Recently survived HELLP, baby in NICU

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

Recently survived HELLP, baby in NICU

Postby JScruggs19 » Fri Dec 03, 2010 05:03 am

Hey everyone. I gave birth to my first baby last Friday at 31 weeks 6 days. I was diagnosed with HELLP after going to the ER with severe chest pains. I had a vague idea of what pre-eclampsia was before going to the hospital, but did not associate chest pain with it at all and I had never heard of HELLP. Looking back, I feel like I would have been able to process the whole situation much better had someone let me know about the illness. There I was, in the hospital being told that my liver enzymes were elevated and that they were going to have to induce me and I could barely wrap my head around it. Fortunately for this site, I ended up understanding my situation much better after my mother-in-law found this site and was able to ask some questions while I was in the hospital. It was very helpful, and I thank everyone for providing her with information.

Anyways, my baby is doing quite well for a baby born so early. He will be in the NICU for a while, but I am just thankful that he and I both made it out alive. I just still feel like I am in a daze. It happened so fast. There I was having a healthy normal pregnancy, and then BAM- not only am I not pregnant anymore, but my baby isn't home with me. For anyone who has experienced something similar, what were ways that you were able to cope with the whole situation? I am very thankful that my baby and I are both on the road to recovery, but sometimes I still can't help but feel somewhat guilty although I know there was nothing I could do about it.
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Re: Recently survived HELLP, baby in NICU

Postby l412angel » Fri Dec 03, 2010 04:20 pm

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!
Laura Angel (Factor V Leiden)
Mommy to Cara Angel 2LBS 11OZ 16 IN. Born at 30 weeks due to Severe PE & HELLP.
"My life went with you sweetheart the day angels called you home"

Our Rainbow Baby Carter born March 5 2011 7lbs 7oz 20.5in 36 weeks 4days PE FREE

Baby #3 due June 2012
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Re: Recently survived HELLP, baby in NICU

Postby 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.
Mom to Finn, Lucy (HELLP syndrome) and Chloe
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Re: Recently survived HELLP, baby in NICU

Postby preemomof2 » Wed Dec 08, 2010 03:49 pm

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.
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Re: Recently survived HELLP, baby in NICU

Postby jenprzygoda » Wed Dec 08, 2010 06:58 pm

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!
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Re: Recently survived HELLP, baby in NICU

Postby caryn » Fri Dec 10, 2010 09:05 pm

I'm just checking on you and your baby -- please keep us posted as you're able!
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
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Re: Recently survived HELLP, baby in NICU

Postby 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!
Julie
Class I HELLP in 2004, Kelly Ann born 10/19/2004, 2lbs, 1oz, at 27 weeks.
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Re: Recently survived HELLP, baby in NICU

Postby kristal1213 » Tue Dec 28, 2010 05:38 pm

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.
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Re: Recently survived HELLP, baby in NICU

Postby JScruggs19 » Thu Jan 13, 2011 05:14 pm

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.
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Re: Recently survived HELLP, baby in NICU

Postby blythe » Thu Jan 13, 2011 06:31 pm

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!!
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH
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