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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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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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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