Thursday, May 13, 2010

Yesterday & Tomorrow....

Written May 12 2010

I am finally getting on here to give you all an update from last Friday’s appt w/ my new specialist. It was a very long and emotional day for me. By the time I walked out of there 5 hours later (yes 5 hours), I was drained. I felt like I did that horrible January morning when we had our first ultrasound confirming Zeke’s abnormalities. Defeated would be an understatement. For 2 hours I was scanned on the ultrasound by 4 different people in the office. I then met w/ my 2 new doctors’ and discussed possible outcome for Zeke & solutions they would try.

We discussed the importance of taking the amnio at this time. In no way did I feel pressured or pushed to make any decision like I had felt @ 23 weeks. Not only did she tell me every angle, but she held my hand while she explained what she recommends as the best birthing plan. Logically and in my head I understand why I should finally suck it up and take the amnio. It would help us better to determine the course of action once Zeke is born. Meaning: If the amnio comes back positive for trisomy 18 we would choose not to have his heart monitored during labor due to the fact that most healthy babies encounter distress during contractions where as a trisomy baby has a bigger chance of dying during labor because the stress is to much for there weak bodies. Hearing his heart stop while I am in the middle of pushing him out would then put me in distress physically & emotionally not wanting to continue w/ the labor process. She told me I needed to understand the seriousness of them performing an emergency c-section on me since my placenta has moved directly where they would put the incision & what length of comfort care that we want to take place with Zeke. If it is positive for T18 then no we would not rush him to NICU or perform any unnecessary procedure’s or surgery’s except to make him comfortable the best we can until he takes his last breathe.

Now if the test comes back negative then yes immediately after he was born we would have the NICU staff ready to rush him off to perform every possible action to help save him including heart surgery and draining of the fluid.

The problem comes w/ not doing the amnio & not knowing what steps to take directly after birth. The blood test they would take would not be available for at least 24 hours after Zeke was born and if he did have trisomy 18 most likely he would be in heaven by then. My biggest fear is that he will die in some stranger’s arms & not surrounded by the love of his mommy, daddy & his brothers. Now saying that your probably thinking well then why are you even questioning passing on taking the amnio? My response to that is HOPE. I was talking to David the other night & he told me he believes that if we do the amnio and it comes back positive our hope is gone, that it might be the only thing that is keeping me going & possibly Zeke. The slim chance that this is a fixable condition would be completely gone, yes not all amnio’s are correct and yes there could be a mix up with the test. Logically and medically he would be diagnosed w/ trisomy 18 and he would be cleaned off quickly & immediately put into David’s arms.

This last week has been hard. I have been so confused & so sad I just cry. I felt like I had begun planning for his funeral after that appointment. The realization of the end is so real for me and so scary I just can’t imagine that I am actually going through this. She told me that she does not want to induce me 2 weeks early & that she believes the last 2 weeks could be crucial for his weight gain. I was so heartbroken when she told me. Not because I don’t want him to gain weight, but because for once I though I would have something concrete to gear up for. To have family planning to come in by that date & knowing that I had control over at least the day he was born. Nothing has been straight forward, nothing has been a solid answer and all I wanted was 1 solid date to have marked on my calendar and know that that was the day. So when she told me I was going to have to wait and go into active labor I started crying. I feel like I have a ticking time bomb inside me and all I want is this to be over. I want to just move on whatever happens, happens & I just want to get past all of this pain. I know when I was pregnant with the boys the anticipation for the birth was a little scary but knowing that you will be rewarded in the end w/ a beautiful healthy babies you don’t care about the pain. This time around there might not be a present in the end; it may be sorrow & more heartache that I do not have any idea how to look forward to.

Yesterday I wish I never got pregnant; yesterday I wished I had miscarried in the 1st trimester. Yesterday I just wanted to be induced, have his funeral & go home to my boys and my husband. Tomorrow I will want to stay pregnant forever, Tomorrow I will want to bring him home & stay up all night with him struggling to get him to nurse. Tomorrow I will want to watch the boys change his diapers & play with him in his swing. Tomorrow I want to watch his daddy carry him all over the house and rock him to sleep & get that 1 photo you always get….. them sleeping on there daddy’s chest. The emotional roller coaster is exhausting. The guilt you feel for wanting to cut him out immediately is unbearable, but the joy of knowing we are the proud parents of 3 amazing boys is a wonderful feeling!


  1. Hello Stef - I don't know you and you don't know me, but I know your situation extremely well and just lived it only a year ago. I am a Trisomy 18 mommy and after going through what we went through with our son, Rhyder, who was born August 25 via c-section, I never would have done any genetic testing. I did have an amnio done and regret it to this day. I wish I knew then what I know now. Our son did die at only 25 days old, but he got the swine flu.

    I would encourage you to not do the amnio or any genetic testing after birth. I also wanted to let you know that I know of SEVERAL Trisomy 18 children that did make and are alive today and many are ages from 3 months old to 15 years old. They are the most amazing kiddos' and they bring so much joy to the world.

    I live in the Houston, TX area and I'm currently helping a Trisomy 13 mom get medical help for her son who is only 3 months old, but doing amazing.

    I know the fears of your journey, I know the hope and believe are possible. I want to throw you and your husband a line called hope and believe. I would love to get you in contact with several T-18 mommies.

    My phone number is 713-204-8667 which is my cell. Call me any time, I would love to chat. I remember when I was pregnant with Rhyder, I was looking every where for hope and for children that are alive and living beyond through and beyond birth.

    I would love to share with you some of my regrets in the hope that it would help you, just a few things I would have done differently. If you are interested in talking please call me.

    I'm on Facebook as Michelle Cramer Anderson. My email address is

    With much love, hope and believe for your sweet Zeke and your family.

    Michelle Anderson

  2. Wow Stef - I just read your other post about losing your father-in-law. I'm soooooo very sorry for your loss of him. What a huge blow to your family. I get it when you say enough is enough. I really feel you in your posts and you could be writing my story. My husband and I kept a video diary of our journey with Rhyder, our son.

    I just really wanted to let you know that I am standing in BELIEVE for you and for Zeke. I remember questioning God and didn't think I could make it through another day on some days. But I just dwelt in the space of BELIEVE and that miracles are possible. And we did get miracles many of them. And I'm believing that for you and for Zeke. I want to say I am hopeful for you and for zeke. I'm hopeful you will hold him and hear his cry, and will bring him home.

    One of my miracles was when Rhyder was born. It wasn't looking good at all and then they put him by my face and I kissed him and my husband and I spoke to him and told him how much we loved him and how much we wanted him to stay but it was between he and God, it was truly a divine and holy place in that operating room. And then he took a breath and pinked up in moments and all of the nurses and doctors were in Awe! We just cried and kept kissing him and talking to him and his heart rate came up to normal, even with his heart defects.

    They all know they witnessed a miracle that day. I kissed the face of a miracle and not every woman can say they have done that. You were chosen to be Zeke's mom, and I know it is the hardest journey to ever walk, you are very courageous to love and to risk your heart for him. It does take great courage, but courage is not the absence of fear. You just do it afraid.

    The only way I could manage my fear was to live in the present moment. If I lived to far into the future I would freak myself out. And I would remind myself that God has only given us today. No one knows when it is their time to go, we all only have this very moment. I enjoyed every kick, every movement. I didn't hold back my love for him.

    I also remember feeling overwhelmed of being a special needs mom if he did make it out alive and what that meant to our family. Could I take care of such a child? I was very intimidated about that, but to be with him, I trusted God in our journey and knew that he would lead me/us. But him getting the swine flu was out of my control and I've surrendered that to the Lord.

    I still wish he were here with us, with all of my heart, and my heart breaks for our two other boys who lost their brother...but I don't regret one moment with our son. I don't dwell in the what if's, I would go crazy if I did, I just try to reach out to other mom's and offer any insights and a listening ear if they want it.

    If you are interested I wanted to pass on a couple of resources. I know I was looking for hope and for living children with Trisomy 18. I was hoping the doctors were wrong. And often they are. Unfortunately, the medical community is not aware of all the many, many children living with Trisomy 18...and living for many years.

    If you are on Facebook, join the group THE TRISOMY 18/13 JOURNEY and Trisomy 18 Mommies. Both of those groups have several mom's whose kids are living and you can see photos and contact the other moms.

    Also, here are a couple of websites that might be helpful.

    And there is a great book written my Melinda Tankard Reist called "Defiant Birth: Women Who Resist Medical Eugenics".

    My hope is to give you hope and strength. You are a mighty woman with great courage to love and carry Zeke. You have been given a gift, a miracle. And in those moments and hours of such overwhelmingness...remember to breath. Breath and trust your journey and all that God has given you and will give you. YOU ARE NOT ALONE.

    Love, Michelle Anderson

  3. My name is marta and i know Michelle above. My son kayden has trisomy 18 and he will be 9 years old next month. Im here to give you HOPE and to tell you not to listen to everything the Dr's have to say. The medical books have not been updated since the 60's and everything reads death. We were told so many horrible things and look how old my son is today.. im very aware that in some cases you may do everything possable and the baby may still pass but my son is living proof that these kids can live if given a chance. Today kayden signs mom and dad and will say momma. He is in a wheelchair but will scoot and roll to get into everything around him.We have had lows and highs but everything has been worth it.
    please know you are in my thoughts and prayers.
    my phone is 218-851-0618 and my email is you can see a slide show of kayden from birth to now at
    Here in MN where i live we have had 8kids at once living in a 2 hours radius from ages 4 to 22 years old. Trisomy 18 kids can live,thrive,learn,show love and be loved.

    we did not know befor kayden was born that he had trisomy 18so he was born vaginally but knowing what i do now i would have had him c section only becasue i feel it would have been less stressful on the baby. I courage you to monitor your baby at birth he should be treated like any other baby would be. Its your life your family and your baby your chooses.Im just here becasue i want you to have all sides befor you have to make those big decisions.I also invite you to come on over to face book to the trisomy 18/13 journey and you can find me on there by my name marta mcclanahan God bless and best wishes

    Life is not measured by the breaths we take but by the moments that take our breath away.