Longest day ever ..........

Today was a very tiring day. I have worried all day about Rabecca. I just can't get the look on the doctors face out of my head. She walked me to my car, and carried the case of formula for me. I put Becca in the car and I turned to say goodbye and she was almost ringing her hands with anxiety. I knew that she knew it was going to be a long few days. That picture is burned in my memory.

I have watched Becca all day long and to tell you the truth I can see her declining. This is the most painful thing that I have ever had the displeasure of watching. Family are coming by to visit the baby and cover her with kisses and shower her with as much love as possible. I am telling them that this is going to be a tough week and we don't know what to expect. Her feedings are getting smaller each time she feeds. I can tell that she is not able to eat quite as much as a couple of days ago. She squirms and does this swallow that lets me know that she has had enough. She is barely eating 3/4 oz right now. I can't help but feel helpless. She began to turn blue again so I upped her oxygen and by 3:30 I began to worry so I called her father to come home and I called her Hospice nurse. The nurse came to watch her for a while and said that I was doing the right thing, but that there was nothing else she could do to help her. We signed a DNR (do not resuscitate). I questioned that decision from the very first day that signed that paper. "What if we can save her?" I asked that question a million times and I still couldn't help but think, "would I want to be kept alive on a ventilator and who knows what kind of other machines for the selfish reason of just a few more minutes with my family?" My answer was always the same.....NO. How can I put her on machines to try and squeeze a few more minutes in with her, just to have her feel pain and not the loving touch of her family? Not to mention I would have to make the decision to pull her off. I just felt that I made the right decision.

Her daddy came home and took her from me and looked at her then told me that he wasn't going back to work the rest of the week. We agreed that he should be home just in case. We watched her all evening and talked to her and just made sure that she knew that we loved her very much. For some reason I feel like I was in denial about it. Like I was waiting for her to some how get better. I was sure that she was going to pull through the week and show us all once again that we were wrong and that she was just having a bad few days and that she would be fine. I felt like that until night fell. We went to bed and her daddy kissed and loved on her then he fell asleep. Becca and I were awake and in a sense alone.............

I have never wanted to stay awake so much in my life. I stayed awake and fed her every 3 hours, changed her diaper, and talked to her. I propped her up on her Boppy pillow and just watched her. I told her how much I loved her and I told her about Jesus. I told her that" it's ok now" . I just felt like it was time to tell her that she didn't have to fight any more. There was this wonderful place waiting on her and that her mema Diane (Rabecca's name sake) was waiting to meet her and rock her on her lap. I never cried the entire time that I talked to her. I wanted her to know that her mommie was going to be just fine. At 3:30 am I Got a txt message from my sister in law that said "God sees you struggling, your wait is over" or something like that and when I read it it took my breath away. I just shut my phone and looked at Becca and talked to her some more. I began thinking about things hat I wanted to have of hers, and Tammy had told me a few tricks to preserve memories of her and I started running around doing things. I put some soft pink lipstick on her lips and pressed them to a white piece of paper so I would always have the imprints. I sang to her and just held her, still thinking in my mind that she was going to be fine. The night quietly passed, we went to look at the Christmas tree the she helped me put up just a week or two earlier. Mostly we just sat in the quiet of the room and I kept telling her that everything was ok now. As the morning drew near I woke Emily up to come in and see her and hold her before she went to school. Emmy finished getting dressed and came in for another turn to hold her and kiss her . We took a photo of the two of them just before my mom took her to school. Joey got up and was going to be up for a while so at 9:15am I laid down to get some sleep............then I heard the worst sound ever........Becca couldn't breathe. She was truly fighting for her life. I jumped up and grabbed her from her daddy and I yelled at him to call her nurse. Nurse Julie came in and began to look at Becca and told me that "it's time" and she began to tear up. I said "NO not yet!" There was nothing that could be done so we called the family, picked Emmy up from the school and by 10am everyone was there to see Becca and say goodbye. One by one the kids took turns holding her and saying goodbye and we took a photo of them loving on her. Her extended family began to take turns coming into the bed room so that they too could hold her one more time. As they finished they each one went into the kitchen so that her family could spend some time with her. At 12:00pm she was still fighting, she began to slip away and I just clenched her body in my arms and I screamed and I looked at her and she was watching me. I couldn't let that be the last vision of her mom, so I quietened down and I just kept saying "it's ok baby, it's ok do you see Jesus baby". and at 12:05pm she slipped quietly form the arms of her mother into the arms of Jesus. I loved on her and her daddy loved on her and we just couldn't put her down. We did her feet prints, her little hands. I bathed her, put lotion on her and I put the outfit on her that she came home in. We held her as long as possible.
I have never felt so helpless in my life. It is through the strength of the Lord that you survive something like that. Over the next few days we made arrangements and I put myself into that completely. I needed to do one last thing for her.
Fast forward 3 years: I still feel like that, like I need to do things for her. It has taken me a long time to get things out of my mind and on paper and I believe that to be true because I am just now beginning to heal. I had to force myself to write things down because I just wanted it to all just be a bad dream that I would somehow wake up from. It wasn't a dream it was a hard reality that I am just now trying to face. My faith was shaken so much and I just didn't believe that God had a good enough reason to take my daughter. I still don't know why but at least I know it was for the good of his glory.

67 Days of pure Grace....

Halloween has come and gone and so has Thanksgiving. We have been so blessed by God to have had these days with her. I took Rabecca to the doctor on December 3rd 2007 to have a check up and wewere hoping to get her first vaccinations. This was supposed to be a happy day for me, another milestone that Becca has made it through. I was alone with her at the doctor's office for the first time ever. Her father usually made it a point to come with me, but on this particular day he couldn't work his schedule around it and he had to work. As I took rabecca in the office I found myself sitting in the corner with her wrapped very tightly in her clothes and 2or 3 blankets that were threw over her face. I was protecting her fromany form of sickness, cold or even a small child with germy hands. We went in and I unwrapped her and took off her clothes so that they could take her temperature. It was a mere 95.0 degrees. Not even close to the "normal". As I was getting her dressed to take her to the room to be checked I noticed that her beautiful olive complication was now a pale white, like a toddler would be if they were feverish and sick. Kris Barends, her doc, came in and looked at her and I began to tell her that we had to begin giving her some pedialyte because she wasn't taking her formula very well and I didn't want her to get dehydrated and I had to up her O2 (oxygen level). "That was the right thing to do, she needed the liquid and the oxygen as long as she was comfortable with it." she told me. Then she said to me, and I will never forget the look on her face nor the tone in her voice, " Julie this is going to be a tale -tell week for Rabecca. She is either going to pull through this or we are going to be faced with the inevitable. I am going to change her milk and see if that will help her, I also want her to be put on the feeding tube. We will use the NG like she used her 2nd and 3rd days after she was born." I think that I was so shocked that I wasn't phased at that time. I just got her dressed and waited for the new milk and the things that I would need for inserting the NG tube. I had requested that Julie Clark come by and insert the tube. She was the only one that I completely trusted with my daughters life. I wanted the best care for her and I knew that julie would give it to her. She had treated Rabecca lie she belonged to her and I could tell that Becca loved her too because she was one of the very few that Becca would respond to when she spoke her name. Becca would lok around to see if she could see her when Julie came in. It was very comforting to me. Julie came by after her shift was over and she had been to see all of her patients. When she came in she not only was prepared to treat Rabecca, but she was prepared to help my other 8 year old daughter get through the procedure too. She brought in Emily a littlest pet shop set complete with swimming pool, house and lots of critters to play with while she worked on Becca. She took that money out of her own pocket to comfort my child!! What a blessing she is! Emily ran off to play and Julie inserted the NG tube into Rabecca carefully explaining it to me just in case I needed to do it again myself. I noticed that as she was putting in the tube that her eyes were watering as if she was fighting back tears and didn't want me to notice. When she was done we sat down and talked and drank a tall Starbucks coffee and watched becca. She was so stressed. Her throat hurt from the tube and I was the only comfort that she could find and even sometimes then she couldn't get comfortable. Uncle Mike and Aunt Sheila came by to visit her, but could only stay for a minute. Mike and Sheila both left in tears because they couldn't take the pain that she was obviously in. You never realize how helpless you can feel until you see a child in pain and know there is nothing that you can do about it. She finally settled down and rested as much as she could during the night. I made sure that every 3 hours she was fed and it would take me about 30 minutes to feed her properly then change her and lay back down with her. That was something that we did ever since she came home, so I was getting a 1hour and 30 minutes in between times of feeding to rest with her. It was a lot of lost sleep that I was proud and very willing to give up. The next days to come are going to be the hardest....

Trying to remember.......

Things are pretty crazy around here and I don't sleep much, but that is okay. I am just so thankful that I was able to bring Rabecca home. Hospice has been here.....a lot! They met us at our house the day we came home and were GREAT!! Nancy Dearing and Julie Clark have already became a part of this family. They are both so gracious when they come to visit and they never mind coming by for just a check on her and remind me that this is what they do and that they are here for us.
Now Rabecca is 2 weeks old and she has began to have some feeding issues and some breathing issues. She forgets to breathe while she eats and it causes her to turn blue around her mouth. It literally scares the crap out of me. I am so thankful for the hospice team. They have been so wonderful. Tammy came by here today and brought lil miss a 2 week birthday cake to celebrate her life. I didn't have any candles, so I used the nipples from her bottles as make-shift candles and it was really cute. I am rying not to focus on all the bad stuff that I know is coming my way, but in reality it is soo hard. I am terrified that I am going to wake up and find Becca in my bed not breathing. I know that they say not to put the baby in the bed with you, but I can't put her in the crib. I am too worried that I won't hear her if she needs me and I can't rest at all if I can't put my hands on her and feel her breathing. I have come to realize that her being awake alone is more important to me than me getting any sleep. I can't leave her awake alone. I will sit up with her as long as she is awake, and she is up pretty much all night. I think that she has her days and nights mixed up. She sleeps a good bit during the day and is up most of the night. We sit and watch discovery health, isn't that wierd? Of all things that we could watch we watch people having surgery and recovering. Anyway, Beccca has become so dependant on me being there all the time, that I can't even go to the store without her pitching one heck of a fit. Joey will call me when I am at the store and have me talk to her until I get home so she won't cry so much. Definately a mama's girl :o) !

I have a lot to say........ I am just having a really hard day today, and I can't get my words out of my head and on to my blog. If you didn't know I am going to explain why I am all over the place. I started this blog in June of 2008, Rabecca was born October 1, 2007. This has become a part of healing for me. Tammy Tate and my Doctor encouraged me to write and tell the story of Rabecca's short, but profound life. I have to say that it does help the healing process, but it is sooo hard to revisit that time, because I have to think and pull out good memories. The things that I want to stick with me are the things that I find it hardest to remember. The things that stick most in my mind are the last two days with her and the day she passed away and I find myself wanting to fast-forward to thoes days. I NEED to remember the other days. I NEED to find the "good stuff" if you will, because I can't let myself forget..........that is my worst fear........that I am forgetting and can't live with that.

Amazing Love.......

I had never been at such peace in my life. Through this whole experience I had been so nervous and I was so worried all the time you would think that I would be even more concerned about how long I was going to be able to enjoy her, but I feel like God put this blanket around us and was protecting her father and I from fear and giving her the strength to stay with us for a while. It was an awesome feeling. Rabecca and I had a long night and an even longer day, so I snuggled up to her and we took a long deserving nap. She woke me up and let me know that she wanted to eat again, so I fed her. This time she ate a little more than the first feeding. She managed to eat 1/2 oz of formula! Amazing Love is what God was giving us. We had to keep her very warm because her temperature would not go above 95 degrees. She was so wrapped in blankets (2 hospital blankets, her pink warm fussy blanket, and clothes and a hat) that I literally carried her like a football. We decided that we wanted to dedicate our baby to the Lord. A sort of baptism without the water, due to not wanting to give her chills. At 5:00pm literally everyone from our church showed up in our room to be there for this amazing event. Carrie Lee began by singing "Jesus loves me" and of course I began to cry as I looked down at my beautiful bundle, thanking Jesus for giving us the time that we had already had with her. Her uncle Scott , who is also our pastor read from the bible and talked to us about what it meant to dedicate our child to the Lord. It meant that I was giving her back to him, just as he gave her to us. It was very emotional for us to do that. I suppose it was just the words "giving her back" that put the lump in my throat. We both said "Yes, we are willing to give her back and that it is ok for Him to take her at his will". Then a very close friend of ours, Tim Lee, who is also a pastor spoke a few words and read from the bible as well then we prayed for her tiny little body to be healed by His hands no matter how that would be. Either take her home with to be with all the other angels in Heaven or to heal her and let her stay here on earth for a while. It was beautiful to see all those people come to celebrate her life with us. As everyone began to leave they each kissed and blessed her from their hearts. Now we were completely alone for the first time. Rabecca, Joey, and I. We each took turns looking at her and loving on her as much as possible. Dr. Clark came in several times and checked in on her and to his amazement each time he looked her over she was just fine. He couldn't believe it. " This little girl is teaching us all something. It is very rare to have a full T18 baby survive this long and do so well."
We stayed another night and everything was going well. The third day she began to have feeding issues. She was having trouble remembering to swallow and was not ingesting as much food as she had the two days before. A nutrition consultant came in and was giving me tips on how to hold hr cheeks, and because her jaw was set back a good bit it was wearing her out to try and eat, so she taught me how to position her face so that she could swallow. That worked for the next two feedings, but then again she wasn't getting enough. "We are going to put an NG tube up her nose and down into her stomach. We still want you to try with the bottle and whatever she doesn't eat you will have to put in her tube." Joey couldn't stand to watch that so he excused himself and went downstairs. I got real nervous and began shaking a bit. "You ok?" the nurse asked. "yeah just nervous" I said. "you will do fine. I am going to show you how to put in the 1st tube then you are going to try it." What? I can't do this I thought. So I put on my big girl pants and took the bull by the horns and said that I would do it. She made it look so easy. After she got her ready and we fed her I put her back in the bed with me. I began to sob. It all hit me that I was going to be responsible for ALL of this. I was her life line. "What if I do something wrong? What if I hurt her with the tube?" I was a mess. The next feeding it was my turn. I tried and I tried and I made her little nose bleed and that alone about killed me. My fear of hurting her was staring me right in the face. I had hurt her. I couldn't go home unprepared for putting in her tube. My doctor came in and said that he was discharging me. "I can't leave yet! I don't know how to feed her." I told him
" That has nothing to do with your discharge. You can leave her here in the nursery and come back tomorrow." There was NO WAY that I was leaving my sick baby there alone. I called Dr. Clark in and to make a long story short he made sure that we were able to stay another night so that we could get her feeding down pretty good. The next day was our day to go home. I was so excited! Joey& his dad went out and bought her a car seat. We hadn't done that because we didn't know if she would ever make it home. I didn't even have the nerve to put up her bed or put out her some clothes until 1 week before I went to the hospital. I just didn't want to have all these things out if she didn't make it home, because they would have been a reminder of what was never going to be..........a baby there. I walked into my house and laid lil' miss Becca on my bed and that is where she stayed.That bed that I finally bought and put up, she never slept in. I laid her in it when I changed the sheets on my bed and once to take some pictures of her in it. Finally we were a family of 9! Yup that's right nine!

After delivery.....amazing!

Now that she was here and breathing on her own Dr. Clark came in to assess her and confirmed the Trisomy 18. I still has hope hat maybe they were wrong. I didn't see anything wrong with her except her weight, but unfortunately Dr. Clark looked her over as I held her in my arms and he said that in his professional opinion she was T18. Even though that was a crushing blow I was still on cloud nine and didn't care. My prayers were answered. Everyone that wanted to meet her was able to and the ment more to me than anything in this world. Shortly after Dr. Clark left the nurs asked me if I wanted to give her a bath and I was extatic!! "YES I do!" The nurse brought over a tub filled with warm water and I had rought some bath soap from home because wether she was still born or alive my wish was to bathe my baby. They sat the tub up on the warming table and got her ready fro her bath, but I wasn't able to move my legs due to the epidural, so Joey and his sister began to wash her as I sat helpless beside her wanting to be the person who was going to bathe her. I watched as they gave her her bath almost feeling like I was robbed of the first. I knew she wouldn't have many first's and I wanted to be there and participate in all of them. I think that the nurse saw the sad look on my face so she offered to push my legs apart and sit the tub on the bed facing me so that I could be apart of this special moment. I couldn't have been happier. I gently washed her face, careful not to get any water in her eyes, and I washed that jet balck hair ever so carefully. I think that I cried the whole time, because I never thought that I would get all this much time with her.
After the photographer left,the nurse came in and said with a huge smile on her face and said"let's get this baby to your room and get you two comfy." As they were wheeling us to the room I could hear the nurses with excited voices saying " She's going to be admitted into her room!" I could hear Tammy saying "Take that white bow off the door! We have a live baby coming in here!" I was the happiest woman on earth. She was a miracle. Already beating the odds.
About an hour after we were in the room my nurse came in and asked had she been fed yet and I told her no. She sad that she would be right back. In just a few minutes she came in with a bottle and a premie nipple for her and gave me some advice on how to get her to eat. I took the bottle and rubbed her cheek and sure enough she was eating! She was eating on her own!! She was breathing on her own , eating, peeing, pooping the whole works! I never thought that I would ever be so excited to change a poopie diaper in my life, but I welcomed it!!

The Big Day..........

"Here we go baby!" I said to Joey. He just smiled from ear to ear. I could tell that he was just as nervous as I was, but he tried not to show it. The nurses did the usual thing, strap the monitor to me and checked her for about 30 minutes or so then she removed the monitor straps and told me when I was ready to let her know and she would let me hear her heartbeat again. You see when we decided on comfort care we also told them that we only wanted intermittent heart beat checks, because normally if a baby's heart went into distress they would do a c-section to get to the baby as fast as possible, but in my case since the baby was so sick, there was nothing that they could do to save her life. This way IF she did pass away in the labor process I would still know, but I wouldn't be focused only on that, I could think more positive. It was for my sanity more than anything. If she had passed during labor and I knew when it happened I don't think that I would have been able to handle it. This was better for me and her, less stress. 6:00 came and the nurse came in and gave me an insert pill to open my cervix. She told me that that would probably get me good and started since I was already at 2cm when I came in. So we called Kathy, Rabecca's mema. (our blessing, and level head for this situation) She was on her way home from Atlanta and it was getting late, but she said that she was on her way there before she went home. She came in as they were giving me another insert for labor. A few more hours went by and nothing! This lil booger was on her time and that was it! 11:00pm came and they couldn't give me anymore insert medication cuz I had the max, so we went to get a good old dose of petocin. 2 bags later still in the same spot. 3.5cm, obviously she was not ready for an appearance. I began to get a little uncomfortable so I went ahead and got the epidural...........then went to sleep! I slept for the entire labor. I never woke up until about 6:30am for a "check".....STILL at 3.5cm! She was definitely not coming until she was ready. Some time around 6:45am I thought I'd peed on myself so I asked Joey to call the nurse and tell her I peed the bed, when she came in she said "That's not pee it's fluid. Your water broke." "But I'm not dilated enough." I said. "Don't worry you have plenty of time, you still have a couple of hours at the least before you are ready." WHHEW! I started to get nervous and called my mom and mema's and papa's and aunts and uncles to let them know my water had broke to be listening for the phone. It wasn't even 10minutes I felt like I had to "go to the bathroom" then it got worse and worse and worse, so Kathy called the nurse and said that she thought Becca was coming now. The nurse came in and said "sure enough, let's have this baby!" "NO NO NO not yet. Really right now? " I asked her. She just smiled and said "the doctor is on the way honey, you'll be just fine." It was pure mayhem in that room! There were nurses, doctors everywhere putting the table down. Mema Kathy was taking pictures left and right (thank goodness!). For a reason that I didn't get at that moment, there was such a peace and calmness that came over me and I knew that everything was going to be okay. I was a little scared, but not to the degree that you would think. It seemed like I was watching all this chaos go on around me, but it was in slow motion.
" I need to push" I told the nurse "OK just go ahead when you feel like it" I looked at the doctor standing at the end of my bed. He was just watching, and waiting on her to come. I gave a pitiful, tiny little push. "Come on now you can do better than that. You are not going to hurt her." said the nurse. I took a deep breath and pushed real hard. "She's almost here, a little harder this time" I took a real deep breath and pushed with everything inside me. I looked over at Joey and he was in complete amazement and was smiling saying "come on baby, she's almost here" "HAPPY BIRTHDAY RABECCA!!" said the doctor. "Is she crying...... is she crying?!!" Then I heard the most beautiful sound in the world.......her tiny little angry squeek of a cry! SHE WAS ALIVE!! I heard my baby cry!!!! It sounded like a thousand angels singing to me. I felt the presence of God in that room that day. I began to cry a happy cry and I got to reach down and touch her little body as they took her legs out. I wish I could have put that very moment in a bottle and kept it forever. They took Rabecca over to the weight table and she came in a whopping 3lbs 12oz! The doctors quickly evaluated her. I was trying to look over and see her, but I couldn't. I could hear her squeek a little here and there. Rabecca was quickly wrapped and brought to me. I was holding my baby girl ....ALIVE!!! Thank you God!!!!! I was so in love with her at that very moment. That was all I asked Him for. Just let me tell her I love her Lord, was a prayer that I had prayed a million times during my pregnancy. I must have said it to her 100 times, till her daddy said very softly.."Can I hold her?" "You haven't held her yet?" I asked " No" he said . I immediately kissed her head and handed her to her daddy. I have the most beautiful picture of Rabecca and her daddy. He is looking down at her with such love in his eyes. I believe that is the happiest that I have ever seen him. As we were enjoying all the chaos I hadn't noticed the room of people who were flooding in to meet her. There were all 6 of her brothers and sisters, her grandparents, aunts and uncles, close friends and a photographer who was taking the most beautiful pictures in the world for me to remember this moment. My baby was alive!! She was breathing all by herself, her heart was beating properly, she was responsive, and I was holding her. This was the most beautiful day ever!!!!!

Finally a peace was coming over me.......

I am getting excited for the first time and I am liking it! Our bags are packed, Joey has taken the week off from work and the kids are here at home. Everything is in place. Now it is Sunday the 30th and we are having a breakfast at church that I put together for our youth, that had been on a camping trip, and their parents , hoping to reach some of the families that have no home church. We are small, but we have a huge heart at Skypointe. Everything was going pretty well. Kids were streaming in and parents were staying. It was a great service. During the middle of the worship time I broke down and began to cry frantically. I couldn't catch my breath and the walls of the church seemed to be closing in around me. It was all hitting me at once. This was it. I was going to go and have my baby who's fate was in the hands of the Lord and I didn't know if I would be able to see her eyes open, or hear her cry, or even tell her that I love her just once. It was the beginning of the end to me and I was in a panic. I left the service and excused myself into the back room where Miss Lillian and G'ma Jo and Joey came in to comfort me and reassure me that God was in control and that I needed to trust him. I gathered myself together and went back into the service.
Joey and I had talked about having the church have a special prayer for Rabecca that happened to fall on that particular Sunday. After the service was over Pastor Scott asked those who would to please stay for a very important prayer and to my surprise everyone stayed. He pulled up a chair in front of the congregation and asked me to come and sit down. I did and he told everyone that I was his sister-in-law and that the prayer he wanted to have was for my unborn baby. He asked me to tell what this prayer was for and I couldn't speak, so Joey told everyone that the baby was terminal and gave them a brief, but thorough description of what was going to happen today. After Joey told our story, Pastor Scott asked anyone who was willing to come up front and place their hands on me and we were going to have a mass prayer for Rabecca's life. To my amazement everyone in the church, even people I has never met before came to the chair where I was sitting and placed their hands on me and the baby and prayed like I have never heard people pray before. There wasn't a dry eye in the sanctuary when we were through. These people that I knew and a lot that I had never met in my life were praying for my little girl's life! It was an amazing thing. I literally felt the presence of Jesus in that room. My sister-in-law sat in front of me and held my hands. It was the strangest thing I have ever felt in my life. I felt a calmness come over me and the fear began to leave me. All these weeks of wanting this feeling and now I was finally getting it. When the prayer was over and I began to stand up, people surrounded me and whispered to me that they loved me and that they were going to continue to pray for me and lil Becca. It was an incredible feeling.
I went home and got my things together, got Rabecca's bags and we headed to the hospital. It was so surreal, almost like I was watching someone else walk in the hospital and begin a terrifying journey. I checked in and they took me to my room and handed me a gown. I looked at the nurse and told her that I had my own pj's until the induction tomorrow. "Oh honey we are going to begin the induction around 7 pm tonight." "WHAT? I was under the impression that this would all begin in the morning not tonight. I wanted to make sure the kids and the grandparents could come. This was too early to begin the labor process. " I said. "Nope we are ready to start tonight". Now Joey and I are making phone calls to everybody that we could think of. "Be ready when I call you." We were telling people. "It may be sooner that we thought." We were on pins and needles. I tried everything I could to prolong the beginning of all of this. "I haven't eaten yet." I told the nurse hoping that would buy me a little longer. Well it didn't work. She told Joey to hurry up and go downstairs and grab me something to eat, because at 6:00pm we were going to begin the induction.
I know that the Lord knew my heartache, because for some reason it was gone and all I was , was excited, still a little nervous, but I was excited. Something in my heart told me that it was going to be okay. I listened to my heart..........

I picked her day......

This doctors appointment made me so nervous, because I knew that I had to pick a date for Rabecca to be born. You see we knew the possibility of her being still born or the possibility of only getting a few minutes with her, so at the previous appointment I was told to think about inducing her and that I needed to pick a day. Hmmmmm....pick a day. Thoes words rang throughout my mind, only it sounded more like "You need to pick a day for your baby to die" It sent chills up and down my spine. I know that I was picking the day of her birth, but in my mind I was picking the day she would die. I could'nt stop thinking thoes words. Over and over again. I got down the calendar and decided it would be a Monday, so that the kids could all stay at the house over the weekend and then come to the hospital as soon as labor began to meet their sister. I didn't want to make it for more than a week before her real due date, because she needed all the time she could get to develop thoes lungs and grow as much as possible. "October 1st 2007" I said out loud to Joey. He said "are you sure?" "I am positive."

The next Monday was my last doctors appointment and I went in and talked to the doc about what would be best for me. Should I have a C-section or natural birth. I had already talked to Dr. Clark about this and I guess I more or less wanted to see if we were all on the same page. We were. She said that my best chances at a live birth were to have her vaginally. I agreed and then she asked me if I had decided on a day. I told her that yes we did October 1st. She asked if I was sure and I said yes then she excused herself from the room and came back in about 15 minutes with a lot of papers and said that it was all set. I needed to be at the hospital on Sunday at 3:oo pm. My heart began pounding. I was going to have a baby in 1 week and I was terrified! You'd think that this was my first considering how nervous I was. She alos said that my blood pressure was way up and she wanted me to stop working. I called Tammy when I got home and I asked her to be there and she said she would. I needed all the support that I could get. We called the family and told them our plans so that anyone who wanted to be there could. We wanted to share her with everyone that could come. I began to get that nesting feeling and I cleaned my house from top to bottom at least 3 times that week. I packed my bag and I finally talked myself into packing one for her too. I went to the crafts store and bought hand and feet print molds and 2 scrapbooks. I wanted every momento possible from the hospital. I was beginning to get excited! That was a wonderful feeling. It was something that I had wanted to do from the time I knew she was sick, but I just couldn't .............not until now anyway!!!!! Now I was excited as could be. This was the calm, wonderful feeling that I was looking for. I am going to have a baby in a few days!!! I couldn't wait!!!

My count down was beginning......

Time was beginning to run out for us. I had written a VERY specific birth plan for what we wanted. Things like she was not to be referred to as "the baby", she was to be called by her name, Rabecca. There were to be NO students, only the necessary people, and they were to be informed of the situation before entering the room with us. That was to protect Joey and I from having to explain her condition to every person who entered our room. Rabecca was to be VERY quickly assessed, then wrapped and handed to me. All the vitamin K, weight and anything else unnecessary was to wait until her daddy and I could hold her and whisper to her how much she was loved. It was a very extensive birth plan, but no one questioned it and they kindly obeyed our wishes. Tammy had taken time out of her schedule and toured the rooms that we would be in and showed us where the family could wait close by. As we walked and talked to Tammy in the hospital she knew that our time was very near, only one more ultrasound and just a few more weeks till her due date. As we talked to her in the labor & delivery room she asked me if it would be alright to do a couple of things for me. I said "sure what kind of things were you thinking about?" She said to me" Julie, you are going to be going through a difficult time here in the hospital. When babies are born mothers get a pink or blue ribbon hung on their door, and there is nothing for mothers with a grim outlook, there is nothing available to hang on the door, would you mind if I made you a white bow with a little pink it to show that there was life here and that it mattered no matter how short of time she was here?" I just cried and hugged her and told her that I would love to have that. She also wanted to paint me a tile with a beautiful butterfly on it with her monogram. Then she asked to do a second favor for me. "I know how hard it is to find clothes for preemies , even though she will be full term she is going to be very tiny and I don't want you to have to worry about finding her a dress for when Jesus comes to take her home. Would you mind if I had her one made? I work with a wonderful group of ladies that will do it free of charge." I was ecstatic! "YES! I would love that !" Tammy was truly a God send! She was thinking about all the little things that I would have never thought to do. She was helping me make memories already. I couldn't have been more grateful to anyone! She told me things that I never knew that I had an option to do, like bathe her in the delivery room, stay with her as long as I wanted after she passed, taking pictures for me, getting a lock of her hair, little hand and feet prints in a mold. Things that I can never replace and if it were not for her I would never have gotten.
A couple of weeks later was the last ultrasound. The doctors looked at her very closely, because up until this point there was nothing visibly wrong with her. He told us that all 4 parts of her brain were there and getting the blood flow necessary to function. Well after all that bad news I had been getting Joey and I started clapping and squealing like two little school girls going to the prom! The doc just looked over his glasses and said in a tone I didn't like too well "Do you not realize what the extent of the baby's condition is?" DUH!!! I've only been living it for the last 18 weeks!! I, in a smart a** tone said " Yes I do know what I am facing, but any good news is worth cheering about! This is my daughter and I am happy to hear something besides the tough stuff!" Well I spoke too soon, because a few minutes later another doctor came in and looked her brain over and told us that he wasn't absolutely positive, but he thought she had Dandy Walker Syndrome. Another slap in the face! "What's that I asked?" He explained to me that in the back of her head where her brain was suppose to come together it has a separation in it. It controlled her movement and balance. "It could just be a shadow, but I think I am probably right." CRAP!!!! CAN'T I GO TO THE DOCTOR WITHOUT HEARING ALL BAD NEWS? I was due in 3 weeks and I told Joey no more ultrasounds! It is what it is and I can't put myself through anymore of this! I needed to go home and plan for her birth.

Here we go.....

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.

The decision....

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.

What's next for us......

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?

The beginning....

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.