“Accept what is, let go of what was, and have faith in what will be….’-unknown

When  having a new baby, I believe every parent has wishes of a smooth and easy 9months. You don’t ever plan on hearing the words “abnormal” come out of the doctors’ mouth. If you’ve ever had a pregnancy go smoothly, then a pregnancy where the unexpected happens, you’re still not ready for “abnormal”. There’s absolutely nothing that can prepare you for the journey called Pregnancy, no matter how many you’ve had, every pregnancy is different. ❤

Since we have previously experienced HELLP Syndrome and Pre-E along with placental insufficiency leading to IUGR with a preemie at 34 weeks, the OB and midwives are being extra cautious with us.This is a double edge sword. I mean we are having numerous tests performed, but with testing come the waiting period and results. I will share our journey so far…

At 12 weeks we had testing done by MFM (Maternal Fetal Medicine) to look for chromosomal abnormalities. This is typically done between 11-13 weeks. They perform an ultrasound, taking measurements of every little part of the baby’s body, and took my blood. We never received a call, so no news is good news right?

At 16 weeks pregnant we had a consult with a new group of OB & midwives we were looking into switching to. Dr. Guy informed us our baby had a 1 in 52 chance of Downs Syndrome. WTF was he talking bout? Nobody from MFM or my old OB had called to talk to me about this. I think my heart stopped. He suggested further testing called the MaterniT21 test which would give us a definitive answer, yes or no, if our baby had DS. He also wanted to test me for Lupus, and run numerous clotting disorder panels. Clotting Disorders have been linked to HELLP Syndrome, although there still is no known cause. He also explained based on the ultrasound he didn’t believe it was DS, but there’s a protein called PAPP-A which typically they use as an indicator of DS, the lower the level the higher chance of DS. A normal value is 1.0, my value was 0.19, no where near where it needs to be. He also explained that this PAPP-A *can* be an indicator of placental insufficiency leading to IUGR. This has not been proven, but they do see a correlation.

I can’t put into words exactly how I felt at that appointment, other than my heart stopping. Randy was with me, and I could see the terror in his eyes. We spent the next 12 days anxiously awaiting the results. We had many conversations about having a child with DS. This isn’t something a parent plans, but it also isn’t the worst thing that can happen. I cried, and I cried a lot. I lost countless hours of sleep. I confided in my doula, looking for support, and she was wonderful. She checked on me everyday, and kept me in her daily prayers.

At 17 1/2 weeks pregnant, I finally received the call-NEGATIVE!! our baby was negative for chromosomal disorders!And all of my testing for Lupus and Clotting Disorders were also NEGATIVE! I cried tears of joy! What a relief. We saw the midwife a few days after we received our good news, and our routine appointment was wonderful! The testing we had performed also could tell the gender of the baby!! We had asked that they don’t tell us, but rather write it & put in an envelope for us to deliver to a baker to have a gender cake made. We wanted to reveal with friends and family the gender of this blessing!

At 18w pregnant, on July 13th we cut into our wonderful cake surrounded by many family and friends, revealing PINK! It’s a GIRL!! We couldn’t be happier! This will soon make 2 girls for us along with my 2 boys from my previous marriage. 2 of each gender, and it’s perfect! Randy said he knew all along it was a girl, he just had a feeling 🙂

At 20 weeks we saw MFM for the routine Anatomy Ultrasound. This is typically when women find out what they’re having, this is the “BIG” ultrasound, but for us we already knew it was a girl, and knew in our hearts she was perfect. Randy’s sister decided to come with me, Randy thinks Ultrasounds are just creepy, and his sister wanted to go. It is great having the support. The tech handed us wonderful pictures, told us she weighed 13oz and was in the 37th percentile. We never saw the MFM doctor, the tech said all looked good, so I was smiling ear to ear! We never received a phone call, so no news was good news, right?

At 22 weeks we had a routine appointment with the midwives. Each appointment we are trying to see a different provider, because we do not know who will be delivering, it all depends who is on call that day, as we are not planning an induction. This appointment started off with the usual peeing in a cup, weight and blood pressure. Randy came with me to this appointment, I think it’s important for him to meet all of the providers as well. The midwife comes in, introduces herself, pulls up some info on the screen and asks us if we have any questions regarding the “abnormalities” found on our 20 week Ultrasound. Randy and I just looked at each other… nobody had mentioned a single word regarding abnormalities or anything!?! Once again, we had no idea what she was talking about. So here we go again…She explained 2 abnormalities. 1 was with me and 1 was with the baby.

Abnormality #1-with me. So I have an extra placental lobe sometimes referred to as an accessory placenta. She explained to me I need to tell every person at every doctors apt I have along with anyone I see at delivery about this. Basically I have the placenta the baby is currently growing in, AND another placenta with nothing in it. The cord that does from my placenta the baby is in to the baby inserts at the placenta where the other placenta starts, therefore it is feeding the empty placenta. They do not have one known cause for this, but there are some theories. I could have been pregnant with twins at one point and miscarried one early on. This is possible because i was a few months pregnant having what I thought were my periods before I found out. Those periods could have been a miscarriage, there’s no way to know. Another theory is when the placenta implants, it gradually moves, sometimes creating another placenta. No matter the cause, which we will never know, it is important the doctors know this when it comes to delivery because my body must deliver the other placenta, and if I do not deliver it naturally with the placenta, I will need surgery. I really didn’t want to hear this, I don’t want surgery. She gave me the option to have a scheduled c section so they know 100% it is coming out, but I chose not to. I believe in my body. The second issue with this extra placenta having blood flow to it is it *could* starve the baby from nutrition. This often happens with twins, making one twin larger than the other. So I will need followed by MFM for growth with routine Ultrasounds, which the typical woman doesn’t get.

Abnormality #2-the baby’s renal pelvises are dilated to 3mm, they should not be dilated, this means she is holding in urine and the kidneys are not functioning properly. This is a common abnormality found on ultrasound and could mean nothing. We asked what they do for this? what does this mean for her? The midwife explained, they simply watch it through the pregnancy, if it is still present right before birth the baby would need to see a kidney specialist prior to discharge. We left this appointment in disbelief, not one but TWO abnormalities. Just when we thought everything was good, we get more “abnormal” news. Randy said he’s never coming to another appointment with me because all they have is bad news. He said all he wants is to be handed the baby and told she’s perfect, all the other stuff in between is a roller coaster and he’s not enjoying the ride. I completely feel him, I mean this is my baby # 4 and I had never once been told of an abnormality or an increased risk of any kind in any pregnancy.

At 25 weeks pregnant, I had a follow up appointment with MFM, they repeated the Ultrasound looking at the baby’s growth and her kidneys. Randy didn’t want to come, so his sister came with me. This baby is GROWING!! She is up to 1lb 13oz and jumped up to the 49th percentile. I still have the accessory placenta, and it is still being provided nutrients by the vein, but it is not starving the baby, she’s growing wonderfully!! Jumping percentiles is so good! When they looked at her Renal Pelvises, they were unable to be measured,which is GOOD! This means her kidneys are functioning properly and she is not retaining urine in them! They said she’s doing great and we will come back in 6 weeks on October 3rd for another growth ultrasound! We got the sweetest pictures of her, one with her foot clear up to her nose (we actually got to see her suck her toes), and another of her fist in her eye. She is a very active baby girl! I have an appointment in the morning with the midwives before going to work. It is a routine appointment.

I have learned in the past almost 26 weeks that we need to stop holding on to things, and let go. We will never be given more than we can handle. I am not going to worry about tomorrows appointment, or what they “might” say, I’m simply going to  “Accept what is, let go of what was, and have faith in what will be….”-unknown

 

 

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“Healing doesn’t mean the damage never existed. It means the damage no longer controls your life.”-Akshay Dubey

I read that quote, and it immediately touched my heart. I believe it is important to acknowledge that this terrible thing called HELLP did indeed really exist, but I chose not to be a victim, I chose to heal and recover. I’m in a few HELLP Syndrome awareness and survivor groups and I love having ladies who can relate on a different level than the average mother or even person for that matter. I have posted about being pregnant again. Some women say they’re still deciding, some women say their doctors told them not to, but what I see the most is fear of becoming pregnant again. Far worse things have happened to women beyond what I’ve experienced, and I am in no way judging, but it will never get better until YOU decide it doesn’t control you.

Many women are afraid of becoming pregnant again, and so was I. Randy and I had a few conversations about maybe wanting another, or maybe not. We WERE taking precautions, and this current pregnancy post-HELLP was in no way planned.  I have received both negative and positive comments about being pregnant again after what we experienced. I can’t lie, I was absolutely TERRIFIED!! I always enjoyed being pregnant. It was wonderful to feel this little amazing thing growing inside me, knowing I was creating a life. Not this time.  I felt because of HELLP I would never enjoy pregnancy again.

I cried and cried, and cried, then cried more. My OB reassured me I would get through this. I really wasn’t so sure. All I knew was fear and doubt. Then receiving negative comments about being pregnant again, I realized I was allowing my fear control me. As long as I feared it, I wasn’t going to love it.

After seeing my OB, Randy and I decided to start looking for another group to see. I had the same OB for 10years and this was quite difficult. But I was told since I had an emergency c section, I would be “SCHEDULED” for another this time. Ummm, excuse me, but last I checked it was MY body who was having this baby and I’ll be damned if it is going to be scheduled and cut out of me. I have given birth naturally twice, prior to my c section, and my body IS capable of doing it again!! I couldn’t believe the nerve…

I asked around in our area, asked friends, etc. Randy and I decided to see Dr. Guy and his midwives. We scheduled and apt to discuss our fears, concerns, expectations, and wants. Dr. Guy sat with us as long as we needed, answered every single question we had, and explained to us how he felt as an OB with this pregnancy. He is a High Risk OB, but he’s also one of the most hands off and natural friendly physicians in the area. There’s a local birthing center (we had planned a water birth with Laileigh there-didn’t happen, she had her own plans), but Dr. Guy is one of the founders of this. We explained what we wanted. We want the best care possible, but we also want options, we don’t want told what we HAVE to do. He fully agreed with us. We requested to also be followed via Maternal Fetal Medicine (MFM) for growth monitoring, since Laileigh had stopped growing, but we didn’t know until she was born. I was sold, I wanted this practice. I’m a candidate for a VBAC (vaginal birth after c section), and he supports this along with all the midwives in the practice. I can labor and deliver in the water, with continuous fetal monitoring. No other group in the area supports this, they want to simply schedule another c section. We agree if things turn bad (and we are aware this *could* happen) then that’s when a c section would be performed, when/if it is really needed.

I also decided I wanted a doula. I wanted a doula with Laileigh, but yeah she had her own plans. I wanted one with Laileigh because she was Randy’s first child and he had no idea what really happens during child birth. I felt we could both benefit from one. Since we didn’t get to the point of needing a doula, I decided to look early this time. I decided this time around a doula would be essential to making this natural birth happen. I need support because I’m terrified, and Randy still doesn’t know what really happens with birth because his experience was a traumatic emergency c section.  I had a mother of 6, who is a doula currently obtaining her certification,  out me me. My story and experienced had touched her. I had no idea she was a doula. We talked, and I fell in love. She shared something with me. She had experienced a c-section, she went on to have VBAC, and she also experienced complications with a  birth. When she fell pregnant following her complicated birth, she had the same feelings of fear I had. She UNDERSTOOD me, it’s almost like we were meant to cross each others path…She also switched OB’s to Dr. Guy, and she went from feeling the most fearful she had ever been pregnant to experiencing the BEST birth she had ever had. I asked her what she feels helped her, and she told me I can’t be afraid because the fear will rob me of what I need to embrace and love. I can’t love this experience if I’m afraid of it. She explained she simply let go, she turned to her faith, and learned to love more than anything. Fear no longer controlled her, she was in control…

She offered to be our doula, and I gladly accepted. This lady had taught me so much in our conversation. If she could teach me this in the matter of an hour of chatting, I decided I want her, I actually need her. I had let HELLP control my mind, and myself. I’m taking back the control, I am in control. I love this pregnancy and this WILL be the best pregnancy I have experienced yet.

I may cry, I may have my moments of doubt, and I may have moments of fear. I’m only human. I told her I may panic, become afraid again, and may blow up her phone, and I apologized. She said that’s what she is here for, and she will always be here, and she will support me when it is time to welcome this little girl into this world. I hugged her, and cried a little..well a lot.

I have since had my ups and down the past few months. We have had test results come back requiring more test to confirm or dismiss things, We have had scares, and by scares I mean appointments where I think Randy and I aged 10years while sitting there…I’ve cried, I’ve pretended I’m okay, but really I wasn’t, I was panicking inside, having doubts. I would then go to my doula and let it all out, and she has a way of bringing me out of my fears, bringing me back to having faith and believing in myself and my body.  Every little thing I was fearing disappeared. She was my rock during the difficult times. Waiting on results of tests, I obsess, I wonder what if, I doubt my ability to do this, and when I allow myself to think like this, I allow HELLP and the damage it has caused to control me. I refuse to be a victim.

I am healing, I am no longer afraid.

 

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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.