saifsnicujourney

A story of premature birth and the NICU roller coaster

Flashing back to this time of year in 2011….WARNING contains some graphic images and content.

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These are pictures of my son Saif in November 2011. We were told in October 2011 that he would probably be coming home in late November or early December. I was hoping sooner but I knew he had to meet certain requirements and those things took time. Anyone in the hospital for any reason ,whether routine procedures or illnesses ,know that each hour or day can be life changing. Literally these moments are life changing because it can mean a turn for the worst or a miraculous recovery in some cases. Some of these things can be explained and some never are. Some are freak accidents or incidents and some are a lucky break where the Drs and nurses tried one last thing that made the difference. I still contend that there are amazing Drs and nurses out there despite what happened to my son, some of those Angels worked on my son. I’m not disenchanted with all medical staff, at least not after the grief cloud begins to clear away a bit. Once you look at the situation from a more logical stand point ,you realize things for what they were. The thing is ,you also remember the dark times when errors were made and it brings you back to, what if this or that hadn’t been done. One day we are told, “when you come in don’t be nervous but there are bruises on your sons head. We were trying to get a vein”.This happened a few times before, (the bruises)so why the frantic phone call? It was a red flag. Add this to the fact that the night before I couldn’t sleep. I woke up out of a sound sleep in the middle of the night around maybe 2 am or so and made my husband call to check on my son. Mind you when I left him earlier that day he was doing well I was told, but I had wanted his blood checked for a possible infection and they wanted to hold off for two days which went against how they normally proceeded. I thought I heard unusual crackling in his chest. I’m no Dr but I asked if his ribs were ok or if he could be checked for pneumonia. Why did my gut make me ask this? Flash forward to the middle of the night call, they couldn’t find his nurse. He was always to be monitored by his own nurse and yet no one knew where the nurse was. I later found out the nurse had been trying to get help from the respiratory team and nobody responded so he left to get them, they were outside his room. He just said “did they tell you they worked on him for an hour?” No they told me they couldn’t find you and that now your back,no details. Well I didn’t know what he meant when he said they worked on him. I thought maybe suctioning him and doing normal things to clean him or get him calm and comfortable. I went in the next day and still no tests were done or so I was told. They refused X-rays too which was highly unusual. He seemed a lot better but had a blank stare. I later found out he stopped breathing because the tube was left unattached or perhaps came unattached. In my research I found that, however it happened, he may have had a clot travel and by accident(info proven later to be withheld from us) that his rib was broken potentially due to compressions aka CPR. Since his heart didn’t stop and was tested several ways and he was on the ventilator, one would wonder how he ended up with CPR allegedly. This was never documented on records available to us. It was however allegedly on internal records. This is how the rib was broken where a month prior I heard crackling. I wasn’t told until a whole month later. It still gives me chills thinking about what really went on that night. How and why this could have been prevented but wasn’t? I now think that his nurse was legitimately going to get help because while he was on break my sons tube wasn’t attached for whatever reason and he was struggling to breath on his own, possibly coding and thus the need for cpr and the broken rib. None of that incident was ever properly explained to me but I also believe this is where the finger marks on his head came from. It wasn’t normal marks from an IV and I had definitely seen IV marks on him before. When he finally passed away they had to do CPR and I will never forget those images. This, however, is how I know how they perform CPR (mind you I was certified for CPR as part of my job) and they did adult CPR …so in my belief my son never had a chance even if there were no other major medical issues. That was not the way they should have done it and I have asked Pediatricians and nurses and NICU Drs since then and it just wasn’t done right. If you know the amount of pressure used during this procedure, then you know it won’t end without crushed ribs. He was left with an indent in his chest. Anyway ,the first pic shows his normal appearance with the addition of these bruises. The second pic shows how he looked 24 hours later. Yes you read that right, only 24 hrs later. I was given the “we don’t know why he’s so bloated” story so many times after that. In my research it was directly related to “the incident” . There were other severe complications that arose which were related to chest trauma and they couldn’t explain to me why he was experiencing those either. He did improve after “the incident” but probably would have suffered brain damage and God only know what other lingering effects. Don’t get me wrong, maybe he would have other “complications of prematurity” as they put it. Maybe he would have delays or other complications in life, I am well aware of this. It just hurts me and my husband deeply to know that after all he overcame, neglect took him out to include a pressure sore on the back of his head that wasn’t cared for properly. This allowed for one of two infections he acquired and ultimately sepsis which killed him. Well I say all of this to say that these pictures and the way its dreary and snowing out today, it brings me right back to that moment. It makes me feel inadequate that I was unable to do more for him. My logical side tells me I probably couldn’t have changed the outcome even if things had gone differently. In any case this is what I was thinking of today. I needed to get that out so that I can snap back into my new reality. Thank you for listening.

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When is a good time to “Get over it!” ? Grieving after nearly 3 years

I will be the first to admit that I think a lot of people appear to grieve too much. I mean that they make no attempts at living after a loss. Is that really wrong though? I mean to say, it isn’t for me to say or to judge. I should be especially considerate to those who have lost and can’t get out of that funk so to say. You never get over loss. If it’s your parent, grandparent, aunt, uncle, cousin, child, cat or dog, you just never do. It changes you forever. I personally try and find the good in each day. I am especially thankful to God for giving me a miracle after my loss….my second son. (Not pushing religion but I do believe in God) I couldn’t have imagined for a moment how my life would turn out. I never expected to suffer miscarriage let alone the loss of my son, who was born premature. There have been a lot of things in my life that I never expected and you can never really prepare yourself for these things. Some suffer the loss of a limb or even death at the hands of terrifying persons who don’t value life. Some suffer loss of a child at the hands of a gunman or a drunk driver. Some lose a beloved pet and that is very similar to losing a family member, after all they have been around for as long as your kids in most cases. I lost my son at the hands of a diagnosis of prematurity, a micro preemie, and ultimately to hospital error. I lost my mother to cancer and we knew it was coming but why was I still in shock when it did happen? The thing with loss is ,you feel so alone after the loss of a child. After my mom passed ,everyone eventually was able to talk about her and share memories. Even after our family dog passed, we got on with life. I’m doing pretty well at life these days. Had my second son not come when he did, I’m afraid of what I would be like. I worry that I was plugging along with my job and other activities, but was I really living? The thing nobody tells you, nobody really can tell you, is that people don’t really pay attention to you after you lose a child. I think it is partly fear of not knowing what to do or say. It’s also partly the feeling of not wanting to “bother” you and not knowing how to process that loss either. What is upsetting is when you want to talk and share a memory ,whether good or bad, people shut you out. In the beginning ,when I was obsessed with what if this or that and overwhelmed with the need to sort through it all, I can see people wanting to stay far away. I had someone tell me that I ruined them forever ,because I made them go to his funeral and they had never experienced loss, not even a pet, let alone a baby. The thing is, I warned ahead of time that it may be to much and I understood if people couldn’t attend. I tried hard to put their needs ahead of mine because I knew I would be selfish in that time and only think about how his loss affected me. It was someone who I thought was a friend, and after announcing my pregnancy of my second son, they shut me out completely. I’m lucky if I get a response on comments I make on their Instagram. Some people will humor me but I see them cringing and praying that I will move on to a new topic. I haven’t really brought him up to anyone in a long time, at least not in any detail. I don’t want to upset people but also I have come to a place of acceptance ,that even had I done things different that it was all in Gods hands. He wasn’t healthy enough to stay here no matter how hard I tried. Now of course ,every once and awhile I will hear a story or see an article or Facebook post on preemies or child loss and it sends me right back, if even for a moment. The thing is though, recently I had that experience and I asked a family member….What if this happened, do you think this is possible? Maybe they did this or that and they couldn’t control such and such happening to make him worse. Well I was told to get over it and that I need to stop dwelling and asking what if. I was told I am not over it and I need to let him rest and move on. Yes I do need to let him rest and move on. I have, honestly I have. You just get those days or moments though, and you have to indulge just a bit into the insanity of your mind so you can move on with your day. I don’t think that’s wrong so long as you can keep about your day to day activities and be present. I am honestly in a good place now and thank God for that and for my husband and son. My son keeps me busy and keeps me laughing. Yes, there are days when he makes me want to pull my hair out, he is a toddler, but I wouldn’t have it any other way. I guess I just won’t ever understand why more people don’t reach out after a loss. Most people want to talk about it. They need to, and not just to a therapist. I haven’t gone to a therapist, I probably should, I do reach out to a group online regularly. The point is, there really is no definitive time limit on grief. I probably shouldn’t let other upset me by saying negative or hurtful things. I am only human after all so, Yes…I do get hurt or upset, that’s just who I am. Do you have any similar stories or experiences to share? Please comment on my blog post. Thank you for reading.

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