My Daughter & I: Pre-Eclampsia Survivors

Post On Tuesday, July 03, 2012 By Macee

My Daughter & I: Pre-Eclampsia Survivors

 

 

My husband and I were married March 17, 2011 on the beach on Oahu in Hawaii. After coming home a week later, I started feeling different. Another week went by and I noticed other things: eating more, unusually sore breasts, and fatigue. April 2nd was supposed to be THE day, so when nothing happened, I bought a pregnancy test. I took the test and was prepared to patiently wait the three minutes, but it showed up right away....positive! I thought I was reading it wrong so I reread the instructions two more times before silently freaking out in my head. I quickly took the test, with instructions, to my husband and stuck them in his face. I told him to make sure I was reading this right. He looked at the instructions, then the test, then me and a big smile spread across his face! We're going to have a baby! We were ecstatic! I couldn't wait to tell everyone! We got pregnant on our honeymoon in Hawaii!

Fast-forward to May, 9 weeks pregnant, at my first appointment. We got to see our little baby, so tiny, just moving those tiny little arms and legs. Seeing that tiny thing inside me made it feel so much more real. We really were pregnant, I wasn't crazy, and we didn't get a messed up test! I had about 3 1/2 weeks of morning sickness. The day I hit 10 weeks, I finally quit puking. By week 11, I was eating with a voracious appetite again. The fatigue was getting to me though. I think most of the summer I laid around the house because I was so tired and hot (in TX!) all the time.

The pregnancy finally started getting fun in my second trimester. I finally started to look pregnant to me and my husband although no one else could still not really tell. I loved feeling the baby move around. There were days where I would just lay on the couch for an hour at a time, with my hands on my belly, just waiting for that next kick or jab! At each doctor appointment, I got a lecture from my doctor about not gaining enough weight. I was 85 lbs at my first appointment. I have always been small and have never been able to gain weight, no matter what I ate. So he put me on a protein and ice cream diet... seriously! Lots of protein in the morning and throughout the day, then a milkshake before bed.

By my 21 week appointment, I weighed 97 lbs. This was also the BIG appointment; finding out the sex! My husband was pulling for a boy of course... and I said I wanted a boy, but secretly wanted a girl! I got my wish! Although she was sitting breech, doctor said he was 90% sure the baby was a girl! Yay! We already had her name picked out: Leilani Danuelle. Leilani is Hawaiian and means "heavenly flower"... she was conceived in Hawaii, we had to give her a Hawaiian name!

The next week, I started 7-8 hour days attending workshops for my upcoming teaching internship. After the workshops, I had to go work on my classroom. After working on my classroom, I had to go home so I could log on for my evening job as a dispatcher for a local food delivery service. I started feeling terrible. Started out as being EXTRA tired all the time. Then the headaches started back. I had headaches earlier in the pregnancy and my doctor said some women experience more headaches during pregnancy and might return later in the pregnancy. So I dismissed my headaches as stress from everything happening and being pregnant. School started August 22. That first week was rough to say the least. The headaches were getting worse, I was exhausted by the time dismissal came, I felt like I couldn't think straight most of the time, and then the visual disturbances started.

August 29th started another school week and the 25th week of my pregnancy, along with a new blinding headache in which I literally could not see much but bright white spots. However, I saw the same bright spots when my migraines started before I got pregnant. I had not had one migraine throughout the entire pregnancy so I figured it was due time. Then, it happened again on Tuesday. When I got home from school that day, I took my blood pressure. I don't remember the exact numbers but it was 150s/90s. I've had blood pressure issues in the past during times of high stress, so I figured it was that and just rested on the couch for the rest of the evening. The next morning, August 30th, I got up and took my blood pressure again. Oddly enough, my blood pressure was higher. 160s/100s. I had to be at work before my doctor's office opened...it was only the second week of school...in my internship year. I was not about to call in. As I left my house that morning, I had no clue that would be the last time I would see my home, my dog, and my cats for weeks to come.

I taught throughout the morning, not feeling well, and a little nervous. Finally, my conference time arrived and I made the phone call to my doctor. The nurse wanted me to drop everything and go straight to their office. I told her I couldn't do that, I was a teacher at work. She instructed me to go to the school nurse, have her take my blood pressure and call back with the reading. I did as she said; the school nurse took my blood pressure, twice, and then sort of freaked out. Told me to lie down on the couch and to think relaxing thoughts as she ran out of her office. A few minutes later, my boss, the principal, entered the room and sat down beside me. She told me to not worry about my class, they would cover it, to focus on me and my baby. She had me call my husband to come get me and take me straight to my doctor's office; they wouldn't let me drive "in my condition".

We sat about 10 minutes in the waiting room and 45 minutes in a room before I was admitted to labor & delivery. It was a whirlwind and I didn't really understand what was going on. I  had read a small amount on preeclampsia in What to Expect and on BabyCenter, but all of it suggested it should not be of concern because it happens in such a small amount of women, and especially because I had none of the risk factors. All I knew at that point was that preeclampsia was a disorder during pregnancy that makes your blood pressure high and causes protein in your urine. I had no clue how deadly it was, for me and my baby. I had no clue that a premature delivery was the only cure. At worst, I thought I'd be in the hospital a few days then go home for bedrest for a few weeks. I was WAY off.

The rest of that day and night I was on bedrest, but allowed to go to the restroom. They moved me to the perinatal unit the next evening about 9 pm. By midnight, the severe headache and visual disturbances were back. Moved back to labor & delivery, I was put on a fetal monitor and magnesium sulfate. They also gave me a blood pressure medication, but it did nothing for me. By Friday morning, apparently things had gotten worse. After a 24 hr urine collection, I indeed had preeclampsia, but my doctor said it was worse...I had severe preeclampsia and he wanted to do a more in depth ultrasound to check my baby's size. She was estimated to be about one pound and there was a severe shortage of amniotic fluid. Finally, my doctor said it. He told me the worst words I never expected to here. At 25 weeks 5 days, he wanted to deliver my baby that day, preferably in the next couple hours. I burst into tears... not knowing that babies born that early and that small actually had a chance for survival. I thought his words were giving my daughter a death sentence. And then, he said even more terrifying words... he predicted that if I didn't deliver by Sunday, that me and the baby were going to be in very serious danger of not making it. That day, it felt like our entire world shattered. Our visions and dreams of my pregnancy and birth had vanished and were replaced with a horrific nightmare that just wouldn't end... and kept getting worse.

After discussion with my doctor, the neonatalogist, my husband, my mom, and my dad, we decided to transfer over 2 hours away to a bigger, better hospital that was expertly staffed and equipped to handle extreme cases like mine and such a premature baby. So that Friday, September 2nd, after the 2+ hours ride in an ambulance in 100+ degree weather, I was admitted to the new hospital. Their game plan was to keep my daughter in for 2 more weeks....that's what our goal was....just 2 more weeks. I was placed on strict bedrest and started another round of magnesium sulfate, plus medication after medication to try to bring my blood pressure down. They also briefed us on the possible outcomes of such a premature birth, which of course terrified my husband and I even more. Then they moved me to the perinatal unit.

After a day and half of strict bedrest and all the medication they could give me, finally, my blood pressure came down out of stroke/seizure range. They finally let me up to take a shower. Unfortunately, I should not have done that. Within an hour, my blood pressure had shot back up even higher. Lab draw after lab draw after lab draw and finally I was informed that I was being transferred back to labor & delivery and that the plan was to deliver as soon as possible. It was so confusing, I didn't understand what was happening or why it had to be tonight. I felt like I wasn't being told all the information I should be. But my husband said he was completely informed about it all and that I was in and out through the entire situation because of the meds and magnesium sulfate. I do remember being helped to the bathroom to change into a different gown. And I remember being told that in addition to my extreme high blood pressure (220s/120s), my liver enzymes were elevated, the protein in my urine had increased, and my platelets had dropped from last labs drawn. I also remember overhearing the doctors telling my husband that at this point it was so serious that me, the baby, or both could possibly not make it. Then I was rushed off to the operating room. It was only an hour into the day we hit 26 weeks.

I remember being placed on the operating table and I started trembling and couldn't stop. The duramorph spinal was done and within seconds it started taking effect. My husband finally appeared and I was told they were starting. I don't know how long it lasted but it seemed like hours and hours. I have never been so scared... scared for my baby... scared for me... scared for our possible outcomes and our future. Later I was told they had her out within 15 minutes (September 4, 2011 @ 1:53 am) and they held her up for a brief second for Daddy to see then rushed her out. I didn't get to see her... didn't hear a cry. They only thing they told me was that my placenta was very sick and we were lucky it was discovered when it was. Two hours in recovery and we finally got news.... she was ALIVE! They brought her in for me to see... and it was the most overwhelming, heartbreaking sight. My tiny 1 lb 9 oz, 12.25 inch baby girl, perfect in proportion with all ten fingers and toes and beautiful tiny little features inside this huge plastic box with wires and tubes coming out of and off her in all directions with syringes bigger than her arms.

Every mother that gets the "normal" delivery has that moment when immediately after birth they place the baby on her chest, that moment when your baby just takes your breath away and your heart feels like it's going to burst with pride. My moment, although noting like the norm, was amazing; they opened the side of her incubator and lowered the side of my bed and pushed her up close as possible and told me I could touch her. I was terrified...she was SO TINY! I had never seen a baby so tiny. I placed my finger in her miniature hand and she wrapped her hand around my finger and my heart soared!!!! This was MY daughter... just a few hours before she was still inside me kicking and rolling away! This is that moment I will cherish forever.

After those few moments I got to see and touch her, I was moved back to the perinatal unit and placed back on strict bedrest. I didn't get to see her again for about 24 hours. Finally, I was taken down to the NICU to see my precious angel at 4 in the morning on September 5th. It took 3 more days for my preeclampsia to start resolving and was discharged. I was on 2 blood pressure medications for two weeks after and then only one for two more weeks.

I was blessed. Blessed my baby girl was alive. Blessed to be alive myself. Blessed to have such an amazing and supportive husband who never left my side during all the entire situation. But we also faced an enormous endeavor: getting our baby girl healthy enough to go home with us. I was fortunate to have been at a hospital that had private rooms for each baby that allowed the parents to stay during their baby's entire hospital stay. We were again blessed to have had a considerable smooth NICU journey, compared to others I know. Our hardest days were in the beginning when it was touch and go for the first two weeks. The alarms will forever haunt me. She sailed through and impressed all her doctors and nurses. She was born 14 weeks early... a 26 weeker. IUGR. No brain bleeds. On vent for only 6 days. One NEC scare. Hundreds of lab draws and heel sticks. IV's and PICC lines. Feeding tube for 10.5 weeks. Oxygen for eight weeks. The longest and most frustrating was learning to feed from a bottle since breastfeeding was not an option anymore. I pumped for 10 weeks and slowly dried up. That in itself was heartbreaking since I felt like that was the one thing as a mother that i could do to help save her life. However, Kangaroo Care was amazing. I credit a lot of her progress to the fact that I got to hold her for a total of 4-5 hours a day on my chest, skin-to-skin. Finally, after 75 long days, the day came when we finally heard those long sought after, dreamt about words: Take your baby home! Now THAT was the happiest day of my life!!!

Today, my daughter is a healthy, happy 19 lb 10 month old who is only slightly delayed, but catching up quickly! Her only issues are reflux from the long use of a feeding tube and a moderate ASD which will be monitored yearly by her pediatric cardiologist until she is 5 years old. Then, it will be determined whether she needs heart surgery or not.

All in all... I am very thankful and happy with our outcome. It was a truly terrifying experience... one that I never want to go through again. Even though I desperately want to have another baby, to experience a full pregnancy. I feel though, I wasn't properly informed about preeclampsia, the signs and symptoms, and the full scale of the danger. I feel like if I had been, things may have been different. I pray that one day there will be a cure for preeclampsia so that maybe I won't be so scared to try for another baby. Even a test to predict the onset would be amazing so I could receive the care needed to hold off such an early and urgent situation. As it is now, my doctor recommends that I have no more babies. Since the onset was so early in my pregnancy, and rapidly progressed to being deadly within a matter of days, my chances of the same thing happening or worse is very high. To weigh the options of risking my life and my future unborn baby's life just to have another baby, to give my Leilani a sibling... possibly robbing my baby girl of a life with her mommy... it's so daunting and saddening. But it's in my mind daily. I pray everyday for a cure, a prevention, or better earlier detection and treatment options. No woman should ever have to go through what I did... no husband should ever be told that he may have to make that choice between his child's life or his wife's life... no baby should ever have to endure what my baby girl had to endure. I pray that in the near future, there will be a break... there will be a discovery... there will be a chance for me to have a healthy pregnancy without fear of dying or losing my baby from a repeat of preeclampsia.

 

 

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