Hi everyone, my name is Nikki. I have been lurking on here for quite some time but haven’t found the courage to post anything until now. I am a (possible) Pre-Eclampsia and partial HELLP syndrome survivor…if you can call it that. Today would have been my due date - which should have been around the time we were supposed to be able to take our son home from the NICU. Here is our story:
My husband and I decided last summer that we were going to try to start our family. We made a plan for me to stop birth control, give it a couple months to get out of my system, and then start trying in August. I remember having taken several cheap pregnancy tests after the first round of trying and they all came back negative – but still no period. I was convinced that I wasn’t pregnant yet but waited another week to test again; I went out early one morning and bought a more expensive, brand-name pregnancy test. I remember sitting in the bathroom watching the positive pregnancy line show up and thinking that I must be seeing things, I yelled for my husband to come look and he confirmed that he saw the line too! We were completely shocked that we got pregnant right away but so excited and already in-love with our baby and our future as parents.
The pregnancy was pretty uneventful for the most part. I was tired a lot during the first trimester and got sick for maybe a month, but other than that things seemed to be going perfectly. We went in for our 18 week appointment on January 4th, they did the anatomy scan and we found out that we were having a BOY…we had already decided that he would be named Aiden!! He was measuring exactly the size he was supposed to and everything looked great. Little did we know how drastically things could change a month later.
A couple days after my birthday on January 25th, I started getting an intense pain in the middle of torso (right below my rib cage and right above my stomach). I brushed this off as pain associated with my hiatal hernia and G.E.R.D. that I was diagnosed with years prior. I hadn’t experienced pain that sharp or severe with it before but I assumed that it was just because my organs were being pushed up from my expanding uterus. The pain was so severe that night that I couldn’t breathe and I wasn’t comfortable unless I was in the shower or on my knees in bed. I was throwing up everything that I tried to keep down including all of the indigestion/acid reducing meds that I tried to take. My husband got so concerned that he ended up taking me to the emergency room at 1am. This was after the nurse practitioner that called me from my OB’s emergency line told me that “if I went into the hospital with heartburn I would just be waiting a very long time”. We got to the hospital and I was seen right away. They gave me some pain meds, did lab work and did an ultrasound to check out my little man and if they could see anything going on in there. They noticed that my liver was slightly enlarged and that my liver enzymes were elevated but told me to bring it up to my OB at my follow-up appointment two days later. They released me with a diagnosis of a UTI (which I was given antibiotics for but had no symptoms of whatsoever).
When I went into my OB’s office for the follow-up, I mentioned the elevated liver enzymes and he told me that he would look at my records and call me if he thought it was anything to be concerned about; in the meantime he referred me to my gastroenterologist to look into my pain further. I never received a call back from him.
That weekend the pain started up again on Friday night and did not leave until Sunday afternoon. I had made my appointment with the gastroenterologist on the following Tuesday so I decided to wait it out rather than go to the emergency room with no results again.
The following Tuesday I went to my gastroenterologist who said that she did not think the pain was associated with my stomach but more likely with my liver (because the pain was shooting down instead of up). She was the first person to ever mention any pregnancy related liver problems to me. She was also the first person to tell me that my platelet count was low from my hospital records. She asked me to go back to my OB, show them what she told me about and make sure they keep a close eye on me. I never got a chance to follow-up.
That afternoon the pain started again and my concerned parents called my OB’s office who told them to immediately bring me to the area’s best hospital for pregnancy related issues. I was admitted that night and did not leave for two and a half weeks.
During my time at the hospital I went through so many doctors with different opinions that it makes my head spin just thinking back on it. The doctor that I had when I first got there was leaving a couple days later for a medical conference in San Francisco. The doctor covering for her over the weekend barely looked at my case and was ready to discharge me because “everything was looking good” at the time. Come Monday, the last doctor covering for her came in and said that things were steadily declining and they would need to discuss having to deliver early (I was 23 weeks along at this point). Imagine being told one day that you can go home and the next day that you might have to deliver your baby who “is not considered viable at 23 weeks yet”. During this time they did another growth ultrasound on Aiden and discovered that he was now measuring 2 weeks behind in size. They discussed the IUGR issues with me but said that he was not considered at that point yet (but was probably on his way there by the looks of it). They also found that the blood flow in one of my umbilical vessels was lower than the others. During this time they were continually checking my blood pressure and doing urine tests on me (although I did not know the reason for them at the time). My blood pressure was always normal and I was not spilling any protein. My liver enzymes and platelets continued to rollercoaster, one day up…the next day down. There was so much guess work and information being thrown at me and my husband that we didn’t know what to make of it. We were told that I had HELLP Syndrome and that the baby was growth restricted and would not grow any more if I stayed pregnant, then other doctors came in and disagreed. There was still the idea floating around that my pain was associated with the hiatal hernia. The doctor whose care I was under the week before I delivered Aiden had me so upset and stressed out that my husband and I referred to her as “Dr. Doom”, who made me cry every time I had to talk to her. I made the decision that the 1st doctor (who was in San Francisco at the time) should be in charge of my care from out of town. She seemed like she knew what she was talking about and did not try to scare me into delivering. She disagreed that I had HELLP syndrome because I did not have the hemolysis but did say that if my blood pressure started rising and went over 140/90 twice, they would have to immediately deliver. They gave me the steroid shots right away (which helped my platelets rebound) and kept checking Aiden’s heartbeat and my blood pressure. After I was told that my blood pressure couldn’t hit 140/90, I was panicked. I had an anxiety attack anytime a blood pressure cuff came anywhere near me. I would lie in bed, hear the blood pressure monitor be rolled down the hallway to me and be screaming inside. The Friday of the 2nd week I was in the hospital, my blood pressure finally hit 140/90 after continually rising the previous days (and by hit it, I mean that it only hit that, never went above the baseline). The 2nd time it hit 140/90, my husband and I immediately started crying. End game. The thing we were fearing and fighting against the most was about to happen and there was no more fight left in us. To this day I still believe that my blood pressure was completely situational and in no way had to do with PE. I never spilled any protein, was never swollen, no weight gain (in fact, at that point I was still down 8 lbs. from my pre-pregnancy weight). They told me that I was severe pre-eclamptic and that they would have to immediately deliver. Aiden was kicking me this whole time, like he was telling me “I’m still here, don’t give up yet”. I was brought to Labor and Delivery that night and put on the mag-sulfate drip right away.
I delivered Aiden by emergency c-section on February 12th. He was 15 oz. and 10.5 inches long and he came out fighting. I remember being in the operating room with my husband holding my hand and they never even announced that he was out. I was lying there listening to any kind of news because I knew that there was a pretty big chance that he was too small to be successfully intubated. I heard the NICU people in the room say that he pinked up right away and that he was kicking a lot, that’s how I learned that he was born. After a few minutes they came over to my husband and asked if he wanted to see him and his response was “he’s out already?” (I was focusing so hard on hearing anything being said that I didn’t tell him that I knew he was already out). He went over and saw our baby boy for the first time and got to touch him for the last. When he got back over to me he was crying and told me how beautiful he is. Soon after, they wheeled him to me for a minute so that I could see him before they took him to the NICU. He was absolutely the most perfect thing that I had ever laid my eyes on; I could tell right away that he had my hands & feet and my husband’s nose and ears.
I was wheeled back to my room in labor & delivery and laid there while family came in little by little to congratulate me. I remember being so happy and peaceful at the time because I felt like if he made it through delivery, he was going to survive anything. The nurses and doctors kept reassuring me that they had never seen a baby that small with that amount of fight in him; he was our miracle baby and we were going to get to keep him. I sent my visitors to see the baby in the NICU with my husband, planning out the long road and months of NICU visits that were going to be ahead of us. I didn’t see him again until the following day because of the 24 hour Mag-Sulfate drip. They wheeled me down to the NICU and I got to sit with Aiden and watch him kick and move his arms around in the incubator. I was in complete amazement, I couldn’t even speak.
Everything came crashing down on me the Tuesday after I delivered. A resident in the NICU told me that Aiden wasn’t doing well and there wasn’t anything else that they could do for him beyond what they were already trying. I called my husband to leave work because we were told that it would be a good idea to spend as much time with him as possible that day. I sat in my hospital bed crying and waiting for my husband so that we could go say goodbye to our son together. The attending came in (who was the head of the entire NICU department) and told us that he was doing better and then told us that there were things they could do if things went wrong again (that resident from earlier knew to stay away from me from that point on). I went to see Aiden as much as I could while recovering from the surgery and still being weak myself. A very kind nurse one night asked me if I had been allowed to touch him yet and I responded “no”. She shook her head as if to say “that’s ridiculous” and opened up his incubator allowing me to touch his hand, his arm and the side of his face. She told me that no matter what the weird circumstances were around our lives in the NICU, I was still his mom and she was his nurse. While she was his nurse I would be able to touch him when he was stable and change his diapers if needed, it was her job to take care of his health and my job to be his mom. For as long as I live; I will never forget those words and being allowed to touch him for the first (and as it turned out, the last) time.
As much as I wanted to stay positive for our little man, I couldn’t shake away the constant fear that was now a part of my every thought. The Thursday that I was to be released from the hospital, we were told that Aiden had a brain bleed and that it was a Level 4 (the worst level) on one side and a Level 1 on the other. We were told that we had decisions to make and that this could mean that he would be blind, deaf, or have cerebral palsy. My husband and I decided that there was really no decision to make. He was our son and as long as he was willing to keep fighting, we would keep fighting for him. I would not give up on him because of obstacles that were a possibility, not a definite. He stabilized over the next several days and I was out of the hospital (with a severe chest cold that I picked up in the hospital) and still weak from the surgery. I made every effort to go in to see him as much as possible. I made sure to keep my germs as far away as possible from him and the people that cared for him but I could not go a day without seeing my baby.
The night of Tuesday February 22nd, we got a phone call telling us that Aiden’s heart rate had dropped and they were having a hard time trying to bring it back up. They were doing everything they could but felt that we needed to get to the hospital as soon as possible. We dropped everything we were doing (I was pumping at the time) and went to go see our baby boy, the whole time praying that they were able to revive him and everything would be okay by the time we got there. We got to the hospital about 25 minutes later and the doctor was waiting for us in the hallway of the NICU. She told us that they did everything they could do but that he was gone. I collapsed into my husband’s arms sobbing while they led me into the room to see my baby boy. My dad had gotten to the hospital before us and was standing at his bedside crying over his grandson. I was sat down in a rocking chair in the NICU room (with 3 other babies in incubators around me) and given my son, swaddled in a blanket and finally at peace. It was the first time I ever got to hold our sweet beautiful boy, and he was gone. I never got to see him open his eyes or kiss his cheeks…and I never got to say goodbye. This experience was the hardest thing that I have ever gone through and I am haunted by it every day. The pain is still there but it changes with time; sometimes it is a dull ache and sometimes it is a piercing constant reminder of what has been taken from us. My husband and I plan on starting counseling soon so that we can try to navigate our way through this time together. In the meantime I spend most of my time being sad and resentful on the inside. I am still learning how to be this person; the childless mother, who has more regrets than she can count. The “what ifs..?” only seem to accumulate and I’m left with no answers and an empty nursery. My brain realizes that it is not my fault and that I did nothing to bring this on myself but I wish my heart would understand that. I feel betrayed by my own body and lost without our son. Sorry for this ending up being so long but thank you so much for listening to our story.
Nikki (28) & hubby Blaine (40)
Mommy to Aiden Blaine - 15 oz./10.5 in. w/ IUGR
Born 2/12/11 @ 24+1 weeks due to Severe PE & HELLP
Lived 10 days, loved and missed more than words can say