Tuesday, April 27, 2010
Formal Results...
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...
Monday, April 26, 2010
Games


Saturday, April 24, 2010
Work
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...
Wednesday, April 21, 2010
Blanket
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/
Tuesday, April 20, 2010
Tears
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.
Monday, April 19, 2010
Sleep

Saturday, April 17, 2010
Normal

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.Friday, April 16, 2010
Waiting Game
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...
Thursday, April 15, 2010
It's a boy!
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...
Wednesday, April 14, 2010
Ask God and He will answer!
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.
