saifsnicujourney

A story of premature birth and the NICU roller coaster

Cmv, Cytomegalovirus

This is popping up in the news and online more and more. Cytomegalovirus  or CMV as it is more widely known, can cause deafness and even death in some cases. My son aquired CMV through a blood transfusion in the nicu. I got tested for it at that time, shortly after his birth, and I tested negative for an active infection. I had immunity for CMV in my bloodwork. I’m no expert on the topic but after my son was diagnosed, I read everything I could on it. Unfortunately there isn’t a lot of information available.  If you look at this from the alternative health standpoint, you will find a bit more information on it. It’s something that, in healthy people, doesn’t seem to cause a lot of trouble.  It seems like the common cold. If you have a compromised immune system, or a preemie like my son, it can be deadly. Some babies will survive but may have mild to severe complications. Some babies will succumb to the issues that arise while the are in the nicu or even afterwards. Some babies will die in utero. There are pretty intense medications that can be prescribed but they also have side effects. Those medicines are in the chemotherapy family of drugs. I am glad that awareness is being spread. I am glad there is treatment available.  I hope there may be some answers as to why and how this continues to be popping up more and more frequently.  It’s sad to see the way it’s affecting babies and immunocompromised individuals.  My son was treated in the nicu and was supposedly in remission so to say, however, he passed away. His hearing never suffered per testing they did. His vision was good as well. He did have typical issues of preemies, like needing a ventilator, that played a big role in his demise also. In the end, it’s about awareness and research. I hope both improve greatly.  Alternative medicine has an interesting take on it. If you read Medical Medium, you will get some insight from that perspective. I am putting a link below to an article that popped up online recently about CMV. I hope you take a moment to read it. Also, check out Medical Medium too if your so inclined. I will continue to research this topic for now. Thank you for reading.

 

http://www.wgrz.com/mobile/article/news/health/cmv-virus-causing-deafness-in-newborns/71-466924064

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Sacrificing for your kids is normal, in fact, it is your duty.

This may just be me but I believe in sacrificing for your children. Even if that child is a preemie being taken care of by nurses and doctors. Am I old school? Maybe.  I think that when you become a parent in any capacity, this is your duty. It is a given.

It’s certainly ok to have help from family, friends or services. It is also ok to take some time out for yourself if you have the luxury of childcare or a partner who is awesome at making that happen for you. If you have the means for pampering yourself while your child is taken care of, do it. Often times while your child is in the nicu, you and your partner are juggling work and nicu time. It is not very different than most parents who are dealing with school or daycare. There are sacrifices to be made, whether financial or juggling time. I think its ok to feel good about your sacrifices because you love your children. It’s ok because you feel really good inside, despite the stress that can come with this sacrifice. At least, that is how I see it.

When my son was in the nicu, I was working full time.  My husband worked fulltime and had a night job. We managed do this and get to the hospital daily because we wanted to. It was also our duty. Sure, we got stressed out and tired but who doesnt. We were dealing with a lot, afterall. I know that this started to show on my face and my overall appearance.  I had gained weight from stress and stress eating. I didn’t have money to buy new postpartum clothes. I had old jeans and maternity pants that were starting to wear thin. I didn’t really care because my money was going to parking at the hospital and eating there too. My paycheck was literally zero for about 6 months or maybe even 7. This was because I picked up a family plan from my health insurance carrier. I needed to make sure there were no extra costs that piled up. He was on my husbands plan but if anything wasn’t covered in full, we wanted it to roll over to my plan. It was a suggestion that saved us money in the long run. Have you ever seen the cost of a nicu stay? You don’t want to, trust me! Well, as a result of the cost of my family plan, sacrifices had to be made. I was on a new budget. My check was zero every payday and my husband was now the sole provider, technically. People started to make remarks about how terrible I looked or that my clothes were old. Really? I hadn’t noticed(sarcasm)! I would confess to them about my lack of a paycheck and my budget being the reason for my appearance.  You would think they would cut me some slack. They were cruel and persistent.  Isn’t it ok to go without something so that your child is taken care of? Even now I do the same. I get clothes or shoes as needed but only if it’s in the budget. I don’t go on spa days or have a lot of “me” time but it’s ok.

I am happy that my children are happy. I find time for art therapy or crochet. I take time at night after the kids have gone to bed to read or blog. I’m not ignoring my needs but I’m conciously choosing not to be selfish. I see some people who have tons of time to themselves and help from grandparents or sisters or uncles. They take time to themselves ,by locking their bedroom door ,while their toddler or younger children play on their own. I don’t agree with that but it’s none of my business  (insert Ketmit meme here lol) I would would be a terrible liar if I said I was not jealous about the childcare options people have that I dont, I am lol. I don’t begrudge them happiness or help though. I just get angry when I see people going on and on about their lack of personal space and time. You chose to have children. They criticize me for not getting my hair done monthly and shopping for clothes, weekly. Yes, I know someone who is on a budge but splurges weekly on trinkets and clothes for herself. That is a bit excessive right? I just feel I shouldnt be shamed for enjoying taking care of my kids above myself. If I’m happy with my life, then why can’t you be? Put down your book or phone/tablet and turn off Netflix and play with your kids. Engage in their activities because time is too short. Don’t feel like you aren’t good enough because you haven’t gotten news clothes or a new manicure every week. Feel good because you spent that money feeding your kid or taking them to the zoo. Maybe you splurged on Chuck E Cheese or some other hellish children’s place. They love it, so you do what you have to. I have gotten comments from family and friends on plenty of occasions about my appearance and I have decided that I’m done caring. My clothes are clean. I’m showered. Why do I need to impress you? Yes my gray hairs are peeking through. I may not be trendy like I once was but it’s ok. I’m not sure that any strangers care, so why do people I know get so bent out of shape over it? It is ok to sacrifice for your kids. They are absolutely worth it. It is your duty. Thank you for reading.

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Beautiful moments captured of Preemies

I found this Huffington Post article,  http://m.huffpost.com/us/entry/us_56421939e4b0b24aee4bdce2 , with moments captured in the Nicu. It features parents and their preemies and gives a little blurb on each pic. Its heartwarming and sad. Its also inspirational to those going through that journey and roller coaster ride. I pray each and every preemie makes it home and grows up healthy and happy.

 

http://m.huffpost.com/us/entry/us_56421939e4b0b24aee4bdce2

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My son is 3 and his big brother would have been 5

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I can hardly believe my little boy turned 3. The time is going by so quickly. I look back on his newborn pictures and I’m in awe. Its a great time of happiness and celebration. He was so excited to get text messages and social media messages (that I read to him) wishing him a Happy Birthday. He was genuinely thrilled and I loved watching his reaction to each one. He told me he feels old now lol. We had a party with his cousins when they were in town. He had a small cake on his big day with us. He will have a party with my sisters son who was born one month earlier at the end of the month. He loves his parties. The only thing missing of course was his big brother. Everything my son does reminds me that I miss these milestones with Saif. What would Saif want for his birthday? Would the two boys be inseparable?  Would their personalities be the same or opposite. Despite feeling time ticking quickly with my son, it seem like just yesterday Saif was born. In fact, it’s like the clock stopped in a way. I have a hard time wrapping my head around how my life played out. I am so greatful and thankful to God for giving me three beautiful children. Even though he took Saif back, he allowed me to know him. In some ways I know it would have been harder if I didn’t get that time with him, even if it was spent in the hospital. I think of the things hes missing or rather that I am missing without him. I wonder what my kids will think about him when they are older. I try to keep his memory alive but I don’t know how aware my kids are of what details I give them. I like to think that my kids met him in some fashion in spirit. I like to think he is around watching them. I haven’t had a dream with him since around the time I was pregnant with my 2nd son. I miss him so deeply and yet I feel so disconnected lately and I feel guilt about it. I also feel guilt about him being born prematurely.  I thought that would go way but maybe it’s worse. I try not to blame myself but I think its par for the course. When I hold my kids,  I sometimes imagine what it would have been like to have him home and to nurse him and watch him grow. I know he suffered greatly while he was here. I know now, more clearly, all that he went through. I am happy he is at peace and pain free, really I am. It just sucks. I think part of me is just now feeling the reality of what happened.  I think I haven’t ever fully grieved or maybe this is what I’m supposed to feel. Who knows anymore. In any case I am enjoying my kids and seeing them play together and laugh. I have guilt when I have to discipline them because I think that I should just be easier on them since I am lucky to have them. The other part of me says I need to discipline like any one else and not to smother them. It’s a mind game that continues battling in my head daily. I enjoyed my sons birthday but instantly my head says, don’t enjoy it too much because Saif isn’t here and its your fault. My head also tells me don’t screw it up with the the two kids you have. It’s a struggle but I am thankful and confused nonetheless.  There are woman out there who would love to have my problems. I just keep telling myself that this must be normal and maybe I have PTSD. Well, I thank you for reading and helping me navigate my life without Saif. I thank you for following my blog and as always, feel free to comment.

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Why are people so rude and unfeeling???

I’ve experienced people telling me I should just get over losing my son and even losing my mom. I got angry in the beginning and less so as time goes on but people shouldn’t be allowed to be so rude and nasty. I’ve been seeing this more and more on some message boards I follow for child loss and Incompetent Cervix Awareness. If your friends and family can’t or won’t be supportive, then how can you “get over it”. Everyone grieves or deals with life in different ways and in their own time. I was told, it’s been two months, your not allowed to grieve anymore. I was told, it’s Mothers Day, why are you crying? It’s been two years, why are you still upset? I have been told, your son was never meant to be here, glad I got to tell you that because your not really educated on premature birth….from a childless friend. Your son should have never lived as long as he did, he was meant to have been a miscarriage. Your mom smoked so ,she brought lung cancer on herself, it was her time. No matter how a person died, you loved them dearly and you didn’t want them to die. Whether it was lung cancer or a helpless baby who was born too soon(lived for six months in NICU) and succumbed to the hospital and complications of prematurity, it’s not ok to tell someone to get over it or they deserved it. You should not say, it was his or her time. I’m so tired of this mentality and that people feel they are helping others by saying this hurtful and insensitive garbage. I suffered a miscarriage before my preemie and I was only in the first trimester but guess what…it still hurts. A friend had this happen at only five weeks and over a year later she’s still in pain over the loss. Just because you can’t handle the persons grief, or you don’t understand the situation , you should NEVER say this kind of nonsense. Keep your mouth shut if your unsure of what to say and think how you would feel if it was you. Especially around the holidays or the anniversary of a loved ones birthday or day of passing, don’t be crass and say you need to get over it already. Don’t ruin the holiday for everyone else, I was told. This is what people really say. I think I have a thicker skin or I’ve excepted that folks don’t care to understand but I feel for those who are more sensitive than myself. It still burns when people try to tell me why or how these deaths happened when they weren’t there or never went through it. My son was alive and I’m tired of people telling me he shouldn’t have made it or that he would have been severely impaired and I wouldn’t have wanted him around. For the record, I worked with children with disabilities and they were a joy to be around. They were very smart and had a lot of love to give and they enjoyed life. They had medical issues or social impairments but a person is a person no matter what. That’s a different topic I will get to another time. I just think that especially during the holidays, it wouldn’t kill folks to be nicer. Say, I’m sorry your still suffering. Say, I know you suffered a big loss and it’s hard to celebrate the holiday without your loved one. Say, I don’t know what to say because I’ve never experienced what you have but I’m here for you. Give a hug if that’s your thing. Let the person talk about the memories of their parent or child or even their pet. Just please don’t say it was their time or anything else hurtful. I hope I got my point across on this one. Also Happy Holidays to all, be safe and enjoy. If you are having a hard time, cry, it’s ok. Put a picture out of your loved one. Don’t ever be ashamed to remember them. Peace to everyone.

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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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