saifsnicujourney

A story of premature birth and the NICU roller coaster

Happy birthday in heaven Saif!!!

Happy birthday Saif. I spent much of last night thinking about you as I do often. I know your up there watching us. I wish you were here to celebrate with us. I can still feel how the weather was that day and what it was like holding you for the first time. You were so small but you opened your eyes and looked at me. I doubt you could see me, being a micro preemie, but it felt like you could. In that moment I felt afraid, sad, happy, and guilty. I cleared your airway. Though your lungs were so tiny and you came too soon, it was as if you were ready for your life to begin. I had no clue what I was doing or if you would even make it. I didn’t know anything about preemies and not much more about newborns. I just knew I wanted to be your mom more than anything. I am forever thankful that I held you, even for a short while and despite being in shock. Soon, they took you to the hospital. I am thankful for all the time I spent with you, even though it was in the hospital. I hope you know how much I love you and how I wished I was more assertive in the hospital. Thankfully, a few great nurses let me hold you and bathe you. There were a lot of times I was told not to touch you but I see so many other nicu moms got to hold their babies, even with all the heavy machinery and tubes. I dont think I was given enough time with you but I cherish what we did have. I am imagining now, what it felt like in those moments we spent together. Thankfully I do have pictures and some videos but I wish I took more. I selfishly thought we would have plenty more time at home as a family. Even though your not here, I feel you around me. I hold you in my heart and imagine that your here with us in spirit. I hope you are having fun, running around without all the tubes and wires, in heaven. Give everyone hugs and kisses from us. We all send our hugs and kisses to you and mom and all of our family up there. I’m sure mom is celebrating with you. Please watch over us and know we love you and miss you. Happy birthday my little giraffe.

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Watch “Saifs NICU Journey 6/20/11 to 1/4/12” on YouTube

This is the video I made for my son Saif. His birthday is coming up and you know what that means, all the “what if” moments. What if he were here for his birthday? Would he like a Transformers or Spiderman themed party? Would he get upset that his brother and sister try to blow out his birthday candles? What would he look like? He would be 7 this year. How is it possible? It doesn’t feel like it has been that long. Everyday I think of him and watch his siblings playing. Of course, I think about how they would all get along and imagine them chasing each other around. When his birthday rolls around, it just hurts a little more than all the other days. It hurts to look back at this video but I think it is therapeutic. Today, my son threw a toy and accidentally knocked Saifs name off the shelf. It was cookies that a friend made for me. I had been saving them because I couldn’t bare to eat them. He said baby Saif would be sad when we went to his house, if he knew the cookies broke. My son thinks Saif’s house is in the cemetery. He can’t grasp the concept that he would have lived here with us. We talk about Saif as often as the kids ask but they are still too young to understand. I was crushed when he broke the cookies but I had to stop myself mid scold. My son didn’t understand what the cookies were and obviously this was just an accident. They are just cookies. It just felt like a punch to the gut. He isn’t here for his birthday and I still can’t ever feel whole. I know that is normal but somehow I think I will get to a magical place one day where my mind will reconcile what happened and why. I don’t logically think that will ever happen. I just feel lost in my thoughts at times when I reflect back on those days in the NICU. Why does it have to be memories only and memories that are becoming foggy. That hurts. Shouldn’t all my memories of my son be crisp in my mind? Well, Im going to pull myself out of this fog for now because my daughter is requesting a snack. I am very thankful for my children and my husband who keep me present and happy. My kids like to look at pictures of their brother. They call him baby Saif, even though he is older. Obviously he was a baby in his pictures, so naturally he will always be a baby in their eyes. Thank you as always for stopping by. Please feel free to check out his video if you feel inclined to do so.

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A lighthearted article

Preemies are oftrn forgotten when it comes to clothing. They are too tiny for preemie sized clothing when the are micro preemies for sure. Even preemies weighing in around 4 lbs and as big as 5 or 6lbs, dont have a great fitting onesie or pajamas. This article shows how one mom answered this issue by making clothing for these little miracles. Check this article out.

https://www.google.com/amp/s/www.today.com/amp/parents/chrissy-teigen-has-preemie-problem-so-many-moms-can-relate-t13020

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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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Its been a long time since I’ve updated/blogged

I haven’t blogged in so long and I need to get back to it. A lot has happened to my family and I over the last few years. As you all know I lost my son back in 2012. I still grieve his loss but I feel he has had a hand in my two blessings/miracles. Since starting this blog I had found out that I have an incompetent cervix. This means I needed to have surgery in my last two pregnancies at 13 weeks gestation.
The surgery is to stitch my cervix closed to increase chances of a full term pregnancy. There are various stitches for this condition and it doesn’t work for everyone. By God’s grace it has worked for me two times. I never dreamed I would be lucky enough to get through two pregnancies. I also had to have progesterone injections weekly from about 19 weeks to about 35 or 36 weeks gestation.  As I’m typing this, I am still shocked and beyond happy and blessed to be blogging about two healthy children. My son is two and a half and my daughter is almost six months old. I joined a few groups on Facebook that deal specifically with incompetent cervix and related issues and child loss groups. They were a big help. I hope everyone reading this is doing well too. I have my hands full these days and some lost sleep but I wouldn’t change it for anything. My son is smart as a whip and my daughters personality is really blossoming and I think she will have a great sense of humor, like her mother of course lol. My son enjoys his ABCS immensely. He’s a fan of Mickey Mouse Clubhouse and all things PBS. my daughter is starting her stage 1 foods and she really enjoys them. I will post some info on incompetent cervix, I probably have but I may post more and progesterone injections. Hopefully I will get a chance to blog more. Thank you for reading.

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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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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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