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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*Laura Angel said...

Your story is soo similar to mine...its scary...except Cara at almost 31 weeks had already passed by the time anyone realized how sick I was. I am so happy your sweet Lily is here with you :)

Anonymous said...

Wow, what an amazing story for the both of you. I delivered my son by emergency c-section due to class I HELLP on May 8th, just two days before you.

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