saifsnicujourney

A story of premature birth and the NICU roller coaster

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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We were blessed with a new life

I haven’t posted in so long , but I have a few minutes between diapers and feeding to share the good news with you. I had my baby boy over the summer and he has kept me busy. Lots of dirty diapers and sleepless nights but I wouldn’t trade it for anything. I had to give up my job but that’s a post all on its own but everything happens for a reason I believe. I had a mostly normal pregnancy thanks to the awesome doctor who kept a close eye on me this time around. I found its best to see the same dr or nurse practitioner throughout the pregnancy. I had some spotting early on which happened last time as well. I am almost positive now that my job activities were a large part of this issue and of course the hormones in my body and how they work or don’t work for that matter. I used Happy Pregnancy cream which is a bio identical progesterone cream which I feel is literally a lifesaver. The doctor gave me a cervical cerclage at 13 weeks, which thank God didn’t cause me any issues, and held up well till 37 weeks (when it was taken out in the office). It was not a great feeling taking it out but not horrible either. Also from about 20 weeks I got progesterone injections into my buttocks…ouch. They can be quite painful overtime but definitely worth it since I made it to 39 weeks and 1 day. Also I had to test my blood sugar daily after the blood glucose test was not kind to me. The progesterone shots may be to blame as the hormones cause the gestational diabetes to rear it’s ugly head. I managed this by diet which was tough when you have cravings but thank God I made it through just fine. I woke up on August 9th and used the restroom to discover my water leaking. I was excited but scared out of my mind. At 7am I went to the hospital to find I was 4cm dilated. I was thrilled that I made it there this time around and that I was full term. Honestly my labor was mild..the nurse couldn’t believe how well I was tolerating the contractions. I couldn’t believe it either but to be honest my cycle is more painful so I was lucky not to struggle…yet. As time went on I started to stall at about 7cm so the broke my water completely to help things along and the dreaded talk of pitocin(spelling?) came up. Up till now I was going it au natural and planned on staying this route.after talking to the doctor the nurse started pitocin and I got to 9cm ,although with back labor and the effect of pitocin, my contractions became so strong and back to back. I chickened out at this point and my gut told me to get the epidural. I was disappointed in myself but I’m glad I made this choice. It was about this time my doctor came to check on me to find out the baby was in distress and the nurse knew but whoever called the shots didn’t tell my doctor. She was pissed and yelled at the staff and called for an emergency c section. God works in mysterious ways because had I not gotten that epidural I would have wasted precious time. The doctor was awesome and made the right call because my poor son had the cord wrapped around his neck twice. Thank God he came out perfect. When I heard his cry..I cried and I was in shock and thanking God for this little miracle. I was dead set again drugs or surgery but it most definitely was Gods will to keep us both safe. As a side note you should take the drugs as ordered post operation. I was going to try and go with a lower dose and I learned the hard way that you need the drugs. A fill in nurse(short staffed…my luck sucks) took over one night for this awesome nurse I was supposed to have, and she forgot my medicine after I only took a half dose. Well I asked five times for the meds and if you know me, I don’t take meds if I can avoid them , but this girl never brought them and after almost ten hours of asking for the meds finally someone else brought them. It turns out not only did she forget me but she offered the meds to the wrong patient. To cover her mistake she told the charge nurse I was asking for them to soon. If nearly ten hours in between meds is too soon, well pardon me for asking. I cried and almost couldn’t make it to the bathroom and back, which was only a few painful feet from my bed,but alas I did make it. Despite this I am grateful for the other nurses and my doctor for the awesome care. Well I have to go now as my son beckons for his lunch but I will update or add to this post when I have more time. Thanks for letting me share my experiences with you.

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A Miracle After A Tragedy

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Our newborn son has given us much joy where sorrow used to live

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Dreams

So I went to visit my son at the cemetery and I was feeling particularly sad. I was feeling like an unfit parent or that I somehow could have and should have done things differently. This happens every now and again. I also felt like I didn’t have enough time to visit him, yet I felt silly talking to him at the cemetery. This is because I feel he is always around at home. I don’t know this to be true but I kiss his picture everyday and I’m always thinking of him and sometimes I talk to him at home. It feels weird to me to do this at the cemetery but I do want to visit him there as well for fear he may think I abandoned him. I know this probably sounds completely crazy but this is some of what goes through my mind.

Last night I had a dream of my son. I haven’t had one in awhile and I was missing that close feeling I get when he appears in my dreams. He was in the hospital for a second time. In real life he had one long six month stay but often I can only imagine him in that hospital. In all of his pictures, he has wires and tubes and such. The only wireless, and tubeless pics are of the day he died. Still I love to look at his face without the tubes, but its tough when its not the high point of his time here. Anyway, he was laying there with the breathing tube and I suddenly can hear his voice. I notice the tube fell out completely and I panic and press the button for the nurse. She asks what his vitals are, but the screen went blank, so I tell her I don’t know. She said how does he look, I said fine. I was shocked he wasn’t in distress and he was breathing on his own like a pro. Then a passerby said goodbye to someone and my son says bye bye. I’m in shock thinking how is this possible. I had only ever heard his voice a few times when he was not on the tube (2weeks) and once when the tube wasn’t in correctly and I heard him making baby noises. In the dream ,I couldn’t understand how he was “normal” and not struggling. After awhile a nurse comes in , then another and they said I have just one question, why haven’t you picked him up….I was never allowed to hold him with this type of breathing tube in real life so needless to say I was nervous to pick him up. When I finally picked him up he was laughing and looking around just like a normal full term baby. I couldn’t believe my eyes. Then there was a coffee mug on the table and it had a giraffe and a monkey on it. He said …I like that mug. I look and examine it, he says aren’t these the things you love to buy? I do tend to collect things with these animals because it reminds me of him. In fact there is a giraffe on his gravestone. I said to him..how do you know..he laughs and says…you do don’t you!?! Then ,he can tell I’m still confused ,and he says …mom I’m not sick anymore ….at this point my husband comes in to see this miracle and the whole time my son is smiling and laughing. One more time the nurse said to me(she had said it one or two times earlier in the dream) maybe this is a sign that he doesn’t need to be here anymore, he’s not sick anymore. I took that to mean that maybe I shouldn’t think of him sick like that but rather a happy healthy baby. After all, I believe he is in heaven and he would be happy and pain free there. All I know is he felt real as if I was there holding him and I woke up so happy and feeling refreshed/rejuvenated. I just wanted to share this story. I hope it doesn’t make me sound to nutty but I have had dreams of him before telling me he was ok…I guess he just wanted to remind me again.

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My inspiration

I love this face and he gives me so much inspiration from above. I try to be a better person each day to make him proud even though he’s all the way in heaven.

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Makena versus compounded hydroxyprogesterone

I’m curious to know if anyone out there has info from personal experience on getting these shots. Have you had successful pregnancies with these injections or are you currently taking one or the other? Do you think there is a huge difference? I’m given to understand they both have great success rates and I read a lot about women going full term and even being overdue. I would love to hear your stories, thanks for stopping by my blog.

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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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