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Gabe's Story: HELLP at 23w2d

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Re: Gabe's Story: HELLP at 23w2d

Post by flori » Sat Sep 01, 2012 05:09 am

What a precious picture. I am so sorry that you lost your beautiful boy. I remember how intense and raw my emotions were right after we lost Gracie, it is indeed a rollercoaster. I hope you visit here often to come and vent about things. And don't feel confined to the HELLP forum, this one's a little slower than the rest. You can also message me if you ever want to talk about anything.

I cried when I read your post because it brought back so many memories. I lost my daughter about a year and a half ago due to HELLP. She was our first baby and like you, I am terrified of putting another child through the pain that Gracie went through. I also feel a lot of guilt about how my work might have contributed to everything- the early part of my pregnancy was during the Christmas season, when it is the most stressful in retail. I know that stress isn't supposed to play a part, but just to be safe, my husband and I will wait until the holidays are over to try again. I think there are many of us that want to do everything the completely opposite way that we did it the first time and hope for a different result.

In the beginning it was hard to keep from placing all of the blame and guilt on myself. I would lie awake and think about how I should have done things differently, how if I had made one different decision Gracie would still be here. Try to take it easy on yourself the next few weeks/months/years. You did the best you could to be a good mother to Gabriel and he knows it.

About work, I am all for taking as much time as you need. I was off for four months and transferred to a different store out of state. It was hard to see baby girls and pregnant bellies at first, but it helped me heal. I hope whatever you decide to do helps you find the same peace.

Re: Gabe's Story: HELLP at 23w2d

Post by mommyg » Sun Aug 26, 2012 07:48 am

Thank you all for your sweet and supportive replies. Knowing that stress didn't cause my HELLP does put my mind at ease, although it would be nice to have something to blame for what happened...and to be able to "fix" that something so I know it won't happen again. Unfortunately, I know it's not that easy. I am going to see a perinatologist this Wednesday. I have a list of 20+ questions already, thanks in part to other posts I've found on the forum. I'm trying to stay positive!

cgoodi, I am sure your baby is watching over you from heaven and is so proud of you. I admire your courage, too. It's good to see that someone with a story similar to mine has a "hopeful" prognosis for future pregnancies. I wish you all the best and would love to hear how your journey goes. How did it go when you went back to work? I had a really hard time deciding whether I wanted to go back at all. I still don't know if I want to keep teaching long term - it is so demanding, physically and mentally. I was gone at the end of the school year and I have almost all new students this year, which is definitely a good thing. Although my job is still stressful, I'm finding that most of the time I'm too busy to think about anything other than school when I'm there. I like the idea of waiting until the summer to try again, but in my case, I'm not sure if I want to wait that long if we go that route...that's one of my questions for Wednesday. I'll also have to make sure they take a look at the placental autopsy.

kerisue, I am so sorry that you lost your precious Millie and that you, like me, had to make the decision to let your baby go. I, too, am at peace with the decision I made. I feel like there was so little I could do for him when he was here, but that decision to be merciful at the end was the one time when I could speak up for him, like a mom is supposed to do. I know I am blessed to have gotten those 5 weeks, and for the memories I will always have of Gabriel. You're right, though: it is hard for me to be thankful sometimes because I miss him so terribly. I just got a snapshot of what kind of person he was going to be, of what it would be like to be his mommy, and then he was gone. The NICU was such a strange place, definitely like a fishbowl, but I do feel that all of the staff there did everything they could to make him comfortable and to try to save him.

Caryn, thank you for your succinct explanation. I am still trying to wrap my brain around all of the medical lingo. I wish I would have read your summary a long time ago. It'll help me know how to explain HELLP when people ask.

Nanay, I'm sorry you lost Angel. It would be so difficult to have a child and experience a loss. You have to deal with your own grief, but also the grief of your oldest child. Yours loss is so recent, too. It took me a while before I adjusted to the realization that Gabriel wasn't in my belly any more. Even now, I think,"He should still be in there." His due date was September 1. Feel free to "rant" to me anytime!
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Re: Gabe's Story: HELLP at 23w2d

Post by Nanay11 » Fri Aug 24, 2012 04:28 am

Your experience is so similar to mine. Funny I'm also 30 years old well will be 30 in October. Husband's name is also joe. My DH and I are very blessed that we already have a 3 1/2year old but the pain of loosing our second son (we named him Angel) is so great that I too sometimes have to find the strength to keep going. If it wasn't for my DH and my oldest I would probably just go crazy and depressed.

A lot of your symptoms and the pain your describing was exactly the same thing I went through. I too would endure the excruciating pain if that means we would have Angel with us. I gave birth to him at 22 1/2 weeks but so unfortunate that he was sleeping when he was born.

I had Pre e when I went into labor with our oldest just two days from my due date. I know having Pre e with my first played a roll with the Pre e / HELLP that I had with our second. Today I was given a referral to speak to the dr who treated me with our second son but I don't know if speaking with him will help. My OB suggested not to ttc again because she is afraid the same thing or worse would happen. She has never seen my kind of case but the other dr who treated has. He said he sees my kind of case maybe once a year of that. Doesn't give me much hope that I'll be able to carry to term the third pregnancy and I am also affraid that the same thing will happen or worse loose my life in the process. I don't want to leave my oldest without his mommy as he is very much attached to me. DH think we should try in about a year and try to beat the odds. He doesn't think speaking to the specialist about or chances should be our deciding factor. I feel the same way as you terrified to try. However reading some of the success story here does give me some hope that maybe God will grant us another baby to care for love hug kiss and cherish.

Please keep us posted if you end up trying again. I know it'll be a long road for me as I need to loose weight and hopefully get my BP regulated so I won't have the other factor of having hypertension while not pregnant.

Thank you ladies for letting me rant/vent. It's only been about two weeks since we lost angel but I can't stop thinking about him. I miss my pregnancy belly I miss feeling his kicks. Even worse my oldest want his baby brother to come home.

Re: Gabe's Story: HELLP at 23w2d

Post by caryn » Wed Aug 15, 2012 02:46 am

I'm so sorry that you lost Gabe to this brutal disease.

Kerisue is right - stress is absolutely not implicated in this condition. Our best evidence to date suggests a primary immune conflict between mother and fetus over the size of the fetus at delivery. If the placenta is expressing genes that mean it will implant deeply, draw down lots of resources, and grow a baby too big to fit out, the maternal immune system responds by restricting depth of implantation - which leads to hypoxia - which leads to the production of proteins that cause the symptoms. (But this is very difficult to research and is a complex and involved mechanism.) At the moment what we want to find the most is a therapy that will allow delay of delivery for 48 hours, or long enough for steroids to take effect on fetal lung development.

Deciding whether or not to try again is also fraught with concerns over the implications for another baby and for yourself - please feel comfortable using these forums as a sounding board, as a place to find any information you need, as a place to grieve. Everyone here has been impacted by this condition and sharing our stories can help so much.

Re: Gabe's Story: HELLP at 23w2d

Post by kerisue » Tue Aug 14, 2012 11:01 am

Gabe's mom, I'm so, so sorry that Gabe had to be born so early. I lost my little one due to preeclampsia. I agree with you that it's the most devastating thing for a mom to go through. I had to go through a lot of what you did- a whirlwind hospital admission (1minute telling me I could still make it to 28 weeks, the next hour telling me I would be forced to deliver that day); sitting anxiously beside the isolette watching her vitals, watching her breathe, dreaming of when I could hold her; sitting through a surgery (2 actually); and finally having to make that excruciating decision to let her go. I feel at peace with my decision- I know I gave Millie her best chance at life and helped her fight a good fight, but I also know that it was merciful to stop the fight and let her go when I did, even though that was the most devastating gut-wrenching decision ever. I hope you feel right about your decisions too. I am amazed that a 10 oz. 23 weeker made it 5 weeks. It's obvious he was a strong boy and a fighter and that he wanted to stay with you very, very much. It's so hard to be thankful for the time we were given to get to know our babies when the pain of their loss is so great.

You are on a very tough road right now and it's going to be a long rocky one- I think the loss of a baby is a lifetime pain. Though it does get less intense as time goes on, I don't see it every going away. I'm so glad you and Joe have each other. I found a lot of support here and also in a local group of other parents who had lost infants. As far as another pregnancy is concerned you are right to consult with a perinatologist when the time comes. Many women who have had HELLP go on to have successful subsequent pregnancies and I sincerely hope that is the case for you. As for the stress issue- I too have a stressful job and I know that it affected my blood pressure because I tested it at work. I also believe that too much stress is not good for anyone- pregnant or not. However, take a look at the research section here on the forum. Caryn recently posted about a pretty good (i.e. scientifically sound) study that showed no connection between stress and preeclampsia/hellp. Please don't beat yourself up for working during your pregnancy, this disease is very complex and nothing you did or didn't do contributed to what happened.

I wish that I could give you a hug and that we could talk about our little ones' time in the NICU. If you have any pics of baby Gabriel we'd love to see them.

Re: Gabe's Story: HELLP at 23w2d

Post by cgoodi1 » Tue Aug 14, 2012 10:24 am

Wow! So many parts of your story sounds so similar to mine. I too am a high school teacher and was under tremendous stress at work at the time of my pregnancy. As well, my wedding which had happened a month before the pregnancy had created some family arguments on my husbands side which lasted until I was about 4 months pregnant. I too often wondered if the amount of stress I was under played a role. So many questions have gone through my mind, but I find comfort knowing that my baby is watching over me from heaven. I pray to God frequently that our next pregnancy results in a take home baby for my husband and myself. I decided to get pregnant in the summer so most of the first trimester will be stress free. I've basically been relaxing the whole time. Don't rule out having a baby yet! We have to try to beat this thing and not let it get the better of us! Talk to the perinatologist/MFM. They will do tests to make sure you don't have clotting disorders or anything else. I have been through extensive testing and my two new doctors are very hopeful. They are watching me very closely and will put me on low dose heparin injections as well as low dose aspirin as preventative measures since there was calcification shown on the placental autopsy which can happen due to the HELLP and preeclampsia. Just know that if you ever need to talk there are so many people here for you on the forum. It has been a great comfort to me. Please do not hesitate to send me a message!

Gabe's Story: HELLP at 23w2d

Post by mommyg » Tue Aug 14, 2012 09:37 am

This is the story of the sweetest little baby boy, the light of my life, and how HELLP stole him away.

We found out I was expecting in January. When I told my husband Joe, he warned me not to get too excited because a lot of things can go wrong early on, but we were both thrilled to finally be starting this new chapter in our lives. When I went to the OB for the first time, they did an ultrasound. At only 10 weeks old, our little baby was moving like crazy in there, growing away. My due date was set for September 1. Our excitement grew as the weeks passed. I felt great during the first trimester – no morning sickness at all, just more tired than normal, but I was dealing with a lot of stress at my job as a high school teacher.

Then, at 20 weeks we went out for dinner to celebrate the end of tax season (Joe is an accountant) and I got very sick that night. I thought it was food poisoning, took the next day off, and told my OB at my 20 week appointment later that week. She wasn’t concerned. My first blood pressure reading at that appointment was high, but it was also an exciting day because Joe was there to see the baby for the first time, plus the reading was taken right after we walked in from the parking lot. When the nurse re-took it again later it was fine. I was also concerned that my tummy wasn’t very big compared to a colleague at work who was due a couple weeks before me. The OB measured me, though, and said I was on track. The ultrasound showed that the baby was a bit small and that there was possibly some abnormality with the brain – enlarged ventricles – so I had to go see a specialist for a more detailed ultrasound. We were terrified that there might be something wrong with the baby, but that was only the beginning…

In the meantime, my “food poisoning” symptoms didn’t go away. I felt nauseous on and off for the next few weeks. I also started developing pain in my upper abdomen. It started right under my sternum at first, but later it was concentrated in my right side. The pain was episodic, but it kept getting worse and worse, until the point that I was up 3 or 4 times a night rocking back and forth, crying in pain until the ibuprofen kicked in (that is, if I was able to keep the ibuprofen down and if I hadn’t already exceeded my max dosage for the day). I didn’t know if the pain was causing the nausea or vice versa. I had never had heartburn before, so I didn’t know if that’s what I was experiencing. This being my first pregnancy, I had no idea what was “normal.” Plus, I kept hearing that no pregnancy is “normal.” I didn’t want to be a hypochondriac, but I did finally break down and start making phone calls to the doctor, or actually, her nurse, as my doctor never spoke to me again after I started getting sick.

Somewhere within that time frame, we went to get the more detailed ultrasound. Much to our relief, that doctor said everything looked within the normal range, that the baby’s brain was just fine and there were no defects. He confirmed that the baby was small, but said that I was small too, so it was nothing to be concerned about, that we should just come back for a growth ultrasound in a month. We thought everything was going to be fine. However, the “heartburn” and nausea kept getting worse. After many conversations with my OB’s nurse, they finally had me come in for bloodwork, which showed elevated liver enzymes. I remember being in so much pain on the way to the lab that I literally thought I was going to pass out and get in a car accident. But, like it had in the past, the pain eventually subsided to a bearable level. I was sent to see a gastroenterologist, with the suspicion that I might have gallstones. After an abdominal ultrasound, that was ruled out. The next theories were ulcers or fatty liver. I was getting progressively sicker, and the worst part was that no one knew what was going on. I was starting to think I was crazy – was I just that much of a wimp?? If this pain was necessary to keep my baby healthy, though, I would have gladly dealt with it for the next 4 months. I tried to go to work as much as possible, since I wanted to save up my sick days for maternity leave. I would shut my classroom door and turn off the lights as soon as the kids left because I had to curl up in pain and throw up. When I walked, I was all hunched up because the pain was so intense. The nurse kept telling me to eat and stay hydrated, but, toward the end, I wasn’t able to keep anything down, even Gatorade or toast or my prenatal vitamins.

Like I said, this went on for three weeks, until the pain got so bad that I finally had to give in and let Joe take me to the ER. I have always been a healthy person – good blood pressure, never been to the ER before – so going to the ER was a big deal. They sent me to labor and delivery right away, then back to the ER, then back to L&D, but after a night in the hospital, we still didn’t have any answers, just prescription heartburn medicine and codeine. A young doc in the ER mentioned HELLP that night, but the obstetrician dismissed the diagnosis because I didn’t have high blood pressure or low platelets and because I was only 23 weeks along. The pain in my abdomen was excruciating by this time, and even the prescription pain medicine couldn’t touch it. A day later I had to go back to the ER because I couldn’t stand the pain. This time, my blood pressure was critically high and my platelets were low. I was in so much pain that I vomited in the ER trash can. The new symptoms immediately convinced the doctors it was HELLP. By this point I had done a little reading and I knew HELLP meant delivery and that the baby was probably not “viable.” The whole thing was surreal, though. I was convinced that everything was going to be fine – in this day and age, babies don’t die! I was sure I was going to be fine, too, although the doctors and nurses around me seemed very nervous. I had never seen things happen so quickly in a hospital. I was rushed back up to L&D and put in a magnesium drip. The OB on call (who is from the same practice as my doctor) said she had never seen a case of HELLP this early before in her 30 years of practicing – I was 23weeks, 2 days.

The next day or so is pretty foggy. I had to be moved to the other hospital in town because it had a level 3 NICU. We asked about being med-flighted to a university hospital to try and secure the best care possible for the baby, but were refused because of how early I was in the pregnancy and how sick I was. After a ride in the ambulance, I was prepped for an emergency c-section. Another ultrasound before the surgery predicted that the baby would weigh around 15 ounces. He ended up being just 10; most likely he had stopped growing much earlier, at around 20 weeks or before. I don’t remember much about the surgery, other than the incredible pain from the catheter they inserted beforehand that was too big, the assistants in surgery counting the surgical instruments, and the doctor performing the surgery commenting that they were waiting for the other doctor to arrive.

When I woke up in the recovery room, I was told we had a baby boy and that he had made it through delivery. In my messed up mind at the time, I remember being scared to see him – I “didn’t want to get too attached” in case he didn’t make it. Luckily, Joe convinced me otherwise; I was already very much attached. I foggily remember my bed being wheeled into the NICU, reaching my hand into his isolette, and his tiny fingers wrapping around mine. That night, my blood pressure was monitored closely, but it quickly went back into the normal range. I had a lucid dream that the baby’s name was supposed to be Gabriel for some reason, which was not the name my husband and I had discussed earlier. However, when I told him in the morning, he agreed it was the perfect name for our little boy.

Over the next month, we visited Gabriel as much as we could. The NICU was a completely foreign environment, and Gabe was so critical that all we could really do was reach in and touch him for a few minutes at a time. Every day was an emotional rollercoaster. The doctors and nurses were amazed that he had survived delivery, and even more amazed that he was so strong. We knew his chances were not good, but we prayed and thought positive and spent as much time with him as we could. Eventually, we were able to help with some of his care, changing his diapers, taking his temperature, swabbing his mouth with colostrum or sterile water. Our sweet, precious, beautiful, perfect little fighter stayed with us for an amazing 5 weeks, but in the end, after countless needle pokes, 2 procedures and a surgery, his little body was just too small and on June 11 we had to make the decision to let him go. The only time we got to hold our son was when we were telling him goodbye. This was the hardest moment of our lives, much too hard to put into words. I never imagined I could feel so sad; we left the hospital that evening without our baby.

The weeks since losing him have been extremely difficult. At his funeral service, the pastor assured us that Gabriel is in heaven, and I know in my heart this is true, but I think of Gabe every minute of every day and feel this incredible emptiness inside of me. I can’t believe that the world just keeps going even though he’s gone. I’m still trying to figure out how to live without him. It hurts so much. I may look normal on the outside, but the pain I’m feeling hurts worse than any of the physical pain I experienced. At least I knew that that pain would eventually subside; this pain will last the rest of my life. We have an amazing support system, but none of our family or friends really understand how much this hurts – thank goodness because I wouldn’t wish this on anyone.

To add salt to the wound, I’ve been able to learn a little bit about HELLP, especially the fact that the chances of it, or preeclampsia, happening again in future pregnancies is high. I have always wanted to be a mom and I know my husband would be an amazing father, but I am terrified that we might end up putting another baby through what Gabriel had to endure. Plus, I don’t know if my heart could take being broken all over again. I’m 30 already, so I feel some pressure – a lot of what I’ve been reading says pregnancies after 35 are at higher risk. I can’t imagine our risks being any higher, but I guess that is possible. I know another baby would never take the place of Gabriel, but I don’t want to just give up hope and let this stupid HELLP win. My new OB (the one with 30 years of experience) is willing to help us if we decide to try again, but I know there are no guarantees. She referred me to a perinatologist; we’ll see how things go.

I’m also being haunted by the idea that stress at my job might have hastened the progression of my HELLP. I’m convinced that if he could have had just a few more weeks to grow, Gabriel could have made it. He was so perfect in every way – just too small. I’m wondering how much stress is a factor with HELLP. I’m seriously considering quitting my job, or asking to go part time. I can’t even imagine going back to work right now; it takes everything I have just to crawl out of bed in the morning.

I had never heard of HELLP before this whole ordeal and I am still shocked that in this day and age there is so little known about such a devastating illness. Even when I was in the hospital, I never felt like my life was in danger. Now I know I’m lucky to have survived and incredibly blessed to have gotten 5 weeks with my precious baby, although it wasn’t nearly enough. My heart aches that he is gone.

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