the LOST ones


Jacob John

Our only child together was 17 when we got pregnant for Jacob. We were both still young, so the thought of having another baby wasn't that frightening. I'd had a miscarriage at 8 weeks, 2 months before and I waited to tell everyone about the pregnancy till I was past this point. I had my first doctors appointment when I was approximately 12 weeks and got to hear his little heart beat. "Sounds good" said the sonographer. I was so happy to have heard the heartbeat, since the previous pregnancy had ended before I even had a doctors appointment. 2 months later, I had my 20 week ultrasound where we found out we were having a boy. We were so excited! 4 days after my ultrasound, I got a call from my doctor telling me that my ultrasound was abnormal. The baby had a diaphragmatic hernia and they couldn't detect a 4 chamber heart. Immediately, I felt like I was in a dream. I think for the first day or so, I was in shock. I didn't have any idea how serious these conditions were. I was referred to a perinatologist and had my appointment the next week. At this appointment, I was told that if I wanted to terminate my pregnancy, I only had 1 week to legally do so. I was offered amniocentesis to detect any chromosomal issues. I told them that I would base my decision on whether to terminate on the results of the amnio. That was a Friday. On Monday, the genetics counselor from the hospital called me and told me that the amnio was negative for all of the major things that they test for, but that they wanted to do a more invasive amnio to test for more uncommon problems. I was so happy with the results. I told her that I would be going thru with the pregnancy and we'd deal with the medical problems after he was born. This was also the first day that I felt Jacob move from the outside. My husband and I felt him kick our hand. We thought it was a sign that he was telling us that everything was going to be ok.
A couple of weeks later, the genetics counselor called back and said that the secondary results came back and that it appeared as though the baby had a partial deletion of chromosome 8 which was known to cause the problems that we already knew he had. It also caused other problems like learning disabilities, behavior problems, and mild mental retardation. This was very hard for us to hear. We were already past the point where we could terminate (Not that I would have done that anyway) and we were going to be having a baby with several severe health issues. A month later, I had an appointment with the NICU team and several specialists and was told that since Jacob had a complex heart defect, he wasn't a candidate for ECMO or surgery. This was the day that we figured out that our baby was not going to survive. I was about 29 weeks. For the next 2 months, I carried Jacob and felt him move inside of me just as if there was nothing wrong. It was a constant reminder of what was to come. Two weeks before I was due, I made a doctors appointment to see if we could induce labor early. My blood pressure was getting out of control and I was getting very anxious. We scheduled the induction for Thursday May, 5 2011. The night before my induction, my husband and I were laying on our bed and he grabbed his stethoscope (he’s a nurse) and we tried to listen for the heartbeat. We couldn’t hear it, but that didn’t really worry us. We had only been able to hear it one other time with the stethoscope and it was very faint. We both sat there for a very long time with our hands resting on my bare belly. It would be our last night in bed with our baby. We felt, what we thought was, the baby moving and squirming. It was bittersweet. The next morning, we arrived at the hospital at 7:00am. Immediately, I was in a gown and laying in bed and being hooked up to monitors and IVs. I was surrounded by all of my closest family. I’m so glad that they were there for me. The hospital staff was amazing. I had a private room and they provided us with the adjacent room as an extra room with couches and a bed and chairs and had snacks and refreshments refilled for my family on a constant basis. There was a small purple leaf attached to the outside of the door of each of the rooms kind of as a sign of grieving and so we weren’t bothered. I didn’t know what to expect with the induction, as I had no issues with my previous labor and childbirth. The monitors couldn’t detect the baby’s heartbeat. My nurse, Kathleen, looked all over and asked if I had felt the baby move lately. I told her about the previous night and what we felt. Just then, I felt the same thing and she put her hand on my stomach and she told me that it was a contraction. She was having them bring the portable ultrasound machine up to see what was going on. At that moment, I knew Jacob was gone. I looked at it as god’s gift to me, to not have to watch my son die. All through the latter part of my pregnancy, my biggest source of stress and anxiety was, knowing I was going to have to watch my baby die. No one could tell me how long he would have lived or what to expect other than “probably not too long”. The ultrasound tech confirmed my theory. Jacob was already gone AND he was breach. We talked about the option of me having a C-Section, as this is what they normally do for breach babies, but the surgeon said that he would rather me try to have it natural. (Obviously a man…) Kathleen also explained that since he had passed, and there was no way to tell how long he had been gone, there were some things that I had to be aware of about his appearance. He might have skin sloughing off, his bones (mainly his skull) might be mushy, he might be discolored. We had to be prepared for the worst. At about 9:30am, I was induced with cytotec. Within an hour or so, I started feeling contractions. They were very mild and tolerable at first. By mid afternoon, they had started me on pitocin and I was feeling a lot of discomfort. I’m guessing it’s because the position the baby was in. I think he was pressing right into my bladder. Every contraction was excruciating. I have a very high tolerance for pain. I didn’t even go to the hospital until I was dilated to 8 for my first child. They kept asking if I wanted something to ease the pain, but I declined because I’d always been told that it causes labor to slow down and it already seemed like I was dilating slow. 8 hours after my induction began, I was only dilated to 4. Probably about 8:00, my water broke. I was so happy for this to happen, as that is usually the sign that the pushing will begin soon. The new nurse on the night shift, Syddora checked me and I was dilated to 6. She said “Oh, a foot. I’ve never felt a foot before”. She also told us that his foot felt firm, so there was a good chance that he hadn’t been gone for long. For the next few hours, I was in the worst pain imaginable. There were moments where I honestly thought that I was going to die. I could see it was going to be a long night, so at about 10:00, I asked for something for the pain. Syddora gladly gave me a half of a dose of stadol. Within 2 minutes, I was in dreamland and all the pain was gone. This gave me some rest and allowed my family to rest as well. By 11:00, it had worn off and I opted for another half of a dose. This one lasted till just after midnight. Syddora checked me again and I was dilated to 9. She said it was just about time. Over the next hour or so, she had me push with each contraction. She said I was making good progress. She probably would have been able to completely deliver him, but she had never dealt with a vaginal breach birth before. When one leg was out, and she couldn’t feel the other one, she went and got the doctor and we finished delivering Jacob into the world. The whole time I was pushing, Syddora was saying prayers for us under hear breath. She was so amazing. Surrounded by my sisters and mother and mother in law and my husband, at 2:16 am, I gave birth to our beautiful (And yes, he WAS beautiful and perfect) baby boy. 10 fingers and 10 toes and pink skin and beautiful curly hair. How could something so perfect on the outside, be so imperfect on the inside?? They took him to the nursery where my sisters and mother and in laws cleaned him up and put a diaper and clothes on him and wrapped him all up and my mother in law brought him back into my room. He weighed in at 6 lb 11 oz and was 19 ¾ inches long. My husband and I took turns holding him and kissing him and saying goodbye. Everyone was sobbing. It was the saddest thing anyone could ever imagine. We said our goodbyes to our little man and shortly after that, everyone left. My husband offered to stay with me, but by this time it was after 4:00 and I told him to just go home and get some sleep. During the night, Syddora baptized Jacob and they took pictures of him and got together a bag for me that had his birth certificate with his footprints and hand prints on it, the clothes that he was dressed in, the blanket that he was laying on and little elephant beanie baby that he was holding in the picture. They also cut a lock of his gorgeous curly hair. We had decided that we wanted to keep him with us forever, so we had told them in advance that we wanted him cremated. I woke up at about 8:00am the next morning and had breakfast. Shortly after that, my husband and daughter and in laws came to see me. I got discharged just after lunch and we went to funeral home to make arrangements. We didn’t see the need to have a service for him. Everyone that wanted to say their goodbyes, was at the hospital the night before. We picked out a little tiny urn and made the arrangements for the obituary to be in the paper. That was tough. I never thought I’d be putting my child’s obituary in the paper. I took the next few weeks off of work. My brother graduated from law school and my daughter graduated from high school in May. So I was pretty busy and my mind was kept busy. I look back at the whole experience and still say “I can’t believe that happened to me”. I miss him so much. I have his urn sitting right next to my bed on the nightstand. I say “good morning” and “goodnight” to him every day. He’s been gone 4 months now. For how little of a time that he was in our lives, he sure left a big hole. We’re gonna try for another. I pray that this one goes better than the last. This was my story about Jacob John. Thank you for taking the time to share it with me. <3

By Lisa Perry


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