Jake's Place

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This is Jakes story. Its not short, so grab a cup of coffee and pull up a chair. I was 18 when I found out I was pregnant. I have to admit that the timing for my first baby was not good. I wasn't even with his father anymore, but I wanted him from the first minute I knew I was pregnant. My early pregnancy was completely uneventful. I had an ultrasound at 16 weeks and everything looked okay. But that was about to change. At about 23 weeks, Thanksgiving day I had rhythmic back cramps all day. I had mentioned something about it to my mother and grandmother, but they thought as I did that it was braxton hicks. I had an appointment in 2 weeks so I figured I would ask then. At my appointment the doctor never did an internal exam, he did do another ultra sound and everything was fine. I didn't worry after that, the cramping had pretty much gone away.

On December 12th I woke up and felt okay, but as the day progressed the cramping had come back. I didn't feel very good so I spent the day lying on the couch Rubbing my belly, and dreaming of holding my baby in my arms. The cramping was getting worse, and I felt like I had to have a bowel movement. When I went to the bathroom I couldn't go. It was then that I realized that I had lost my plug. I panicked and I called my mom at work, she said to lie down she was on her way. She got home in about 10 minutes and took me to the hospital. The admitting nurse felt that I would be okay to walk up to L&D. When we got up there the nurse said to change into a gown and she would be in to check me. No one seemed very excited so at this point I calmed down a bit. She finally came back to check me after about 15 minutes. I knew as soon as she started the exam that something was wrong. I could tell by the look on her face. Before I knew it she was calling for help and they were tipping my bed so the head was down. My doctor was not available so one of his partners came to do an ultra sound. He looked at the screen in silence, he never spoke to me the entire time. When he finished he told me I was in preterm labor. That there was nothing they could do to stop it. I was dilated to 10cm, fully effaced, with my bag of waters bulging through my cervix. I started to cry immediately, how could this be happening? They were telling me it was time to deliver my baby. I kept asking if he would be okay? All they could say was we don't know. After waiting for what seemed like an eternity for the transport team from childrens hospital, I started to push. While I was pushing the nurse was pushing with all her might on the top of my belly. The baby was head down, but not engaged. After a few pushes, the doctor started suddenly yelling out orders to the nurses. They quickly told me that the cord had fallen through my cervix ahead of the baby, and his head was cutting off his oxygen, and that I needed an emergency c-section. The next thing I knew I was being prepped for surgery.

I woke up to someone saying " Pam, Pam, wake up and look at your son" I was still very groggy from the anesthesia. But I do remember waking up and seeing the tiniest little red foot in a big puffy white blanket. I touched that little foot and prayed for my tiny son. They took my son, to Children's hospital on the other side of town. Because of my surgery I had to stay where I was. My parents went with the baby to Children's Hospital. When they came back to see me later that evening they brought Polaroid pictures of my baby. My mom said to me "don't you think he needs a name?" I had picked out Jacob Kayne so that is what we went with. After 3 days I was allowed to move to the hospital that was connected to Children's so I could be closer to Jake. I was so excited to finally see him again. There is no way for me to explain the despair I felt when I walked into the NICU and looked at the rows of sick babies and didn't even know which one was mine. My mom took me to his isolette, there was a nurse there changing his diaper. It was one of those green surgical masks. I couldn't believe how tiny he was. I was afraid to touch him. With some encouragement from his nurse I opened the door to the isolette and stroked his tiny foot, crying tears of joy. I loved my little tiny son soooo much. At that moment his alarms started going off, I recoiled in horror. His nurse reached in and gave his back a little rub/shake. She explained to me that he was having a "spell" meaning his heart rate was dropping. I was too scared to touch him again, for awhile. But I couldn't keep from touching him for long. I couldn't get enough of him. I would sit and stare at him for hours, until my nurse would come find me and make me go back to my room and rest.

After five days I was released from the hospital. It was the hardest thing I had to go through since he had been born. I hated leaving without him. I would come back every day and sit all day with him. Learning what he liked and what the vent settings meant. I wanted to know everything about him, I didn't want to miss a thing. Sometimes I would even go back in the middle of the night. One of the times I had visited him in the middle of the night, I came home and realized that my ankle was as big around as my thigh. I asked my dad about it and he told me to call my doctor. I called the doctor and he told me to lie down and call an ambulance. The ambulance took me to the hospital where I had him. When I found out they were admitting me I was heartbroken. I wouldn't be able to see Jake. It turned out that I had developed a blood clot in my leg from the c-section, and I would have to be in the hospital for awhile until it dissolved. That was December 19th. I would be there over christmas. This fact brought me to tears once again. My whole family brought Christmas to me in the hospital. But they couldn't bring the only thing I wanted... Jake. I wound up being in the hospital until December 30th. When they finally let me go I went straight to Children's so I could catch up on the time I had missed with Jake.

Jake had been doing okay for a preemie, but they were having some problems weaning him from the ventilator. On New Years day they explained that his ductus arteriosis had not closed when he was born. It was common for preemies to have this happen. They had tried 2 courses of medication to close it and it had failed. So they said they needed to do surgery. I was crushed... how could they possibly do surgery on someone so tiny? They explained the procedure and asked me to sign a release for the surgery. It was the first of many things I would do as a mom. Jake was scheduled for the surgery on Jan 3rd. I went to the hospital that morning and spent some time with him before the surgery. It was then that I held him for the first time. Just staring, touching, and remembering everything about him. My mom had bought him a little tuxedo sleeper and the nurses dressed him in that before they took him out so he would be dressed for the occasion of his mommy holding him for the first time. Jake came through the surgery with flying colors. They were already starting to wean the vent settings. I stayed with him the rest of the day, unable to touch him because they wanted him to rest. Reluctantly I left about 10 PM. I told the nurse I would be back in the morning.

When I came back the next day I saw the most beautiful thing I had ever seen. It was Jake's face without tape or any tubes. I couldn't believe it but they had weaned him from the ventilator early that morning and wanted to surprise me when I came in. I met the nurse who had signed on to be his primary nurse that day. Her name was Kathy. I remember being so angry with her when she wouldn't let me touch him. She wanted him to rest. I understood but I was so excited to touch his little cheek, and hear him cry. I would put my ear to the window of the isolette so I could hear his tiny squeaks. After that it was like a honeymoon period. I spent my days sitting with Jake, reading to him, watching him, and patting his little bottom. He used to lay on his tummy with his little butt up. He loved being patted. All his numbers would go up when he was content. Jake continued to do well, gaining weight, needing less oxygen. He was even started on tube feedings. One of the nurses told me that they do the baths at night when it isn't so crowded. So of course I came back on the night shift hoping to catch his bath. Well it worked I was there and the nurse let me help. She took pictures and it was the happiest day of my life. Jake didn't like it but it was sweet music to my ears to hear his protest. His little voice was getting stronger everyday. After his bath that night the nurse had dried him and put him back in the isolette. While she was charting and I was watching him I noticed that he was pulling his fist into his face. It didn't look right so I asked his nurse about it. She said that he was probably still mad about the bath. She was going to give him some Tylenol, and let him rest. I felt uneasy but I went home to get some sleep.

That night I had the most wonderful dream of playing on a bright sunny day with Jake when he could finally come home. I was ripped from that dream by the telephone ringing. I knew it wasn't good. When I picked up the phone they told me that Jake was having seizures. What I had witnessed the night before was the beginning of it. They were giving him medication but it was not working as well as they had wanted. That was Feb 7th. The next night I got another middle of the night phone call. Jake had to be put back on the ventilator. I cried and sobbed so hard. How could this be happening? He was doing so well. I had my pastor come to the hospital and baptize Jake that night. Jake's seizures were getting worse, and harder to control with drugs. He was seizing almost 24 hours a day. When he was on his back his little legs would go and go. It looked like he was bicycling. They started doing serial CAT scans of jakes head, and they found out that Jake was bleeding into the ventricles in his brain. They told me that it could stop on its own and he could recover without much residual damage, or that it could continue. We would have to wait and see. I was in a daze from then on. His nurse Kathy was wonderful, letting me cry and despair to her every day.

Jack after he was placed back on the ventilator

Jake's brain continued to bleed. His head began to swell at about 1cm per day. 10 days after his first bath his doctors called a family conference. They told me that Jake had what they called a grade 4 intraventricular hemorrhage. From the CAT scans they could tell that if Jake lived he would be deaf, blind, and a vegetable. He had virtually no brain tissue left. They told me it was time to decide if we wanted them to continue treating him. It took a minute to register what they were saying to me, they were telling me he was going to die, and they wanted to know if I wanted him taken off life support. They told me to take all the time I needed. I called my family together, my pastor, and Jake's father. With their help I decided that we were not saving Jake's life anymore, we were prolonging his death. We decided to remove him from life support. We called all our family and friends to be with us, and to spend time with Jake. When everyone got there I told Kathy we were ready. She gave Jake some morphine and removed him from the vent and all his IV's. She brought him to a quiet room with a couch and a rocking chair where we could finally hold him with no wires or tubes.

While I sat and waited for her to bring him to me I thought my heart would pound out of my chest. I was panicking inside. I didn't think I could do this. But I had to be strong for Jake. He needed me to help him. It would be the last thing I would ever do for him. So I did. I had my family come in and meet him, and hold him. After everyone had a chance I asked them to leave. From then on it was me, his daddy, my pastor, and his favorite nurse Kathy. Over then next three hours we sat and rocked Jake, and talked of the things we wished for him. Jake's breathing was changing, I knew he was getting too tired to fight, so I whispered in his tiny ear that it was okay if he was tired. To let go and go home to God. That mommy loves you sooo much and we will be together again. Jake slipped away quietly in my arms. I wanted to spend some time alone with him so I asked everyone to leave. During that time I rocked him and sang to him, and tried to remember every tiny detail. My biggest fear was forgetting him. The next few days went by in a haze. I planned his funeral with my parents help. At the grave side I had the pastor read the bed time nursery rhyme Winkin Blinkin and Nod. We also released 24 babyblue and white balloons. I wanted everyone looking up to where Jake was now happy and pain free. The day was so sunny and crisp. Just like the day in my dream so long ago.

I wrote this poem After Jake went back on the ventilator
I see you lying there
tubes in your arms
tape in your hair
the constant sound of the ventilator
I wish I could help you....
you open your eyes
you twitch your legs
you don't breathe
I wish I could help you....
My arms ache
My ears ring
I can't hold you
I can't hear you
I CAN'T HELP YOU!
I LOVE YOU..........
Mommy

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