Sunday, April 21, 2013

Kayli's story from the beginning

Claimer: Kayli's story is not to be sold or profited from in any way! 

Kayli's story from the beginning, flashback to late 2008. Hubby and I were in the High Risk OB's office, talking about an ultrasound that showed extra fluid behind our baby's neck. We were told there is a chance our baby has a Trisomy syndrome (13, 18, or 21). The dr suggested that we get an amniocentesis to confirm or deny the possible syndrome diagnosis'. We declined, as it is my faith that guides my decision not terminate a pregnancy (thou shall not kill). I do not force my choices or faith on anyone, but I am steadfast on my decision not to terminate my baby, and I made it very clear to the dr that we would carry our baby to term. We cannot predict the future, nor do we know God's plan for ourselves, so how can we decide our baby's fate? The dr said it was imperative that we know of our baby's condition, because if he/she had a Trisomy syndrome, he/she would need more medical attention at birth than they could handle (she would need to be delivered at a level 3 hospital), and my pregnancy would need more medical attention. After confirming the amnio would guide us to give our baby the help he/she would possibly need, we agreed to it.

Sitting across from the genetic counselor, we got the devastating news. "Your baby has Trisomy 18". After we picked up our jaws, an wiped away the tears, I asked the counselor what that meant. What extra help would our baby need? Where do we go from here? You said our baby would have to be delivered elsewhere, do we change our OB then? HELP!!! Please tell us what we need to do! His reply was a gloomy response...."terminate". More tears flowed, as this was not an option we could live with. This is our baby you are talking about! We remained firm with our decision not to terminate our baby. The counselor went on to tell us that our baby had FUll Trisomy 18, meaning every cell that was tested showed a 3rd chromosome on the 18th pair. Our baby was deemed to die, as the counselor told us there is not a single baby with Full T18 living. If she lives to birth, she will die shortly thereafter. Looking for an ounce of hope, I asked the counselor if he could tell what we were having. My tears flowed as he said "a girl". We have 3 boys, so having a girl brought great joy to me, being the only girl in the family thus far. Joy was in the room, surrounded with doom, as we walked out of the office in tears. We are having a girl...... God blessed us with a baby girl!

We went back to the high risk OB, with the amnio results. He also told us to terminate. He was much harsher, and continuously pressured us to terminate our daughter's life. When we asked him what the new plans were to help her, he said there are no plans...she will die. Devastated with his response, I reminded him that the only reason we did the amnio was to find out if she needed more help than a typically developing baby. He assured us our baby would not live, and if she survived until birth, she would be extremely deformed and missing body and brain parts. He told us he would no longer need to monitor our baby, and no further appts with him were needed....she will die, there is no help nor hope for her. Hubby and I thought differently. (How could someone just give up on our baby?!) I demanded that the high risk OB not only monitor our baby, in the womb, but that he increase his monitoring! If she was to pass away inside me, I wanted to know everything about her that I could while she was still with us! I scheduled our next appt for the following week, to monitor our daughter's developments in the womb.

Every week, we went to the high risk ob's office for an ultrasound, and every week after seeing our baby girl on the screen, the dr would come in the room to "prepare" us for the eminent dreary outcome of our daughter's life.  One day sticks out in my mind.  I had just seen our daughter in her ultrasound, and she was waving.  I always made sure to ask the tech what her new developments were, and what (if any) new concerns there were, anxious to know more about our daughter.  Each site of her brought strengthened hope, which must have threatened the high risk ob's beliefs because as Kayli continued to grow, his attempts to persuade us to terminate also got stronger.  The dr came in, blurting out..."ok, so her hands will be like this (he brought his hands in fist motion, to his chest) and she will never be able to open will be very painful for her.  Knowing this was a ridiculous excuse to terminate our daughter's life, I could not help but challenge his beliefs.  I told him that my daughter just waved to me in her ultrasound!  She is not like the others (sorry, but he told me ALL were the same, and no child with Full T18 lives).  She CAN open her hand!!! Trying to crush my hope, he raised his voice, again and said NO!  She will never be able to open her hands, and you are going to make her live through great pain if you do not terminate!  I was drunk on hope and love, just seeing my daughter doing what the dr said was impossible! I told him I know what I just saw, and looked at the tech to confirm that she saw my miracle girl wave too!  She meekly  and quietly whispered "yes, it looks like she had an open hand".  I asked the tech to pull up the screen, and that the dr look.  He saw Kayli's hand open, and began another speech... "well, she did that once, but she won't be born like that...her hand will close, she will be born with clenched fists, and she will be in pain and never be able to open them."  

The appts were pretty much the same every week.  The dr giving us what we labeled "the Trisomy talk", while Kayli continued to grow inside me.  As Kayli's due date came closer, we began to believe she would live till her birth! Next, we needed to plan her birth.  Since the high risk ob refused to transfer her care to a level 3 hospital, I called some Chicago hospitals to see if we could deliver Kayli there, in hopes of giving her all chances of a life.  Each hospital said they will not "intervene" with a baby's life with Trisomy 18.  She was not to receive oxygen if needed (like her brothers needed), and she would not receive a feeding tube if she could not eat on her own.  With the forth call of rejection and alienation for medical help, I became VERY angry!  We chose life for our daughter, but nobody would help us with her with even the simplest of care!  1. Every dr I went to said they would not help her 2. I do not have the skills to help her myself 3. I do not have time to learn the skills to help her 4. I HAVE TRIED EVERYTHING, AND CANNOT HELP OUR DAUGHTER... I felt trapped, angry, and helpless.  Then a thought came to me...I have not tried EVERYTHING...I can still pray! I remember where I was standing, when I prayed.  I prayed that God guide me, as I was lost and no longer knew what to do.  I asked for forgiveness for the dr's who would not help His child in need.  I asked for peace, so that I would not have to live another second with the anger that was now inside of me.  I immediately felt peace, starting from my feet and moving up my body and through my head.  The peace pulled me up and yet calmed me at the same time.  He granted my prayers, and gave me peace.  The next day, at the regular ob appt, he granted another of my prayers. 

Once the internal exam was over, and the nurse left the room, the OB spoke to me.  He started out saying, we both know everyone is talking about you being irrational and wanting to find treatments to save your baby's life.  We both know the team here does not agree with treating your baby, and is doing everything to stop any "interventions" (life saving measurements).  I play golf with the Neonatologist here, and we speak of your case a lot.  He has agreed to meet with you, and hear you out.  He has not agreed to help your baby, but he has agreed to hear your story.  Meet with him, and tell him your story.  Tell him what you want, and your birth plan with your personal boundaries.  The dr knew Hubby and I set up a birth plan that asked for any and all interventions other than prolonging her life only that she would live in an institutional setting, on machines.  Kayli was to be saved, to live with our family and to be an active part of our family.  We did not simply want a body... if she could not make it with help, we felt it best to let her body go so her spirit would be free. But if she could receive help and live with us, and be a part of our loving family...she was to be helped.  The OB discreetly ave us the Neonatologist's cell number, and we met with him a couple of times.  Kayli and our family won the heart of the dr, and he agreed to give Kayli oxygen and/or a feeding tube at birth if she needed it!  The hospital did not have a cardiac surgical team, but she would get all the help she needed at birth! We planned a repeat C-Section date, and anxiously kept our secret birthing plan from the high risk ob and genetic counselor.  :D 

It's almost time!!! On the way in to the hospital, I was anxious about having Kayli today.  My mind ran I making the right decision to deliver her a week early? Will she die as soon as she comes out?!  Would I have her alive for 1 more week, inside of me if I waited, or would she pass away like they are telling me?  Too late now, I'm being hooked up to the monitors, and the dr's are in order....  Wait...what?  I am contracting?!!! She wants to come out today?!!! Thank you God, for letting me know I am making the right decisions, for your plan!!! Thank you Kayli, for taking that off my shoulders!!! 
11:19 am She's here!!!! She's here!!!! Is she breathing?!!! I don't hear her cry!!! Is she alive?!! Is she ok?!!! What's going on?!!
Hubby is quiet, the room is quiet. I don't hear any crying. The nurse brings her to me wrapped up, as I lay on the table with my arms open, strapped to the table. They release one arm so I can touch her. I nuzzle with her, and talk to her. I don't want her out of my site. Then Hubby gently says, Kelly...she isn't breathing. They need to take her to the special unit...can you let her go so they can help her? LOL Of COURSE!!! Please take her! Help her!! Hubby follows them to the special nursery where they give her oxygen and help her.
The pastor is waiting for her, and after finishing up with me, they wheeled me into the special nursery on the bed and we baptize Kayli with the boys in the room. Kayli was dedicated as a Child of God while in the womb, but now her body has been dedicated too!

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