saifsnicujourney

A story of premature birth and the NICU roller coaster

Please visit this link….it’s super important!!!

http://missmarzipan.com/2012/10/30/cupcake-for-charity-part-2-aka-changing-the-world-diy-style/

Please visit this link from a fellow blogger. It’s for a great cause. She has donated to some great organizations and she has helped me find another way to remember my son and help others in need.

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Please donate to the Bliss organization in memory of my son

http://www.bliss.org.uk/make-a-donation/

Please donate to a good cause. This organization gives all proceeds to families and babies in need. Some babies are sick, some are born too small and some too early. I set up an account in memory of my son. His name is Saif Bashir Nihlawi. Please select : personal donation, and in memory of someone special…it’s under Saif Bashir Nihlawi. I’m hoping we can help babies and families just like ours. Thanks to a special woman for directing me to the site.

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Some pictures of my Saif

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CPR for infants and children

http://www.babycenter.com/0_infant-first-aid-for-choking-and-cpr-an-illustrated-guide_9298.bc

This is the protocol for choking and infant/child CPR. I was recently certified in CPR for adults, infants and children. I hope to never have to use this knowledge. Obviously if it was needed I wouldn’t hesitate to use it. The question I have is for a baby aged 6 months what is the correct policy on CPR application? Is it what is outlined here in this website I attached? I ask because adult CPR was used on my 6 month old which most certainly caused irreversible damage internally. I know he could have died even if they used proper technique but I often wonder if the force applied brought him to death sooner than had they applied correct technique. My mind is wandering to what ifs once again. I keep promising myself I will stop doing this but it’s hard when I don’t have solid answers. I should mention some staff used the two finger technique after two rounds of CPR but by then it was too late. Also what I want to understand is why while he was on machines would he ever need CPR? I am reminded however after the hospital acquired blood infection he had that it led to sepsis and coma ,so I supposed since they didn’t treat this in a timely manner that caused the shut down of his organs. I am just frustrated that there were so many things that went wrong due to negligence or maybe ego in some cases. They told me more than once that children with developmental disabilities were not productive parts of society which I think is a horrible attitude or philosophy to have. They shouldn’t get to make Gods decisions. If he had developmental delays or hearing loss as was mentioned, then it wouldn’t stop me from continuing to love him and get him help he needed. I wouldn’t settle for those diagnosis I would push forward with therapies and anything else he needed to make him the best he could be. Should we write off people with disabilities? It begs the question of whether it was purely a medical concern on their part or maybe due to several mistakes or delays in treatment, they feared lawsuits. See, when a child survives these complications that my son experienced, then there are concrete issues that show up later in life that people sue over since they were hospital errors. When a baby dies they can cover all their mistakes and say you have to have known he was sick, he was premature etc. I have heard of cases where babies had worse issues that lived and there were babies in the NICU that died a few days after him that appeared to be going home just prior to an infection or other complications that seemed to pop up.The fact is they didn’t have his best interests at heart as far as I’m concerned, they had their agenda or cover our butts attitude. One lawyer declined the case stating that this stunk to high heaven and that it was an obvious cover up. Nobody will touch a case like this where records were doctored and death certificates were changed. It’s your word or bits of evidence against what’s on paper no matter how false or backwards it is. This may seem all over the place but if you read my previous posts you may get a better picture of how this all fits together.

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How I spent my birthday last year…October 17th

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This was the best and most memorable birthday thus far. Thank God I have pictures and video.

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Gloomy weather makes for a tough day

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Why do the gloomy, rainy weather days brings such sadness? Maybe it is this fall weather when the days are becoming shorter ,or maybe it’s because I was holding my son this time last year being told he was coming home soon….either way I’m feeling slightly depressed and sorry for myself. I am trying to give myself a pep talk…others have it worse then you, he’s in a better place etc. I know this is par for the course but it honestly sucks. My moms birthday is on the 25th also and I’m missing her terribly as well. This was her favorite time of year. She would make pumpkin pies and soon her many varieties of Christmas cookies and chocolates. My birthday was the 17th and I was looking at pics of my son and how adorable he was when I spent my birthday with him last year. I’m praying for better days ahead but so far I’m in a funk. For now I will continue to try and talk myself out of this funk but I’m also trying to convince my husband that it will get better. Lets hope for both of us that we can get each other through these tough times.

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The truth about what grieving parents think, at least I agree….

This pretty much sums it up….I found this on a chat forum….while its nobody else’s fault that my son died and their life goes on after the funeral, I am still figuring things out and knee deep in grief and confusion.

My child has died – what can you do to help?

Please don’t ask “how are you?” unless you really want to know the answer…
How are you?” has become a meaningless greeting to which the expected answer is “fine”. But I am not fine. At best I’m a bit fragile and a lot of the time I’m far worse – I feel upset, hurt, bewildered, angry, guilty. But these and other normal feelings which follow the death of someone you love are not the things of polite conversation. So if you are not prepared to hear about them, choose another way to greet me.

Don’t expect to much of me too soon….
If I’d broken my leg I’d have a plaster cast on and you wouldn’t expect me to get back to normal for months. you can’t put broken feelings in plaster and you can’t see the scars. But they need time to heal and I need time to come to terms with the realization that “normal” from now on is life without my child.

Don’t ignore the death or the child that died…
You wouldn’t have any trouble talking about good news. If I’d just won Lotto it would be the first thing you would mention. Bad news is different – you probably don’t know what to say or how to say it. But the death of my child is the most important thing in my life and it helps to acknowledge that.

Be honest, and try to avoid platitudes…
“This is awful, I don’t know what to say” is far more help than cliched phrases that aren’t true anyway. Time alone doesn’t heal, the fact we’ve got each other is irrelevant because two drowning people can’t save each other and there is no comfort in the thought of this misery being God’s will.

Don’t think that having, or being able to have, other children will lessen the pain of my child’s death…
A child who loses a favorite toy will not be placated by a substitute. And so it is with people. I loved my child for who he was as an individual, not as an interchangeable piece in a set and mourning for him, at least at first will strain rather than strengthen bonds with other children.

If you want to help, make specific offers not empty promises…Saying “if there’s anything I can do” might make you feel good, but I’m unlikely to take you up because I probably don’t know what I need and I’m unsure what your “anything” means. However if you turn up with food, an offer to babysit, or just a listening ear, your kindness will be gratefully accepted.

Practice, don’t preach…
However weak or strong my faith, and whatever your beliefs, this is no time for sermons.

Be sensitive…
I find it hard to believe life in the outside world is still going on when my private world has collapsed. I hope my child’s death won’t leave me bitter. But it will take me time, months, years, before the weight of my own feelings lightens enough to allow me to share your joys or sorrows.

Don’t expect me to follow a prescribed pattern of grieving…
Denial, anger, guilt, depression and acceptance are all stages in the grief process but no two people will go through them in the same way. I’ll have good days and bad days, sometimes I’ll cope with a lot, at other times I’ll be phased by little things. It may seem illogical to you, but then feelings often are.

Don’t confuse control with coping…
A stiff upper lip probably means I’ve got a tight rein on my feelings, not that I have come to terms with them. You may not be comfortable with crying or screaming but they are far healthier than numbness, which is a sign of denial.

Keep in touch…
I’ll always be grateful for the practical and moral support you gave immediately after the death and I know you have to get on with your life.
But grief doesn’t end with the funeral and occasional phone call, note or visit will let me know you haven’t forgotten.

The death of my child has left me emotionally and spiritually shattered. It will take time to put the pieces together again, to rebuild relationships. But when things get really bad, knowing there is a friend who cares may be all I need to tip the balance in favour of recovery.

Written by Elspeth Ludemann. First published in “North and South” (New Zealand) in March 1991.

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First trimester screening, Down’s syndrome vs false positive

http://www.homebirth.net.au/2008/04/first-trimester-screening.html

I was told the first trimester screening was mandatory by my OBGYN. I had it done and the sonogram came out fine but the blood work drastically increased the chances of my baby being born with Downs Syndrome. This was a trying time for my husband and I . We knew we wouldn’t abort but we were afraid we weren’t going to be able to raise the baby with all the complications that can come with Downs Syndrome. We wanted to know as much as we could about our baby’s future. I was considered high risk after this and had a few extra tests and sonograms. I also had to go to a Pediatric Cardiologist for a sonogram to see if the baby’s heart was ok. They look for certain things with Downs Syndrome. The baby was perfect, no markers for downs on the sonogram. When I went to the high risk specialist for the anomaly screening, it showed nothing of note . This was awesome for two reasons: 1. The chance of my baby having downs, in my mind, was slim to none.(dr said he looks fine) 2. The Dr was horribly rude, after saying the baby was fine he suggested the amniocentesis as a precaution because he said nothing is 100 percent, while I appreciate his thoroughness, when I politely declined, he said you have limited time to change your mind…ok…I said thank you but not at this time, he got mad and said FINE, then threw a towel at me and said clean yourself up, and stormed out. In any event I heard from a few friends and family that said they all had false positives with boys(this was the day I found out my baby was a boy). This made me wonder if there was something in my family medical history that caused this false positive or was this test really unreliable. If you have any experience or knowledge on the topic please let me know. Either way I think it’s important to test for anything that could impact the baby medically. I also think maybe they should revisit what the test should be for this.

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Tired of having to be sensitive to others feelings

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I’ve been silent most of the time when I’m around family, friends, or coworkers. I don’t bring up my son. When I try to or even just make a passing comment , people have walked away from me. Sometimes they change the subject as if they didn’t hear what I was saying or maybe they don’t think it’s important. I know other parents have gone through this, but most people seem lucky to have supportive people around them….people that want to help you remember your child. A big part of me starting this blog and posting pics and videos is so I can openly and freely discuss what happened and how I’m feeling about it. My family and friends have actually said its to much for them to handle. Well then, how is it they can’t consider my feelings? I have been more than accommodating with them, being careful not to show pictures or talk about what he went through….because they can’t handle it. I know a counselor is paid to listen but should that be my only outlet, should I be forced into the dark, kept silent…I don’t think so. Am I wrong? There was a period where my son was at his best…sucking his thumb, holding his pacifier, smiling etc, but nobody was around. Some of it was that people were busy with other obligations but most of it I think was people being afraid to become attached to my son only to lose him in the end. Isn’t that a risk we take in life? Was my son not worth rallying around? I can’t help but think if he had more than just us, his parents, then maybe it would have made him feel more love around him. As I’m typing, a family member just called me to see if I had some books that I borrowed from them awhile back. What angers me is when I called them a few minutes prior, they told me they were to tired to talk and they were going to bed. When I start talking about my son, how I’m missing him….suddenly the person gets sick, or tired, or suddenly recalls something they have to do other than just listening. If I talked only about my son, I could see it becoming a burden on someone, but I’m only able to talk to my husband and strangers. This seems so wrong to me. Does anyone else out there have similar stories or feelings about this topic?

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Anger and outrage

I don’t know how to channel my rage at this hour. We have made so many attempts to seek legal counsel to investigate our sons case ,as we believe its a wrongful death case. This won’t bring my son back ,so we recently decided to let it go and move on. The firms we contacted all denied us saying the same thing….they did and excellent job of covering their butts…referring to the hospital…in a professional and legal manner on legal letterhead of course….”we regret to inform you that we are unable to represent you at this time”etc. So the thing is ,that when my son died and we saw the death certificate that they were supposed to file, it said certain causes of death. I said to my husband, they are either really stupid for admitting these certain things ,or maybe they aren’t worried because its somehow supported medically. So as we waited for what seemed like forever to get the death certificate in the mail…it finally came and it was indeed different, you might say it was “doctored” just as his medical records were when we received those( the records were like pulling teeth to get as well). We were dumbfounded . After many months ,we decided it wasn’t healthy to keep chasing the legal end of things only to find we were stuck and at the mercy of these people. We decided as a last ditch effort at the advice of a lawyer ,we would just contact the hospital to get a copy at least of what they filed. After waiting a month or more ,after we were told by medical records that the Doctor refused to release this information, my husband called the city,the hospital again and legal counsel and found out that not only will they not release it, but it was in fact amended. You can imagine I have smoke coming out of my ears at this point. The thought of our fears that these drs causing our sons untimely death is now all but admitted by this Doctor saying ” We don’t have to give you anything, it’s for our records only, you don’t need it” . In all my days I have never known someone so cruel and without a conscience. When they asked us to pull the plug, this same man looked us in the eye and said, we can treat him as he will live like you request but we are not going to ,because we feel he will just keep getting better and than worse. What does that mean!!!!! I know if there is a terminal diagnosis or a solid reason that the Drs feel you should give up ,that they will try to guide you to do what they feel is best for the patient. The fact is they couldn’t and wouldn’t give us a reason other than to boldly look at us crying and say, sorry he’s just to sick, you need to let him go. It makes me sick thinking that I did the wrong thing by trusting these people with my sons life. In the end this Dr just sat and stared at me literally, waiting for time to pass because he knew my son was dying. He didn’t have the decency to tell us what was happening…he agreed to change out his femoral line that supposedly had clotted up, but then just sat there staring at me. He never changed the line. It would ruin his story ,to say he was killed by a blood clot that traveled from that line, which by the way was proved not to be the case when they did a test for it. He did have two horrible infections that they delayed treatment on and he was overdosed on diuretics which they knew would shut down his body. The infections led to sepsis, coma, shut down of his organs and after a few rounds of chest compressions…death. We have many theories…some based on assumptions for things we researched but mostly based on fact ( gathered from asking questions to kind nurses and interns and medical records we got before they were later altered.)We refer to him now as ” the closer”…. The guy they send in to finish the job…convince the parents to let their son go…if they don’t agree ,we do it anyway because we can. I know this may sound accusatory and diluted but rest assured I speak the truth. I have more detailed information about what they did or didn’t do for my son that will blow your mind. They make no apologies for mistakes that were made either. They said things like ” well he was premature so he didn’t have a fighting chance, you knew he could die” . To this we replied….aren’t you in the business of saving lives…this is the NICU isn’t it. They said ” We are a teaching hospital, we are allowed to make mistakes…we are still learning, and besides…Neonatology is a relatively new field.” I know preemies are at risk, but when my son was supposed to come home and then suddenly something mysterious happens(see previous posts) and they act like we are crazy saying, at 3 months) you always knew he could die ….this is no comfort and very unprofessional. The thing is ,some kind hearted staff there ,told us things were amiss or guided us to asking about certain things. One person directed our attention to key factors that meant…yes they made fatal mistakes with your son, he doesn’t have a chance unless you get him out of here. They made sure he didn’t leave, we believe ,so that if God forbid he suffered major problems down the road like mental retardation or cerebral palsy etc that we couldn’t pin it on them. One more thing…this is appalling…they told us several times that diagnosis like cerebral palsy, deafness, autism, mental retardation etc essentially are reasons to pull the plug, saying these children have no quality of life and aren’t productive members of society. This blows my mind being that I work with Autistic children,some of whom have cerebral palsy, muscular dystrophy , downs syndrome and other diagnosis. These children are very vibrant and are valued as human beings. Well I have rambled on enough for now but I am once again unsettled with my sons passing. I pray for Gods guidance and peace, that’s all we can do anymore.

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