8/31/11-Laileigh Maya Gaines- our HELLP Story

August 30, 2011 was like every typical day… I got up and headed to work as usual. I’m a nurse. Through out the day I remember telling my coworkers “she will not get out of my ribs” and kept putting my right hand on my RUQ. I’d even say to the baby “OK child, these are MY ribs and you can get out of them now”. The office had Qdoba lunch catered in, and after eating I chewed on tums because I had “heartburn”, which I had been having for about a month now, but was re-assured by my OB this was “heartburn” and normal in pregnancy. Little did I know this was the beginning of something not so normal….

After driving about an hour home from work, my RUQ was still bothering me, but it wasn’t actually “pain”. I made my 2 boys Carter (3) and Damon(5) dinner, gave them a bath, and put them to bed. I put on my Pj’s, and sat on the couch, putting the heating pad on my side (not the baby) trying to get comfortable. I had a 34w OB routine apt in the morning, so I just needed to get comfy and sleep through the night. After about 20min, the “discomfort” turned into “pain”. I called my coworker and told her I was going to the hospital, and to tell the boss I may not be in after my check up in the am. I then called my ex-husband (father of my boys) asking him to please leave work and come get me and take me to the local hospital. I was not living with the father of this baby at the time. I ran next door, as nobody was home but myself and the boys, knocked on the door and asked the neighbor to please come sit at my house with my sleeping boys until my father could arrive to sit with them, my ex-husband was on his way to take me to the hospital. As I was waiting for him to get there, the pain intensified. As he pulled up, I was crying telling him “somethings wrong”. He rushed me to the hospital, pulled up, left the car running. I told him to run in and tell them he had somebody 34w pregnant who wants to go to L&D, not the ER. (as a nurse who had worked in a hospital, i knew the ER was not the place to go. ER doctors will run tests, make you sit there, then when they see a problem they will THEN call the OB). As they were wheeling me in to get registered, I began projectile vomiting like the Exorcist. I couldn’t answer the questions such as my name, date of birth, etc due to vomiting, so he answered for me. They immediately took me up to L&D, had me change into a gown and the rest is a blur…

I remember the nurse checking my BP and I kept putting the pillow over my face saying I had a “killer headache” and needed the lights off. The nurse said no. So I kept putting the pillow over my eyes, as she kept taking it off. So fine, I just pulled up the gown, exposed all and covered my head. On the other arm, somebody was poking me drawing blood and starting an IV, while another nurse was putting in a catheter. The OB came in (not my OB-this was a local hospital, not where my OB was and not where I was planning to deliver). He saw the bag of urine which was blood, and the nurse was rattling off my BP’s telling him the mag was getting started. The OB told me he was going to check my cervix to see if it was open and dilated, and wanted to check to see if there was any amniotic fluid present. He asked me my level of pain as he was doing this and I couldn’t answer, I just kept crying. As he touched my RUQ with his hand, I kicked him, and I mean I kicked him as I yelled.

I have no idea how much time actually passed, but I do know the nurse came running in saying “Doctor…” and it got quiet. The doctor then came to my side and told me I was in organ failure, I had stroke level BP, my body was shutting down, I was going to be flown to a larger hospital with a NICU and PICU and would be delivering my baby very shortly…..

The next thing I remember, I asked for my phone and I text her dad “Meet me at MVH, we are having a baby, I am on my way now via careflight”. I then remember a face, and a lady in a jump suit saying “My name is Amy, and I will be your flight nurse”. After that, I don’t remember much besides bits and pieces.

I remember arriving at the next hospital, and my boyfriend (little girl’s dad) was there anxiously waiting. I remember his face, and him kissing my face. I remember the lights on the ceiling as they wheeled me into a room, not sure where this room was, but there were a lot of nurses and doctors around me. I remember asking for something to puke in, as the vomiting was starting again. I remember the doctors telling me they needed to run my platelets and liver tests one last time and depending on the results would depend on when/how i delivered. Vaginal delivery wasn’t an option due to my rapidly deteriorating health, my body couldn’t hold up to labor. So there were 3 options: 1- best option, stabilize me, give steroid shots, deliver via c section w spinal in 48-72 hours; 2-stabilize me, give steroid shots, deliver via c section in about 12-24hrs, 3-worst option, give steroid shot, emergency c section under general immediately.

The doctor and 4th year resident came in and it suddenly was a panic, I needed an emergency c- section immediately. I cried telling them NO they can’t not deliver, she isn’t term, I’m vomiting and going to choke and die on my vomit when they intubate me, and this can’t be happening, this isn’t real. The resident assured me, this HAD to be done, my platelets dropped from 60k to 6k in less than 45min, and my liver was about to rupture. They gave me a steroid shot as they took me into the OR. I remember them running, literally running my bed to the OR. I remember Randy by my side, and them stopping at the double doors, telling him to tell me goodbye, he could not go with me. I remember being placed on the table, crying, puking, and thinking to myself-my little boys are at home in bed, and I didn’t get to kiss them goodbye, I left in a hurry…..

At 256am on August 31, 2011 weighing 3lbs 15oz and 17in long, breathing on her own our daughter Laileigh Maya Gaines was born perfect. Tiny, but perfect. Randy got to see her for a few minutes and take her first photo, then she was taken away to NICU.

I’m not really sure what all happened next. I was on magnesium sulfate, and multiple pain meds, and I didn’t wake up immediately. My first memory after this is waking up in a hospital bed, no idea where I am, looking at all the tubes and machines around me and hooked up to me. I remember Randy being on my left side, and he kissed me. I remember being in A LOT of pain and touching my stomach, to find there was no pregnant stomach. I remember asking what happened and where’s my baby? Randy showed me a photo on his phone and said she’s fine and in NICU. I remember his friend kinda by the foot of my bed at the table half asleep, because he arrived with Randy when we arrived and hadn’t left. I remember seeing my mother, I really saw her, don’t think I was seeing things. I saw another one of our friends there, along with Randy’s 2 sisters, and his niece and nephew. It was like everyone was just standing there looking at me. Randy handed me my pain button, I pushed it and I was soon out.

I have no idea when I woke up. No idea what day it even was. But Randy was still there at my side.I wanted to see my baby. Not in a picture, but i wanted to see her, to touch her. The nurse came in and her and Randy got me in a wheelchair and said I could have a very quick trip to her room for a picture with her then I had to return to my room, as my health was very very poor and I was too unstable to remain there with her.

I will never forget the moment I was wheeled into her room..Seeing this tiny naked baby, hooked up to things, in an incubator just laying there…THAT WAS MY BABY, she should still be inside me!! I cried and I cried, she didn’t do anything, she didn’t deserve to be here early, hooked up to these things, laying there away from me. Seeing her there, so innocent…

The nurse got her out, and placed her in my arms. She was so TINY… I was used to 7lb term babies, not a preemie. I just looked at her, and kissed her, and never wanted to put her down. I was able to hold her for literally a minute or two for 2 photos. She then had to go back in the incubator, and I had to go back to my room in PICU.

The OB came in and explained to me my organs were still in very poor shape, I was still on the magnesium due to my BP being extremly high, and that I had HELLP. The only explanation at the time that I received was that my body was shutting down, my liver was about to explode, and we had under a few hours to live, they HAD to take her out to save both of us. I still had no idea what the hell he was talking about.

I had several nurses, student nurses, doctors, student doctors, around the clock in my room. Everyone wanted to be a part of this rare case. Nurses were always saying how we were a miracle. My vision turned to double vision, and Randy kept googling and found double vision a sign of magnesium toxicity. So he actually asked the nurses to check my mag level. They listened, and I was magnesium toxic, so I needed a calcium infusion to counteract the magnesium. I also needed iron infusions because my iron was so low. I couldn’t get out of bed alone. Everytime I wanted to sit up I had to get a nurse. They had to check my BP. I kept failing my BP checks, so I would have to lay on my left side, and relax as they administered BP meds via IV push. Randy would crawl into bed and just hold me, this always lowered my BP. Once I could pass BP checks, laying, sitting and standing, I was able to walk to the bathroom with assistance, and I was FINALLY going to be able to visit the NICU to take part in a feeding and diaper change!!!!! Randy was my advocate, telling the nurses i wanted to Breastfeed my baby, and the nurses provided me with a pump and helped me pump every 2-3hours. Any milk was a success!

Her first feed they let me feed her my milk it was through a bottle. She had to be held a certain way, in a certain position, and also had a feeding tube in her mouth down her throat. Whatever she didn’t finish in her bottle had to go down her tube…this made me very very sad. She didn’t NEED that tube. Her first diaper change was the oddest thing to do. Randy stood on one side of the incubator as I stood on the other. We both opened the doors, and changed one side of her at a time. She had pooped, and we just laughed, and cried, happy tears.. we made it, we had our baby. We had no idea what we still had ahead of us, but we had our baby….and she could poop!

I was able to hold her for about 30min with a feed, and she had to go back in the incubator, and Ihad to go back to my room. Once back in my room, the doctors and nurses had informed me I needed a blood transfusion-I refused. I didn’t want a transfusion, wasn’t happening. I still felt like crap, I slept a lot, I was able to see my baby 1-2x a day. I had gotten up to go pee, and when trying to get up off the toilet, I was unable to actually get up. I had to strength. I had to call for the nurse. Once they got me back in bed, they still kept mentioning I needed tansfused. They explained it as my heart was beating super fast to pump all of the blood my body didn’t have, around my body, and if this kept up my heart would soon fail on top on the high BP. So with the advice and many conversations, I accepted and said i’ll take it.

I still have no idea what day it is. I do know the Benadryl the nurse gave me in my IV made me sleepy, and Randy held my hand as they transfused me. I woke up shortly after the 3 untits were done, and OMG I felt AMAZING! I asked to acutally walk to NICU! That blood surely made me feel better! I’m forever grateful for the donor!

Over the next few days, if I passed my BP checks, I was able to be wheeled to NICU to take the milk I had pumped to NICU and see my baby. I loved being a part of her feedings and diaper changes. Her bili level had gone up, and she needed to be on bili lights and the bili blanket, and she could only be taken out to bottle feed then had to be placed back in the incubator. I wanted nothing more than to just sit and hold her…never let her go.

She was still nameless. She was just baby girl. Vital Statistics kept getting on us that she needed to be named before I could be discharged. Our baby picked her own name. She came too early, and we didn’t have a name picked out. Randy would visit her often, more than me, and place his hands on her, and say “do you want your name to be…..” and he’d say a name we had in mind. She moved and made little sounds to Laileigh and Maya. So she picked her name, and became Laileigh Maya Gaines.

I was discharged on day 9, I think I was in there 9 days, it was a blur. But i will never forget being wheeled out of my room with nothing more than my bag of clothes and gifts from friends, baby gifts, and a balloon saying “ITS A GIRL”, I didn’t have my baby. I was leaving without her. I had previously had 2 children, and their supposed to be on my lap in the carseat. I saw other mothers with their babies, even had another mother and baby in the elevator with me. I cried and cried leaving, I was leaving my baby…. I didn’t want to go.

Randy took me over an hour away to my house, and I stayed one night at home. I explained what had happened to the boys, and that I needed to go be with the baby. The next day I packed a bag and caught a ride with a friend to the hospital to meet Randy. We shared a feed, then he had to go to work. I spent 16hrs a day sitting in the NICU holding Laileigh. Randy would come ofter work, and be with us, share a feed & diaper change, then just sit and hold her. I left the NICU with Randy. I would be staying at his house, my house, my boys, and my family were over an hour away. It made me feel safe having somebody who never left my side. Literally he never left the hospital, he stayed with us. I kept telling myself Laileigh was in good hands, and i was only a few minutes away.

They told us she would be there for a minimum of 6wks, until her due date when she would be considered “term”. Randy and I would get up every morning, and call the nicu to check on her. We’d shower and get dressed, and head to the NICU. He would stay and hold her, we would share the feeding and diaper change, then he would leave for work. I would once again sit in the chair and just hold her against my skin. I never wanted to put her down. I would put her down and let the nurses and doctors do their assessments, and I would walk and get food, and stretch. It was the lonliest feeling in the world.

Laileigh did EXCELLENT! She was considered a “feeder & grower” meaning she was basically in the nicu just to learn to eat and to grow. I will never forget when they let me nurse her for the 1st time. They warned me she has been used to bottles, and may not latch.But I put her to breast, and she latched and went to town!! Most wonderful feeling ever-i was feeding my baby, not with a pump but my baby!! The nurses would let me nurse her and they took out her tube. I had to track how many minutes she nursed on each side, and she only got a bottle at night when I wasn’t there.

After 2 weeks we were able to bring Laileigh home. We had to attend classes in the NICU on having a preemie. They taught us things such as not rubbing or stroking the head or skin due to the underdeveloped nervous system, but rather to apply pressure to the baby’s back or butt to make them still feel like they’re in the womb, because technically she shouldn’t have been in the world yet. We learned preemie cues of distress, which are different than a typical term baby cues. We learned what different positions of her hands meant, such as “this is too much” “I need it to be quiet” etc. We also learned that you could startle a preemie to death by loud noises. We learned we both had no idea what we were doing. I was a 3rd time parent, and this was his first, yet neither of us had ever had a preemie, and this was a first for both of us. But we knew as long as we had each other, anything was possible. We had Laileigh Maya Gaines. Having her saved, both of our lives ❤

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First off, what is HELLP Syndrome?

I had never heard of it either, and I’m a nurse. Upon awaking after my HELLP experience, physicians, nurses, and my boyfriend explained to me just how lucky I am to have survived.

The name HELLP stands for:

  • H- hemolysis ( breakdown of red blood cells)
  • EL- elevated liver enzymes (liver function)
  • LP- low platelets counts (platelets help the blood clot)

What does hearing the word help out of anyone’s mouth make you think of? For me, it means a person is asking you for something, they need assistance. HELLP during pregnancy is similar-mother and baby need assistance IMMEDIATELY.

Here is a great link with information about what HELLP Syndrome, some of which i will share below. http://americanpregnancy.org/pregnancycomplications/hellpsyndrome.html

What is the difference between Full and Partial HELLP?

Exactly as it sounds. Partial HELLP syndrome is characterized by 1-2 features of HELLP (H-EL-LP). Full is classified as all 3 features of HELLP (H-EL-LP)

What are the Severity/Classifications of HELLP?

  • Class I (severe thrombocytopenia): platelets under 50,000/mm3
  • Class II (moderate thrombocytopenia): platelets between 50,000 and 100,000/mm3
  • Class III (AST > 40 IU/L, mild thrombocytopenia): platelets between 100,000 and 150,000/mm3

Is Pre-Eclampsia the same thing as HELLP?

HELLP syndrome is thought to be a variant of preeclampsia, but it may be an entity all on its own. Not everybody who develops HELLP develops Pre-E; and not everybody who develops Pre-E develops HELLP. My OB, midwives, and MFM (Maternal Fetal Medicine) team explained to me that HELLP is completely separate from Pre-E. You may find information which says differently, but I’m sticking with what my healthcare professionals are telling me.

HELLP is often misdiagnosed as Heartburn, gallbladder issues, & reflux. You can have sudden or gradual onset. If you have gradual onset, it gradually clinically presents with protein in the urine, headaches, RUQ discomfort and physcian’s often mistake it for the above indications or Pre-E. When it is sudden, it is more likely to cause more harm to the mother and baby, because there are no signs or symptoms, it just strikes. Things go down hill very rapidly.

Hope this post helped you learn what HELLP is. My actual diagnosis with My HELLP Syndrome was: Sudden Onset, Class 1, Full HELLP Syndrome, complicated by Severe Pre-E and DIC. Please don’t hesitate if you are pregnant and experience any of these symptoms, or if you simply feel “off”. Get checked out! Had I not listened to my intuition, I would not be here today writing this blog.