Out of intensive care…

1115092142

Out of Intensive Care

Jacob improved. It was a grand day when he was wheeled in his crib out of the Pediatric Intensive Care Unit and into the regular Children’s Hospital. He still had red little cheeks and looked pretty rough, but to me he looked perfect.

Only immediate family had been in to see him, and we had not allowed the girls to come. Seeing their brother in such a state would have been too much for them. Relatives sent well-wishes, cards and prayers. My cousin sent him a little monkey to have in his bed. We were able to relax.

The day we went into the regular children’s unit I got hit hard with a bad migraine. My mom stayed with Jacob while I went down and got IVs to bring it back under control. I came back up and Mom stayed while I finally slept.

I learned that the care in the PICU was very different from the care he got in the regular children’s hospital. I wasn’t overly impressed with the nurse that night, but the girl on the next shift made up for it. I was and am so very thankful for the team of doctors and nurses that saved my little man. Everyone played their part and if they hadn’t he wouldn’t be with me today.

It was a big day when we were able to bring him home two days after he was released from the PICU. He wasn’t allowed to go places, or have visitors, and it would be a long time before he could return to a regular life and schedule, but I didn’t care. I declined my job offer, knowing they weren’t going to wait for me. I broke down and filed for county assistance. It was a huge blow to my pride, having to ask for help when I had always made it on my own. I didn’t have a lot of choice. Jacob couldn’t go to daycare and I couldn’t work. I needed to provide for my family however possible.

This was not Jacob’s last stay in the hospital. In fact, he was hospitalized six times by the time he was two years old. I learned to monitor oxygen levels and listen to his lungs and throat. I learned when to load him up and fly to the ER as fast as I could. He was placed on four maintenance nebulizers a day, something that we have only recently been able to discontinue, and start again with each cold or sniffle.  He had/has rescue nebulizers on hand. He has steroids on hand. I became very capable of handling his respiratory problems.  His big sisters pitched in, they learned how to give him his medication, how to check his oxygen and when to worry.  After he spent his third time in the hospital within a few months of his first, I moved back home with my mom and dad for help with him.  He never had to go back into the PICU, but I remained in a constant state of fear while he slept at night. We stayed with them for three months, until the renters moved out of my home, and then we came home for good.

Slowly but surely….

Baby J in the PICU

Baby J in the PICU

The days moved slowly. My eardrum burst sometime in the first two days. I don’t really remember when. It is all kind of a blur. The PICU nurses were great with Jacob and with me. They sent me down to emergency care to get antibiotics for my ear, and some pain meds. My headache felt like it was ripping my head apart but I didn’t care. They stood there with me while I threw up over and over again into the toilet in his room. They brought me warm packs and crackers. I wouldn’t, couldn’t, sleep. Only when my mom was with us did I relax long enough to sleep for short bursts.

On the third day Jacob managed to fidget enough in his sleepy state to dislodge his breathing tube. They felt that they would have to intubate again, but waited to watch his vitals. Mom and I remained at his side. He made it through an hour, an evening, and into the middle of the night without the respirator.  My little man was a fighter!!! In the morning they told me that they no longer thought they needed to intubate, that he was maintaining pretty well on his own. I breathed a sigh of relief. I had yet to be able to hold him. There were no guarantees but things were getting better.  They started to wake him up.

His father called and asked about him. He said he would be up on Friday to see him. He went to his parents house the night before and then went out to party with friends. He showed up the next day at noon, feeling like he was the hero because he picked up lunch for mom and myself.  He stood there and looked over his son. He told me that I had “done good” with my diligence. As if I wanted or needed his approval. He left and went home to go out with friends again. He did not come back while Jacob was in the hospital.

Once Jacob was fully awake he pitched a fit. He wanted his Mommy, he wanted his bottle. He wanted to feel better. They finally managed to rearrange all of his cords and wires and IV’s so that I could hold him. I cried, and cried some more. He was content in my arms and then he managed to pull out his feeding tube. We tried the bottle and he ate like he always had, with a passion. He became agitated if I wasn’t holding him, if he would hear my voice or see me he would start to cry. My mother spent hours by his bedside singing to him while I rested on the sofa behind her. She wanted me to have energy for the nights, when she had to go back home.

Slowly, but surely he got stronger. They said that he was starting to come around. His fever went away. They didn’t know why or how he had gotten so sick but later we learned that he has reactive airway disease, which manifests with croup, along with asthma.

My baby boy fights for his life….

Baby J in the PICU

Baby J in the PICU

Things were starting to settle. I had a job offer, and I was filling in at my parent’s office for their receptionist two days a week. She wanted to cut back on her hours and when she found out I was back she called and asked if I wanted to work part of her shifts. I readily accepted. My little man went to the same daycare my girls did. I couldn’t have left him in better hands.

Then something happened. My baby got sick. He started with a cold. It didn’t clear up, and always the paranoid mommy, I hauled him into the pediatrician. He had a cold, and it was settling as croup. They put him on steroids. He didn’t improve. I brought him to the ER that night and they told me to be patient, that he would be okay, I just needed to give the steroids time to work. Okay. I took him home. I brought him back the next day, and they placed him on antibiotics. That night I had him resting in his car seat on the floor and I was sleeping off and on next to him. His breathing was not improving, in fact, as I watched, his little chest would actually suck inward as he tried to inhale. I called the ER again. They said to bring him in. Later I learned that this is called “retracting.” My mom picked Jacob and myself up. I woke up my girls and told them where I was going and that we would be back as soon as we could. They were okay with that, at almost twelve years old.

The ER doctor looked him over. He said that it was croup and they gave him a nebulizer. His breathing improved a little bit, but he was so exhausted that he could barely hold his head up. I wasn’t feeling well, I had an ear infection, but had been ignoring it in my quest to take care of my sick little one.  He was going to send us home. I was afraid and my mother and myself expressed our concern to the nurse on duty. She told me that she was probably going to get in trouble but that she was going to tell the doctor that we were not going to take Jacob home. She left the room. They called the pediatrician on call and Jacob was admitted to the hospital.

The pediatrician arrived and checked him over. My little one was quiet but very tired. He was lethargic. He quietly explained that although his vital signs were stable at the moment, that he was likely to go south quickly and that he needed to be in the pediatric intensive care unit it in Fargo. Not only that, but he needed to get there quickly.  He called in the life-light team. Jacob’s father didn’t believe in baptism so Jacob had not yet been baptized. It had been on my “to do” list when we left. They called in a minister and my son was baptized by an unknown man with nurses and my mom as witnesses. I do not even know what denomination or who is sponsors are. My mom called my dad and he got in his vehicle and made record time  to the hospital in order to drive us to meet my son. We called my cousin in Fargo and asked that she be there to meet my son when he arrived, so that at least family would be there and even if he didn’t know them well, I knew in my heart that she would make the decisions for him that she could.

The lifelight crew arrived. The doctor had explained that it was going to be hard on Jacob. They would have to put an IV in and prepare him to be possibly intubated in flight. He said that Jacob would be upset and make himself worse, and that they didn’t want to prepare him with those things until he could be quickly gotten to the intensive care unit. They got him ready, my little boy screamed and cried and they loaded him on a tiny stretcher, and took him away from me. It was awful. I felt so helpless. We ran to the parking lot and got in Dad’s truck and we left as the helicopter left the top of the hospital. My heart was in my throat, wishing I had been able to go with him. He arrived about twenty mintues before I did. They allowed my cousin and her husband into the intensive care unit until I got there.

When I arrived my little man was in bad shape. He was weak, he made little mewling noises and then would try to cry but there was no noise. He would try to breathe and his little chest would sink in and not come back out. He didn’t know I was there, holding him, trying to calm him and comfort him so that he could breathe. Nothing helped. I held him, helplessly. I prayed. I prayed harder than I have ever prayed before. I held him close, I talked to him, I looked to my parents, helpless in the room with me. There was nothing we could do. The nurse yelled for the doctor that they needed to intubate him immediately. He was taken from me. I stepped back as an amazing team of doctors and nurses gathered around my little boy. I was so helpless, and he was dying.

They pushed us from the room and I stared through the little portal window outside of the intensive care unit. I could see his lifeless little body, so still, the doctors working frantically. They came out and sent us down to the family waiting room. I waited. We all waited. A man from the life light team came to check on us and said he would go check on Jacob for me. He came back and said that his airway was closed so tightly that they couldn’t get the tiniest tube in and they had to call in the anesthesiologist in. Eventually, they were able to get him intubated. They would come and get me when he was stable.

We waited some more. I didn’t cry. I didn’t think. I called his father. No matter how much I hated him, I felt that he was still his father and he would want to know what was happening. He answered the phone and I told him where we were and why. I told him that they were trying to intubate him, he asked if it was serious. I was shocked at his question but didn’t care. I had notified him. He said to let him know what happened.

Finally they came for us. It had taken forty-five minutes to get him intubated, but he was finally breathing with the help of the machines. They put him in a induced sleep and placed a feeding tube. Finally, they let me back in to see my baby. My sweet little boy, so helpless and still. I started to cry, finally. They had saved him, for now he was okay. The doctor and nurses were amazing, each of them knowing exactly what they were doing and when. I still periodically send them pictures of him.

My dad went home in time to help my girls get up and to school.  My mom stayed the first day and then went home in the afternoon to arrange for my girls.  She came up every day to be with us.  I stayed by my son’s bedside and refused to move. He remained in critical condition, with a dedicated nurse at all times, and we waited.

AFTERMATH…

1128091435

Rebel & Baby J

It was the morning after we had gone to get our things when I woke up in the upstairs bedroom of my parent’s home and I realized that we were going to be okay. It was a huge relief. Somehow, no matter what happened to us, we would always have family and in the end there is always a way to work through everything. I had a lot of emotional issues to deal with. It was going to take some time for me to heal. My daughter had started wetting the bed again, which stopped within a week of when we moved home. I felt guilty, guilty for letting them be in that situation, for not seeing through his false front far enough to go beyond my own dreams of being a family. I knew it wasn’t healthy to beat myself up about it, but I also had to fight those feelings and thoughts somehow.

My Grandma had a stroke and had been placed in a nursing home recently. My mother and her six siblings offered my grandmother’s home to us as sanctuary until my own home would be vacated in the spring. I was thankful and blessed. I don’t know what they knew, what my mom knew. I just know that her home was out in the middle of nowhere, my son’s father had never been there and it was the perfect place to hide and heal. It was affordable, the only cost consisting of utilities. We moved in, and there we stayed from September to March, surviving another Minnesota winter.

My girls returned to their school, their friends. Madison’s old coach welcomed her back into his gym without question and she spent almost a year building herself back to her previous skill sets. She never once became angry with me or upset that she had lost that ground. She held no blame for my choices, which was good, because every time she would have a difficult day at practice I beat myself up mentally all on my own.

I started applying for jobs. We were going to be okay. We were safely hidden. We were close to family. Still, I started laying awake each night. I slept in a chair next to Jacob’s crib when I could actually sleep. I paced the house, when I had bad dreams I would wake and stand guard over my little ones. I watched over my son, my girls, I watched the driveway. I was anxious, I was scared of one day seeing a truck pull down that driveway no matter how safely we were hidden. Only family knew where I lived and they would never give him information about where we were.

My big German Shepherd waited on our front step, watchful, waiting. I knew he would protect us, if he could. I also knew that it would be easy for him to be shot as he stood guard over his family.  A million fears, a million thoughts kept spinning through my head. I was tired, emotionally, physically, mentally. I was not the confident woman that had made her way on her own when she had divorced her husband. I was a timid, mousy little replica of what I once was. Afraid, jumpy. apologetic. I  knew I had to find my way back to the woman I was in order for us to be okay. My children gave me hope, and strength.

ESCAPE…

Silly Girls and Baby J

Since that incident that had fueled my strength, the girls and I had moved downstairs completely. The only time we went upstairs was to clean, cook and take care of things around the house. My son’s father seemed to remain in a constant drunk haze and when he wasn’t being a jerk he was busy playing a game or sleeping off his latest drunk. I found that I was always pleasantly surprised when I came home if he was gone, and filled with dread and disgust when I came home to find him there. I held nothing in my heart for him anymore. He was, in my eyes, a disgusting bastard and I hoped that someday he got what he deserved.

A couple of weeks before I was ready to put my plan into action my parents invited us for a weekend at a different cabin. He was going to come with, I think more to make sure I kept my mouth shut more than anything else. I packed everything up, arranged for the dogs to be cared for and loaded the vehicle. He asked when the neighbor girl was going to come for the key and I told him that I wasn’t sure but I would go check. He flipped out, saying that I was so unorganized and that I couldn’t take care of anything and that the only reason he drank was because he couldn’t stand the thought of spending the rest of his life with me and my rotten children. He said he wasn’t going and took his daughter back into the house. I loaded my kids and left before he got the chance to change his mind and drove for the seven hours that it took me to get there without stopping. When I got there and my parents asked where he was I told them that he was a lousy jerk and a drunk and that I hated him. My dad was a little shocked. My mom was not. They asked what my intentions were. I told them that I intended to come home. They told me that they would help and would find help us place to live until my renters came to the end of their lease.

After that is was actually pretty easy. I went to a counselor before I left, to an appointment I had made prior to my decision. I had been concerned, because I had started to dislike his daughter. I felt guilty about it. She was and is a bright, sweet and beautiful little girl and I did love her. But I didn’t like the extra burden that was placed on me when she was there. I couldn’t scold her, I couldn’t correct her, he would shower her with gifts and hugs and kisses and not even waste a “hello” on the girls or I. I think he only held Jacob twice in the entire five months that he lived there before I ran with him. I was jealous that he had affection but none for us. I didn’t want him but I hated that he could show so much kindness and so much affection to her and reject all of us.

At any rate, I put my plan into action. I had befriended a neighbor and she was my eyes at home. I went to work. She called me when he left for an undetermined amount of time. Sometimes he was gone an hour, sometimes fifteen minutes, sometimes a couple of hours. It was the chance I had to take. I had put the cat in the carrier and had him in my van, knowing he wasn’t always home when I wanted him to be. I told my girls that I had to pick them up at noon and didn’t tell them why. I hugged my coworkers, bid them goodbye, picked up my son and hurried to the house. I whistled for my dog and he bounded to the van and jumped in. I had taken all that I needed and packed it in secret the night before to get us through a few days. I grabbed a house key off the shelf, something I was never allowed to have, and I left him a note. I was terrified. I was trying to hurry, I couldn’t breathe. I drove to the school, who had been informed of my plan. The principal was waiting with the girls by the door. They ran to the van, excited to be getting out early and I gave the principal a wave and we ran. I flew out of town as fast as I could, called my mom to tell her we were on our way. By now she knew that we were leaving in secret, so I was to keep in touch. I couldn’t breathe, I was shaking. I kept looking in the rearview mirror. Things were going too well.

My cellphone rang. It was him. I didn’t answer. I had left him a note. I had told him that we were leaving that we didn’t want to and couldn’t stay there anymore. I told him I was moving home because I didn’t want to be near him, and that my family was going to help me. My phone rang again, and again and again. I ignored him. The texts started coming. I still have them saved on my old phone, tucked away in a drawer, along with files of cruel emails, things that I may someday need when his son is a grown man and asks why I left his father. He deserves the truth, when he is old enough to understand.

I didn’t calm until I pulled into my parent’s driveway. The girls were thrilled to be leaving, happy I had brought our pets, but nervous because I was nervous. I showed up in the early evening and poured my little family through my dad and mom’s front door. My mom was there to listen when my son’s father called, screaming at me. I didn’t answer, I just hung up. I had informed him that my family and myself would be there to pick up my things the next day. I told him that it would be my father, my brother, my mom, a friend from my old job and one of their male friends. I called the police and told them what was happening. They said they couldn’t intervene where property was involved but would be on alert. I told him that it would be wise for him to be gone when we came. He was beyond angry. He was livid.

He was also the coward I thought he was because when we pulled into the drive the next day, having left the kids safely behind, he was not there. The squad car was parked just up the road as well, even though they had said they couldn’t intervene. I thanked my neighbor with a hug. We got what we could and left the rest with fate. He had told me I had to come alone. I had refused, and he didn’t come home while we were there. Later we made a second trip to get a few things from the garage and he wasn’t there then either. I rented a storage building and hid my things there, two blocks from his house until the following spring when I moved back into my own home.

My battle with him was far from over, but at least he could not touch me, could not do anything but try to harm me from afar. I still, to this day, watch over my shoulder. A lot has happened, a lot has changed. Jacob almost died when he was six months old, I had to file for assistance, which brought out his cruel nature once again and he actually tried to take Jacob away from me. But for that moment, I was safe. I could laugh again, breathe. I was safe, my kids were safe. Life was in limbo but it could start over again.

A home that is not our own…

In the UV bed

In the UV bed

We spent two days in the hospital. My mom came each day, of course. My boyfriend brought his daughter in, and she got to meet her little brother. She had a baby brother six months older than Jacob so she knew how to be gentle with babies and she got to hold him too. Once he was safely back in my arms she started jumping up and down on the furniture, jumping up on the counter top, jumping and pushing on my bed. I was still sore and I finally had to ask her to stop. Her father was angry that I would have the audacity to tell her to behave and left in anger. My mother rolled her eyes at his childish actions. She was torn. I could tell she wanted to come home with me for a few days but she knew that I didn’t think it was a good idea.

The day we brought him home from the hospital was not the happy occasion it should have been. My boyfriend showed up, brought the car seat in and I got the baby ready to go. My hands were shaking and I had a hard time dressing him. I had a difficult time getting him tucked safely in his seat and couldn’t get the straps adjusted. I grew frustrated and the damn tears started flowing again, making me shake harder. He pushed me aside and adjusted the seat with a disgusted grunt.  The nurse just stared at him. He picked up the car seat and with our son strapped safely in left the hospital, walking quickly. The nurse watched him, as he got further and further away from us and kept glancing at me. I stood up straight, ignored the screams from my incision and walked after him bravely. He had my son with him and he wasn’t getting too far away from me, even under the watchful eyes of the nurse. He paused at the door and sighed, as if I was the slowest and most dimwitted person he had ever met. The nurse escorted us to his truck. She helped strap Jacob into the back seat. His little girl jumped up into the front seat, accustomed to her spot when she was with us. The backseat was for me, and now Jacob. The nurse gave us an extremely long look and then stepped away.

I sat there, my hand on my son’s little chest as we drove home. He had stops to make so Jacob and I waited in the car. I sat there, trying to remain calm, but the tears came. They came hard. I didn’t want to go home with him. He got back in the truck and asked me what my problem was, why was I crying now? I told him that I was just tired and sore. He grunted, accepting my answer and drove us home to a place that I had never and could never call home. I set things up in the living room for Jacob and I. My mom had brought the girls back and they were perfect little angels, running to get me things, helping with their brother, keeping their step-sister entertained. They cooked meals and changed diapers and kept quiet.

Jacob started to cry. He cried some more. I tried to get him to eat. He became exhausted. He cried some more. I cried with him. I couldn’t keep him calm. I couldn’t quiet him. Something was wrong. On our third day home I told his father that Jacob was looking like he was developing jaundice and that I needed to take him to the hospital. Surprisingly enough he took us. My incision had ripped open part of the way, I am sure from trying to keep Jacob cared for and quiet. That, and I just have extra special good luck with things like that. The doctor was concerned when he checked Jacob over and he readmitted us to the hospital, Jacob for “failure to thrive” and myself for whatever it was that I needed to keep myself sewed shut.

Being at the hospital was a relief. I was scared, though. I was scared because Jacob had lost weight. What was I doing wrong? I knew how to take care of one little baby. Why wasn’t he gaining weight? I soon learned that my milk, although it had started to come in, hadn’t continued to do so. The entire time that I breastfed I never managed to get more than an ounce at a time. I was devastated. One of the most natural things in the world, the one thing that a woman can do and I did it wrong. My boyfriend was annoyed, again, I was worthless. I couldn’t even feed our son. I was consumed with guilt and a feeling of shame. He left us sitting in our hospital room. Jacob was nestled in under a little lamp gathering UV rays and I was sitting on the bed, unsure of what to do. My boyfriends words as he left the room to deal with the insurance company were, “don’t bother your mom with this.”

I bothered her. The minute he walked out I called her, sobbing. She talked to me, she talked to me some more and then she came. Each day she made the drive. We were in the hospital for three days. Jacob got better quickly. I started to heal up. They brought in a lactating specialist, my mom bought me a very expensive breast pump, no luck. We started him on formula, adding my breast milk whenever I could. The nurses called in a therapist. They were all in agreement that stress was my problem. They felt that perhaps my home situation wasn’t perfect, and that I was just too exhausted and stressed out to feed my own son. My girls had been taking care of the home front and I was thankful that my mom was there to check on them.

We went home again. I confided in the same nurse that had helped me before that I didn’t want to go home with my son’s father but denied abuse. I wanted to tell her, I just.. couldn’t. I couldn’t anger him with my little girls left at his home. I knew he wouldn’t dare, but it wasn’t worth even a chance. I had to think, I had to plan. I had to work this all out. When we went home this time we made our home in the master bedroom. The girls helped me. They went back to school. I stayed home, hidden away and waiting each day for them to come home from school.

He left us alone for the most part. We stayed out of his way. Things weren’t that bad.  I went about my business, the girls helping me with the house. I cooked meals, I cleaned the house, and I even mowed the lawn, as was my job, with a two-week old Jacob in the snuggli in front of me.   As long as things were dealt with, he left us alone.

I went back to work, my little one with me. He went to daycare at six weeks. I was only a block away and it worked well. I was thankful for the close proximity. I didn’t tell his father where the daycare was located and he didn’t ask. He didn’t care. He wouldn’t pay for it. He wouldn’t buy formula. He wouldn’t buy diapers. I got advances from work. I borrowed from my parents by way of the company credit card that they had left me for emergencies. They didn’t question me. When I did break down and ask him for money or help with daycare he would become angry. He belittled me, he told me that if my “so called job” couldn’t pay for both kids to be in daycare than there was no point in me going. Yet, when I had stayed home to watch his daughter it hadn’t made a difference then either. I never asked him for money again.

In July we were invited to my parents cabin. We all went. I was relieved to be with my family. They helped with Jacob. The girls got to play with their cousins. Things were okay. My boyfriend was nice to me in front of my family. They all noted his lack of interest in his son. The only time he picked him up in three days was when it was time to go and the car needed to be loaded. I, of course, took care of it.

Not too long after that when I was dropping the girls off with their father and picking his daughter up from her mother at a mutual meeting point, as I did every weekend, she commented that she was surprised that I had let him name my son Jacob. When I asked why she told me that it had the been the name that they had picked out when she was pregnant with their daughter. I don’t think she meant to be cruel but it was like another slap to the face. Of course, he had to attach something to my son that would link him to his ex. Why not? I blew it off to her face and then cried my way back to the house because of it. I don’t even know why I was crying, maybe it was that constant feeling of self-loathing.

There was a very specific time that I made the final decision to run. It is not something that I like to recall and is not something that I am ready to put into writing, even here. I still dream of it at times and wake up sweating and in tears. I am fighting this demon still, four years later. But I AM fighting it and I feel stronger all of the time.  I had gotten into a fight with my boyfriend, over something trivial, probably because he lit his cigarette next to the baby so that I would have to take him from the room, or maybe because the baby was crying and dinner was late or burnt because I couldn’t do both, or maybe it was because he yelled at my girls. Maybe it was because he had taken the cat litter from the cat box and dumped it into their dresser drawers because they forgot to change it when they went to their Dad’s one weekend, or maybe it was because one of them forgot their school books at the top of the stairs and he had kicked them down the stairs, spreading homework everywhere. For whatever reason, I had lost it. I became angry. Everything raged up in me and I challenged his authority. Whatever it was, and however it turned out, I made my choice.

However, I played that I had not. I called my lawyer. The same one that had helped me during my divorce. I asked him how I could go and protect my son from his father. I asked him how to prove that he was a drunk, what I needed to do or say. He told me. I made a calendar at work. I kept a log, each day, of how much he drank. I made notes as to what and how much and on what days  he did, or didn’t go to work. I noted his activities. I made my plans. At first I was going to find a place to live around there. I had a good job. I was looking for a way out, with a tiny bit of money. My friends at work were the ones that convinced me to go back home. They didn’t want to lose me there, but they knew where my support system was and they encouraged me to go home to my family. So, I prepared. I made excuses to go home for weekends. I packed tiny amounts of things and hid them when he was passed out. I didn’t tell my girls.