Friday, May 23, 2008

What is Pre-eclampsia and HELLP Syndrome

What is Preeclampsia?
Preeclampsia is a disorder that occurs only during pregnancy and the postpartum period and affects both the mother and the unborn baby. Affecting at least 5-8% of all pregnancies, it is a rapidly progressive condition characterized by high blood pressure and the presence of protein in the urine. Swelling, sudden weight gain, headaches and changes in vision are important symptoms; however, some women with rapidly advancing disease report few symptoms.
Typically, preeclampsia occurs after 20 weeks gestation (in the late 2nd or 3rd trimesters or middle to late pregnancy), though it can occur earlier. Proper prenatal care is essential to diagnose and manage preeclampsia. Preeclampsia, Pregnancy Induced Hypertension (PIH) and toxemia are closely related conditions.
It can cause your blood pressure to rise and puts you at risk of stroke or impaired kidney function, impaired liver function, blood clotting problems, pulmonary edema (fluid on the lungs), seizures and, in severe forms, maternal and infant death. Because preeclampsia affects the blood flow and placenta, babies can be smaller and are often born prematurely. Ironically, sometimes the babies can be much larger. While maternal death from preeclampsia is rare in the U.S., it is a leading cause of illness and death globally for mothers and infants.
HELLP Syndrome and eclampsia are other manifestations of the same syndrome. It is important to note that research shows that more women die from preeclampsia than eclampsia and one is not necessarily more serious than the other. Globally, preeclampsia and other hypertensive disorders of pregnancy are a leading cause of maternal and infant illness and death. By conservative estimates, these disorders are responsible for 76,000 maternal and 500,000 infant deaths each year.
What is HELLP Syndrome?
HELLP Syndrome occurs in 4 percent to 12 percent of the women who have preeclampsia. It is one of the most severe forms of preeclampsia. HELLP stands for: hemolysis, elevated liver enzymes, and lowered platelets. HELLP
It can be fatal to both the mother and the baby. HELLP Syndrome occurs in tandem with preeclampsia, but because HELLP Syndrome's symptoms may happen before preeclampsia's three findings (high blood pressure, protein in the urine, and swelling), they may be misdiagnosed as symptoms of gastritis, disseminated intravascular coagulation (DIC), acute hepatitis, gall bladder disease, and other conditions. As a result, the mother may not get the right treatment, leaving both mother and baby that much more at risk.
The most common reasons for the mother to die are liver rupture or stroke, (cerebral edema or cerebral hemorrhage). These can be prevented if it's caught in time!
What is the cure?
The only cure is delivery of the baby. When preeclampsia develops, the mother and her baby are monitored carefully. There are medications and treatments that may prolong the pregnancy, which can increase the baby's chances of health and survival. Unfortunately, once the course of preeclampsia has begun, the health of the mother must be constantly weighed against the health of the baby. In some cases, the baby must be delivered immediately, regardless of gestational age, to save the mother's and/or baby's lives. Best Blogger Tips

Monday, May 19, 2008

Sunday, May 18, 2008

A Letter to Family & Friends

Over the last couple of weeks I have gone through one of the hardest times in my life, mentally, physically and mostly emotionally.

There were many times when I wanted to give up. But through everything, I have been completely humbled by the generosity of our family and friends, who sent cards, flowers, care packages, support and understanding and most importantly prayers. Words will never be able to express how sincerely grateful Chris and I are to each and every one of you – we would have never made it through this alone.

A special thanks to:

My boss Jackie, Bridge for Kids staff and kids, and all my co-workers in the District office - thank you for all the cards, letters, prayers, support and care packages, but mostly for understanding and thinking of me during this tough time.

Aunt Angie, Auntie Chris and Grandma Rainbow – for being the “gofers” for anything that I needed while I was in the hospital - pajamas, slippers, robes, a breast pump and preemie clothes for Lily. I thank you.

To Steve - for being a “single dad” to Mason the last month while Billie was at the hospital with me day and night.

To Billie, Steve, My Mom and Chris – who tried to use humor every day just to see me smile, and hopefully to help me forget for a minute about what was happening.

To Billie – for being the best sister ever, coming to visit every day, giving up endless days and nights with Mason and Steve, just to sit in a boring hospital room with me, sometimes when I wasn’t even making any sense. For emotionally supporting my mom, who I know cried almost as much as I did. For helping me with pumping my breast milk when I was on Magnesium Sulfate and didn’t know what was going on. For teaching Chris everything he needed to know to help me pump, and for giving up her first Mother’s Day with Mason to spend it with me in the ICU.

To My Mom – who rushed to my house on April 21st to rush me to ER, and who has been by my side ever since, taking unpaid time off of work just to be there everyday. She spent nights on a mattress, on the floor next to my hospital bed on the nights Chris could not be there. she spent days with me when Chris went back to work and she was always there to hug me, tell me how strong she thought I was and tell me it was okay to cry.

To Chris – I knew when I married him, I got really lucky, but I never knew until all this happened, just how lucky I got. He is my rock, and he never let his Kite fly away, even when I wanted to. He went back and forth between the hospital and the house to make sure the cats were getting fed and things were getting taken care of at the house. He listened to me on the phone as I listed off things I needed from the house and ran up and down the stairs, just to try to pack my bags. He spent endless nights on a cot that was too small for him, his feet hanging over the edge. He got up to help me to the bathroom, when I was finally able to go myself. He listened to me cry myself to sleep almost every night. He got a “crash course” in being a father, tried to learn about preemies, and knows more about breastfeeding, pumping and storing than I do. He helped me pump when I was too drugged to even know what I was doing and cleaned the bottles, labeled them and ran them down to the NICU for Lily. He visited Lily when I couldn’t and told her how much I loved her. And most importantly, he always believed that I could do it.

And finally To My daughter Lily – Who has shown me that the greatest gifts in life come in the smallest packages. Who was with me every step of the way fighting the same battles. Who gave me a reason everyday to hang on a little longer. Who has shown me how deeply I can love. And who is now showing me that she is the strongest little girl I know, fighting everyday in the NICU to be strong enough to come home.

Through everything that I have been through - a blood clot in my arm, Preeclampsia, HELLP syndrome, a seizure during my c-section, two blood transfusions, becoming allergic to heparin, physical therapy, grief counseling and seeing my baby in the NICU hooked up to lots of machines – nothing was as hard as leaving the hospital on Thursday without Lily in my arms.

Thank you to everyone for all that you have done, I will never ever be able to really thank you enough and show you how grateful I am. Please continue to pray for Lily as she fights to get stronger and bigger every day, so she can come home soon.

Shana Best Blogger Tips

Saturday, May 17, 2008

The Story of Miss Lily's Arrival

Friday, April 18th - 27+6 weeks pregnant
going out for Mexican for my 30th Brithday!

It should be noted, before reading this, that up until 1 week before I ended up in the ER, I had a different OBGYN,

I had been complaining to her of pain in my right side for about a month, especially while walking long distances. I had also complained of horrible indigestion (I was taking upwards of 10 tums/day). I was told to try Zantac. And at my last appointment with her, I had gained 7 pounds, of which, I was told I should try to diet and not gain anymore weight and continue to walk.

I didn’t know it at the time, but these were all signs of Pre-celampsia (severe indigestion and weight gain) and HELLP Syndrome (right side pain).

After being told to go on a diet I switched OB’s to the Advanced Healthcare Women’s Care Center in the Aurora Women's Pavilion at West Allis Memorial Hospital. I had not met any of my Doctors yet, when I ended up in ER and was consequently transferred to Labor & Delivery. 
After spending 20 days under their care, I am so glad that I switched Doctors. They are a group of the most caring, respectful and compassionate Doctors and they took excellent care of me, Lily my husband and entire family.
Luckily they reviewed my chart and recognized my symptoms as being Pre-eclampsia and HELLP syndrome. It is because of them that me and Lily are alive....

The story of Lily's arrival...
On April 17th (my 30th birthday) I was awoken to severe pain in my left arm, the pain was so severe that I definitely thought I must have been having a heart attack (because they always say women feel arm pain?). I even thought about writing a letter to Chris, because after waking up and googling my pain, it had to be a heart attack (you know google knows everything!). 

But, the next day it felt a little better, so I assumed it was nothing, and shook it off. The following day the pain was back and my chest was starting to hurt. By Sunday, April 21st, I woke up at 3:00 a.m. with severe pain in my left arm and my heart was racing, it also felt like someone was sitting on my chest. Chris took me to the nearest ER, they did an EKG, chest x-ray and cat scan and didn’t find anything and sent me home, telling me I was having an anxiety attack, I felt really stupid (even though I still felt like something bigger than an anxiety attack was going on).

The day went by, and I got worse and worse, by 2:00 a.m. Monday morning I was lying in our bathroom floor vomiting. At 6:00 a.m. I called West Allis Memorial and talked to a nurse from my new OB's office (I had never even been to the office yet, my appointment with the new group was scheduled for the following week), she told me she didn't think it had anything to do with the pregnancy, but I should come into their ER, because she could tell I was having trouble breathing, I told her I didn’t want to be sent home again.

My mom took me to ER that morning and I spent 8 hours there while they tried to find out what was wrong with me. After doing ultrasounds on both my legs, arms and my gull bladder, they found a blood clot in my left arm and admitted me to the ICU, where I was started on a Heparin drip.

While in the ICU everyone was pretty hush about what was going on with me. The nurse had somewhat confirmed that there was a blood clot in my arm, but was very evasive when we asked questions. That evening my mom left and Chris came right after work and sat with me for a while. A nurse from Labor & Delivery came up and monitored the baby and everything "seemed" fine. I was having a migraine and was having some trouble talking and remembering things. But, thought nothing of it. Chris left that night and I got some good sleep. 

The next morning I woke up feeling better and my mom and Chris came to visit. I sort of felt that I was going to go home that day, possibly on blood thinners. I was not prepared for what happened next.

One of my new OB's came rushing into the room, I distinctly remember her standing at the foot of my bed and putting her hands on the rail, looking at me and saying she was transferring me to Labor & Delivery because after reviewing my chart she was 99% sure I had severe pre-eclampsia, she was ordering a 24-hour urine catch to be sure. The nurses took me down to Labor & Delivery and Chris and I thought they were nuts for thinking I had pre-eclampsia.I even had to look up what pre-eclampsia was in my "What to Expect When Your Expecting" book...pretty sure I didn't have it.

Once we were settled in my new, spacious, nice, labor room (very swanky compared to the ICU room - even a door for some privacy for the bathroom), the Doctor came in and told us that I was lucky to be alive, my liver could have split and Chris could have found me lying on the floor somewhere in our house; I had severe pre-eclampsia. We were told that if we could hold off on this delivery for 48 hours, we would be very lucky. I thought she meant 48 hours from July 12th (my due date), she said no...48 hours from now. It was April 22nd, I wasn't due for another 12 weeks. I was in shock. 

After that things started moving in motion very quickly...but it was sort of a blur. I remember crying, she patted my hand and said, it was okay to cry, this was going to be hard. And she left the room to give us some time. For what, I don't know. I sat there and cried. Chris left the room to make some phone calls. I didn't ask him until months later who he called, his family and his work and he said he was crying. My mom was trying to comfort me, but honestly I was in some sort of devastated shock, almost like this really wasn't happening to me, but yet I knew it was because I was crying. 

I was started Magnesium Sulfate immediately, and put on complete bed rest with a catheter, and started steroid shots.

Me and Chris were scared, shocked, worried and sad. I really felt like I had no control over things anymore (for me that is hard). In one sense, I was relieved that somebody finally believed me about the pain I had been complaining about for weeks and felt like I was finally in good hands and would be taken care of - on the other hand, I had never expected that it would be something like this....something that would also be risking Lily's life and would bring her to us too early. I was not prepared to have my baby early, she was supposed to be coming in July, not April.

I also can not put into words the feeling of being told that you almost died. It's weird. I felt like I was (obviously since it felt like a heart attack), but I guess never actually thought I would die. I was just trying to have a baby - millions of women do it each day and are fine. 

Why did it have to be us that this was happening to?

They ordered a 24-hour urine on me and began drawing my blood every four hours to check platelet counts and liver enzymes. The nurses did hourly checks on me – blood pressure, vitals, reflexes, etc. Lily was on the monitor constantly. They came in and did an ultrasound the next day to make sure that the placenta was not shrinking, and luckily it wasn’t...yet. They thought Lily was measuring about 2 lbs. 12 oz. at that time. 


It was incredibly hard to sleep because of all the checks, but also because of how worried I was and how overwhelmed I was about what they had told us - I had not expected this - ever. Each night I remember feeling very lonely, even though I was constantly surrounded by Chris, my mom, my sister and Lily I don't know why, but I felt really alone. I cried myself to sleep each night and tried not to make many sounds because I didn't want anyone to know. 
That night me and Lily had a long talk and we agreed we were both going to do everything we could to keep her in as long as we could.

After 48 hours I was still hanging on, but barely, I was so glad that we had made it, I felt a sense of relief that we had surpassed the length of time they gave us, it inspired me and I started to make "mini goals" of how long we could last.

After lots of labs, it was determined that I had two blood clotting disorders that were inherited by either my mom or dad - Prothrombin (Factor II) and MTHFR 677.

My platelet count at its lowest was at 100,000 (prior to delivery, afterward it dropped to 30,000). My liver enzymes were higher than normal and my blood pressure was still very high and my urine tested positive for protein. Because of the low platelets and high liver enzymes, I was told I had developed HELLP Syndrome.

Wednesday, Thursday and Friday are kind of a blur to me because of the Magnesium Sulfate. After they found out about my blood clotting disorders and determined that I had HELLP, lots of different Doctors were brought on – a high-risk pregnancy Dr., my OBGYN, a Hematologist (blood Dr.) and a Neo-natologist came and spoke to us about what we could expect with Lily being in the NICU.

On Friday, April 25th, we were still hanging on and had made it through the 48 hours they thought we wouldn’t and we had made it to 29 weeks! But Friday morning I “crashed”, I started to have severe chest pains again and thought I was going to die, I was vomiting a lot and was in and out of it. They rushed me for another CT Scan and did and EKG, my heart was okay and so was my liver. They decided to take me off the Mag. They told me they didn’t want to do and emergency c-section unless there backs were against the wall. They were walking a fine line, trying to give Lily the best chance, without putting my life in danger. They gave me a pain killer and at about 9:00 p.m. that night I started to feel better. They decided that the next time I crashed we would do a c-section. I was hoping that it wouldn't come to that. I was hoping that my labs would give them an indication, I didn't not want the decision about how early Lily would arrive, to be a decision that I would make - I wanted them to make it.

During my hospitalization they did ultrasounds every Tuesday and Friday, to make sure Lily was still doing okay. On day 8 they inserted a Picc line in my arm that dangled over my heart, this allowed them to stop drawing blood from my arms (they had been drawing every four hours), I was running out of good veins to use, they could also use this line for my iv’s.

A good day (they even let me shower after 7 days and I have makeup on!)
My first food in 5 days - best chocolate shake of my life!
Some days were better than others, but me and Lily hung on for 20 days, before the ultrasounds started to show that the pre-eclampsia was starting to restrict cord blood flow and the placenta was shrinking, it would be time to deliver any day.

My set-up in the hospital for 20 days

At about 3:00 am May 10th I started having severe epigastric pain again (severe pain on my right side, worsening HELLP syndrome). By about 9:00 am the doctors decided that today would be the day, there was no reason to wait anymore. Between my pain, abnormal lab values and Lily starting to show growth restrictions on her ultrasounds - it was time.

The doctors stopped my heparin drip in preparation for a standard c-section. We were happy to hear that they would be able to do a spinal and Chris would be able to watch the birth of his first baby girl. They had to also re-start my magnesium sulfate to prevent any seizures from occurring.

At about 2:00 p.m. they took me back and they had Chris get ready to enter the operating room. They decided it would be best to insert an arterial line (catheter in my wrist) to be able to monitor my blood
pressures more closely. Then they would insert an epidural and they would get Chris, for Lily’s much anticipated arrival.

Daddy gets ready to see Lily enter the world!

My mom, my sister and Chris, waited and waited and then the nurse came in to tell them that they were unable to insert the arterial line, but they would proceed with putting in the epidural and be in, in a couple minutes to come and get Chris.

They waited.

They thought they heard a baby crying, but didn’t think it was Lily. At about 3:00 p.m. the nurse came in to tell them that there were some complications, and Lily was born at 2:43 p.m. They were shocked and excited.They said she cried right away which was a great sign and they would need to do the height and weight in the NICU. She had a apgar score of 7 after 1 minute and 9 after 5 minutes...she was doing good!

They were able to see Lily be rushed to the NICU and her proud Daddy was able to follow her and record all of her first moments. They had to wait longer for the report on what had happened to me because they needed to keep me in the operating room.

Things were pretty scary in the operating room. After eight tries to get the arterial line in veins in my arm, they gave up. It was time to put in the epidural. The doctors said that the epidural went in perfectly. They did a test dose and everything looked great. Most of the time any problems would surface during the test dose and the doctors would be able to safely re-insert the epidural properly. So they started the infusion.

My ears immediately began ringing and I starting having convulsions. The doctor said blood was backing up into the epidural line. They think the epidural slipped into a vein and the epidural medication started seeping into my vascular system. I was starting to have a seizure. They had to immediately push meds to stop me from seizing and get Lily out as soon as possible.

I could feel them prepping my abdomen and I just kept yelling “I’m not numb yet”. The doctors started panicking and before they could knock me out, I was able to hear everything and I was terrified, I heard the Doctor yell, “Plan C - she’s seizing." Then I was put to sleep.

The doctor said he got Lily out in one minute. I had to have two blood transfusions because of all the blood that I lost and was then transferred to ICU again to go back on Magnesium Sulfate for another 48 hours....I never saw Lily, and I was so sad, I thought she was still inside of me.

Lily Catherine
May 10, 2008
2:43 p.m.
2 pounds 14 ounces
15 inches

Me back in the ICU

On Sunday, May 11th (Mother's Day) I was finally able to see my little Lily for the first time - what a wonderful present! They wheeled my bed from the ICU to the NICU, our beds were right up next to each other. She was so much smaller than in the pictures!

The next day (May 12th), I was finally able to hold Lily for the first time.

Two days later I started to have nosebleeds, my incision started to bleed and there was blood in my urine. My platelets had dropped to 340,000. After drawing some labs, they determined that I had become allergic to Heparin....Thankfully that was the last of my problems.

Five days after Lily was born, I was discharged. They had made accommodations for us to stay a little longer (probably because I was crying so much about leaving her). But in the end, I decided the best thing would be to get home. I had left my house the morning of April 21st, thinking I would be coming back later that day. And instead it was 25 days later. 

Home felt good, but there was a spare room there, that hadn't been entirely cleaned out for Lily, paint had to be purchased and furniture needed to be ordered. And it was missing the baby that was supposed to sleep in it. 

The day after my discharge was my baby shower that had been scheduled previous to everything that happened. It was strange to be there and know that Lily was not inside of me anymore, and was sleeping in an isolette in a hospital. I used my baby shower as an opportunity to thank everyone for all they had done. I stayed up the entire night before writing this, and asked my best friend to read it to everyone (I put a pillow over my face as she read it, to hide all my tears.) There was not a dry eye at the shower after that was read. My sister joked that we had taken "shower" to a whole new level.

Lily had a 44 day stay in the NICU. They were the most physically and emotionally tolling days of my life. You can read about it here.

After 44 days, Lily was discharged. She saw the other side of the NICU doors. On June 23, 2008 at discharge she was 4 pounds 9 ounces and17 inches.

We took her home and she felt fresh air for the first time.

And we brought her into her nursery (that we did get finished).

On July 2nd Lily hit 5 pounds!

It was a rough road, but we got through it, and even though there were times when I told Chris this would definitely be our only soon as I saw Lily I knew that it was all worth it and I would do it all over again in a heartbeat!

Written much later: 

In the moments that I reflect on everything that happened and how much it has changed me, I learned some things...I can't control everything (big lesson for me). I am a better mom because of everything we went through. Writing is therapeutic for me. I will always trust myself when I feel something is wrong with my body.

We did go on to have a second baby, and he was full-term. You can read about the precautions we took to avoid pre-eclampsia here and his beautiful birth story here.

Here are some hospital pics from my stay for 25 days, it became a second home:

Daddy gives Lily a kiss for goodluck

flowers from friends and family - thank you everyone!
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