Birth Plan

Friday, May 21st, 2010, we had our very first visit with amazing people.

At 7:45 A.M. we met with the neurosurgeon to talk about Elijah's spina bifida. As I sat nervously in the waiting room, I heard body movement down the hall. Then I heard my name, someone with a Spanish accent calling out to me asking where I was. I stood up, and his eyes smiled as big as his lips. He said "Hello, Mommy", as if he were a child of mine. He said that he was spending some time doing his math, and asked what my due date was again. I reminded him, August 22nd. He explained to me that his mother is an August baby; a Virgo and that Elijah would be a Virgo as well. If his math is correct, he predicts Elijah will be born August 17th. We will just have to see how well he knows his stuff.

As we walked down the hall, making our way to his office, he tried to escort me, looping his arm into the bend of my arm. I tucked my arm into my side, I am not sure why. I felt uncomfortable at first, having just met him. I also felt a little intimidated. Here is a man that performs miracles, and in the back of my mind I was aware that an hour after talking with us, he will be performing surgery on a little boy with a brain tumor. I thought my bad luck might rub off onto his arm, and the mother of that little boy will have to endure Elijah's fate with her own son. My mind was in a million places at that moment. My body reacted the way it did I guess; whether I knew it or not.

He did however rest my fears about the two methods of delivery Elijah: vaginally or C-section. He assured me that there is no statistical evidence supporting that one is safer or more harmful than the other. The only reason why c-sections are performed are because of knowledge of the condition beforehand. Both show that the outcome is the same and would not make any difference.

He also said that we do not need to make an at-that-minute decision about whether or not we want to perform surgery on Elijah's spina bifida. We are still unsure. Obviously, the sooner the better, but he has done surgery on babies from across the world a whole month after they were born. Those babies do just fine. He also assured us that no matter our decision, yes or no, he will support us either way. It was calming to hear him say that, considering a very evil doctor we previously talked to the beginning of April saying that there was not a single person in the world that would even attempt spina bifida surgery on a triploidy baby. The neurosurgeon did not seem to be bothered that triploidy is a factor to be considered. He did not mention it at all, but I could tell in his eyes he knew the outcome. Elijah will die. When? No one knows, but he will die. It almost seems as if the only reason he is willing to do the surgery, regardless of Elijah's triploidy diagnosis is acting as a comfort measure to us only. He knows it wont save his life, but it might give us more time to be with Elijah. How much time? Again, no one knows.

I am still hanging onto hope that the diagnosis of full triploidy is wrong; false. I am still praying that it is mosaic triploidy instead. Right now, I need all the prayers I can get to once again prove that God decides and no scientific testing can.

After meeting with the neurosurgeon, we toured the Birth Center at Abbott Northwestern. Then we met with the neonatal to talk about what we want and what is expected of others during Elijah's birth. We have to make a birth plan, and it will be kept on file and shared with all the other neonatals. No one can stray from what we say. Our word is our word, and everyone is legally bound to it. The only people who can change what it says is us, and we can change our mind at the very last second if we wish. After talking with the neonatal, we toured the NICU at Children's Hospital. It was very bittersweet. Knowing that so many rooms were being occupied, but also knowing that those babies have a better chance than my sweet Elijah; just a chance at all was comforting to me. My heart felt for all those mothers, sitting there in their babies rooms, sleepless, possibly hungry, sad and scared. I wish I could hug them all at once. They will more than likely have a very hard road ahead of them, but I will lose my baby regardless if he ever makes it to the NICU.

Our Birth Plan:
I will share some information about our birth plan, but some things I will not. My husband and I have decided that some things are to be decided by us, and us only. We do not want the feelings or opinions of family, friends, even strangers, influence us. We do not want us to go through the confusion and worry of second-guessing our decision made as husband and wife. It is our life, our child. No one has to live with the cause and effects of our decision but us. So why should anyone be allowed to influence us?

I will labor in a room like any other normal pregnant woman would, but right as I am about to deliver, I will be moved to an operating room to deliver. This will be done for safety measures as anything they would need for me or Elijah is right there. Once Elijah is born, if he is born alive, he will be immediately taken from me to an adjoining room. Daddy will get to go with him.

The neonatal and her team will be present during delivery. As Elijah is taken away to the adjoining room, I will still be able to watch through a window. This is were the importance of our birth plan will be played out. The neonatals have two options: taking an aggressive approach, meaning using every means in their power to stabilize Elijah including breathing tubes and resuscitation; or comfort care and more of a hospice approach. We have made our decision of what is to happen, but it has not been put into writing yet.

Which ever approach is taken, and Elijah is stable enough to even have surgery, we then will make our decision of yes or no to do surgery on his spina bifida. Surgery will prolong his stay in the hospital. If surgery is not done, we may be able to take him home sooner, and let him pass at home with family. We would be risking him dying during surgery, alone and without family. We are not sure what is going to happen yet. The neonatal said don't expect him to even get that far; he might not even make it out of the delivery room. She would be surprised if he was even born alive.

It was hard to hear those words, but I do understand we have to take a logical approach and prepare for anything. I still have my faith, my hopes and prayers, but I also still have my fears.

If he is alive when he is born, more genetic testing will be done again. Blood will be taken straight from the umbilical cord. This would be more accurate then the amnio. Again, I am hoping it comes back mosaic...

With this weekend coming to an end, and the start or another busy week, I still feel stuck in the same spot. My life is on hold; waiting for Elijah to be born... and die..

On a closing note, my husband and I ask of everyone to please respect our decisions and feelings during this difficult time. We love hearing and reading words of encouragement, it helps a lot. Thank you. But please do no share your personal "if I were you" comments. We would appreciate it.

Tonight, I hope I get to see my sweet Elijah in my dreams; I hope they are filled with joy and laughter...

Ask God and He will answer!

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


Recap:

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

1) both feet have extra toes

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

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

4) it has both a penis and a vagina

5) it has a hole in its heart

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

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

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



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



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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3) there are cysts on one of the kidneys

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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