called Kid's Hair Inc. in St Cloud to make an appointment for Paighton's FIRST haircut. He was starting to look like a girl, or a rough hockey player. People were starting to tease me, but I just didn't want to cut of those gorgeous blonde curls!! He surprisingly did better than I thought he would. Of course he was scared to sit on the chair, and even more scare to get buckled in. All thanks to our former daycare for keeping him tied to a chair all day, I now have to help him learn and understand he will not be left there all day and it will not hurt him. We got past that with suckers and bubbles. We didn't try to put the cape on, he was calm, and why change that? He even let the lady spray his head with water, AND use the buzz clippers on his neck! I was so proud of my blonde angel! He looked like a different kid when he was done, I wasn't sure if he was still mine! He is so handsome, and looks more like a toddler now as opposed to a baby. I am sad my sweet little baby is growing up so fast.

Here is the before...

Here is his end result...

He has Fo-hawk!! Is that how you spell it? I like it because it isn't really a mohawk, its only there if I want to style it that way. Otherwise, its just a 'normal' little boy's haircut. So precious, he is trying to blow bubbles.

After his haircut, we went to my husband's parents' house to show off his new do, even though it was already 1 hour past his nap time. He did very well for being so tired. He is such a good little boy.

After nap and dinner, my husband stayed home to measure the yard for our fence while Paighton and I went out to my mom's house to show off his new do, yet again, 30 minutes before bedtime. I don't know why I cut things so close to important time schedules. I usually don't. Then we went out to my aunt and uncle's place. It was nice to see family I don't see that often, and talk about things. Things I didn't really want to talk about, but it helps and I notice I get better at it as time goes by. I even laughed. I felt normal. As normal as I could get. I even ate ice cream cake from Dairy Queen, regardless of my dairy allergy. My taste buds craved it, so I gave in.

I think that is a typical day for a normal family on a Saturday. I wonder what tomorrow will bring...

Waiting Game

So yesterday I was tested for preclampsia at Centracare and then meet with our original OB, whom we will be transferring our of her care and into Abbott's instead. By no fault of her own, it's just how the cards were dealt given our recent situation. Sucks. I was really looking forward to her being my OB and delivery my second child; she delivered Paighton by chance. I enjoy her a lot.

I do not have preclampsia. So that is good news. My first pregnancy I never did have any issues with high blood pressure, or protein in the urine (I know, sounds gross huh?). I did however have issues with gestational diabetes, kind of. I would fail, then pass, then fail, then pass. It kept going on in a circle. I was never officially diagnosed or treated; was told just to watch my sugar/carb intake and balance my diet with more protein. Hence my cravings for peanut butter and jelly sandwiches (on wheat), chocolate soy milk and strawberries. I always had some kind of nuts within my reach and I found these 'Belly Bars' in the vitamin aisle; they were a good quick snack when I could feel blood sugar level drop. I am unsure if I am having any gestational diabetes issues with this pregnancy, I have not been tested yet. I am unsure if I even will be. I don't know really. I will be monitored often and closely for preclampsia though, as that seems to be the biggest risk right now; second to having a miscarriage.

I did ask about my 3 week going on 4 week headache. There is nothing they can do about that since the Tylenol or Percocet doesn't help any. I could take a migraine prescription, but it has not been deemed "safe" for pregnant women yet. Since I am continuing my pregnancy, I want to take all precautions seriously. I am just going to stick to my lavender baths and darkened spaces when needed. Now only if I could find a really awesome masseuse for free. My husband whines too much, probably because I critique him while he is doing it. Ah, the joys of marriage. I wouldn't change it though; my life would be too boring without him.

Next step is transferring all my care to Abbott. Tuesday, the 20th, we will be meeting with one of the nurses at Abbott to do that, then right after we will be meeting again with the Geneticist from last Wednesday's ordeal, not the previous one from April 1st. She will talk more about what we can expect and hopefully set up more appointments to meet with the neonatal people and the NICU at Children's Hospital.

Today we tried focusing on just being a normal married couple with a normal pregnancy. We went out for lunch at Noodles N Company (yum) then went price shopping for fencing out part of our yard at HOM Depot, Menard's and Fleet Farm. I think Menard's was the cheapest for what we want. I wanted to get a caramel cooler from Caribou afterwards, but the hubby was too full from lunch. So we just went home.

I made my first hot dish ever! Well, actually my first hot dish as a mommy. I have made one or two before, but since Paighton has been born and diagnosed with milk, egg, and nut allergies, I just haven't been confident enough to venture into the land of hot dishes. Most hot dishes I know growing up always needs milk, or creme, or some kind of cream of chicken/celery/mushroom soup. I recently discovered that Campbell's makes a Golden Mushroom soup *queue in heavenly music and lights signing down into my kitchen* What a miracle! Since my recent discovery, my slow cooker meals have been better, and my chow mein hot dish tonight was AWESOME! It reminded me of how my mom's hotdish is, almost exactly alike. I think it could have used more pepper, and I was sadly out of soy sauce. It needed that as well...

Tomorrow I am excited to try Panko for the first time. I have been dabbling a little in marinating chicken breasts a day or two before baking them. In the past I have used crushed ritz or townhouse crackers, or those french fried onions for breading. I decided to read the label on Panko (breadcrumbs, in the ethnic or Asian aisle, depending on how your store is set up). I am really excited to see how it turns out. I even think Paighton enjoys his mommy experimenting more in the kitchen, even the hubby.

I could probably go on and on about cooking. I am getting better at it, and never want to stop trying new ideas. Only thing I don't like is Paighton hanging off the oven door handle trying to see what Mommy is doing. That, or he pulls the drawer out below the oven, and pinches my big toe under it. One of these days he is going to take off some skin. Talk about ouch!

So now that my husband and I have made a final decision about our unborn baby, and we feel relieved knowing God answered our prayers and took away the responsibility of making the "other" decision, we feel a whole lot better about things. I don't seem so upset about talking about things, although I am sad. Sure, of course I am . But I am not going to be sad until the sad time comes. Right now I am happy, feeling, and fighting against the many strong kicks and punches my baby throws at me. He is so feisty!

I had originally planned on going back to work next Monday, but since I am not meeting with any Abbott doctors til Tuesday, doesn't look like that is going to happen. I am so bummed. I miss work, really. I know that sounds weird, but I work for an awesome company and have many awesome co-workers that have become close friends. It is also a place of serenity for me. A place to get away from being mommy and wifey, and do my own thing. I also missed Earth Day [insert tear here]. I LOVE Earth Day. I even signed up to volunteer for 2 days instead of one like I did last year. I wanted to run the 5K this year, but found out I was pregnant, so I signed up for my normal water stop instead. I enjoy watching people run, how hard they are working for the greater good of not only Earth but themselves. Some people train for a long time to reach their goals. It makes me feel good to see them feel good about themselves. Even though they look like they are in a lot of pain, and want to give up, they keep going! WOW!

I even had to give up my Junior Achievement class this spring. I taught my fall class, and had a lot of fun, but it never feels good to give something up. I was really looking forward to seeing the kids. I had 1st graders this year. Seems like missing work I am also missing out on a lot of other things I enjoy; my never-ending involvement in volunteering. I hope I can go back to work soon. I need some normalcy in my life, desperately!

So my life right now just seems like one big waiting game. I am waiting to go back to work, waiting to see what happens with my pregnancy, waiting to see my baby's beautiful face and hold him as close to my heart as possible. I am not sure I will be able to let go for his daddy to hold him. I am also waiting for small things, like our fence, so my son can run around in his own yard without worrying about the neighbors naughty dogs; and waiting for the weather to get a little nicer, possibly less windy, so we can enjoy more "firsts" with Paighton. I want to take him to the zoo and out on a lake and so many things.

Waiting is mundane. Waiting in doctor offices... more of those to come as well...

It's a boy!

The FISH results from the amnio are in. It is confirmed, we are having a boy. Good thing too, I already picked out the name.

So good news is also bad news. Triploidy has been confirmed. For some reason I was not shocked. I couldnt cry anymore, there is nothing left. My tears are drained, and my body is too physically tired for more emotions right now.

Triploidy is lethal. Again, we were asked if we wanted to terminate. We still can if we want. I said no. I didnt fight this hard and get so close to almost laying my baby to rest too early. This is what I told the Geneticist from Abbott...

I want a team of doctors who are not going to even use the term "lethal" ever when speaking to me about my baby. I already know that, I already know what I am dealing with and what my choices are. I do no need to be reminded by them. The kicks and punched of my baby remind me; remind me of how blessed I am to be trusted with this life.

I want a team of doctors who are going to continue in caring for me and my baby as far as this pregnany will take us. I want ateam of doctors who have the same mindset and hope as I do; that is to not give up. I need them to focus on life and not death. I need them to think of what to do to save the baby. The end goal is for the baby to be born alive. I will NOT deliver without a C-section. The risks for me to have a c-section are far less severe than the risks of a vaginal birth to a triploidy or spina bifida baby; now add the two together.

All my care is to be transferred from CentraCare to Abbott. I will be meeting with the Neonatal people and taking a tour of the NICU at Children's. We will be using this time to create our team of doctors. Any one who stands in our way and says "no" will be kicked out of the team and replaced by someone who says "yes".

This is my life, my body and I am tired of people telling me what to do. I am calling the shots now. They work for ME! It is not the other way around. If one more person says the word "lethal" to me again, I will completely cross them out as a respectable resource and find another way.

Our baby has already proven to be a miracle in itself. Supposedly triploidy babies do not even make it this far in the womb. Mine has. We saw major defects in ultrasound 1 and 2, and then they were gone, completely gone in ultrasound 3 and 4! Some one explain that!

I am still very scared and nervous, for my life and my baby's. But I can go on knowing that I am a fighter and so is my son. I am scared to loose my baby. I am also scared that my baby might actually live, and then I have to learn how to care for him. I am just plain scared.

Today I am supposed to be going to Centracare to be tested for preclampsia. This is the major risk of continuing the pregnancy. Hope it turns out well...

Ask God and He will answer!

What can I say? All I can think of is, OMG! Oh my Almighty God that is! Thank you EVERYONE, family, friends, co-workers, strangers, everyone for your many prayers. God has answered! God has intervened. Finally! I feel some relief, although the journey is not over...


Recap:

April 1st, 2010 - We were excited for our 20 week ultrasound at the Centracare clinic in St Cloud. The ultrasonographer saw something "funny". Our OB doctor said there is an abnormally shaped cerebellum and there might be signs of spina bifida. She referred us to a Level II ultrasound at United Hospital in St Paul. We were seen that same day within a few hours. After our Level II ultrasound, we talked with the doctor and geneticist. They said things did not look good, in fact, lethal is the term they used. Here are the issues we were presented with:

1) both feet have extra toes

2) both hands have extra fingers (one hand appeared to have an extra hand itself)

3) the legs were attached at the hip bent backwards, forcing a "buddha" position, preventing the baby from every closing its legs

4) it has both a penis and a vagina

5) it has a hole in its heart

6) it has spina bifida, 100% sure of that

7) there is excessive amniotic fluid, and very little in the stomach, indicating the baby is not swallowing properly

8) abnormally shaped cerebellum due to pressure from the spina bifida pulling down



We were given the option to do an amniocentesis, but it involved risks. Risks of infection for both me and baby, and risk of miscarriage. Risks neither my husband and I wanted to take. We did not refuse at that point, we wanted more time to think. We were told more than likely the baby is either Trisomy 13, Trisomy 18, or Triploidy. They were sure of it, leaning more on Triploidy. Their suggestions were to terminate the pregnancy. We went home to think about things.



April 5th, 2010 - We met with a doctor from the perinatal department from the Cities. He was very 'to-the-point'. He roadblocked us the ENTIRE way. It was then we were told the spina bifida effected the entire spine. He said the WHOLE spine was open, there was nothing to close. No doctor in their sane mind would even dare touch my baby. He said if we did not terminate, no one will help us. His final words to us was "How much information does Mom and Dad need to make a decision?" I wanted to slap him, then tell his mother and wife what he just said to us. He roadblocked every question and plead for help. We asked for more opinions, more referrals, more tests, more ultrasounds (3D, MRI...), more anything. He said, no, no, and no. It doesn't change anything, NO!



As the days went on I stopped taking my prenatal vitamins, and replaced them with percocet and benadryl. I stopped eating, bathing, and household chores. NEVER did I neglect my son or husband, NEVER! We sought counsel from a pastor in Sauk Rapids. We contacted Now I Lay Me Down To Sleep Foundation for professional pictures of our dead baby when the time comes. We contacted a funeral home for price quotes on cremating our baby, when it dies. A friend started on a beautiful hand-crafted memory box to hold the urn and other items like pictures, and blankets. My grandmother and aunt started on a personalized baby blanket for us. We contacted as many strangers with similar situations, and professionals from other states and Universities and hospitals as we possibly could. No where did we find actual help to continue. We found words of encouragement no matter what the decision, even emails of strangers pleading as hard as they could plead to not terminate. Yeah sure, we found some help to continue carrying, but we wanted promises that attempts will be made to save our babies life. No one could give us that. No one would even say "I will try my best". We cried and screamed at the situation. Our life was devastated.

April 9th, 2010 - We made our decision. The decision to terminate. We felt bullied into this decision. Our entire team of doctors all agreed that things cannot be fixed (and wont be) and this is lethal. I am at risk, and the baby will not survive anyways. We must terminate as soon as possible, especially since MN law requires it to be done before 21 weeks gestational age is surpassed. I was called by a different doctor I never spoke with to complete the 24 hour paper work MN law requires before a termination can be done. I was told a care coordinator will be contacting me to set things up.

Later that day, I received a call. I asked who will be performing the termination. I was told it was the SAME doctor we met with on April 5th. Remember that one? I know I do. The one that deserves to be punched in the face. But let us not cast stones... (I can still dream cant I?) I said, NOW WAY! I refuse to work with him and I want a female doctor if I am going to do this. Due to my request, I could no longer be helped at United. I was transferred to Abbott Northwesthern.

I didn't hear anything for the remainder of the day.

April 12th, 2010 - It was 2:30pm. I still haven't heard any word on any plans. I was feeling anxious and ready to just get things over with already. I started to call around and try to find the people I needed to talk to. I final got in touch with the care coordinator at Abbott. I was told that I am already on the schedule for this Wednesday at 7:30am. Wow, it would have been nice if anyone could call me first to ask if that date worked considering I have another son i need to plan care for. So I made plans. I talked, and cried, with our son's daycare. She will be keeping him overnight.

April 13th, 2010 - I went to my mom's house after Paighton went to sleep. She was getting things ready for the next day. She is such a mother hen. She had prepared a whole mess of food and snacks so that my husband, his dad, herself, and I had anything we wanted to eat without having to go too far from the room. I cried, and told her I didn't want to do it. I cant. I just simply cant. It is not right, for me anyways. There was just something that didn't feel right. Something didn't add up. I went home and prayed my heart out as I drove. Asking God to PLEASE intervene. I just could not accept that he has already intervened in some form. I wanted, I NEEDED him to intervene again. Do something to stop this. Show me in some way, any way, I don't care. Just intervene!

When I got home, I told my husband I didn't want to do it. He said he didn't either, but doesn't see any other way. I told him again, "I do not want to do it!". He said he felt the same. He right away jumped on the Internet again looking for signs of God intervening. We found and article of an ultrasound giving a false positive for spina bifida. The parents had terminated, and found there was nothing wrong with their baby. NO spina bifida...

I thought of an awesome friend I had growing up as a child; Jena was her name. She was born with spina bifida. We were together from preschool all into high school together. I remember pushing her around in her wheelchair during school events, helped her with her crutches and even in the bathroom, holding up her skirt or dress as I humbly and respectfully turned my eyes to provide privacy. She always wanted me to go with her and I felt so proud to be trusted. She sadly passed away at age 17. I knew there was something wrong and the teachers in high school didn't want to say anything to me because they knew we were friends. I refused to go to class until I was told what happened. I lost it. Completely lost it in the hallways. Everyone stared at me, but I didn't care. I was upset I didn't get to say goodbye when I knew I had a chance. I was a little apprehensive, but I called up Jena's mom right away. It was 9:30pm. I was afraid she wouldn't remember who I was, or feel sadden for me to bring back such painful memories of her own baby. But I needed to know what she thought about my situation. She immediately, and forcefully said "No! Do not do it!" She said other things to, but that is what stuck with me the most, it hit me hard. I trust her, and believe in her. She is a strong woman, from what I remember. It's been 8 years since I lost saw and spoke with her. I miss Jena...

That right there; Jena and the false positive article, changed our minds, sort of... We said, OK, we will go tomorrow and demand another ultrasound before I even undress into a gown. No ultrasound, no naked patient! If the ultrasound shows the same, we continue. If its different, in ANY way, we go home. We went to bed at 12:30am.

April 14th, 2010 - I woke up at 4:00am. I had a strange sense lingering over me. I felt as if the world was off tilt. I kissed my husband, wished him Happy 6th year Anniversary, and left to go pick up my mother. On the way back home, I told my mom about the false positive article we read the night before. She said that we need to make our decision and live with it for the rest of our lives, and that although our decision was made, it wasn't MADE yet.

We picked our my husband's father, dropped our son off at daycare and left for Abbott. We checked in and the nurse came in with kind of a sad look on her face. She spoke, speaking softly as if she were already at a funeral. I was her only patient for the day. She said she would help us get in contact with a photographer and a hotel room for our parents. We told her we wanted to talk to the doctor before ANYTHING happens.

The doctor came in (the one doing our termination). We told him we wanted another ultrasound and to sit down and compare, point by point, all the abnormalities from the ultrasound to be taken today vs. the Level II taken on April 1st at United. He said he is willing to do another ultrasound, but he highly doubts anything is different. He is confident in his colleagues findings. Yet, he did also said if things, magically are different, he will quit his job today and change careers. He came in with a portable ultrasound machine. He said that he could "not appreciate with that machine" the same findings as our Level II ultrasound. I wasn't completely sure what they meant...

We were walked over to a different building attached to Abbott to do a higher tech ultrasound with 2 other, different, doctors. We were starting to build a completely different team of doctors! This ultrasound was WAY different. Here are the findings:

1) one foot is normal, the other missing a toe

2) one hand is normal, the other has 1 extra finger

3) there are cysts on one of the kidneys

4) the gender is "ambiguous", doesn't mean both

5) there is spina bifida, but NOT the entire spine! Only the lower sacral lumbar area. FIXABLE!

6) there was no mention of the heart, legs attachment at the hips, or amniotic fluid and swallowing abilities. Yet we didn't ask either.

7) the cerebellum is abnormal, but again cannot be confirmed if due to spina bifida or any of the 3 potential chromosomal disorders. Yet the forehead is a little flattened and the nose is abnormally shaped, still leaning towards Triploidy.

We felt RELIEF! The 2 doctors and then at that time, another yet different geneticist came in and talked with us. They said they with our doctor for the day (the one doing our termination) completely disagree with our previous team of doctors and geneticist and their findings, opinions and suggestions to terminate our pregnancy. They said this is NOT lethal and can be corrected with surgery. However, we are not completely out of the woods in regards to triploidy. Only and amnio can tell us that. We agreed at that very second to do the amnio.

We should have the "FISH" results tomorrow and the final results late next week. This will tell us if we are dealing with a chromosomal disorder, and even the gender or our baby. My husband and I agreed, with the new findings that the entire back is NOT open, and it is a 'normal, per say' case of spina bifida that can be corrected, we cannot and will not terminate. Regardless if triploidy comes into play, we still have hope. We have a team of doctors say YES they can operate and they will attempt to save our baby. YES! Thank you God, SO much!

We walked back to our room in the birthing center of Abbott. Our doctor came in and looked ghostly into my eyes. He stood there, just shaking his head. I waited to here what he had to say. He said... "Looks like I have to quit my job...". He also said that our ultrasound today is way different from that of United's and he can no longer perform our termination, even if we wanted to. We didn't want to. I asked him if he compared the two from each other yet. He said he didn't not compare the images, but was going off the report that United's people wrote up. He said he will be sitting down with those previous doctors personally and compare both together to see where things changes, or where miscommunication happened. The nurse came in and was more than happy to be sending us home, as were we!

We went home. I even got to stop at Nelson Bros. in Clearwater for my favorite Fritter French Toast and bacon!

My husband and I are the happiest parents in the world right now, so we feel we are. We know now that we can let nature and God take their courses. We do not need human intervention, only God's. I couldn't separate the two before, but now I see more clearly. We are not completely safe though. Things are still very grim looking, and our baby doesn't have the best chances of survival. But that is okay, that is all we wanted. A chance. Just ONE chance. We got what we wanted. Our baby will have help to survive. A chance!

I am supposed to take things easy from now on. All my care and appointments are being transferred to Abbott. I will deliver there and our baby will be taken to Children's immediately after delivery. If God takes our baby, we will be sadden, but at peace knowing we tried everything in our human power and gave it every chance a human can offer at life. If our baby survives, we will have a major life altering experience caring for our baby, loving it regardless of its physical form. I grew up with a best friend born with spina bifida. I had her in my heart and mind, she helped me a lot. I couldn't imagine my childhood without her, and i cant imagine my life without my child.

My husband made me an awesome peanut butter and jelly sandwich for a snack tonight. He served it with a giant glass of chocolate soy milk and 2 strawberries. My favorite food when I was pregnant with Paighton. I took my prenatal vitamins.

We thank EVERYONE for your support, your pleas, your prayers, for everything! If you are someone that I confided in and you did terminate in your situation, please do not take this as any judgement of any sort. For some reason our very similar situations were meant to take different paths. I appreciate the shoulder to lean and cry on. This is just my destiny, and for some reason, I needed to know more information. God intervened. I do not pass judgement on anyone for any reason dealing with ill babies. I am still Pro-Life, yet I now understand there are very many gray areas.

I was given a necklace from a bunch of awesome and supporting co-workers. I wear it with love and pride. The necklace reads: "During your times of suffering, when you saw only one set of footprints, it was then that I carried you". How true! Thank you!

Please continue to pray for our family and our precious baby, as we do want him to live. We want him in our lives and share with him everything the world has to offer before he goes to be with Jesus, at any age. I want him first!

Ask, and God will provide! Thank you Lord Jesus for intervening and giving our sweet baby more chances.

The fight of life.

I just woke up from a little nap. I woke up to the kicks and punches and somersaults of my sweet baby Elijah. He is just as active and hyper as my son Paighton was when I was pregnant with him.

This is a dream, a nightmare actually. I wish I had some ruby red slippers to click my heels together and wish me home. I wish I could wake up. The wicked witch is about to steal my son away from me. Only thing is, I am the wicked witch.

I cant help but to still feel I am making a horribly wrong decision in my book of life. I cannot erase what is already written; this has not been written yet, just sitting on a rough draft. I can change it if I want to. I can so "NO!" if I want to. I can just not go to Abbott tomorrow; call them and tell them never mind. I just feel that so many people helped me make my decision and i cannot turn back now.

I think I would maybe feel better about going on instead of terminating if I had more support; family, friends and medical. Especially the medical support! I look down the path of life, and no one is standing on the side lines to cheer me on; it is empty, dark, and scary. The path of death on the other hand has a ton of people, sad but supportive. Everyone seems to sympathize, but they always say "it is what's best for your family". Well I want to know, what's best for me? What's best for my baby Elijah? I cant seem all that selfish asking that can I?

This is still MY body. No one owns it, not even my husband or son. Yet what I do with my body effects the people in my life. Even if I was a drugged out stripper that ran away to California of something, that would effect not just my husband and son, but my parents, siblings, my husband's parents and siblings, and the list goes on...

I do not want to be selfish. I want to think of others, especially baby Elijah. That is why I am SO confused. No one seems to want baby Elijah alive except me. I feel like I am the only one fighting for him. It is hard fighting alone.

How am I suppose to tell my husband that I do not want to do this? That I want to fight until I cannot possibly fight anymore?

I just feel that Elijah's increased activity in my belly is him trying to tell me, he loves me, and wants to see me. And I want to see him too. I want to fight for his life, and so does he, I think. Why cant anyone else see it the way I do? I feel his love, all the time... I do not want to lose his love...

I love you Baby Elijah...

Today I received word on the final plans. I did not want to listen, I did not want to agree to anything, I did not want to make any more decisions. I am tired. Very tired.

This Wednesday at 7:30am, I am to be admitted to Abbott Northwestern in Minneapolis. My mother and my husband's father are our chosen support for the day. I feel like I am committing murder and getting away with it. My insurance company labels it an "elective abortion". This is NOT by any means an abortion!

I wish people, all people, who are Pro-life were not like me. I am pro-life; hardcore pro-life. I always believed there is nothing, NOTHING, in this world that would effect my beliefs and decisions. I feel that people who got abortions just because a baby didn't fit in with their life at the moment are selfish; I still do. If you are that person, I do not need a ton of nasty argumentative comments or emails. This is my opinion and mine alone. You don't need to be my friend, no one is forcing you. Would you harass someone for being a vegan because they think you are gross and cruel for eating an animal? I would hope not. (By the way, I love vegan dishes... and meat...). The reason why I wish pro-life people like me, were in a sense not like me (Does that make any sense?) is because it took something so horrible, challenging, and tragically sad to help me understand and see life through different eyes. I want my baby, YES, of course I do. Do I want to end my baby's life? NO! Do I want my baby to suffer for 1 minute or 48 hours? None of course, but if I have to choose, I'd say 1 minute. I hope pro-life people do not have to endure something like this in order to understand that, yes, there are many gray areas when it comes to life. We only have our human feelings and religious beliefs to guide us. We have the responsibility to decipher to codes, put the puzzle pieces together and see what happens. When you really look at it, no one can say for 100% sure which is right and which is wrong; on any moral issue. Only the God we believe in knows the answers; and someday, we too will know, when our time is up.

In this situation, I do have to choose. And I have. I choose the lesser of the two evils. They both suck, they both upset me greatly and I may never forgive myself, but I have to ask God to forgive me; and I know He will.

I was being asked today questions like "how much time do you want to be alone with your baby?" and "do you want footprints/hand prints if possible, and locks of hair, and pictures?". Stuff like that. Just thinking about it hurts. It hurts a lot. I cant believe I have to think about this stuff. Yes, I want a lock of hair... but from my baby's first haircut, NOT this! I want hand prints and footprints that my sweet baby brings home from school to show me what he did with paint in school. I want pictures to EVERYTHING; first day of school, first bike pedals without training wheels, first prom, wedding, grandchildren! I want it all!

We will be getting photos, I hope. Someone had contacted me with the NILMDTS (Now I lay me down to sleep) organization saying she would like to help me out. She is a professional photographer. I really hope she still wants to. I feel bad that I didn't respond to her right away. I was afraid of things being too real. I still wont even talk to the funeral home on the phone. I am only doing things via email; they probably think I am a scam by now...

In my posts, I seem calm and at peace with things. I just keep telling myself that. I am an utter mess to be honest. Today I laid in bed crying, screaming, then back to crying. I yelled at myself, into my pillow, asking "why?". I called out to my baby telling him that mommy is so sorry, and that mommy loves him so much; mommy will take away the pain. Mommy is going to miss Baby Elijah a lot...

Then I logged into Facebook, looking for something to help me calm down. Maybe something funny or dumb a friend would have posted. Instead I saw a picture of a dear friend who passed away at a young age from a 4-wheeler accident. I still have feelings that haven't found any closure because I didn't get to say good-bye. It wasn't until 5 months after she passed did I even know, at no fault of any one's but my own. I never seemed to forgive myself for that. In this picture she was feeding a bottle to a baby. She always loved babies. She wanted to care for all babies and have her own someday. I broke down, again. I miss my friend so much, but it was nice to know a little piece of purpose to her passing. She was preparing for the arrival of my baby Elijah, and all the other babies in Heaven. I have always been upset that Paighton would grow up not knowing her, but I found comfort knowing Elijah will. I can't wait to see both of them again someday.

Tomorrow my husband is not going to work, and Paighton is staying home from daycare. We are going to have a family day, and maybe go by some items for baby's photos. I do not want gruesome parts to be shown, only his beautiful face.
Then very early Wednesday morning, at 5am, we will drop Paighton off at daycare and head to the cities. I am so scared and feel very uneasy leaving Paighton behind and having to spend a night away from him. It hurts my heart to think he will be scared sleeping at someone else's house and not seeing mommy or daddy for a couple of days. I wish things could be different. I trust the family he will be with, I just don't like the fact that its them and not me. I am his mommy, i should be there for him no matter what. I just keep telling myself that at least he is young and wont remember any of this when he is older. Maybe it would be easier if he were older; have a sleepover at a friends or something. What sucks even more is I think he is sick... He has had a runny nose for a few days now and tonight he started to cough. As I am writing this, I can hear him wake up a couple times in his crib, crying and coughing. Just as my husband is about to check on him, he goes back to sleep. So I am not sure what is going on. I wish it isn't anything serious that requires a visit to the doctor; I wont be around to take him. UGH! Why? Why can't things just come one at a time? Why double up on my already overbearing load of stress?

Speaking of stress, I am still trying to finish my taxes. The website froze on me at the end doing an audit check. Thankfully it saved everything. What next? Oh, I know. My former daycare provider wants more money. We stopped bringing Paighton there because we found out she was abusing and neglecting his basic needs. He was being strapped to a chair all day, while the other kids got to run around. She claimed it was to keep him safe due to his food allergies. I don't but it for a second. Not only that, my son smelled like poop every time i picked him up. I don't think she ever changed his diaper until i actually showed up to get him.

I hope that my life can destress a little. I hope I find peace somewhere...

Tonight I go to bed asking God to help me sleep, asking him to heal my son and stay with him as mommy and daddy are away for awhile.

Emotional Rollercoaster

Today was supposed to be easy and relaxing. For the most part it was, but towards the evening I started to feel intense anxiety, frustration, sorrow, and a fueled hatred set in.

Here is where my feelings had fit in throughout the night.

Anxiety: I know that sometime tomorrow someone from Abbott with be calling me to set a date and time for me to be admitted and start the process to induce. The closer Monday comes, the more crazy my thoughts get.

Hatred: My dad had stopped in unexpectedly (he tried to call, I just didn't hear my phone). He is always making sure that he brings something for my sister and I. He worries about us still; naturally. He had brought cereals, granola bars, candy bars, and other food items. I love my dad very much and I appreciate him putting in so much effort and humbling himself for his grown adult children. Something I wish my sister could learn from. My sister lives 15 minutes away from me; my dad lives 1 hour and 30 minutes away from me. My dad and I tried to get my sister off her lazy butt to come visit for many reasons. Maybe dad would like to see his other daughter and his grandson who might not even know who he is anymore because of lack of visits. Maybe I could use some support, or whatever sisters are supposed to do when the other is having a hard time. Maybe also to pick up all this stuff our dad had left at my house because I told her given my life right now in planning for the death of my unborn child I will not be able to drop this crap off for her later. My house is NOT a drop-off point! Besides, where is my sister anyways? My ONLY sister!! When I am losing my baby, what the HELL is she doing? Sitting on her lazy butt smoking her life away with cigarettes, yet she never has money for gas to visit people who love her! WHATEVER! I have co-workers who care more about me, more about how I am doing and making sure that I smile everyday. I love my co-workers and miss work a lot, but I HATE that my own blood sister doesn't even think about me.

Frustration: I am feeling this for my physical limitations. I am trying my best to still be a mom to my child and a wife to my husband. I am trying to cook dinner, do dishes, visit with my dad, and so on. My back is killing me! My stomach turns a solid as a rock every 5-10 minutes, I feel like my uterus is falling out between my legs, my 3 week headache is still stronger than ever, I am just in so much pain and just plain uncomfortable. My dad said stop fussing over dinner just because he was there. I tried to explain to him, I am not cooking this dinner just because he was there, this is how we HAVE to cook. We have no other choice because of Paighton's food allergies. I wish I could do something quick and easy, like a pizza or Stouffer's frozen-whatever. But I cant. I have to cook from scratch every night. I have a really short fuse right now too. My son continues to hang on the oven door's handle (which fell off and I had to fix), and climbs on the table, standing in the middle clapping his hands. I am very proud of him that he is a big boy and can do that, but it is testing my patience right now.

Sorrow: After my dad had left for the night, my husband called his dad. I could over hear him talking on the phone; I knew exactly what they were talking about. My eyes started to swell as the conversation went on. I wasn't in any way ease dropping, he was in the same room as me. Yet I felt as one would feel when you know that the conversation at hand is about you. I felt like I was having an out-of-body experience; watching as my life unraveled into pieces, pieces that could not be put back together even if you tried.

Awhile later, I called my mom and cousin to recap how my night went. I relived the hatred and sorrow part all over again, venting about my sister and whatever relationship we have, if we even have one; and crying about tomorrow. I am afraid to answer my phone for fear my nightmare will become reality. As far as I know, its not really until it happens. Maybe I will die in a car crash first then I wont have to go through all of this. Instead my baby and I can go to heaven together. Then I start to think of my son and husband; they always help bring my drifting mind back down to Earth. They are the only two reasons I do anything really.

I remember when I was 18. I lived kind of a reckless life. I wasn't into drugs or drinking, or anything like that. I just wanted to hang out with friends as long as my mind could stay awake from late nights of movies. Go shopping, sleep all day, be lazy and not have to do anything. I met my husband when I was 19. BEST thing that ever happened to me, and him. We were both kind of in a rut of what we called "life". We helped pulled each other out and grow up. We grew up a lot actually. We started college together right away and everything just seemed to fall into place there. It wasn't easy by any means, I wish. My theory is things are easy if its wrong and things are hard if its right. Going to college is not easy, especially paying for it on your own. But it is the right thing to do. Being a bum for the rest of your life is probably easy, at least I would think so. But it is wrong. No one should have to take care of lazy people; I wouldn't expect it from anyone.

Every decision I have made since I was 19 years old was a positive decision steering me towards what I have and how I live today. I am thankful that I have a loving husband and an awesome little boy; which I take pride in when people tell me what a good and well-mannered son I have. Every decision I continue to make with be solely based on those two people. I do not put myself into consideration, only them.

I really wish I could be sitting around the glow of a dancing bon-fire tonight. Nothing to do but feel its warmth and listen to its story as its crackling sounds fill my mind. I just want to get lost in it....

Human decisions vs. Godly intervention

Some decisions are very hard to make. Others quite easy. The decision my husband and I have to make is not easy; yet I wonder if our lives would be changed in different ways depending on which decision is made. Does it even matter, really?

Decision #1 - Carrying out our pregnancy full term, or at least trying to without miscarrying. Outcome - our sweet little baby dies.
Decision #2 - Terminating our pregnancy. Outcome - our sweet little baby dies.

No matter how you word things, line up the facts or possibilities, the outcome is the same.

My husband and I have made our decision. I feel empty. Its not like how a person feels after making a decision to get that new dress, or change careers, or even decide to buy a house. All decisions come with a bit of anxiety, whether positive or negative. I do not even feel anxiety. I do not feel anything really. I am a little confused I guess. Confused as to why this even happened in the first place; confused that I was even given a choice to make such a decision. Does God really have that much faith in me? It is told that God only gives a person as much as they can handle, never too much. This is a lot. Does God REALLY think I can handle this?

Our decision has been made. We have completed the 24 hour paper work required by law from the State of Minnesota. One of two women, who are the Care Coordinators from Abbott will be contacting me to set things up. Sometime next week I will be induced and out little baby will be born, and then die. It is so strange saying that... almost as if I am reading it out of a dramatic novel.

Things were supposed to be done at United Hospital, but factors such as distance of where I live and my personal request for a female doctor changed this. So it will be done at Abbott instead. I could care less... as long as my baby is treated with integrity, respect, and love.

I am still praying, of course, for some divine intervention from God. I pray every night that, if I am indeed making the wrong decision, to please, PLEASE take my baby naturally instead of humans taking it chemically. I am praying for a miscarriage. I have come to peace with our decision though, knowing that our Pastor has given us his blessing, and we are acting on God's guidance through our Pastor. Pastor has said that God already intervened, but showing us this now and giving us a choice. I still have some, humanely, doubts... but I am faithfully trusting.

The more and more I pray for God to intervene again, and not let humans take my baby, but God himself, the more my body feels different. I am unsure if it is stress related, or what really. I have been getting Braxton Hicks contractions. I feel a lot of pressure, and sometimes pain 'down there'. I almost fell over it got so bad while grocery shopping at Sam's Club today. I am thankful my mom was with me. My belly and 'stuff' just feels weird and different...
A friend of mine lost her baby in the womb. Her body did not miscarry. As she was at the hospital, waiting and getting prepped for the doctors to take the baby out (I am unsure, but I believe it was a D and C?), her body miscarried right then and there on its own. She told me God works in mysterious ways. I am praying for Him to continue to work and not forget about me yet.

We will be having a small funeral service for our angel baby Elijah. Although our Pastor has said, in his own words, that he is willing to be involved in any form we want. We have yet to ask, but we will be asking him to assist us in asking God to take care of Baby Elijah. I am unsure of his feelings about cremation, as that is what we will be doing. I just cant seem to find it in my heart to bury my baby in a plot that I would only visit probably 4 times a year. I know how cemeteries work. I am not against them by any means; I plan to be buried when I die, and then maybe, that is when Baby Elijah will go too. I wouldn't expect any of my children to cremate me; I doubt their spouses would be comfortable knowing their mother-in-law is in a jar their living room. I would feel strange if my husband did it, and he would feel the same if I did it. We love our parents, but... yea.... cant really find a further explanation to that one.

I know a lot of people reading this are going to feel we are making the wrong decision, but what they need to remember is if it were meant to be a different decision, it would be them and not me needing to make it. God gave this to us. God trusts us. Maybe God is using us as an example to all those who would be doing it differently, I really don't know. There are so many "what ifs" and so many different ways to argue or even agree. No one will really know until we ourselves die and go to Heaven.

I pray tonight that my son starts to feel better soon, as he caught Daddy's cold. I pray that my son will never have to endure pain of any sort, which I am sad to say, he probably will. Whether it be a broken arm or leg, or his first girlfriend dumping him (she better watch out by the way, as far as I know, I am the only woman good enough for him!). I pray, that if by chance, I do miscarry that I do not have my son with me alone. I hope someone else is close by that can take care of him.

I pray... that God take away all my pain... but if it were the only way, take away all the pain from my Baby Elijah, and give it to me instead.

Wow! You're pregnant?!

It is a very unusual feeling planning for a funeral while the person is still alive. I know it is very common, but for someone more in their 40s or older. I was giving into my little addiction today; went shopping at Target. I picked out a few matchbox race cars for my son, got some lavender bath beads and 3 lavender reed diffusers. I know, it seems like a lot, but I wanted one for the living room, bathroom, and my bedroom. I need to be surrounded by calm scents, and frankly, the smell of my neighbors dog crap that is cooking in the sun and drifting through my windows is making me a little sick. I hate dogs.

I ran into an old co-worker today at Target. She used to be my manager actually; it was really nice to see her. We talked about our lives, what we're doing and our kids. I was trying to avoid any attention directed towards my pregnant belly. I couldn't hide it. "Congrats on your pregnancy!" It would be too awkward to explain, yet too hard in the middle of Target. I just said thanks and told her when baby boy is due: August 22nd. I went on my way after wishing her well. It was so nice seeing her; she was one of the nicest managers I've known, a very good person.

Later in the evening while I was cooking dinner, our doorbell rang. It was our neighbor. He has been trying to help us with our siding since our last contractor Patriot ditched us during last Springs hail storm; our siding is still damaged. I was not in the mood to deal with our siding dilemma as that too is a long story. He is aware that I pregnant as we have talked about it and our other children before. I didn't want to get into too much detail with him either. I just informed him we are in the middle of planning for a funeral and haven't had any time to call Patriot to get released from the contract we had signed with them, or to call our insurance company up again to go around in an argumentative circle. He understood and just told me when we are ready to give him a call. I really appreciate him checking in with us again though. Our siding does need to be fixed, and I cannot forget about it too long.

It's weird going out into public, or getting together with people. I am obviously pregnant. I cannot hide it. I almost feel like I am walking around with a watermelon under my shirt because I know that what I am going to get in the end is not a baby I get to take home. I say watermelon, because if a person was really walking around with one under her shirt, that person would feel uncomfortable, physically and emotionally; thinking that everyone is looking at her with odd expressions on their faces, just waiting for something to happen. That's because they are. A watermelon would look very strange, and I too, myself, would exchange a look of "what the heck?". I feel like that's what people are saying behind my back..."what the...". I have already gone through receiving funny look, even looks of disgust, from complete strangers in public when I was pregnant with my son. I can understand that... I look like I am 16 years old. People have a very hard time believing me when I tell them my real age. Even now more, when I am out with my son, a giant pregnant belly... wow, the looks I get! I even saw one mom shaking her head behind my back and once she realized I was watching her do this for a few seconds, she stood tall and scampered off with her perfect little family. Maybe I should make-up a few hickeys on my neck, wear spandex booty jeans, and a really low cut shirt. That will give all the moms in the area something to talk about. I don't know why this bugs me. It just does. I think because people do not know me. They do not know that I have held a job since age 14. I have been on my own since age 17. I have worked very hard against the statistics and came out on top. I am very educated; most companies in this area wouldn't even be able to afford to employ me. Yet do you think I would even be given the opportunity to interview? No. I look like I belong in high school. Other people, who actually like me, say "You should feel very blessed to have found the fountain of youth. You will be thankful for looking so young when your older". Well, yeah maybe. But I need to establish a career now and not when I am 40 because then I look like I am 20. Whatever society.

Back to reality, I apologize for my off-the path rant. So yeah. I am pregnant, and it feels very strange. I often catch myself feeling the baby move and jumping to grab my husband's attention "Oh, feel, quick!" I forget sometimes... and I don't want to make things harder for him. He is having a hard time with this too. I think he might be a little more detached than I am though. He cannot feel the baby move on a 24/7 basis; I can. I do not want to invalidate his feelings, I am just saying... I think our feelings are different in their own way.

I told my husband that I have been Googling images online about Triploidy and spina bifida. I want to prepare myself for what the baby will look like. I am not doing it in any way to punish myself, or torment myself. I need to be prepared. I do not want to be shocked, which I am sure I will be anyways, or to be disgusted. It is my baby, and I will love it no matter what it looks like. I just need to know now... I suggested he do the same. I am unsure if he will though. Its really difficult, and quite surprising, that there are actually pictures online that are very easily accessible, pictures of deceased babies, pictures of babies kept for science... it's really hard. The hospital wanted my baby's body. I said no, they may do their autopsy if they wish, but I want my baby back. He deserves a proper funeral and I do not want to subject him to be on display for the next 100-some years. I agreed to the autopsy and other testing involving something to do with chromosomes; because again, God let this happen for a reason. My baby was supposed to be like this. I really hope my baby help leads to more answers for this horrible, horrible triploidy crap, maybe even better treatment and hope to God a preventative measure (although I am not sure prevention is possible without the practice of test-tube babies, which again is a political controversy). Only time will tell...

I love my son, I love my husband, I love my unborn, dying baby Elijah. Now I need to find that love again for myself. I wonder where that went...
Maybe it is in my percocet bottle. Wait.. that's empty....
Looks like a lavender bath and some Food Network for me instead...

Good night Lord.