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...