Baby Elijah

Today we got to see our sweet baby Elijah in a 3D/4D ultrasound at Bella Angel Imaging in Maple Grove. I do not have any words that can even begin to describe our day.

First of all, I want to say "thank you", well actually, a thank you is not enough, to two wonderful people named Scott and Diane. They have a beautiful baby daughter named Grace who was born into Heaven. Their sadness turned into strength to help others turn their sadness into their own strength. They started a foundation called Sustaining Grace (http://www.sustaininggrace.org/) to give the gift of 3D/4D ultrasounds to parents who have received a fatal diagnosis of their unborn children. Today, we received this gift; because of Grace, my husband and I and our families were able to see Elijah alive. Whether you know me personally, or don't know me at all, please consider donating to their cause. Without them, I never would have been able to have these pictures after my baby's body leaves this world and his soul enters into Heaven, waiting for his mommy and daddy.

Although I may not get to keep Elijah in my life for as long as I want; I have amazing 3D pictures, 4D live footage, and a very soft teddy bear that holds inside of him the sound of Elijah's very own heartbeat. Hearing my baby boy's heartbeat come from inside the bear makes me feel as if the bear has a soul of its own, my sweet, precious child Elijah. It will live on forever and never die. I will listen to it always.

Please meet our gift from God, Elijah Andrew...

Hospital visit

Well, I am home. After a long night at the hospital, things seem to be moving along, but not quite ready yet.

I was supposed to have an OB appointment today with my OB here in St Cloud, but since all my care has been transferred to Abbott Northwestern in Minneapolis, I guess I forgot about it.

The nurse called me; she is aware of everything going on. She wanted to check in with me and we talked about how I was feeling. I didn't really think anything of it, expect stress and lack of sleep. She sounded alarmed that I didn't call sooner, and wanted me to be seen tonight. So I dropped my son off at the In-laws and headed for the Birthing Center a the St Cloud Hospital.

I was hooked up to monitors. My contractions are becoming more frequent, but they aren't all painful. My cervix is softening but closed. I was also given an I.V. for dehydration. She poked my right hand twice until she gave up and went over to the left. When anyone ever asks me if an epidural hurts, I say "no, the I.V. does". I hate getting I.V.'s put in.

They also took blood and a urine sample. Basically testing to see if I have signs of preclampsia. To have preclampsia you need protein in your urine and elevated blood pressure. I have both... But they also took blood to see how it is effecting my liver, kidneys, things like that. I didn't really pay attention to it all. All my blood work came back fine and normal. They did say however that my hemoglobin and platelets were low, and suggested an iron supplement.

They offered me a shot to stop my contractions, but said it may cause my heart to race. I refused. It already feels like my heart is jumping gout of my chest. It is the only thing that reminds me I am alive and not dead; I am not dreaming, and that I am actually living this nightmare and will not wake up from it.

They cannot do anything for my pain, my headaches and backaches, the dizziness. Nothing. She offered another drug though to help me relax, said it has the same effects as Benadryl. I also denied this. I need to be able to function for my husband and son. My previous posts talked about my dangerous comfortness with percocet. I too, refused this drug.



I am 24 weeks and 5 days pregnant with Elijah...

Feelings

When I talk to people about how I am feeling, I cannot fully describe enough to help them understand completely what I actually feel; what I am actually going through. You can only tell me you understand when you, yourself, have gone through this. Then will it be that I listen and take your words, advice, even criticism into consideration.

For those of you who have gone through this, let me first thank you. Thank you for walking along side me. Thank you for finding your own strength in your moments of weakness and darkest hours to now use your found strength to carry me in my time of weakness; while I walk through my darkness in search for light. Thank you for understanding. Thank you for just listening.

For those who have not gone through this, I do not mean disrespect. These are my feelings, my opinions. You cannot put factual weight and importance on an opinion. Facts and opinions are not one in the same. With that said, please do not tell me it will be okay. Do not tell me it is for the best. Do not tell me how to feel.

Have you carried a child knowingly it will die before or shortly after its born? Then how do you know it will be okay? I know it will be okay, but right now it is not okay. I am hurting, and you telling me everything will be okay hurts more.

How do you know it is for the best? You never went through this. What if it isn't the best for me, or my Elijah? In a way, I do know. I know it is for the best, but you telling me its for the best hurts because I am at the point of still grieving. I will not stop grieving until I feel well and ready.

Do you really know how I feel? Let me help you understand, yet again...

Take two people. One person is a man, in his 40s. He is having a mid-life crisis because he wants that hot new viper that was just set out on the car lot for sale. He feels bummed because no matter how badly he wants it, he knows he cannot have it. He cannot have it because it is for the best; he has a wife and children to take care of. If he gets the viper, he will not be able to afford the needs in his and his family's life. He accepts the facts, sadly, walking away. He is OK. Life goes on.

The other person is a 3 year old. This 3 year old is taken with on a grocery shopping trip. He is given a delicious sucker to hold in his hands, wrapper taken off. The sucker is sweet smelling, shiny and new. His mouth starts to water as his eyes are hypnotically fixed on the sucker. He is told to hold the sucker tight, but he cannot eat it. Not even a single lick. He may hold it up to his little button nose and take in the sweet sugary smell if he wants to, but he must not eat it. He is also told, that after grocery shopping, before going home, he will have to give away the sucker. He may not take it home with him. During the whole trip, he is holding the sucker, caring for it ensuring it does not bump into anything, drop on the ground or get dirty. He is aware of the sucker's presence at all times. He also knows, when the shopping ends, he will loose the sucker forever. Sure, he may get another sucker someday, but it wont be "that" sucker. He will never hold that exact same sucker in his hands ever again. This makes him sad.

I feel like the 3 year old. I am carrying my sweet precious Elijah. He dances within me. I can feel his life, but I will never get to taste his life. I will not get to fully enjoy what he has to offer; my sweet baby Elijah. I do not get to take him home with me. He is so shiny and new; I will never get one like him again. No other child will be the same as him, because they are not him. I want him. My pregnancy is the shopping trip. Short lived with an apparent end. I know the ending to this chapter. What chapter comes after, I do not know for I am not looking that far ahead yet. I cannot see that far, my view is foggy and delusional.

It seems like a cruel joke to give a 3 year old a sucker and tell him he cannot have it. He has it, yet you doesn't HAVE it. A 3 year old cannot comprehend life, the fair and unjust, like a 40 year old man is able to. My mind is the mind of a 3 year old. I want what I want, and that is all that matters to me right now. I do not care about the science or logistics behind it, all I know is I want it.

Tonight I cried just as hard as I did on that horrible day my world crashed on April 1st. I start to panic because I think I cannot breathe. I start to hyperventilate; feeling my tears drown me. I am left with an unwanted salty taste in my mouth from my tears rolling off my cheeks and into the corners of my lips. I cannot cry with my mouth closed, since I cannot breathe any other way. The harder I cry, the harder my heart pounds on my chest. Then sweats start to kick in, then Braxton Hicks contractions. My body feels like it is being attacked. Only thing though is its attacker is itself. All I can do is shove my face into my pillow to breathe in stale air and force myself to calm down. The lack of fresh oxygen slows my brain, slows my heart rate and breathing. I feel calm until another burst comes through due to a thought. A thought my mind has thrown at me like a bomb, and I am under attack again.

Strange things have been happening to my body this past month. I know about 'normal' pregnancy symptoms, I am not an idiot. What I am finding strange is how the affects of emotional stress actually has on you physically. Today, sitting at my desk, I got the weird sensation that I was drunk. I actually felt drunk, from alcohol. I even smelled the scent of beer. My vision was blurred, I had a hard time focusing on people's faces, the room was spinning and I felt nauseous. I felt if I attempted to speak, it would come out slurred. I was afraid to speak. I just sat there hoping it would go away, that no one would notice. I was embarrassed. I wanted to sleep, or pass out; whichever came first.

Tomorrow my son has a doctor's appointment to be retested to see if he has or has not outgrown his food allergies. I am fearful that I am getting him tested too early, I wonder if I should wait until he turns 2. I do not want to see him get retested. It is not fun. The skin test isn't as bad as the blood test. Last time they took blood for this purpose, they pricked his itty bitty finger and milked his finger to fill more than one tube. I think it was like four or six tubes, small tubes. He cried and kicked to get away. I am fearful that I will not be able to physically and most importantly, emotionally handle his appointment tomorrow. I feel guilty as a parent, subjecting him purposely to pain. I do not want him to become afraid of me. I love my son, and I want to do all that I can to protect him from all pain, the physical and emotional.

Tonight I pray to God, please take away the pain from both of my sons, the born and unborn. Please hold my hand and give me strength for my son tomorrow; as he will need his mommy to be strong for him and to hold his mommy's hand. Lord, please let his food allergy tests, both skin and blood come back negative so that he may enjoy 'normal' food and not have to live a life of "cannot have". He does not deserve to watch others enjoy the "sucker" in life while he cannot partake in that same enjoyment. Amen.

Walls

Tonight I cried. I haven't cried for about 3 days in a row. It may be possible due to me being kidnapped for the weekend.

Saturday morning I went garage-selling with my in-laws. I knew I had prior plans with two friends form work to also scrapbook later in the day, but I just didn't want to sit around all morning waiting for our little get-together. When I got home, all my scrap booking items were already packed. I thought that was strange that my husband had already done that for me ahead of time, especially since he never wants me to go; he misses me. What was even stranger though, was my toothbrush, deodorant and toothpaste were missing from my bathroom drawer. It was in our closet in our bedroom. Now why would I put that there? Simple.... I wouldn't. My husband just gave me the "husband look" and said "I don't know" when I asked him how it got there. I just assumed it was our little guy rearranging the house again.

As I was about to leave to go to my friend's house, my doorbell rang. It was both of my friends who I was going to see! I was so surprised! I was really confused as well. I turned around to look at my husband and he was standing there with my bags and said "have fun, see you tomorrow". My girlfriends kidnapped me. Apparently, Saturday was dubbed National Scrapbooking Day. We stayed at a really nice hotel in Maple Grove, went to Archiver's (thee best scrap booking store EVER), ate at Buca's and laughed at the naughty pop-culture portraits hanging in the ladies bathroom, went swimming, and then stayed up all night scrap booking. I was exhausted, but I didn't want it to end.

In the morning, we went shopping again for more scrap booking items. What else would we do? We then went to the Chocolate Factory. YUM! I finally had my first chocolate made with chile powder. Ever watch the movie Chocolat, starring the all-delicious himself, Johnny Depp. I never knew spicy chile mixed with decadent chocolate could make such a married match of perfection and pure indulgence. I need more...not want....need...

The surprised didn't stop there. Not only had my husband been planning this scrap booking getaway (his own idea), but when I arrived home Sunday afternoon he had seven trees planted in our sad and bare yard; 4 maples and 3 elms. I am so proud of him! I feel so loved to have him as my husband; he truly does care and think of little things. Although, I am worried now of how I am going to top this and out-do him someday. This might take more than a year of thinking.

Even though I had a lot of fun this weekend, I couldn't help but to feel empty. I tried my best to be my normal, quirky, and sometimes obnoxious self that people like so much. Seems like that's why people want to be around me; I can make them laugh.

I love to scrapbook, but my main focus was to scrapbook our ultrasound pictures of Baby Elijah taken on April 1st. As I shopped, my next favorite hobby, I was trying my best to stay away from baby-themed items that involved "baby's firsts". I know that Elijah may not have very many "firsts", if any at all. I bought a smaller scrapbook, small enough to only fit one picture on each page. I was able to finish 3 pages, until I had to move on to finish a page for Paighton instead.

As I stood there in Archiver's, looking at the wall of empty books, some with fill-in pages for baby's "firsts", I felt my eyes starting to swell again. I didn't want to cry, not then, not now. I couldn't help to think that I am never going to be able to fill in those empty lines for the wonderful milestones Elijah is never going to have. I felt as empty as the pages. I wanted to come unglued; rip all the books off the shelf in a violent hurricane of hate and sadness. I wanted to scream as loud as I could until my voice would allow no more. I really needed my husband at that point...

I didn't want to be a downer on this very special trip that my husband and friends had put so much work and thought into. This was supposed to make me happy; and although it did, I just had to put my wall up. The wall I put up whenever I feel the need to protect myself and my emotions. My wall is my worst enemy.

Later that evening when I was looking at Elijah, a vague black and white, two-dimensional picture of my love, I felt my hurricane swirling again. I clenched down on my teeth, tried to swallow the lump that was hardening in my throat, and pushed forward. I didn't even shed a tear even though I could see the swell in my eyes. It was beginning to blur my vision. I didn't want to cry in front of my friends, or worse yet, drop tears on what could be the only pictures I may ever get of Elijah.

I think that sometimes when people hold their own walls up for too long, they don't just come down eventually. The wall comes crashing down in a huge matter that creates chaos, confusion, and just a plain mess. If we didn't work so hard to put up our wall each and every time in crumbles to the ground, it wouldn't hurt as bad. Why do I self-sabotage?

Like I said before, my wall is my worst enemy. It is being built stronger and tougher as the days go by because I do not want to face reality; reality of Elijah dying. Yet my walls are infamous of keeping others out of my life as well. I do not like to get hurt; you cross me once and that wall flies up so fast you'd think it was built on a catapult. I am not trying to say I am an unforgiving person; I am, it just takes a little while. I grew up in a certain way where I have become untrusting of the human population. I am very naive and fall into traps that have not only put my reputation of a good person at risk, but also my life. I love people, maybe a bit too much. There is so much evil out there in the world, and even more disguises.

If I could build a wall to keep out all the people I know, with the exception of my husband and son, knowing that is the only way to save Elijah and live with him forever, I would. No question. I am sorry Mom and Dad, and everyone else whom I love very much, but I would do anything at this point if I knew it would guarantee Elijah's life. He is my son. I do not want him to leave me so early. I do not want him to leave me.... ever.

If I knew he would stay alive forever, pregnant with him, I would bear all the horrible things of pregnancy. Just to know he is alive, comfortable and content; ever so innocent. I would take on morning sickness every minute of every day for the rest of my natural life. We could go "home" together then.

I am in my second week now of being back at work. I am glad to be back, but it certainly is tough. I have to carry my wall around with me. There isn't anything about work that it hard, it actually helps take my mind away from reality and into something productive. The hard part is when I stop. I stop to think about non-work stuff. My mind stalls and I have a hard time jump starting it again. I start to think about how fragile life is; that at any second, any one around me could die including myself. I start to think what would happen if I started to miscarry at work. Would I feel embarrassed? How would people react; and then act when I came back a couple months later? I also think about consequences. I know that seems strange, but just think. Without consequences the world could be a very chaotic place. That is how my mind feels right now. What if I unleashed my hurricane and stomped on my keyboard? Or the next time I went to the bathroom, I punched the mirror in front of me; an ugly image of a failed mother and flawed human starring back at me. I know there would be consequences; not just embarrassment, shame, and physical harm but HR type of consequences. It isn't until someone needs help, or has a question about work does my mind snap back and re-focus on work.

I keep hearing and reading from people that with this experience, I will come out a stronger and better person. How? The only result I can see is me being a very cold and bitter crab apple. Someone who not only didn't trust people, but doesn't trust herself or God after this. How is one to grieve and live on? How do people even think about having more babies after losing one? The pain is so intense, I cannot even begin to explain.

Right now I feel like I have my highest ever made wall, up for good. I only hope that with Elijah's birth, he may live long enough that my wall comes down. It will be the biggest mess one will ever hold witness to, but it may grant me the stepping stones to walk across the mess to a much brighter ans happier side of life. I hope that no matter what kind of break down I may have, that my friends and family are on the other side waiting for me. I hope I am not abandoned.

I feel alone...abandoned right now...

Maybe because I am the only one hiding behind my selfish wall...

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...