Recently survived HELLP, baby in NICU

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Re: Recently survived HELLP, baby in NICU

Post by JScruggs19 » Sun Jan 23, 2011 02:27 am

When I asked my doctor about testing for autoimmune disorders, she said that around 2 months was long enough to wait. I guess there are different views on how long to wait. I may do some more research...if testing later is in my best interests I will want to ask them to re-do them.

Re: Recently survived HELLP, baby in NICU

Post by blythe » Thu Jan 13, 2011 06:31 am

Congratulations on bringing your baby boy home healthy, and great job with pumping and breastfeeding!!!

It's my understanding that testing for autoimmune disorders should be done at least 6 months post-partum? Sorry I don't have a link for that, it's just in my head for some reason. Even normal pregnancy messes with levels of lots of things in your body, so testing a good amount of time after birth gives your body time to return to normal. Your doctors may have good reasons for testing now, I'd be interested to hear what they say!

Thank you for the update and for sharing your successes!!

Re: Recently survived HELLP, baby in NICU

Post by JScruggs19 » Thu Jan 13, 2011 05:14 am

Hi everyone. Sorry for not updating for so long. I want you all to know how much I appreciate your support and shared stories. It definitely makes it easier knowing that I am not the only one to ever go through this...although I wish no one ever had to. We pretty much spent most of December, Christmas Day and all in the NICU, which was very hard, but we have made it. I managed to keep my milk supply up by pumping, and we were able to spend some time getting our son's room ready for his arrival.

I have nothing but good news today. My son came home on New Year's Day! It was an amazing way to start the new year. He spent 5 weeks in the NICU, so he came home 3 weeks prior to his due date, which I find amazing. He is currently 5 pounds, 12 ounces and shows no signs of any medical problems at this time. My husband and I realize how fortunate we are to have a healthy mama and healthy baby after all we went through. I know that not everyone's stories turn out like ours, and I keep those families in my thoughts every day.

I am currently being tested for autoimmune disorders. They have ruled out lupus and anti-phospholipid antibody syndrome, but my rheumatoid factor was elevated, so more tests are being done. Has anyone else tested positive for an auto immune disorder following HELLP?

Once again, thank you all for your help and support. My son is so beautiful, and I know I would do it all again to have him if I had to.

Re: Recently survived HELLP, baby in NICU

Post by kristal1213 » Tue Dec 28, 2010 05:38 am

My LO just came home 1 week ago. She was born at 27 weeks due to HELLP. We spent 11 1/2 weeks in the NICU. All I can really say is take it one day at a time. I had a hard time trying to balance my time at the NICU and home life with my 3 year old son and Husband. Live in the moment! when you are at home be at home and when you are at the NICU be at the NICU. The other thing I can tell you is to try and be prepared for when you go home. I had everything I thought I need when I went home, but there was so many emotions I was not prepared for. I was use to being in the NICU and I made relationships with many of the nurses. It was hard to not have them around for support. Also I would clarify roles between you and your husband. Than you both know what to expect from each other. And be ready for anything and don't get to disappointed when there is a step back. Remember that the end goal is to go home with a HEALTHY baby, not just for the baby to be home. I wanted to be home for Christmas and setting a goal like that was very hard because it made every setback seem even worse. Good luck and I hope you have an uneventful NICU stay.

Re: Recently survived HELLP, baby in NICU

Post by ozierja » Tue Dec 14, 2010 07:46 am

Hello,

I was just checking in again to see how you and baby are doing. I hope all is well!

Re: Recently survived HELLP, baby in NICU

Post by caryn » Fri Dec 10, 2010 09:05 am

I'm just checking on you and your baby -- please keep us posted as you're able!

Re: Recently survived HELLP, baby in NICU

Post by jenprzygoda » Wed Dec 08, 2010 06:58 am

Welcome! This forum has been a godsend for me. While I was lucky enough to bring my baby home when I left the hospital, I can certainly understand some of the feelings that go along with feeling like your body has failed you. I have also found this forum amazing in helping with the flashbacks I have had and the depression that hit a few months later. Please feel free to post your feelings and questions, just read others' posts, or do a little of both. THat is the great thing about the women on this forum. We have all been through it so it is the one place to go for people who really understand what you went through. No one in my family (no matter how well meaning) can understand what I went through the way the women on this forum can. Whatever you are feeling, don't be hard on yourself and just share when you are ready. Wishing you and your baby the best!

Re: Recently survived HELLP, baby in NICU

Post by preemomof2 » Wed Dec 08, 2010 03:49 am

Hi, I am so glad you and your baby are doing well! I had HELLP in feb. of 09. my doctor told my mom to pray for me as i was going into the surgery (i had to have an emergency c-section). i lost some blood and had a platelet transfusion, i ended up in the ICU for 2 days. My baby was born healthy, small but healthy. I know it's sad coming home without your baby, for me i just made my self cope with the fact that she needed to be there to be healthy and out of any danger, and istarted taking care of myself to make sure that by the time she was home i was ready for her. It took me almost a year to heal emotionally, and i often found myself reading many of the stories in this forum and just crying for almost an hour. It's a tough process and not many people understand the psychological damage this disesase causes. I hope you do well.

Re: Recently survived HELLP, baby in NICU

Post by catherine » Sun Dec 05, 2010 08:42 am

Welcome to the forums, and congratulations of the safe arrival of your little boy.

I thought that I'd give you a little "tour" of what we have here so that as things progress you'll know who to talk to, * so to type :) *. We have a "preemies forum" where you'll find lots of folk who are very expert in what it takes to handle the NICU experience, both practially and emotionally. It's challenging to deal with the separation, with the nurses/doctors and hospital routine, physical demands etc. We also have an "ask the experienced" forum where you should feel free to post about every little question that comes into your head, did my XXXX, cause YYYYY, because we know that these are the thoughts that float into your head whenever you have a quiet moment. That experience also covers handling questions from people at work/at church/in the grocery stores that you may find offensive/triggering/infuriating... When my daughter was born because HELLP struck me out of the blue, I became the topic of choice for all the local playground groups, not because I was a member, simply because my friends were members and they couldn't help but talk about my experience... so became that "woman who nearly died having a baby" and I found that challenging enough! We have a forum for HELLP syndrome survivors, like ourselves, who sometimes have residual liver/kidney issues that need monitoring or addressing. These women also are pretty familiar with that sense of losing your confidence in overall physical health that can make you feel like you are losing all perspective as you wonder if the mildest symptom of headache or nausea is evidence of something very bad happening to you (because last time that happened,.. it was). We have a forum for moms who have tragically had to come through this experience without their child or children, and we also have a forum for women who are thinking about/planning to try for another baby even if that doesn't seem to be particularly significant to you right now. We have a forum for women who are pregnant again after experiencing preeclampsia and/or HELLP and doing great/struggling/worrying.

Basically, we're all in this together, all over the world. So we have posters from the UK, Australia and even further afield (depending on your geography), I don't mean to be US-centric! This means that there can be people logged on and posting 24/7/365 (despite our recent disruptions to achieve our upgrade). So, as the daze begins to wear off, don't hesitate to ask or share.. it's what we're here for.

Re: Recently survived HELLP, baby in NICU

Post by l412angel » Fri Dec 03, 2010 04:20 am

Im so happy your baby is doing well. I am however sad you had to experience HELLP, but am glad your doing well. This web forum is fabulous, and any questions you have feel free to ask!

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