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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