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Everything posted by Umi

  1. Hi, It's been a very long time since I've posted here, but this listserv and everyone on it was my lifeline during my 2nd pregnancy with my daughter in 2006-2007. I lost my first baby girl at 36 weeks (named Umi) due to what was later diagnosed as Pregnancy Induced Protein S Deficiency, and luckily got pregnant again soon afterwards. I was very fortunate to have a wonderful doctor and the best care, and gave birth to a sweet and healthy baby girl 37 weeks later. My daughter is now 6 years old with perfect health, but when she was 6 months her doctor detected a heart murmur. A year and a half later, just before her 2nd birthday, she had open heart surgery to fix a large ASD, which is a essentially a pervasive hole. That too, was very successful and to this day she's had no further physical issues. However, in my initial research at the time she that was diagnosed, I found something online that said baby aspirin could cause the natural holes in babies' hearts that are there while they're in utero to either close more slowly or not at all after birth. Over the years, this notion has stayed with me, but I never followed up to find out more. Also, her cardiologist, who we nicknamed "Rock Star" because we was absolutely amazing and very handsome couldn't say that the baby aspirin I took during pregnancy was definitively the cause from a medical perspective. And I've always thought that if I had to take the baby aspirin again knowing what I know now to ensure I gave birth to a healthy baby rather than facing another still birth, I would, without question. If anyone has heard of anything like this or would like to share your experience with me, I'd love to hear more. -Ufasaha
  2. Jenn, Congrats on your upcoming birth! How exciting!! I had my baby girl in August, and have pregnancy induced PSD. I was switched to Heparin for the last 6 wks or so, then was induced at 37.5 wks. While I was in labor, my doctor (a perinatologist) decided to put me on a low dosage of Heparin, since I also had an epidural and was quite immoble. His logic was that there was a slight increased risk in blood-clotting due to my immobility, but a relatively low risk in excessive bleeding due to the dosage being so low. The original plan was to be off of the Heparin during the labor, but I trusted his judgement. By the way, I ended up with a c-section after only a few hrs of labor. I wasn't happy about the c-senction, but it was very necessary and everything turned out well. The best of luck to you. Ufasaha
  3. I'm so very happy for you, and that you and your husband have been able to enjoy your new pregnancy. I know very well the anxiety of celebrating after a loss. You are very lucky to have each other, and share in whatever comes. Ufasaha
  4. Firstly, I want to congratulate your daughter and wish her the very best for the delivery. I, too, stopped the injections, heparin, that is, the night before my induction. The risk, as my doctor expained it, was of bleeding too much during delivery. But since I had an epidural and was seditary, he put be back on a very low dosage of heparin to avoid a small risk of clotting during labor. I hope that helps. Ufasaha
  5. Hi James, I really like the idea of being able to post photos because it would be one more positive thing for those that successfully have babies can share with the rest of us. Ideally, it would be great to designate a place on the forum to do this, similar to the Pregnancy Updates, so that members can view them only by choice, given the sensitivity and highly emotional state of those that have lost their babies or are having trouble conceiving, as you mentioned. Thanks, Ufasaha
  6. I agree with everyone. I've been injecting in the stomach (side-belly) for over 4 months using the same method and have had virtually no bruising. I'm hoping that I can continue without running out of space for my last cuople of months and not have to switch to the thigh. Best of luck to your daughter. It still takes some getting used to. Ufasaha
  7. Hi Cilla, It's interesting that your doctor put you on Lovenox so early in your pregnancy. I also started taking 40mg of Lovenox, but not until 10 weeks. My dr. said that he wouldn't perscribe it earlier than 8 weeks because the placenta needs time to develop and adhere to the uterin wall properly. I'm now 26 weeks and all is going well. We lost our first baby last May at 37w, and I have no history of PSD. So now with my 2nd pregnancy, being treated for PSD is a new experience. However, I ask a lot of questions and this forum has been incredibly helpful in teaching me the lingo of PSD. Many blessing to you on your next pregnancy. Ufasaha
  8. Hi, It's seems this conversation has been reactivated after several years! It's interesting how many different treatments women are on. I'm 26 weeks pregnant and started taking 1/daily injection of Lovenox 40mg at 10 weeks + baby asprin 81 mg, Calcium suppl., Iron suppl (I'm anemic) and prenatal vits. Last week my dr. increased the Lovenox to 60 mg 1/daily because my blood thiness wasn't as thin as he'd like it to be at this point in the pregnancy. He will switch me to regular Heprin 2/daily at 35 weeks until I'm induced at 37 weeks. It all seems complicated, but I've been able to keep up the routine, and for a very good cause. Best, Ufasaha
  9. Hi Amanda, I'm so sorry to for losses! You sound like an incredibly strong person to have prevailed after so many heart breaks, especially the last one only a month ago! My heart goes out to you. I unfortunately lost my first baby last May at 37 wks. Her name was Umi. Yes, I went full-term with no other complications. At 36w, she appeared to be very small--only 20th percentile--and she past away sometime over the following week before I had a chance to have my weekly ultrasound. My husband and I suffered a great deal mourning her last summer. I had no history of PSD, but when the hospital tested me just after loosing Umi, my PSD levels were extremely low (I forget the #). Since that was the only abnormality they found, they attributed the loss to Pregnancy induced PSD. I was lucky and got pregnant quicky afterwards. While I didn't get tested between pregnancies, my PSD level early in my 1T was 36, which is boarderline. I'm now seeing a perinatologist that has treated this condition with success. He put me on daily Lovenox injections at 10 weeks, baby asprin and Calcium (+ iron and prenatal vits). I'm now 26 wks, and so far, so good. We have anxieties about loosing this one too, but feel we're getting the best medical care possible. There so many similar stories on this forum, and the women I share with here have given me the strength and knowledge to move forward. There have been many success stories among them, and I hold on to their blessings with the hope that I will have the same fortune soon. I wish you all the best with your treatment and next pregnancy. Seeking knowledge and positive support is a great beginning to having a healthy baby. Let me know if you have any other questions or just want to chat offline. Always, Ufasaha
  10. Hi Vanessa, My dr. said that PSD can be diagnosed by 2 indicators: amount of Protein S in the blood (antigen level) and the activity level of your Protein S. In other words, you may be deficient if you have too little Protein S or if the Protein S you have is not functioning as it should. Keep in mind that it depends on when you are tested, as levels normally drop in pregnancy. Here are the activity ranges: Normal (not pregnant): 60% - 140% Normal Pregnancy: around 40% Deficient: 35% or less My dr. also said that for pregnancy induced PSD, it's important that you are tested while you're not pregnant so that a baseline for you can be established. Since PSD levels drop and shift in pregnancy and any treatment you're taking will also effect results, it's hard to determine what you're levels are normally unless you have those test results. I didn't do this and I'm now expecting my 2nd baby. When I had my first prenatal exam my PSD (activity level) was 36, which was borderline. Since I lost my first baby at 37 wks, so my dr. put me on heprin to be safe. I hope that helps. Always, Ufasaha
  11. Elizabeth, You may have seen the perinatologist already, but one thing you might want to ask about it getting tested for PSD while you're not pregnant, after any post-partum healing. It will give you and your doctors an indicator for where your PSD levels are normally. It will also help them give you a more effective treatment plan when you get pregnant again. I made the mistake of not doing this, mostly because the pernatologist at the hospital I lost Umi did not recommend it, but then it caused some confusion for my new pernatologist at the onset of my 2nd pregnancy. I hope everything goes well otherwise and you are doing whatever you need to to heal emotionally and physically. Always, Ufasaha
  12. Elizabeth, I'm so sorry to hear of your loss. On the bright side, it's a good thing that you were diagnosed and it's treatable. I'm also fairly new to this forum and have benefitted from the great support of other women with common experiences. I lost my baby girl, Umi, at 37 weeks last May. My blood tests indicated that it was mostly due to a late development of PSD during the pregnancy. I got pregnant 6 mths later and am now 20 weeks with another girl. I'm taking Lovenox injections (a mild form of Heprin) and will switch to Heprin at around 35 weeks. I'm also taking a baby aspirin and a calcium supplement, in addition to prenatal vits and iron. While I'm very happy to be expecting again, it comes with many worries too. I believe having a treatable diagnosis is half the battle. Keep the faith, and I hope that you too with be on the road to expecting again soon. Warm regards, Ufasaha
  13. Hi Elizabeth, My dr. said that PSD can be diagnosed by 2 indicators: amount of Protein S in the blood (antigen level) and the activity level of your Protein S. In other words, you may be deficient if you have too little Protein S or the Protein S you have is not functioning as it should. Keep in mind that it depends on when you are tested, as levels normally drop in pregnancy. Here are the activity ranges: Normal (not pregnant): 60% - 140% Normal Pregnancy: around 40% Deficient: 35% or less When pregnant, I have a normal antigen of Protein S, but my activity levels are low/borderline: 36%. I wasn't tested in between pregnancies. My doctor also said that there is still little research on PSD in pregnancy so statistics and intrepretations across the industry could differ slightly, so your personal history plays a key role in interpretation of test results and treatment. Warm regards, Ufasaha
  14. I'm so sorry, Lissy-Lou. I hope that you give yourself time to mourn this loss. You're right to be positive about the next time. So I'm sending you many healing wishes, so that you can take the next step and try again. Ufasaha
  15. Hi Lissy-Lou, Congratulations!! I'm very new to this entire experience...1st pregnancy loss, PSD treatments, 2nd pregnancy, and this forum, which has given me immense comfort over the past 9 months. It sounds like you may be a bit more experienced, but it's proven that every pregnancy brings brand new joys and fears. I hope that we can continue to give you the comfort and support you need to get through the next 8 months. But what great news! Try to celebrate and enjoy every moment. Always, Ufasaha
  16. Hi Everyone, I hope everyone is having a wonderful holiday season. I recently found out that I'm pregnant again. This is a very happy moment for us. But, of course, after the loss of our first baby 7 mos ago, the experience of finding out we're pregnant feels very different than the first time, and like the start of a very long, uphill journey until we will hold a healthy baby in our arms. So I thought I'd to turn to you all, and ask if anyone knows of a particularly good hemotologist, perinatology and OB that specializes in PSD cases in the New York City area? The easiest thing would be for me to go to a doctor that is affiliated with the same hospital I delivered Umi (LICH). The perinatologist there has successfully treated patients with PSD, but I think it would be best if we did our homework first. Thank you, in advance, for any tips or resources you can offer. And again, have a blessed holiday and much peace & happiness in the new year to you all! Always, Umi's Mommy - Ufasaha
  17. Hi Everyone, I found this website several months ago, after loosing my baby girl, Umi, on May 31, 2006. After being on maternity leave and in a general fog for a few months, I finally started doing some research on Protein S Deficiency online. That's when I found this website. I want to thank you all for sharing your stories with me during a time when I couldn't talk to anyone else besides my husband that shared our experience. Now I'd like to return the favor and share my own. I was 37 weeks when my midwife examined me and couldn't find Umi's heartbeat. Up until then I had a "perfect" pregnancy beside being generally miserable and uncomfortable carrying my first baby. At the same time my husband and I were elated and anxious to hold Umi in our arms in a few short weeks. I was having such an uneventful pregnancy, medically speaking, that on one monthly visit, my ob/gyn at the time threw up her hands and said that there was nothing for her to do. All my tests were always normal. I didn't even have high blood pressure. So I decided to switch to a midwife in my 7th month to get more personal attention as the BIG day approached. I have to say that it was the best decision I ever made and I couldn't imagine anyone else by my side for the horror we were going to experience a little over a month. At 36 weeks, my midwife thought I was carrying a bit small and Umi's movement was sluggish. It was starting to get warm and we thought the seasons changing could be the reason. My husband and I were also small babies at birth, so there was a general feeling that Umi would be like us. But to be on the safe side she sent me to the hospital to have her weight estimated and a sonogram. She was in the 20th percentile and my dopplers were abnormally high. Apparently this wasn't enough for them to induce me (10th percentile - is the danger zone), so I was told to come back weekly for a sonogram for monitoring until I went into labor. So for 8 days I went about my normal course of life not knowing that my baby was suffering and at some point had actually passed away. Of course, as you all know first hand, May 31th was the day that a peice of me died along with Umi. The good news is that I can get pregnant again, will have to take heprin and have excellent chances of having a healthy baby in the future. However, in the meantime, my husband and I are still mourning and struggle with getting pregnant again so soon. We want a baby very badly, but also feel very vunerable. So when I found this sight, I took Umi's name because there was something enduring about using her identity to tell her story, which is really my story. Eternally , Umi's Mommy
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