I am 24 weeks pregnant and have been living with lupus for 2 years. I am just coming out of a pretty bad flare. This time it affected my hips/knees. I couldn’t even think about walking for a couple weeks, my husband carried me from bed to couch to bathroom. Now that that is almost over and I am mobile again, I get bad news from my high risk doctor. At only 24 weeks pregnant, I am already 75% effaced and funneling. He hooked me up to the monitors and I was contracting every 5 minutes, I felt nothing! I am now in extremely strict bed rest and medication to stop contractions. Our doctor told us to try to mentally prepare ourselves for a micro preemie. Has anyone else had pregnancy complications with lupus? Is it because of the flare? What’s your miracle story? Praying our baby boy grows fast!
praying for your baby to grow strong and healthy
First of all, let me say that I really do understand what you’re going through. I had a micro preemie. I was 21 weeks and my water broke completely. I was sent to a level 4 hospital. They had every professional come in the room and explain to me why the baby was not “viable” at that stage. This was all before we knew anything about my health issues. I stayed in the hospital for 5.5 weeks on complete bed rest. Honestly, I I had to stay in almost a complete meditative state. The connection between mind and body is strong. Every time I would get upset and freak out something would happen. I’d bleed, lose what little water I was building up, have contractions etc. the biggest concern was infection. They were more worried about me than the baby because they were expecting a miscarriage. They prepared me for all the things that could be wrong with her…mental retardation, cerebral palsy etc. at 27 weeks I began to run a fever. They induced labor…for 2 days!!! I wasn’t dilating. I had an emergency c-section and my daughter came out breathing on her own and 955 grams (2lb 1 oz)! She is 14 now, no delays, perfectly healthy! She did have early intervention for the first 2 years.things like turning over, crawling, walking were delayed. Now she is a competitive horseback rider and and a high honor roll student at school! She is truly my miracle!
I’m sure you will have questions and fears along the way. I felt so alone not knowing anyone who had been through what I had been through. Feel free to message me anytime.
Praying for you and your baby.
i am very sorry for you and your situation.
I hope others can learn from your situation to throughly check out with all their doctors before even attempting to have a child. Plus think about what are you going to do when you have flares with small baby. Hopefully you have others to help with their care.
I can understand how it can seem misleading about lupus and pregnancy , raising children as you often read about so many who have children etc so it can seem like it does not add much difficulty to your life but in truth raising children especially with an chronic disease should be taken extremely seriously as really having any child. Here though you must think about possibility of passing on disease, the health of yourself both during and after pregnancy. How happy with children be with a chronically sick parent especially if only parent or main parenting parent.
I hope that you are being treated by excellent OB that works with with difficult pregnancies especially lupus on regular basis...if not please ask for one. For both your lives and well being. High risk OB is what you need.
I hope that it all works out well for you and your child and include you in my prayers/positive thoughts .
I do have an incredible support system around me! We did talk extensively about having a baby before we started trying. We couldn’t imagine NOT having one. We were both previously married, he has 2 boys ages 8 and 9, I have two boys ages 9 and 3. We desperately wanted one together to complete our family unit. I had been flare-free for 8 months prior to conceiving. My prior pregnancies were textbook with absolutely no complications which, along with being flare-free, helped my rheumy get on board with the idea of getting pregnant. I currently still see my rheumy, along with my ob/gyn and a high risk pregnancy specialist. I am in very good hands. I was hoping to hear from other lupie moms who have had complications and read their success stories. We are as prepared as we can be to welcome a micro preemie, although we are staying determined that with bed rest and medication our little man will continue to grow inside me for at least another month. As of 3/19 he was 1 lb 12 oz
Even though I do not have a story of lupus and micros . I myself was a Micro PReemie born at 27 weeks gestation . and I have NO issues from being a newborn- perfectly healthy (despite lupus though) person! I was behind my first couple years and I had to take a special reading class (but now I love to read!) I am now 28 with no other issues other than lupus - are you too late for a stitch? otherwise just hang in there drink A LOT OF WATER!!! and keep bed rest - This more than likely is NOT from a flare - your cervix just thinned out early - which is a complication in MANY people without lupus
Yes, too late for a cerclage 
I have both a success story and a bad story. I have had 3 succesful pregnancies and one that ended at 32 weeks. I saw a high risk ob with all of them. I was on partial bed rest with the first two and was able to carry to term. My third pg was difficult from the get go. I had to be put on high dose steroids and total bed rest. Not easy when you have two toddlers to care for. Her heart stopped at 32 weeks. I have Sjogren’s as well as lupus and fetal heart block is a risk so it was more from Sjogren’s than the lupus. Then I started perimenopause at 32. So we tried for another but nothing. Then after a year of no period at all I got pregnant. I started going into labor at 27 weeks and had to stay at the hospital while they got it stopped. I was back on full bed rest, on meds to keep my uterus calm. He was born 3 weeks earlyat just under 5 lbs. Unfortunately, I went into a bad flare and haven’t really felt well since. My insurance changed and I had to see a new rheumy who refused to give me cytoxan and nothing else really works as well. My youngest is now 8 and has no delays other than an auditory processing disorder. He was behind the first few years but is fully caught up now. My older two are 18 and 16. My advice is to stay on your left side as quiet as possible and drink lots and lots of water. I hope you have someone to help you care for your older kids while this is going on. I was lucky enough to have my mom close by and she did alot of the school pickup and drop off, cleaning, and cooking. I don’t know if they put you on steroids to help with lung maturation or not but I hope they have. I’ll keep you in my thoughts, Annemarie
I forgot to add that there is a great site to talk to other high risk moms. If my brain would work I would give you the site…lol The women on there are all experiencing difficult pregnancies. They had a group for those of us on full bed rest and we’d chat all day and celebrate with the others when a healthy baby was born. It really helped me get through the bed rest wirh my sanity intact. If I can remember the name I’ll post it for you. Hugs, Annemarie
Keepemcookin.com has a support group for mom’s on bed rest and at risk of preterm delivery.
Thank you!
Ann…I love how you call me “zeus’s mom”… That should’ve been my screen name lol.
I wanted to add something. I really cannot stress the importance of the mind/body connection here enough. Think about when you have a nightmare. You can wake up sweating, heart racing, crying even (I know I have). All because every cell in your body is reacting to what’s playing out in your mind. That first night when my water broke I just prayed for God to give me the strength to endure whatever it was that I was going to have to go through either way. I fell asleep and woke up with the most overwhelming sense of peace I’ve ever had in my life. It was also the most frightening thing I’ve been through.
Also, and I’m getting ahead of things here but it was a huge fear of mine…I had to leave her in the NICU for 2 months. The hospital was far away and I didn’t know how I would ever bond with her normally. It’s a big family joke now “the baby you thought you’d never bond with” because we are so unbelievably close. I think because of all we went through we share a greater bond.
I will keep you in my thoughts and prayers. Please do not let fear consume you. Fear can be so detrimental. Stay calm and peaceful as much as possible. Everything you feel the baby is feeling. Send love, and strength, and thoughts of strong lungs to the baby.
That’s one of my biggest fears is having to leave the hospital without him… It keeps me up nights
I found out my baby had a complete heart block. She had her 1sr pacemaker put in at 6 days old. She had a total of 5 pacemakers. She had open heart surgery at 4 yrs old to repair an asd. She just past away 3-3-2013. She wS 23 yrs old and has 2 boys. My heart is still broken. We did have 5 kids. All the other kids did not have that problem. We have buried 2 of our daughters. One born at 24 weeks in 1980 so she was too small to live. She didlive 1 1/2 hours. Jaimie that had to have the pacemaker was born exactly one month early and lived 23 yrs. Good luck with your baby.
Lisa Norene, do you have Sjogren’s? It’s what typically causes heart block when you have other immune disorders. I was rigorously screened throughout all of my pregnancies to make sure mine did not develop that. With our daughter that we lost, her heart just stopped unexpectedly, the non-stress tests done the day before showed nothing or they would have hospitalized me immediately. This was 14 years ago. I’m so sorry for the loss of your daughter. Such a hard thing to get through. Hugs, Annemarie
lisa norene said:
I found out my baby had a complete heart block. She had her 1sr pacemaker put in at 6 days old. She had a total of 5 pacemakers. She had open heart surgery at 4 yrs old to repair an asd. She just past away 3-3-2013. She wS 23 yrs old and has 2 boys. My heart is still broken. We did have 5 kids. All the other kids did not have that problem. We have buried 2 of our daughters. One born at 24 weeks in 1980 so she was too small to live. She didlive 1 1/2 hours. Jaimie that had to have the pacemaker was born exactly one month early and lived 23 yrs. Good luck with your baby.