saifsnicujourney

A story of premature birth and the NICU roller coaster

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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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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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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One year

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January 4, 2013 ….this marks one year since my son died. We miss and love you every day Saif.

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Signs and symptoms of Premature labor, my story with Preterm labor

Premature labor is scary to put it mildly. You never expect it, you never want to experience it and there are so many variables. My Dr went over all the signs and symptoms of what I should expect and what not to ignore etc ,just a few short weeks before my son was born….at 25 weeks and 5 days. I should mention ,that I had a cervical polyp that was bleeding ,causing spotting early on in my pregnancy and I now suspect a possible case of Subchorionic hematoma. This is a blood clot that usually resolves but sometimes can cause complications to say the least. I was ultimately diagnosed ,after he was born ,with an incompetent cervix. Needless to say ,I feel I have bad luck when it comes to anything medical. I am lucky I got to have my baby for 6 short months ,because some women loose their babies during the pregnancy before labor is even a thought, and some are stillbirth. Some arrive but don’t make it but a few days or even hours…or minutes. It’s a real tragedy that a parent never gets over. My main concern, is that I didn’t seem to follow the textbook list of signs or symptoms ,at least not that I can tell. Maybe I’m just oblivious despite all the research I had done before and during my pregnancy. My doctor told me the bleeding from my polyp wasn’t anything that affected the baby.. and that all bleeding I would have was most likely from this, unless I had other symptoms. Well I must have been leaking fluid the few days prior to my unexpected delivery, because I would go to the bathroom with only a trickle of urine. I assumed it was a uti and drank tons of water the first day I felt this way. Then the next day I felt pressure like a bowel movement, which should have been a red flag, however, I did in fact relieve my bowels ,and after water and rest it seemed to subside. I had a super mild pain in my left hip, which early on I had ,and was told it was a uti, so I drank my water again ….and since it was the weekend figured I would call the dr Monday if anything else seemed odd. Well my issues went away again. I was on vacation from work, and thought I was dehydrated and or perhaps needed rest ,as my job was demanding. Well ,the night before my son came ,I had belly button pain which was more of a discomfort but no other cramps or anything of note.(the labor and delivery staff told me bellybutton pain can be contractions…had not been told this before ,and my gyno said it wasn’t a sign….I beg to differ)I drank water and decided I was definitely going to the dr Monday as something wasn’t right. I relaxed all of the next day ,expecting my husband and I would go to the Dr ,when I suddenly started sweating and that hip pain was back, now it was more pronounced but not horrible. So I said I need to go to the dr now, and strangely I couldn’t get through on the phone ,despite their answering service. So as I’m sweating horribly, a pain shoots across my lower back ,and I thought I had a bowel obstruction or uti for sure…(.drink water and lay on your left side as dr recommended was working no longer). Now at this moment, I thought could this be premature labor or Braxton hicks but I reminded myself that my dr told me it wasn’t either one if after water the pain subsided and I hadn’t had any other signs till now or so I thought. Mind you I wasn’t supposed to be at any risk since the appt just a few days prior gave me a good bill of health and I was told baby looks REALLY good and my vitals were EXCELLENT. Anyway, I went to the bathroom to get ready for the ER ,when I noticed some blood and the pain across my back now wasn’t letting up. In about twenty to thirty minutes this sweating and back pain was taking me over and now I felt I’d made a mistake listening to my dr about the water and the uti and the stupid polyp. Why didn’t I just go in sooner, I tell myself till this day, however I was reassured that in my case, the labor went so fast that steroids wouldn’t have helped. Well before I could finish on the toilet my water broke and quicker than you can imagine my baby soon followed. I couldn’t believe it, I was in total shock and disbelief, why is this happening ….he’s not ready. I know many of you will say, how stupid can she be, doesn’t she know her body etc….I too ,just two weeks prior said the same things while watching YouTube videos of births….unexpectedly videos of preemies and stories of home births and yes…toilet births were popping up. I thought to myself, God forbid, I could not handle that. It was depressing and I thought…I’m not stupid enough not to know I’m in labor. The hospital staff assured me this is more common then folks know. Most women are lucky enough to know before hand that they are at risk for preterm labor, and they are closely monitored by their drs. This will sound crazy to most, but I had a dream just about a week or two beforehand ,that my son was born early and I was crying saying….this can’t be my son…he’s not ready…it’s not supposed to happen this way…and I was given a choice to accept the circumstances or not…I said of course I will keep him…even this way…he IS MY SON. The staff in labor and delivery at the hospital told me ,that if I had delivered him in bed or in the car, instead of the toilet, he may have died right away. They said the toilet water sort of shocked his system. The time it took to call 911 ,and have them respond as well as him being in shock so to speak probably saved him. This is because he didn’t try to take his first breath right away. If he had, that would be more time he was struggling to breath on his own. When the paramedics got there and determined he had a pulse ,they cut the cord. I didn’t know what to do. They whisked him away to the hospital. While I was in the ambulance ,they told me he was stable and they would eventually transport him to where I was ,when it was medically safe or possible to do so. My point to this story is no matter how wonderful your Dr is, trust your gut, or in my case don’t trust yourself. Question everything, and don’t be paranoid ,if that’s possible but be proactive. It’s better to be sent home from the dr or the ER feeling like you’ve overreacted than to have something like this occur. You never know how much time is if the essence. I still wonder if I had gone in a few days prior( I only had a 3 day span from symptoms till birth ) could They have delayed delivery for even a week? Everything happens for a reason and perhaps God didn’t want me to go to the ER only to be sent back home and deliver in the waiting room or the car ride home. I had been told that happens a lot in cases like mine. I feel horribly guilty nonetheless and I just want women to be aware sometimes there are undiagnosed reasons for preterm labor, sometimes it is spontaneous I suppose, but be aware it can happen to anyone. Learn from my case please. I have some useful links about the signs and symptoms you can check out. If you have fears or concerns, call your dr or visit your ER.

http://www.marchofdimes.com/pregnancy/pretermlabor_signs.html
http://women.webmd.com/premature-labor

Signs that I had…you should call your dr in my opinion or go to the ER

1. Urinating but trickling instead of normal urine stream
2. Feeling pressure like a bowel movement, even if a small movement follows….if your 20 weeks or more I would call the dr to make sure it’s nothing more than bowel strain
3. Hip pain, in my case mild left hip pain…it went away with drinking water and laying on left side, but came back
4. Belly button pain or weird pressure….could be uterus contracting even if no other cramps are apparent.
5. Sudden onset of sweating, even if its warm out, this could be your body going through one of the phases of labor…in my case there wasn’t much time before delivery…20 to 30 minutes
6. Sudden or increased back pain, lower back in my case, shooting across lower back near tailbone and above.

**** Be your own advocate, get educated about your body and pregnancy. Don’t second guess yourself. Have questions all the time for your dr ,and make sure you voice ALL concerns and pains whether you think your overreacting or not. Even if your not high risk ,or have no known medical issues ,be aware that these things can happen in any pregnancy. It is my wish that everyone has healthy full term pregnancies… including myself in the future. I may sound like I didn’t have a clue but believe me, I researched and read up so much my eyes could have popped out. I just hope to make women aware of my situation in hopes it saves them from going through it, or at least helps women to act quickly. thank you as always for reading my blog.

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