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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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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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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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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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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It’s been 2 Years since we lost you buddy…1/4/12

We miss you more than words can say. We talk about you and look at your pictures with your baby brother. Even though your in heaven, your still a member of our family. As they say..gone but never forgotten. We love you Saif ❤️❤️❤️ 😇😇😇

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Cervical cerclage

http://americanpregnancy.org/pregnancycomplications/cervicalcerclage.html

I had heard about the so called stitch a women can get in the cervix before but I had no clue what it was or that I would ever need one. After my son was born early at 25 weeks, the Doctor diagnosed me with an incompetent cervix. My mom had passed away two years ago so I couldn’t ask her advice on this , but she had this done with my sister. I wish I knew more about these things or that I had at least had more detailed discussions with my mom on this topic. In any case I knew if I was blessed with another pregnancy that I would be having this surgery. To be honest I think my anxiety over what would happen during the procedure was much worse than the procedure itself. The hospital staff was awesome and things went smoothly. The day or two after was a bit harder because of the soreness and me being afraid to sneeze or move the wrong way but I managed to get through it with the help of my husband. I have heard and read the success rate is pretty good with this procedure and I pray the same for myself. Time will tell but I have faith. I pray my son and mom are watching over us. My aunt old me before she died earlier last year that she knew my sister and I would have children. I felt good knowing she felt so confident and I know she’s watching over us as well. She told me to watch myself, take extra care and make sure the doctors watched me closely. This was a mirror to my mothers advice before she passed away. So I feel lucky to have three angels watching over me. After much rest and prayers I am hopeful for this pregnancy. If anyone has had any experience with cerclage or progesterone shots I would love your feedback. I feel I’ve strained my eyes reading up on the topic but I am always looking for personal experiences and feedback. Finally we are thrilled and excited for our future but also nervous and cautious. I will update you again soon.

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