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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The birthday was a success

I was able to get through my sons first birthday with out crying…the entire time. It was amazing and a fun time of celebration. I ordered special cookies for the party and my friend surprised me with a cookie for Saif too. It brought a tear to my eye, followed by complete happiness. He was officially a part of his little brothers birthday. Thanks Tiffany Walters, the cookies were fabulous. Also, my sisters made the day awesome. They made the little cakes and food for the party. My nephew Sam was born one month early almost exactly to the day. He shared in the birthday festivities with his best buddy Zain(my son). We are lucky to have a cousin so close in age and they live close by. All in all I am grateful and blessed, thank you God for sending me my boys.

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My son will be One…..where did the time go???

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This is a bitter sweet milestone for us. My “rainbow” baby is going to be one this weekend. We are having a zoo animals theme. I got plenty of decorations and ordered special zoo animal cookies too. We are so blessed and honored to be parents again and to celebrate such a big milestone. At the same time, I feel sad because we never got to do the same for Saif. I imagine him helping his lil brother blowing out candles and opening presents. I imagine him running around, he would be 3. He would have made an amazing big brother. We celebrated his birthdays at the cemetery of course but I firmly believe he will be watching over his lil brothers birthday party. I always feel like he’s here for these kinds of things, if only in my mind or heart. We keep his pictures and some of his things around to help us feel him and keeping his memory alive. I hope he is happy with how we have remembered him. Well, we hope to have an amazing celebration this weekend. Hopefully I can load some pictures.

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Before pics

This is what these pics were taken from

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New and improved pics of my angel

I saw a post going around facebook of a father asking for pics of his angel without the tubes and wires from the hospital. He said all her pictures were from the hospital. The folks who helped him were amazing and did a fabulous job. My friends helped me find the link to reddit.com where he asked the favor and several people helped. I did the same as I had been hoping for this for 3 years but didnt think I could get this done. Check out the before and after pics. I also added filters to the pics that were done.

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A visit to the cemetery with my new son…an experience to make you think.

So this year my son would have been 3 on June 20 and ,we did as we always do, we went to visit him. This year we took my son who is ten months old. He got to see his big brothers resting spot. I don’t know if he could possibly have any idea what this experience was like for his parents , or even have a concept of where he was, but he was smiling and making all kinds of happy noises. It made me wonder if his brother could see him and vice versa. Were they communicating before my very eyes? I just know …it was bitter sweet. It felt good but also so sad because we wished we were celebrating with a big cake and balloons and watching him open presents and having his little brother helping him. All I know is as I was wiping tears from my eyes he was kissing my cheek and snuggling with me. He knew just what I needed in that moment. I tried not to get overwhelmed so as not to upset him or make him afraid. I want him to have warm thoughts about his brother and visiting him…as much as one can when visiting a loved one at a cemetery. When I show him pictures of his brother he cried when he was younger even though he smiled at other pictures of family/babies. It made me think….does he recognize him….what does he think when he sees him? Now if he happens to see pictures of big brother he smiles and makes his happy noises. I say “look at your brother isn’t he cute?” And he smiles and touches the pic. Maybe he’s just following my cues but it makes me feel good that he associates smiles with his brother. I started researching life and what happens when we die after I lost my mother four years ago. I had never questioned my beliefs or religion before and just knew things to be fact when it came to death and the afterlife. Maybe its the Long Island Medium or Heaven is for Real hype, but I started thinking that my son and mom are still with me in some way. Mainly I had started having dreams with my mom after she passed and a few with my son before and after he passed and they had messages for me that actually occurred in real life. Anyway I know there are a lot of skeptics out there who think this kind of thing is crazy and that I’m probably crazy for looking into it but I’m ok with that. I used to be super against any type of medium or fortune telling etc especially since my religion taught me to stay away from that stuff. Now , I don’t go to get my fortune read or anything but I just know after having a dream with my mom and son in it(details in a follow up blog) that heaven is for real and they can come to you in dreams. I also am thinking that when my son babbles and smiles and looks over my shoulder or off to the corner etc that he’s definitely seeing someone….hopefully my mom and/or my son. Maybe my aunt who passed away….she said my sister and I would have two sons before she passed. I had thought it was wishful thinking or just comforting words but check my next blog for those details as well. It came to be. Anyway to sum it up, it was a good experience and I hope we can repeat this in the future. If your interested, please check out my next blog about my thoughts on the afterlife etc.

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What is Amniotic Band Syndrome? Congenital Birth Defects

http://amnioticbandsyndrome.com/

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Amniotic Band Syndrome

Recently a family member lost her baby and it may be due to Amniotic band syndrome. I had never heard of this before and it never occurred to me something like this was possible. When I was young my father always used to say… “Babies are a true miracle,a gift from God.”He would tell me how it amazed him just how the cells divide and how the organ systems form and everything has to be just so for a healthy baby to be born. I ,along with my sister, used to think he was dramatic. Afterall we see so many women around us having multiple babies … seemingly without issues…wasnt it just straightforward?!? You do the deed and make a baby right? When I was in my late twenties I had wanted to start a family with my husband and it seemed women came out of nowhere to tell me just how hard it could be to get pregnant. They would tell me not to wait till I was older and felt I had financial stability or what I thought would be the right time. My mother told me several times to get checked out before having a baby. I got paranoid thinking I was doomed. I was in good health after all so why the panic from people. My mom passed away after my first miscarriage so she never got to see my son Saif be born but it was as if she already knew how it would play out for me. Needless to say but I learned how fragile life could be with the loss of my mom to lung cancer, and my son after a miscarriage and followed by the loss of my aunt to lung cancer all within a four year period. It amazes me how many women take healthy children and pregnancies for granted. So much can go wrong and when it all goes right…a real life miracle. So many women suffer multiple losses… early and late term…some never have one healthy child. It is mind-numbing to say the least. I say all that to say….life is fragile and we must all appreciate what we have. My miracle is sleeping on my lap right now..Thank you God for your many blessings and especially for another chance to be a mom. Thinking of all the women who suffered loss no matter what age the baby or youth/adult children…my family and friends who have suffered …may you experience peace and blessings.

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My video for my son who passed 1/4/12

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