This was such a blessing for me. This packet that I just opened had a plan for every possible scenario that could be thrown my way. There were even grief booklets to help the grief process not be so .........I don't know how to put it........strange for lack of a better word. You see I have never lost a parent, I never had any grandparents , and I had never lost anyone close to me and I had no idea what to expect. Tammy gave me such helpful information. There was a plan there so that I could get every memory possible from the hospital in case she never got to come home. There was a plan in case she did make it home to set me up with hospice. There were poems, songs anything that could help me. On Monday Joey and I went into her office to talk about our wishes for Rabecca. There were so many options that I never knew existed. For instance She hooked me up with a photographer from Mitchell's photography who did a VERY IMPORTANT service to mother who have a terminally ill child who won't make it very long after birth. The foundation is called NILMDTS (now i lay me down to sleep). They will come in within minutes of the arrival and take the sweetest pictures that you will ever see of your new baby. This is a free service to parents in the situation that I found myself in. Tammy had so many good things to offer. Anything that we needed or had questions about, she was there to guide us through it all. She showed us scrapbooks to help us keep her memory thriving, and many many other things to help us ease into this transition as easily as possible. Kindness was the key to all of this. It takes a very special kind of person to hold your hand as you go through the pain and despair of loosing a child. I immediately began searching the web for special songs and poems that I wanted read at her funeral. I engulfed myself into making sure that she had the perfect funeral. I wanted it to be as beautiful as I thought she would be. Isn't it strange that even though I never met her in person that I could sit and imagine what she would be like , how her personality would be, what she might say if she could speak, what thoughts that she was thinking about her daddy and I. I believe in my heart that all of that was coming from Becca. I have to think sometimes that was her way of saying that "It's okay mommie, I'm gonna be just fine!" A strong soul is what I was carrying.
This is not how it is supposed to be! I am not supposed to have to make this decision! Parents are not supposed to have to choose life or death, they are just not! I thought about how much I wanted her to live. That was not a possibility for me. My baby's fate had already been decided, now it was my duty as a mother to do the very best that I could to give Rabecca the best life possible. It seemed like an eternity of pondering and wondering about what to do. It was in reality only a short time there with the doctors. I tried to be strong and not cry, but that was nearly impossible to do. I looked up form the desk and asked Joey what did he think we should do. He was wonderful. He looked at me and said that he would go along with whatever decision that I made because he had complete faith that I would do what was right for our little girl. I tearfully looked at Dr. Clark and said in almost a whisper "just comfort care, I want her time here no matter how short be as peaceful and beautiful as possible. I don't want her to know what pain is. I only want her surrounded by love". That was in it's self the hardest words that I have ever had to say in my life. Was I doing the right thing? My heart said yes, but my mind began racing around all the what ifs. We left the hospital and went home to begin a plan. "What did I just do Joey? I chose the fate of our child, and I chose to do nothing to save her!" What kind of mother am I? What if I made the wrong decision? What if we could fix her and I never even gave it a shot? Those questions ran through my mind constantly. I had to find out everything that I possibly could about T18 babies. I researched to the point that I was answering questions that some of the OB doctors had. You see this defect that she has happens to 1 in every 3 to 4 thousand pregnancies. Nearly all of them wind up terminating themselves by the time they are 24 or so weeks along. Very few are born alive. In the ones that are born alive less than 30% live for 1 week and less than 10% live to be a year old. Their 18th chromosome has a third part as to where you should only have a pair. It causes their bodies to go haywire. Everything begins to shut down and there is no cure for it. It is a constant waiting game. You never know what they are going tell you each time you go to the doctor. It is truly stressful. The more I learned the easier it was to accept my decision for comfort care for her. I began to think about myself. Would I want to be hooked up to tubes and machines to be kept alive? No I wouldn't. To me it was not going to be fair to her. She deserves the very best that I can give her while she is here. It would be selfish of me to put her through all of the pain and aggravation of having her be poked and prodded on just so I could maybe squeeze another hour in with her. She wouldn't be able to feel the touch of her mommie and daddy. I wouldn't be able to kiss her and hold her when I wanted. She would just be there in an incubator........ waiting. NO! I made a promise to her the day they told me she was sick. I promised to her that no matter what I would never let anyone or anything hurt her. Her life was to be filled with love and that was one promise that I intended to keep no matter what. I still to this day second guess myself on that decision. I still think "what if...", but I have to remember that she never knew loneliness, all she felt was the love of her family. I did the right thing. I had no one to talk to about all of this. Sure there was my family and my extended church family that would stop and talk to me at the drop of a hat, but there was no one who completely understood. No one who had been through this kind of thing. Amazingly again Dr. Clark stepped in at just the right time. I was due in 10 weeks and no where to turn, when he called me and gave me the phone # of someone who would put me in touch with perinatal hospice. That is a God sent service! I called them and immediately met with their director Tammy Tate. She made time for me that very day. No more waiting for someone to talk to! I went into her office and immediately felt a connection with her. She handed me some tissue put her hand on my back and said "it's okay. I'm here to help." We sat in her office and I told her my story and I sobbed and sobbed. She very gently told me that she understood and gave me a packet of information and told me to look at it when I was ready sometime over the weekend and that she would see me again on Monday. I went home and opened the packet, there in front of me was everything that I could ever need to begin a plan for what was coming. I couldn't have asked for anything more. It was more than I ever expected. I began to feel better immediately.
Now I am 18 weeks pregnant with a terminally ill baby that hasn't even had a chance to see the world yet. I am trying to treat this pregnancy as "normal" as I possibly can, but I know in my heart that I may not even get to see her with her eyes open. There is nothing to be excited about. That is how my mind feels. My heart on the other hand could careless if she was born with every defect known to man just as long as she survives. I decided that her life began NOW, not when she is delivered, but NOW! I immediately began calling her by her name, Rabecca Diane Hoffman. I sang to her a lot. "My girl" was my favorite to sing and "you are my sunshine ". I talked to her all the time and I would make sure that she knew that her mommie loved her very much and that I would trade places with her in a split second. So many times I wished for the Lord to take me home and let lil Becca butt thrive here with her daddy and brothers and sisters. I hear people say" I'd trade places with you if I could", but do they really mean it? Probably not. It's just a way of saying "i don't know what to say". I have been guilty of that myself , but not this time. I would gladly have taken her place. The doctor visits became more frequent as the weeks went along. I began to feel her kick a lot more. We went for ultrasounds every 4 to 5 weeks for my piece of mind. I needed to know what they were seeing with her. I think that it was the second one after we got the news, they sent in a specialist to look at her heart to look for malformations, holes, clogged arteries ect. He looked for at least an hour and had the damdest look on his face. He said "This just puzzles me, I don't see anything wrong with this baby's heart!" He over looked her body and then called in another specialist who looked her body over from top to bottom, and found nothing! Amazing love is what that was. God made her perfect......for the moment. We left that office with such hope that we called everyone we knew and bragged on her as if she had just found a cure for cancer! Proud parents to say the very least! "Maybe they are wrong!" Another glimmer of hope.....By the time I was 24 weeks pregnant we got another set back. Rabecca had slowed down her growing. She was not on schedule any more she was 2.5 weeks behind on her growth :( Still though no clubbed feet, no cleft lip and palate, both kidneys were present, her stomach was in tacked, and she was opening and closing her hands! GO BECCA!! She was small but thriving very well. We were told that IF she was born alive she would be very small, somewhere around 3 to 4 lbs mark. Now I am further along and everyone kept talking about "the baby shower". WHAT? A WHAT? How dare them! I knew in my heart that she was very sick and I would not bring her home. I didn't want to go through with a celebration. My heart was broken into! What am I gonna do? I told Joey how I was feeling and his advice to me was to go ahead with it and treat this just like any other normal pregnancy. His thought was that they still could be wrong about all of this. My feeling was what's the point? If I do have a shower I am gonna have to look at things that I would never get the chance to use with her. I took his advice and I had a shower anyway. I made sure that everyone knew that she would be very under weight, and that I needed small things to wrap her in. The big day came. I tried to chin up and pretend that everything was just fine. That was until I came out of my kitchen to see gifts everywhere, balloons, streamers, the booties cake, and the diaper cake. I got a huge lump in my throat and a eerie weak feeling. I did what the guest of honor should, I smiled, I welcomed everyone, I awwed at the cake and other things around me. I began to take my seat and open presents. Gift after gift I opened. The more I opened them the madder I got. Everything that was there was for normal sized babies! Had these people lost their minds?! Didn't the listen to me? Didn't they get it?! Rabecca was going to be TINY! This stuff seemed so big that I could have fit a 3 year old in them! I just wanted to stand in the middle of the room and scream to the top of my lungs "GET WHAT YOU CAME WITH AND GET OUT OF MY HOUSE!" I didn't.... I just stuck it out and when everyone was gone I sobbed, and sobbed. What was I going to do with all this stuff? I packed it all into boxes and hung the clothes in the closet never to be touched again. I was so in love with my baby, but I couldn't find it in me to be excited. All that I could feel was anger. Anger towards everyone. Especially myself, after all I was carrying her. This had to be something that was wrong with me. I had done this to her. Joey builds homes for a living. He had built a home that sat empty in a very exclusive subdivision for a little over a year. Finally the home was sold to a doctor by the name of Reese Clark. Joey happened to be talking to Dr. Clarks wife and he told her the story about Rabecca. She immediately told him that her husband was the head of neonatal research in the hospital that Rabecca was to be born at, and gave him Dr. Clarks phone number. We called him as soon as we could and he wanted to meet with us. To our amazement he was known world wide and if you wanted anyone to care for your baby he was the one! He wanted to meet with Joey and I as soon as he came back into town that week, so we did. He was wonderful. He toured us through NICU and let us see where our daughter would be if she cas able to come to NICU. He didn't want us to be shocked by all the machines and tubes that are in there hooked to the sick babies. He wanted this to be as gentle a transition as possible. He was wonderful. Now came the hard part of the meeting. He asked us if we wanted to intervene or if we wanted to choose comfort care for her. "What's the difference?" I asked. He gently explained to me that intervention meant that they would take drastic measures to save her life and that comfort care meant she would get a little oxygen, and anything to keep her comfortable until she passed. My God how do you make that decision? My options were to invade her body with machines and tubes and hope to keep her alive for one more minute or to do nothing and let her go. How do you make that decision?
Today is the day that I finally worked up my nerve to start getting all of this out in the open for the world to hear. Losing a baby to a terminal disease, is to me an impossible thing to over come. I am in a place where my faith has been rocked and the foundation of that faith has holes in it and I feel like I am going to fall through one of them. I would like to share my experiences with you if you would be so kind as to listen.My life was as I thought that it would be from here on out. I am in love with the man of my dreams , together we had the Brady bunch (six children), a lovely home, work was good. We were content. Then sometime in February I realized, as I was taking the last pill in my pack of birth control pills that I had not "started" yet!! OMG!!! I told Joey and I think that I scared the daylights out of him because he said absolutely nothing! This went on for about a week, then I took "the test" it was positive!! I went and showed him and his words to me were " What are we gonna do now? We have 6 kids!" Well about another week went by and I said to him "Have you given any thought to our situation?" His words were " NO I thought that if I didn't talk about it, it would go away." I thought that I was going to burst at the seams laughing at him! We agreed not to tell anyone just yet and we did keep it a secret for about 2 weeks. Then one morning at church just as the children were being dismissed to my classroom he stands up and tells the whole church that we are expecting a new addition to the family! Jaws dropped and there was a complete silence in the church for about 2 minutes. Hands began clapping, my sister in law started crying and my pastor who is also my brother in law hugged me and we were all VERY excited to have this addition to our family. For some reason that I still cannot explain the pregnancy seemed wrong. Not in the sense that it was wrong to be pregnant, but that something wasn't right with this one. When I was 9 weeks I began to spot bleed and I was completely freaked out so I went to the hospital. They did an ultrasound and everything was okay. She was still in tacked and we could see what was forming into arms and legs kicking and punching and her heart was beating properly. I was completely relieved, but in my mind there was something that I couldn't explain that was very unsettling to me. Something was still not right. What was it? Was it paranoia like everyone said, or was it that something was really wrong? I didn't know.On May 3rd 2007 I was working and I received a phone call from my doctors office telling me that there was a problem with my AFP test (alpha-fetal-protein), and that I was at risk for Trisomy and I needed to go to the genetics doctor the next day. Well I had no idea what Trisomy meant, so I researched it on the Internet and what I found broke my heart into. My baby was going to at best be severely deformed or she would die. It took my breath. I went to the genetics doc on the 4th and the genetics counselor asked me if I knew what Trisomy was and I was crying so hard that I just handed her the info I had printed from the web and shook my head yes. She ever so kindly and gently told me that I was a 1:20 chance for T18, and that in order to be sure i needed an amino done. I knew it was risky, but I HAD to know. we did an ultrasound and everything seemed to look okay. No markers, nothing unusual. She measured on schedule, so we hoped and prayed that everything would turn out okay.The next Monday on the 7th I got another phone call. On the other end was my genetics doctor with terrible news. "Your baby tested positive for Trisomy" she said. My knees hit the floor and I called Joey. "Our baby is going to die....she has Trisomy18 " I cried. Joey came to me and we held each other and sobbed. He took me home and we held each other more. We knew we had to tell the other children. How were we going to explain this to them? I couldn't even wrap my head around it and I was going to try and tell them? I couldn't do anything, but be completely honest with them. Amazingly they were all so wonderful and they asked questions and the best part is that they didn't care that she was sick they loved her with all their hearts anyway! A couple of weeks later at another ultrasound we saw that she was a girl!! Her little legs were threw up over her head and she was just a shinning that little moon at us as if to say "here it is now kiss it!" It was a funny little moment in the middle of a tragedy. My daughter already had a sense of humor! That's how I like to see it anyway. The rest of the pregnancy was long and very hard. I couldn't be excited about anything. I was terrified that she would die before I could look into her eyes and tell her I love her or see her breath, or even cry. I knew her days were numbered and I had a lot of planning to do. I just didn't know how to plan for a baby that I may never get to bring home from the hospital. I had no idea what to do. I just didn't realize it , but I didn't have to do anything God was doing it all.
