I wrote this letter at the beginning of this year, before I ever signed over my rights for Andrew and Nevaeh. This was originally written for a judge or maybe a lawyer to read. I feel like my case was treated poorly. I honestly believe if I wouldn’t of had 5-6 workers in 2 years ( that’s pretty much a new worker every 6 months ), I would of had my kids back home. But a new worker every few months meant no one really knew my case personally, just whatever was on paper. Didn’t know the history. So my case ended up getting no where. Obviously, a lot has happened between now and when I wrote this so keep it in mind it’s not exactly up to date on the situation.
♥ ♥ ♥ ♥ ♥
To Whomever it May Concern,
I am writing this letter because I feel like my family’s case has been handed poorly, jeopardizing any chance of my family being reunited.
During that past year, the hospital had called CPS multiple times but the state didn’t see any evidence of their complaints and dismissed all of them. That was up until the domestic assault. That was the tip of the iceberg, along with the domestic the allegations towards me was misusing my prescription medication, not providing proper living conditions, and neglect of Andrew’s medical needs. I couldn’t argue against the domestic or taking an extra pill than what was stated on the bottle that day. Both happened, but blown out of proportion. After the incident with Dwight, I went straight to WCA and got help, including a restraining order. As for the medication, I have no drug record or problem. I proved that with the random drug testing in the beginning of all this. Another complaint on the order was ‘not providing safe and stable housing”, the hospital kept saying we were ‘homeless’. Yet again, not true. No, we did not have a place in Omaha but we’re making attempts to relocate there. It wasn’t something necessary, more of a convenience. Omaha proved to be more difficult than originally thought. Practically impossible to get on housing assistance or any help. They’re horribly underfunded and I stayed home and took care of the kids.Leaving only Dwight working. But we were not homeless. We were attempting to relocate but always could go right back where we were living in before we ended up there in February 2015, We lived with family. Andrew and I had our own room, I preferred him sleeping in the same room due to his health issues. Which CPS was suppose to look at but never did.
As for unsafe, my kids were never in danger. Their dad and I had never been in a physical fight before. It happened just that once and even that once, my daughter wasn’t in the same room or near it. We would argue but not in front of Andrew. The arguments were getting more frequent and more intense. In my opinion the stress of our son being born with such serious health issues and being at Children’s Hospital simply took a toll on us. I knew what it was like being that kid who grew up listening to parents. I wasn’t going to put my kids through it and I didn’t want that for myself. By the time we ended up back there, in February 2015, we were no longer living together to begin with. Andrew and I moved out and was living with family since October 2014.
The last complaint was neglect towards Andrew’s condition and medical needs. The hospital stated I lacked the medical training, that his health issues were caused by neglect, and how much less I was physically at the hospital after having Nevaeh. Firstly, I had done all of his medical training, only thing we were currently working on was how to take care of a trach when at home. He had barely had it for two months by the time they got taken away. We weren’t allowed to participate in trach cares right away to begin with. It was too new and needing to heal up some. Once healthy enough, I would participate or at least attempt to.
The first time I’d see his nurse that day, I’d normally ask if there was anything new, how over night was, and try asking if i can help with “Trach Cares” ( cleaning and periodically changing the trach ). Usually I’d be told they already did it. When he first got it put in, I’d always watch the nurses. It helps me learn when I’m able to be involved or at least right there watching, Respiratory also came down and demonstrated it to me.I knew how to sterile suction out his trach properly as need. I was able to change it a couple times with a nurse. I remember it just being me and the nurse doing it my first time and the second time Dad was there but didn’t feel comfortable trying it yet, So, me and the nurse did it. I could explain to you exactly how and what to do, but it’d still make me nervous. The first time went fine. Just scary. The second time, Dad’s first time there and it went horrible. Right when the nurse and I were about to switch the trachs, Andrew started vomiting right in the middle of it. You are in control of if that person can breath or not threw a whole in their neck, add vomiting to it. It’s nerve wracking.
Andrew got his trach November 2015. Main problems were it was a two person job and it only gets changed at earliest, once a month.By mid December 2015, Dad was in jail for the domestic assault, so I no longer had a second person. I participated in as much as I could but no matter what, it was required to have two individuals trained to be able to go home. I was running out of options.
Before Nevaeh was born, I was at that hospital 90% of the time. I’d sleep at his bedside almost every night. Normally the only time I’d sleep at the Rainbow House was on the weekends, Dad’s days off Only other times I’d leave would be to go get food, go outside for a few minutes, when he needed to sleep, or was told to. He’d like to fight his sleep if I was in the room, so I’d leave for he’d finally doze off or if he was having a “bad day” be told he needs to relax and rest and asked to leave. Once Nevaeh was born, it was much more complicated. I couldn’t always be there like before. I’d have nurses and doctors complaining and telling me that she shouldn’t be there and that i was crazy for risking her getting sick. Yet, if she wasn’t feeling good or I wasn’t feeling good and decided to stay away, they’re complaining about that. I couldn’t sleep in Andrew’s room anymore because kids can’t stay the night. Nevaeh wasn’t a fussy baby other than when it was time to eat but even that, would cause us to be asked to leave. I was told many times to leave. How was I suppose to be there and keep doing the trach cares if being told to leave all the time on top of taking care of my newborn? It was just me and they were making it impossible.
Lastly, his medical issues weren’t caused by me. He had his condition before I ever knew I was even pregnant. I was told there was nothing I could of done to cause or prevent it. I did everything I was instructed to do with Andrew and his needs. I have witnesses who can verify his care when at home.
With all that being explanned and history told, I can get to the point. As much as I know my kids are safe and taken care of, seems as though making that responsible choice as a good parent has also hurt my chances at beating this case and getting my babies back home. It’s been unfair and completely bias since the very start. I have the largest children’s hospital working against me due to a handful of staff that work there that judged me and my parenting. Instead of coming to ask questions, they’d just jump to conclusions. It also didn’t help that I have no problem speaking up and voicing my concerns or opinions, even if it goes against theirs. It’s mostly doctors and one social worker who had problems with Dwight and I. People who were around us a lot while we were there. One of day, one of the head nurses come into our son’s room and have the nerve to try discussing the relationship between Dad and I. My son’s head registered nurse had the audacity to come and pretty much try counselling us one morning. Andrew and Dad were napping and I was watching tv. He came in and sat by us, I woke Dad up Expecting some medical news about my son, I had to listen to him tell me how we should really work out whatever our issues were and stay a family. That it’d be in Andrew’s best interest. After about twenty minutes, I couldn’t sit there and listen anymore. I was irate. This man knows nothing about our relationship and is giving us advice? I told him he’s not our therapist, he’s our son’s doctor and to stick with his job. And left the room. I felt he completely crossed the line. I had never had a conversation with him before, he didn’t know me or my family..
They only got to see what us living in the hospital was like. Not at home. Not the weekly nurse who came to the house to check his weight and vitals, not AEA in my house and Ablekids appointments every week. Of course the doctors and state are going to back up the foster parents’ when the husband is a nurse at that very hospital. It’s one of their own, pretty much a family. It’s my word against a bunch of doctors and people with degrees. A hospital I had been having issues with since about October of 2014. How is anyone have a chance at beating a case like this?
Most recently, I’ve had NFC change my worker yet again. I believe this is the forth or fifth one. This case has been going on too long already and now to throw in a completely new worker who knows nothing about my family other than whatever Haley Johnson-Wright and previous workers decided to write in her reports. Which by what I observed from our short Family Meeting, Haley left a disorganized mess. My first meeting with Kayla was on November 30th, 2017.
Right from the beginning of the meeting, it was a mess. Firstly, Kayla was under the impression that I had not completed my domestic violence classes. She couldn’t find my certificate of completion. This wasn’t true. I have not only finished one class, but also an extra one at WCA. The other one was completed at the Phoenix House. I personally gave Haley my certificate with my attorney present months ago and it was submitted as evidence at the last court date. My attorney was able to locate it and send it to her.
Kayla also stated that supposedly the foster parents were having issues with me accurately giving Andrew the correct dosage for his feedings and medications. The only time me and the foster parents, Christian and Anita Anderson, have had any ‘issues’ regarding the feeds were simply about my way of setting the feeding pump versus the way they do it. Same result, different technique. The foster parents would measure how much formula to place in his bag using a measuring cup to ensure he gets the right amount. The way I did it was simple- I’d empty the bottle of formula into his bag and set the feeding pump to only give him a certain dosage. Once you set that amount, the pump with continue to run until it reached that amount.
As for the medications, it’s always be 1.2 mL at 2:00 PM. I contacted Christian immediately after the Family meeting. In my text message I simple wrote ‘So Kayla said something about his meds n feeds not ‘always being right.’ After about 10 minutes or so i got a reply from his stating “Regarding Kayla. We have only had a brief telephone conversation with her. You have been doing fine with his Med and feeds. Anything not right now for you is in the past. I think we’re working on talking about stuff so there are no errors and that’s great. I just don’t want another “case worker” to pin us against each other. Andrew’s favorite chicken are chicken fries from BK lol but he like nuggets too, and you know ketchup! Nevaeh has eaten hamburgers before and likes them pretty well.” The foster parents and I communicate twice a week, sometimes more. If there were any questions or concerns that they may of had, they would call or text me immediately.
Visits seemed to be another concern. She felt that since I’ve relocated that I haven’t been consistent on attending my visits and that its a growing concern of hers. I moved after very careful thought and planning went into it. I knew very well what I’d be getting myself into if I moved back up to Sioux City. One part of it is the traveling. Which I’ve had zero issues with. The only time I did miss a few visits were on October 23, we just got switched to semi unsupervised. They wouldn’t let me have the visits at my house anymore which caused an issue because I was always cooking their meals. I didn’t have any food that we could pack up and take to go. Second date was on November 2nd, had a job interview to go to. Didn’t just cancel it. Hailey and I both tried to get a hold of Haley to reschedule but she wouldn’t respond to me or Hailey. November 9th I drove all way down to Omaha for a meeting with Haley and my attorney, but had a fever the whole time. They both were there to witness it and felt how hot I was to begin with. So had to cancel those visits. Last day I missed was simple Thanksgiving. So out of about twenty or so visits, I missed four. And not completely by choice. I tried communicating and rescheduling visits but Hailey wasn’t responding to me or Haley.
Originally, my visits were Tuesdays and Thursdays, but I was able to get them changed to Thursdays and Saturdays just to make sure I wouldn’t be put in a situation that’d make me miss a visit. I get paid on Thursdays so there’s no risk of me not having the money to get to them. Saturdays were suppose to be Dwight’s days because of his work schedule. But we talked about sharing Saturdays. It’d help us both out and i think the kids would be so happy to see Mommy and Daddy together, even if we’re not a couple. We are still close and still talk just about every day. We’re still a family. I brought it up to Haley J. who told me it is a ‘thoughtful idea’, but as of right now are visits are seperate. But possibly something to discuss at a ‘later date.’ Well, a few days later I received a message from my attorney stating Haley is no longer with NFC and scheduled a time to catch up on the case before meeting the new worker. Part of that phone meeting was about Dwight and I sharing Saturdays. She wanted to know how I felt about it. I explained to her that I was the one who brought it up, it was my idea. I’m completely comfortable with it, completely comfortable with Dwight. He’s been my best friend for almost 10 years. I’m closer to him than any of my blood family. I know the domestic assault doesn’t look good and sounds horrible. It was horrible, I’m not going to lie. But it also happened once in seven years. He has never laid his hands on me other than that one time. I didn’t get beat up for years. Was a one time incident that happened two years ago. We have two amazing kids that we love to death. Just because we didn’t work out as a couple, doesn’t mean we can’t work as parents.
My attorney stated that as long as I’m comfortable with it, she’ll back me up on it. The only issue she has with it is that he hasn’t completed his domestic class. But that’s where she left it at, she will support me with my decision.
The first phone call I had with Kayla, our new worker, I asked her about Saturdays and if Dwight is able to join me. She stated that she’s waiting to hear all legal parties opinions and told me that with the domestic violence on record, it’s a concern. Once again I explained it wasn’t a situation where there was years of abuse or anything. It happened once in seven years. She took note of that and waited to hear from all sides. I met her for the first time on November 30th. We had a family meeting with her, my attorney, the kids attorney, and myself. It was incredibly frustrating and couldn’t completely bite my tongue the whole time. Kayla informed me that they decided against Dwight and I sharing Saturdays. As the kids’ attorney put it ‘they don’t feel comfortable with us being in the same room with a history of domestic.’ Yet again I corrected that statement. There is not a history of domestic violence. There is a one time incident on record. Huge difference. 1 bad day out of 2,555 days. It happened over two years ago now, and isn’t going to happen again. We’re not together. Both have happily moved on. We’re mature enough to still be friends and be able to co-parent. That is the whole goal of this court, correct? To help children have a safe and healthy place to call home, ideally back with the parents. So, if that’s the ideal scenario, how can the parents get told they aren’t allowed to coparent? We’re at the end of this case, and the state of Nebraska is going to tell us that we can’t co-parent. We love our kids, this is what mature adults do. Say the judge were to place the kids back with us within 30 days, what are we suppose to do? Ignore each other? Keep the kids from the other parent? That’s not a healthy environment. I refuse to take ‘No’ as an answer.
Towards end of her time on this case, seemed like Haley Johnson-Wright wasn’t doing half of her responsibilities as our worker. Seemed like she was working against Dad and I rather than helping to put the family back together. Come to find out no one’s backgrounds were actually completed. My family and I are from Iowa and require a Nebraska and Iowa background check to be completed. Even people who have already attended visits, for example my mother, could no longer join due to the worker mistakes, not mine. When it came to Dwight’s request forms for getting his visits going again with a new company, Kayla found it the day the request form expired and uncompleted.
We had court on September 27th, 2017 and I don’t think anyone thought it was going to go the way it did. I didn’t expect it to go badly, but didn’t expect it to go well nor in our favor. I had all my court orders completed. IDI done, domestic class done, had proper housing, and a job. But I knew moving from Plattsmouth to Council Bluffs and the time it took to find a new job hurt me. Time isn’t in our favor. Of course the state requested Judge Thomas to begin with proceeding the adoption process, luckily that didn’t happen. After reviewing all the information provided to him, Judge Thomas recognized that I had completed everything I was told I had to do and that Dwight only had his domestic classes to finish up. Instead of starting the adoption process, Judge Thomas ordered us to begin semi-unsupervised visits. Everyone was shocked. The state wasn’t happy at all.
Seems like ever since then Hailey J. was working against us more than ever and rather difficult to make any new progress. The very same day both Dwight and I were told we weren’t starting the semi-unsupervised visits quite yet and that once we do, we couldn’t hold them at our homes. I had been having my visits at my house already while supervised. Whether unsupervised or not, Hailey had to do a walk through and approve it before the children could ever be there. Only things she ever commented about was getting a gate in the hallway by the stairs even though both kids never went by there and the fact that my dad lived in one of the other apartments. My father is on the sex offender list, but did not have access to my home. We both had locks on our doors, I even got another one just to please Haley, I was the only person with the key to my door. My father is getting old and I lived up four flights of stairs. He would never come up there. I’d always have to come down to his house. I tried multiple times to get Haley to come look at my house to approve it a second time, but something always came up. She’d cancel on me.
Haley then informed me she was needing to come to my house to do the walk through because according to her my visitation lady, Hailey Tarpinian had informed her that I had mice and bugs. I was the one who told Hailey T. that I had seen a mouse only twice when it started getting cold outside. There was no food or trash out for them to eat or attract them. They were just finding some place warm to go. Even though I only saw one a couple times, I set out traps to be safe. I never did catch any and didn’t see any more. As for bugs, my house didn’t have bugs. No ants, no cockroaches, no flies, no bed bugs. Nothing of the sort. Only bugs that found a way inside once it got cooler outside was ladybugs. Annoying, yes, but nothing to cause concern. I did confront Hailey T. myself and asked her about it. She informed me that in her notes she stated that I told her about the mice, but that she personally never saw or heard any herself and that she only saw ladybugs in the house. Haley Johnson informed me that I could no longer hold my visits at my house anymore until she investigated it for herself and got the walk through done. I had tried scheduling a time for her to come the very next morning because my kids were suppose to come that day. She ended up cancelling on me shortly before she was suppose to be there. Tried rescheduling again, but same out come. My children loved coming over to my house and normally would rather be there than go out. If I take them to DoSpace, the mall, a park, or most other places, within the first half of the visit they would tell me that they want to go to Momma Ashley’s house.
On top of that, I always cooked them meals, not go get them fast food. That became an issue when I was told i could no longer have visits at home because I didn’t have anything I could simply pack up and bring with me. Also didn’t have the money for fast food. I ended up not being about to see them on October 26th for that reason. I tried having the just the beginning of the visit at my house for they could eat first but Haley J. wouldn’t allow it. Told Haley T. no.She was getting increasingly more difficult to contact and work with. Eventually, I just decided to move and get rid of the problems altogether.
After long and careful consideration, I made the decision to move back to Sioux City and officially moved around September 25, 2017. There are many reasons I feel like that was the best option for me and my family. For starters, it’s where we’re from. We have family here. Dwight was born and raised here and has all his family up here as well. Hailey J. kept wanting me to figure out a support system, here it is. Andrew was born in Sioux City. Only reason we had been in Omaha, was for Children’s Hospital. Children’s has played a huge part in Andrew’s life, that’s where he has all his surgeries and more intensive care. But he has had a pediatric cardiologist that’s seen him since he was first able to come home at about 2 months old. His name is Dr. Najadowi, he works at a local office, but is employed by Children’s. He also use to see a therapist from AEA that came directly to our house for appointments and went to AbleKids for OT, PT, and Speech. All of these doctors know and are familiar with Andrew and I’d be able to go to all his appointments. Other reasons that factored into the decision to move was it’s easier to get a job and cheaper to live. I had been back for less than a couple weeks I had a handful of interviews. Within a month I got two jobs. Plan on being able to get a house by the end of December/January.
As for the children’s medical needs, about October 20th, 2017 I was told by Haley J. that I would now be responsible for their appointments. I was originally told that I could have someone I trust go to Andrew’s appointments and INR level checks at Children’s Hospital for me since I can’t go due to the ban or to find them new doctors. There is just a few issues with that, Andrew will always need Children’s Hospital. Not necessarily all the time, but every few months more than likely and for any surgeries. He’s already had eight heart surgeries there. I refuse to let any other surgeon other than Dr. Hammel work on him. Andrew is a special kid. He isn’t like any other child, even ones with the same heart disease. Therefore there are no previous cases to go look back on for help or guidance. Dr. Hammel is the only one who knows Andrew from the inside out and I do not trust or feel comfortable with anyone else working on him. As for a pediatrician and therapist for the kids, I have no issue switching them. The only issue I have is, I’m not going to find them new doctors down in the Omaha area just to have to switch them yet again to someone else up in Sioux City. That’d be ridiculous and also stressful on my kids. My plan was to have them continue seeing their current doctors and have my mother go to the ones I can’t. She’s been around since day one for my kids. She was there for the hospital stays and Andrew’s surgeries. She’s watched the pain and struggle my family endured. She’s also seen the miracles. She’s been around the ‘hospital life’ and ‘heart warrior’ lifestyle. So she knows what to expect and has experience with it. She also had passed the background check and been on many visits with both Dwight and I. I informed Haley, my lawyer, and foster parents that I planned on her joining my visits on Thursdays so that we could take Andrew to go get his INR checked starting October 26th, 2017.
To check his INR, they have To draw his blood weekly and check his levels which help give us an idea of how his heart is functioning. It can be a scary and painful experience for a kid. Can be very stressful for him which is another reason why he needs someone he knows and is comfortable. Once we all got to Children’s Hospital, Andrew and my mom went in while Nevaeh and I waited out in the car. After a short while, they were back at the car. Andrew was just as happy as he was before going in, it didn’t phase him one bit. Didn’t even cry when they took his blood. He handled it very well. I felt like we made a great accomplishment. Afterwards we all went back to the mall and played.
On October 30th, I received a text from Haley J. stating that she spoke to her supervisor and that they agreed that I needed to find a different doctors office to take Andrew to so I could take him myself. My mother couldn’t take him to Children’s for me. Those weren’t the options I had been told repeatedly for months. I was told to find someone to accompany him to his appointments at Children’s since I’m not allowed on Children’s property. Yet the moment I do, they want to change the rules. Of course the ideal situation would be me, his mother being to be there for him for his appointments. I have always been the one taking him to all of his appointments. I like knowing exactly what is going on, the facts and information straight forward from the direct person. Not a middle person. But unfortunately that isn’t an option at this time. Haley was supposedly working with Children’s to get the ban lifted. Until then I plan on having someone Andrew is comfortable and close to take him to any appointments that are at Children’s Hospital. As for all their other appointments with pediatricians or therapists, I have the doctors planned out. Just waiting on when they can actually be up here or someone help with transportation up here to the appointments. At my last meeting with Haley and my lawyer on November 7th , Haley made it clear that the kids won’t be transported up here for any visits or appointments. Which I don’t understand how that’s far. Haley had a company that would bring the kids up to Sioux City for Dwight’s visits. He ended up messing it up because of his inconsistency, but that’s a bridge he burned. Not me. I wasn’t given the same option or treatment that he was offered. So, at this moment I haven’t tried moving forward with any medical appointments because I’m confused on what my options are.
Haley was communicating with Children’s Hospital and working on getting the ban lifted, at least that’s what she said. From what I was told, she has a couple doctors that were willing to fight to get it lifted. It’s not even about me. It’s about my son and jeopardizing his health, possibly even his life. Children’s has been taking care of him since he was barely a day old. He had his first open heart surgery there when he was only 8 days old. His life has been in the hands of the best pediatric cardiac surgeon anyone could pray for, Dr. James Hammel. I absolutely refuse to jeopardize and risk my son’s life by listening whenever someone tries telling me that I ‘might have to just take him to a different hospital’. Never going to happen. Not even an option.
Andrew isn’t your typical heart kid. He was born with a congenital heart disease called hypoplastic left heart syndrome, in other words his left ventricle didn’t develop and nonfunctioning. But, even compared to others with the same condition, there isn’t a case like him. The shortest version of the past 4 1/2 years is this – his surgeon came up with a fairly new, alternative option for babies who’s left ventricle was slightly larger than your typical HLHS baby.
The traditional route is they have 3 major heart surgeries to help the blood circulate as well as possible, but at some point in their life, they’ll need a heart transplant. Never know when. Maybe 7 months old, maybe 7 years old, maybe 70 years old. Simply depends on the person. Dr. Hammel’s alternative option was if the LV is bigger than most HLHS patience and was confident about it, he’d try getting the LV to grow. Usually takes 4-6 surgeries which they go in that LV and carve out the dead scar tissue and put a stint in to allow blood to flow into it. Slowly it’ll start to grow and pump. The goal is for that ventricle to grow and strengthen until you end up with a full functioning heart before ever turning 10 years old. If all goes well no need for a transplant.
After a long talk with doctors and lots of deliberating, we decided to try this new procedure. Hammel seemed pretty confident with Andrew. I believe he was only the 7th or 8th baby at that moment to do it. The children before him had all had great results, but also the oldest one was only around five years old or so. Very new procedure, but sounded like the smart choice. Of course, it didn’t go as smoothly as that.. Andrew had his first open heart surgery August 20th, 2013 at 8 days old and his most recent surgery October 22, 2015 at 2 1/2 years old. He’s now four and to sum up the past four years= he’s had 7 heart surgeries, surgery to place a G Tube, a pacemaker put in, ended up with a trach for a few months, has an artificial pulmonary artery, and a mechanical valve. His LV did grow and start to pump, but his RV ended up getting damaged by a virus he caught. He is always in heart failure, just a matter of if it’s stable or not. Have tried getting on a transplant list but get told one minute he’s too healthy and the next too sick. As of today he has been out of the hospital and stable for almost a whole year! Which is absolutely amazing after living there for a year straight. He acts just like any other four year old boy and always has a smile on his face even after everything he’s gone through.
Andrew’s health is now stable, but when it does go bad, the doctors don’t have similar cases to go back and compare to. He’s had so much already worked on that he’s in his own calgary. That’s why he can’t go to a different hospital and have a new surgeon work on him. They don’t know him or his heart. For example where his sensitive spot is while doing surgery on his heart that’ll cause him to go into complete heart block or mess up his rhythm. His surgeons have been with him since he was a newborn and know him inside and out. That’s why I absolutely refuse to let anyone else work on him. I won’t put his life in danger like that. I will not listen to anyone who tells me I should try looking for a new hospital. That’d be completely irresponsible for me to do as his mother. It’s my job to keep him safe and in good hands. No matter how big the battle. I may not see eye to eye with some of the people there, but it’s bigger than me and them. No matter what, I know when it all comes down to it, the doctors and nurses have my son’s best wishes at heart.
We lived in that hospital for two years on and off. That was our second home. That’s why I was shocked when I got told I was banned from there. I was shocked because I was there more than I was at home for almost 3 years. I saw those people more than my own family. They knew me. They knew what I was going through. Other than just the fact of living there for almost a whole year straight, the last four months I was there was the hardest time of my life.
We were in the process of getting a new place to live, but I started having contractions September 1st, 2015. Six weeks before Nevaeh was due. They hospitalized me and finally got them under control. They sent me home on the 3rd with medication to keep the contractions stopped. Andrew had a therapy appointment scheduled for an hour after I was released. Within that hour, we were now rushing him into the ER. He was unresponsive. For the second time in two weeks, his blood sugar had dropped.
After speaking to Children’s Hospital, they agreed that since it was the second time, that they wanted to get him down to their hospital to see him. Thank the lord they did. By the next day, they still couldn’t get his sugars up and he had to be sedated and put on a breathing tube. He started showing signs of getting better, good enough that we could move from the PICU up to the 5th floor. Seemed like the moment we moved up, he started getting worse. Within five days he went from being good enough to move upstairs to his heart starting to fail. The doctors had planned on doing a heart cath on September 28th, but by that time he was too fragile. It would of been too risky so they decided he was going to need another surgery at that point.
On the 30th he had surgery to replace the Aortic valve with a mechanical valve since all the past attempts getting the leakage under control failed. There’s pros and cons of having a mechanical valve. Pro- you know it’ll work properly. Con- very high risk of blood clots and have to take blood thinners to try minimizing the risk. Surgery went better than expected but once again, that rapidly changed.
Dwight had to be at work by 6:00 AM the following day, October 1st. I hadn’t really slept well for days and wanted coffee to keep me going and McDonalds was only a block away. I had him take me real quick before he had to work. He then dropped me back off and headed to work. Right as I got to Andrew’s door the alarms started going off. His blood pressure had gotten so low that he was in cardiac arrest and not breathing. They wouldn’t let me in the room with my baby boy. I stood outside the doors in complete shock. Dwight just left for work. I was frantic and telling them i needed to call Dad. A nurse handed me a phone. I was trying my very hardest to be calm so that he could understand me. I told him he needed to turn around right now and get to the hospital. Andrew was coding. They were applying CPR to keep his heart going.
By the time Dwight got back the doctors were reopening his chest right there in front of us. They had to put him on ECMO (life support), a machine that does the work for your heart and lungs when they’re not. Nurses kept trying to get me to sit down, I was 8 months pregnant with Nevaeh. They were worried they were not only working to keep my son alive, but also end up delivering a baby at the same time. But I couldn’t sit down. My baby boy was laying there lifeless.
After they got him on the ECMO and had him stabilized they finally let us in to be with our baby boy. The image of him lying on the bed, chest open, and connected to the machine still haunts me today. No one should ever have to see or experience their child in that condition. But he was still with us and that’s all we cared about.They kept him on ECMO the rest of the day. By the following morning they decided he was doing well enough to take him off. He proved that he was stable enough to be able to stitch his chest back up on October 3rd. He was improving but the stress was taking its toll on me.
I started spotting by that night and decided to go get checked out at UNMC. While there and being monitored, I began having contractions for the second time now. Since I was now 36 weeks, they weren’t going to try stopping it this time. Nevaeh had made up her mind that she was ready to get out of there. Nevaeh was born at 2:04 AM on October 4th.
Within a month I went from being happily at home, almost having my daughter two months early, to almost losing my son and him being on life support and having my precious baby girl the next day. She was month early, but perfectly healthy and my son is in the hospital heavily sedated because his heart isn’t strong enough to support him. I didn’t know what to do. Here I am holding my beautiful little girl and suppose to be enjoying my newborn when I have my baby boy fighting for his life.
Luckily Andrew remained stable and sedated while I was stuck in a hospital and couldn’t leave yet. We were finally able to be release on the 7th. I was so happy, it was killing me being away from Andrew. The nurses and doctors kept telling me I was crazy to have my newborn with me at the hospital, but what other choice did I truly have? I have one baby barely holding on to his life and a newborn who needs to eat every two hours.
Thankfully, chose not to listen, he wasn’t getting any better. By the 10th, Dwight and I were told we need to be prepared for the worse. Andrew wasn’t doing good at all. He had remained in a medically induced coma since the end of September and now believed his LV was slowly dying. Within five days we were back to him in surgery and fighting for life yet again.
This time he ended up with a blood clot that was stopping his valve from being able to open. After dealing with that, they replaced the pulmonary artery before it turned into a bigger problem than it was, and also had to fix a tear from them having to do CPR. Things were quiet for a couple days. They then noticed his pulmonary artery ended up leaking more just like they tried preventing. They had to go back in and repair it. My boy just spent close to two months fighting for his life and three open heart surgeries. Still, his heart couldn’t handle him being awake, Haven’t been able to hold or hear my baby’s voice in two months. All while I was suppose to be enjoying my 20 day old daughter. I couldn’t help but feel confused and guilty. Nevaeh was a good girl, normally would only cry when it was time for food. But even just that would get Andrew irritated and going. He’d start stirring or blood pressure would go up. Eventually we’d be told to leave.
A consequence of being in a coma for so long, is not moving. Andrew’s left lung had now collapsed. After trying weeks of respiratory therapy, massages, and laying on his stomach instead of his back, Dr. Spicer sat us down for a talk.
Ironically, it was also the day that Nevaeh was suppose to be due, October 27th. I’ll never forget sitting there, not wanting to believe all this was truly happening. Dr. Spicer sat with us and had the conversation, every parent dreads hearing .We had two options. That’s it. That’s where we’re were at now. Option One- have another surgery to put a trach in and hope that’d help his heart support him so that he could finally wake up. Moving around would help get that lung to open back up and he’d be able to actually breath. Option Two- not get the trach and pray for the best. He probably wouldn’t get any better. More than likely just keep slowly deteriorating in front of our eyes. He’d already been this way for going on 3 months now. No Momma. No Daddy. I really hated the idea of him having a trach and was scared to death. A friends’ daughter had one and ended poorly not that long before this at that hospital. I was terrified by the thought.
Deep down, I knew that was our only choice. I looked at my little boy laying on that bed and for the first time asked myself ‘is this what he wants?’ Would he be happy living what ever life he had in store for him? Last thing I want to watch is my son suffer all his life. We truly had no idea what kind of state he’d be in. He could have brain damage from lack of oxygen and could of suffered from undetected strokes and/or seizures. He may have lost everything he’s learned. Motor skills. Speech. Anything was possible and we had no idea. He might not even be the same boy we knew anymore. His personality could of changed.
I knew it wasn’t quitting time yet. We had to try the trach. I couldn’t give up on my baby boy. If I’m not in his corner being his cheerleader, who’s going to be? That’s my baby and I gotta do everything I can do. So, we decided to do it. On November 3rd, Andrew officially was a trach baby and was handling it well. His stats were improving and they were able to start weaning him slowly off all sedation. He was able to open his eyes for the first time in months. At 1 ½ months old, Andrew finally met his baby sister for the very first time. He absolutely loved his sissy.
Being in the coma and laying in a bed for so long caused him to lose most of his muscle strength. He was too weak to crawl or even sit on his own. Nothing some physical therapy couldn’t fix. Other than that though, he was the same little boy. No damage done. He slowly worked on regaining his strength and getting to the point of not relying on the ventilator. Finally, process was being made.
I couldn’t of been any happier. I have my beautiful daughter and now my little man back. Everything was going in the right direction. Until the night of December 19th, that night changed everything. Dwight and I were over at a friends house that night with Nevaeh, simply enjoying being away from the hospital for a little bit. Nevaeh was asleep in the living room, not too far from the front door. Dwight and I stepped outside to have a cigarette while we had a chance. We ended up in an argument which escalated into a physical fight. Never did I think we’d be in that situation. But it happened. It ended up with a couple of the neighbors witnessing everything since we were outside and them calling the police. Dwight went to jail that night. I went and got my injuries checked out at the nearest hospital.
My life and family just fell apart in a matter of minutes. I was in shock and pain. And embarrassed. Not going to lie I stayed out of sight for a while. I didn’t want to be around people with bruises, goose eggs beside each eye, and a messed up face. On top of that I had a bruised rib or two and could barely carry my daughter in her car seat. I just about lost my son more times than I was willing to admit, sat next to his bed for months while he’s in a coma, had my daughter a month early, told without a trach my son pretty much wouldn’t get any better, got one, and now their dad, the man I been with since I was 19 just beat the crap out of me and strangled me.
Any normal person would probably have a psychotic break. Unfortunately, I didn’t have that option. Instead I hid at the Rainbow House for a little while, trying to process life. Plus on top of that seemed like any time I did try going up to the hospital a doctor or Andrew’s nurse would ask us to leave because he was ‘irritable’. I ended up asking my mother to come down and stay with me at the hospital to give me a hand since it seemed like the hospital was making it impossible to do my job as a parent and Andrew was starting to get sick. I was already beyond stressed and anxiety was through the roof. Him getting sick was scaring me. After everything he just went threw those last few months, I couldn’t help being scared to death.
I stayed the night up there with him and didn’t get any sleep naturally. By the next day, I knew I needed to at least be able to get a nap in. So, my mom brought me my medicine and I layed down in one of the ‘napping rooms’. After over 24 hours without being able to sleep because of my anxiety, I finally took a nap. I woke up four hours later and was walking out of the room right as his nurse was coming to talk to me. I went back to his room. Slept a whopping four hours in over 24 hours and they still had something to say/complain about. i was irritated and angry. Next thing I know, here comes one of the social workers whom I’m familiar with but never gotten along with very well.
She accuse me of being quote “xanaxed out” because I took three so that I could actually sleep. I took 1-2 just to get my anxiety down, of course I’d need another to help me sleep. I was past angry that she’d even say something like that. I don’t remember exact words but I do remember saying if I were “xanned” out I wouldn’t of woke up on my own in four hours. If I were all messed up off of them I would of slept way longer unless someone woke me up.
After that I stormed out of the hospital. I didn’t want to be there and around them anymore. It seemed like we were in a constant battle the last couple months. I went back to the Rainbow House with my daughter still heated. I went in the kitchen to eat. I was talking to myself, just venting. Letting off some esteem. Well that ended up biting me in butt. I was just running my mouth to myself and said something on the lines of ‘i wish i could just shoot them’. I don’t remember exactly what I said, I was just letting off steam. People say things like that all the time when they’re anger. Like ‘I wish I could just hit so and so’ or ‘i just wish they were dead’ or just something dumb like that. There’s no true intent behind it. Simply venting to myself, except someone overheard me and reported it. The hospital took it as a ‘serious threat’ and banned me.
CPS took my kids and Children’s banned me from the property all in the same day, January 20th, 2016. I was actually shocked and little hurt. I felt like the people working at Children’s knew me way better than to actually take it seriously or actually feel threatened. I’ve lived there for two years. I’m around these people more than I’m around my family or friends. On top of that, I have no criminal record whatsoever. No history of violence. Have never been aggressive to these people. Never given them a reason to even consider taking that seriously.
I had just been threw just about anything and everything you could throw at a person all in a matter of a few months. Yeah, I may of been an emotional mess, but I had earned every right to be. That hospital wanted Dwight and I out of there so bad that instead of being understanding my situation and how my life had completely changed. They have no idea what it’s like to be a parent and live there veruses to work there. I had lived there for most of the past 2 1/2 years. My son was more use to a hospital room than our own home. We became the family that had been there the longest and everyone felt sorry for. On top of that, all the extra stuff that happened in the past four months.
My personal health has been affected by the amount of high stress and anxiety for such a long continuous time. Not just mentally but also physically. I now have high blood pressure and elevated heart rate simply from my anxiety. Not to mention traumatized from not only what we been through at the hospital but the man I was with for seven years just beat the crap out of me. i just had a baby. Hormones alone are good enough reason to be depressed and overwhelmed. Banning me was a complete over reaction on their part. I am not sorry for non-violently letting out my anger and frustrations to myself, or was suppose to be just to myself.
Yet again, those people knew me personally and know I have never put them in a situation that they felt threatened or in danger. I have no history of violence. It was just a low blow move to get me out of there. Only thing I’m sorry for is not being able to do what I had been doing for the past two years, being there for my son.
That right there I see as a good enough argument against the ban and getting it lifted. I didn’t actually mean it or intend on doing anything, I’ve never put the staff in an situation they felt threatened, and I have no history of it to begin with. I was venting to myself. I had been through more in those couple years than any typical person has to their whole life. Then almost had a baby two months early, son having multiple heart surgeries, having my daughter a month early, son in a coma, being told my son may not make it, and then being beat by their father all within 3 months. Of course I was angry and depressed. Any normal person would be and should be.
As unprofessional as my coping skills may have been, I feel I handled the situation well. I have no problem admitting it was a struggle to wake up in the morning, get out of bed, and not give up. It wasn’t an option though. No matter now depressed and a mess I was, my babies were taken care of. Even in the first couple visits from CPS they could see the bond and relationship me and my children had. I have depression and anxiety issues to begin with, more so anxiety. Which is a side effect of living ‘the hospital life’. I have seen not only my physician, but also a couple therapists, they all say the same thing to me. They feel bad for my family and don’t blame me for having my issues. They all agree that I have high anxiety, which is normally the cause of my depression, but I’m also a strong and intelligent woman. I’m more mature than most people older than me, let alone my age.
The lady that taught my domestic violence course from the Phoenix House was a licensed therapist and we did talk quite a bit. She’d repeatedly complimented on how mature I was, that she didn’t feel I needed that class to teach me anything I didn’t already know and understand. She always brought up that I should consider being a therapist one day.
Her and all the other doctors would say the same thing, that I don’t need therapy, but having someone I could freely talk to wouldn’t hurt with the lack of a support system, I didn’t need mental help. No matter the hell I’m personally going through, my children come first. No matter how badly I wanted to wither away in bed, I had two children that needed me. I could never show them how badly I was hurting, I have to be strong for them..They give me my strength and hope for a better future and what has kept me sane through everything. Even a mess and depressed, they were taken care of and always had what they needed.
My children have been gone since January 2016, this case is going on two years now. Wasting everyone’s time. They haven’t been able to actually show I’d be an unfit parent after two years. They would of, the case would of been over a long time ago. Best part is that’s the state’s biggest argument to get adoption started, the amount of time the kids have been out of my care, how convenient.
My children were removed from me in January and by February I already found a job and a place to live in Omaha. It took awhile before Marsha Anderson finally approved it for visits but then Nevaeh started coming there. I didn’t get to see my son until about April or May. Everything was going well until two incidents that caused me to miss their visits. Firstly, I couldn’t always hear my phone over the A/C until and the tv so I didn’t hear my visitation lady try telling me she was there. Instead of knocking, knowing my car was outside and I was home, she just left. After that she had a scheduling issues and asked to reschedule on a day I had an appointment and work to get to. I told her that it wouldn’t work and yet in the family meeting it ended up being my fault.
I also ended up having some health complications in August. I fell and broke by foot about August 8th. Which got in the way of working. Then After a family meeting on around August 16th, I had my first seizure the next day and by the 26th had another one behind the wheel causing me to be in a roll over car accident. I wasn’t hurt to badly but I just lost everything. Went from being independant to complete dependent. I ended up losing that home.
By November I moved in with my aunt in Plattsmouth. I ended up losing my social security card which took about three months to get due to post office. Even my worker went with me one of the times. Once I got that, I not only worked everyday for 3 months straight, but also was attending my visits and behavioral therapy appointments for the children.
I ended up getting my own apartment yet again by April. I still couldn’t drive due to past seizures and my aunt’s health quickly deteriorated. She had throat cancer and past within a few months of finding out. With that being said, she was the one helping me with transportation, I ended up in a rocky spot getting to my domestic classes, visits, and appointments. And my job. Ended up losing it.
If you’ve ever lived in Council Bluffs, its nearly impossible to find a job close by. Most job offers I received were for way out on 114th or beyond in Omaha, buses didn’t run that far out. After a couple months I was able to finally find a job. At first, they were giving me good hours but it was getting to the point i could barely pay my rent. On top of that, Come to find out my heaters no longer worked in the apartement and the owner didn’t want to to spend the money to fix it. I had to move yet again.
So, I decided it was time to go back home, to Sioux City. Which is where I am currently at. I was able to find a job here within about two weeks, have transportation, and working on finding a decent, affordable place. I’ve never been one of those types of people who have had a lucky, easy road in life, but i ALWAYS manage to figure it out. That’s what life is about. Getting through the obstacles. And that’s what I’ve done.
In my conclusion, if the state had any evidence of me being an unfit parent, they would of terminated my rights by now, but they haven’t. Instead, they’re just prolonging the situation and using the time against me.