The Beginning to the End

June 2012 – Dec 2012: The beginning and ending of my happiness

Our whole infertility story

My husband, James, and I met in December of 2003. Then friends, we had no idea what a wonderful and horrendously sad adventure that friendship would turn out to be. We knew faster than most we were simply meant to be. After 6 months, James proposed. Needless to say, my parents were not too happy with a 19 year old engaged to a man she met 6 months earlier.

We decided on a long engagement. I would graduate with my master’s degree before we would wed. That would be nearly 6 years! But tragedy struck my senior year of college. My father suddenly fell ill and in a week passed away. I was left heart broken, with medical issues and no insurance.

At this point, James had already graduated and started his career. We both decided on a quick marriage. We loved each other, and planned on marrying anyway…so why not?

I planned a family and close friend wedding in under a month! We were married September 1, 2007. Immediately we both decided not to take precautions against children. We both wanted a family, so why not let fate decide for us.

After the first year and a half, I went to see a doctor. He quickly said he was unwilling to help until I had lost a lot of weight. I was heart broken. Losing weight was a huge problem for me. I gained about 90 lbs in a little over a year after I found out I had PCOS (and little did I know until my most recent csection with our Rainbow son, Dexter, that I had severe endometriosis as well). I tried every diet. Nothing seemed to work. I spent the next 2 years trying to lose weight.

Finally, I had enough of that doctor and started my search for a new OB.

The Doctor that said, “Yes!”

Finally after searching for what felt like months, I found a OBGYN with an opening. Apparently when you switch doctors, if you are not pregnant it is a few month wait list to get in around me!

My first visit we talk about my goals of children and problems. She took one look at my chart and said, “Your last doctor never ‘officially’ diagnosed you with PCOS? I can take one look at your medical records and tell. You have been hospitalized several times with severe pain, abnormal amounts of bleeding, irregular periods and ultra sounds that revealed cysts.” She just shook her head and put me on metformin.

I would then start clomid.

This new OB officially diagnosed me with PCOS.

PCOS

Ever since I started my first period on my 10th birthday (Thanks! What a present huh?) I have had irregular painful periods. I would go straight on for 2 weeks with a heavy flow, off one week, or every other week, or skip a month or anything else. I would always have to carry spare clothes and be weary of the “double over in pain” moments.

I had severe pain during my period and 2 weeks after. Then one day, shortly after I met my now husband James, I had the worst pain of my life. It was about 2 weeks after my period. I was throwing up and blacking out. He rushed me to the emergency room. I stayed there for hours with doctors hovering never finding the cause. They sent me home with some extra strength ibuprofen.

I went home dumbfounded. What the hell was wrong?? Two weeks later while at James’ dorm, it happened again. This time I couldn’t move it was so bad. Again I was rushed to the hospital only to be sent home several hours later with a mild pain medication.

I was fine for awhile after that, only the normal pain, then one day at work that summer… It hit again. I had to wait in the cafeteria at the factory I worked in for my mom to come get me. Luckily, my brother worked at the same place and it got around that something was wrong and he came and sat with me while I waited. I don’t think he will ever know what that meant to me 🙂

Finally, mom gets there. I have a bucket to throw up in and I am ready. The hospital was less than 5 minutes away. As we start driving, I am sweating and disoriented, nut I notice we are going the wrong way! I cough out, “where are we going?”

“Greenfield, this hospital is no more than a Band-Aid station. I want answers.” Great. Greenfield was 30 minutes away! I just hang in and go. When we get to the half way point mom pulls off the highway. Oh great another detour. I am in intense pain and vomiting….and she goes to pick up my sister and nephew! I was furious. My sister gets in the car.

“What the hell, mom? Krystal looks horrible! Why didn’t you just take her? You just said you were going to take Krystal Greenfield. You didn’t say to the doctor!”

Wow, she didn’t even tell her why?! Could this get any worse? Another wave of pain and nausea washed over me and I realized it could. I couldn’t hold in the screams and vomit. Then, there sat my poor 2 year old nephew terrified and crying as well.

But wait! It gets better, my mother stopped at a gas station on the way to get a cold soda! At least before she went in she asked me if I wanted anything, right?

Once finally at the hospital a mere 45 minutes later, I was put into the waiting room crying and vomiting, in a wheel chair shaking uncontrollably. To make it better a man and his son were laughing and pointing at me. Finally my mother blew up at them (go momma bear) and I was put in a private waiting room where my sister held my hair and cleaned the vomit off me (what an amazing sister right? She soon went to school to be a CMA. Very appropriate).

Finally, I am called back and tell them my history and all the other visits. Again, they are in the dark. It is not until I am sitting there with a morphine drip that a nurse comes in the clean my vomit tray. She takes one look at me and rushes out to get the on call Doc. They come in and explain. The nurses little sister had PCOS and was exactly the same. She knew right away.

The doctor ordered and ultrasound. 1 hour later I was told I probably has PCOS and would have to confer with my OBGYN. I had had a mass of cysts so large that it engulfed my ovary on my left side and my right ovary was covered. One chat has ruptured on my left side and caused a pressure chain reaction of ruptures….

That explains the extreme pain. Finally, an answer. All the other visits were similar. Ruptured cysts.

I was put on birth control and after a couple months all was well with the world.

Little did I know how devastating going untreated for so long would be down the road.

Doctors, Doctors, and bills

Throughout my treatment I have seen 4 different OBGYNs, and one RE. Not to mention my Urologist, and Neurologist! I had 3 kidney stones and a car accident on top of everything! Out of pocket costs for medical for the last 2 years is about 13-15k!! I feel like I will be making payments for the rest of my life ( except on IVF. No payments there. Only cash up front!)

2010: New Doctor – The Doctor that said, “Yes.”
My new doctor tested a lot of things (I have no idea what all at this point) and put me on a gradual increase to 2000 mg Metformin a day. I was almost passing out, so we dropped it to 1500mg and I am currently still on this dose. She also has me taking a prenatal vitamin.

Round 1: 50 mg Clomid + 2000 mg Metformin
After a few months of trying again, she put me on round 1 of Clomid.
50 mg days 5-9
I went through one month of this and went back. She forgot to tell me I had to have a 21 day progesterone test.

Skipped one month

Round 2 : 50 mg Clomid + 1500 mg Metformin
Clomid days 5-9
22 day progesterone: 4.1

Skipped one month

Doctor ordered my husband to be tested. He agreed happily. Results came back good! Count and Motility good!

Round 3: 100 mg Clomid + 1500 mg Metformin
Clomid days 5-9
21 day progesterone: 6.5

Round 4: 100 mg Clomid + 1500 mg Metformin
Clomid days 5-9
22 day progesterone: 11.1!!
(This time she had a blood pregnancy test ordered with it: Not sure why though)

Round 5: 100 mg Clomid (No Metformin)
Clomid Days 5-9
21 day Progesterone: 14.4
+OPK CD 18

According to all the tests she told me I was too low to ovulate. I bought ovulation kits to take with the medicine. @ 50mg Clomid the kits confirmed this. But on the 100 mg Clomid, the kits said I did ovulate (opposite of what my doctor told me).

Info:
According to kits: Ovulating around day 18
Cycle length: 30-33 days
–Before Clomid I would have a cycle length that varied 14 days to 45 days

I tried telling my doctor that I ovulate on the 18th day and that the 21 day Progesterone test may be too early. I was waived off because according to the numbers I am not ovulating. But what do I know…I’m not a Doc.

After all this I was referred to a reproductive endocrinologist.

First visit to the RE


At first I was scared, but my RE Dr. Henry is amazing. He kept saying “when you get pregnant” never once did he say if! Plus, when I used if, he corrected me! He was so positive! He put me on 2-2.5 mg tabs of femara on days 4-8 then I had an HSG done. Most painful thing I have ever done! Turns out one of my tubes is completely blocked! No way to get pg with it! Other seems to be ok. Come on right side! Left side you suck! I  had an ultrasound and my right side had one 18 and one 20! Two mature follicles! I took my ovadrel shot and took a pregnancy test when time. It was negative.

Time to move on to IUI. I was hoping that a new year meant a fresh start. I was wrong. I went in for another u/s and had mature follicles. I was put on letrazole and took an ovidrel shot to release them.

IUI didn’t work, just as I suspected. I had lost all hope at this point. I didn’t even get a glimmer of hope on my 2ww anymore. It was decided that I would have an exploratory laproscopy in 3 weeks to visually check things out.

The surgery went well, but new issues were discovered. Originally we thought that only one side was blocked. The surgery showed us that both sides are completely scared from PCOS ruptures and there is no physical way I could get pregnant 😦

Our only hope was IVF, and intense scary, expensive procedure. We took out a very large personal loan (that we will pay on monthly for over 3 years) and decided to give it a go.

I was on menopur, follistim and now progesterone in ethyl oleate.

ER 6/20 9 eggs 9 fert

‘Day of Egg Retrieval:

They prepped me, I went in and of course I was a bit nervous, but everything I read online said they did a nice conscious sedation and all I would feel would be a little pressure and within a little while it would all be over. I am extremely glad I read that instead of the reality when going in. Once on the table, I was given a small injection. Yay, the drugs were in. Then here comes the 2 foot needle they would jab through my uterine wall into my ovaries, I knew something was up when just the speculum hurt just a little, then came the needle. I had a conscious “black out.” The pain was horrible, the RE tried to talk me through it, but he was having difficulty retrieving the eggs and had to keep moving and wiggling.

I was in an out for an hour. I don’t remember much, James had to tell me all about it. Afterward, they wheeled me into recovery (which I don’t remember either). James said they had to keep giving me stronger injections because of the difficulty and the pain. But, it was all worth it, they retrieved 9 eggs to fertilize.

6/23 day 3 -9 made it (our doc uses grade 4 as Highest Quality)
2- grade 4 12 cell
6- grade 4 8 cell
1- grade 2 8 cell

The Follow-up call:

All 9 eggs had fertilized and they would call us back on day 3 to let us know the progress. On day 3 we were told we still had 8 eggs all which were among the top grades and one that would possibly be a multicell.

ET 6/25 (5 day 2 A+ eggs)
2 A+
3 A
1 B
1 multicell
possibly 4 frozen

3w6d: hCG 162 Prog 29

4w1d: hCG 364

6w5d: first ultrasound We were pregnant with twins!

Everything was a dream pregnancy. I was going to be a mom! I had very little morning sickness and I felt complete with these two little lives growing inside of me.

Oct 23, 2012 Tuesday – I went in for my first biophysical exam. It was weird because the ultrasound was actually kind of painful, the lady had to push pretty hard on my stomach to get a good view. I went home that day and had a bit of spotting (supposedly normal) and some cramping. That night around 11 pm. My world changed. My water broke on baby b.

I went to the ER where I had heavy bleeding and was told I miscarried. Early Wednesday morning they ordered an ultrasound to confirm. During the ultrasound they found that the baby on top’s amniotic fluid sack had torn open (and I am still continuing to leak the fluid). They also discovered both twins still had a heartbeat. I didn’t find out until later Wednesday that I have not actually miscarried yet.

The on call doctor laid it out for us. Within 48 hours I would go into labor and either have two still births or they would die shortly after. At 20 weeks, they cannot do anything to save them, they were just too little to survive. The second is that with the torn sack I am at high risk of serious infection. If that should occur, I would be transferred to IU hospital where they would induce labor and try and stop the infection.

Wednesday my OB came to see me and told us basically the same story. At this point all we can do is wait and be prepared. She did not want to get our hopes up, because in her whole practice and at the hospital they have only had one case of someone’s water breaking before viability (25 weeks) and the mother being able to hold off labor. But they have never had it happen with twins.

They sent me home Thursday to be more comfortable until labor or infection. I ended up making it to my 24 week mark and was readmitted to the hospital for the remainder of my pregnancy. I was given two steroid shots 24 hours apart to help with lung development.

I made it to 26w4days before the worst happened.

At 8 AM I woke up and had to go to the restroom. My mom and James were both there that night and were still sound asleep. I use the restroom and see bright red blood. I walk back out and my mom asked it everything was ok. Calmly I told her I needed no get the nurse, I was bleeding.
Once the nurse got there, I told her and she rushed out to call Dr. Sam who was about to go off shift. When she came back in, she put the toco monitor on me and saw that I was having contractions. Dr. Sam was called again. Once there she checked my pad and didn’t seem too concerned, and wasn’t horribly concerned by my contractions either.
She then began to push on the upper part of my abdomen and it hurt me just a little and was sore. This really concerned her. She ordered a CBC and then prepped me for an emergency c-section. Luckily, James and I are night owls and I hadn’t eaten yet that morning so they could get me right in.
Before I knew it I was in the ER being told to lean forward and push my lower back out. I had the epidural and waited for James. Before he got there I threw up. James came and took my hand. I was only 26 w 4 days pregnant and about to give birth.
Around 10:15 am I could feel pressure in my abdomen and pushing and pulling. At 10:22 am Dr. Sam announced a girl. At first she thought baby B was born first, but it turned out that A had slid back down into position since I was in the labor room. Willow Anne Roark was born at 10:22 am. She was 1lb 15oz and 12 5/8 inches long. They rushed her over to the side and got her on a vent before I could even see her. At 10:24 am Hazel Jaymes Roark was born. She was 1lb 7oz and 12 inches long. This time I heard one tiny powerful cry. I wanted to cry too.
Finally before they rushed off, they showed my beautiful twin girls to me and hurried out. I was then stuck there being stapled shut while somewhere my little girls were being hooked up to machines to try and save their tiny little lives.
I remember overhearing Dr. Sam say there was a little liquid around baby A. After I was patched back together, I was wheeled into recovery, where I was fed some ice chips and constantly asked to try and wiggle my toes. I fought it hard because I had to be there until I could lift my hips up off the bed. I was out of there by noon.
I was wheeled back to my room. Once there I began to throw up again. I was pouring sweat and burning up. They had to crank down the A/C to 64 and bring in a huge black industrial fan.
It wasn’t until late that afternoon before James was allowed to go down and see our beautiful twin baby girls. He was such a proud dadda. He came back with pictures for me, because I still wasn’t allowed to go back and see them. My family actually got to see the girls before I did. I felt a bit cheated?
Finally late that night, I was helped into a wheelchair and taken to see my girls. All night we were called and given updates on Willow. One minute she was doing really bad, then she was back up, then down. It was a roller coaster.
We went in around midnight and was told that she wouldn’t make it. Did we want to hold her. James and I took some time to think about it. We still held on to hope so we said no. Holding her would mean taking her off of the oscillator that was keeping her alive. We stayed with her a long time, then went back to my room.
Around 3 in the morning we were told to come. Willow was making her last fight and would be gone soon. We stayed by her side and told her how much we loved her and how proud we were of her for fighting those 16 hours. Right before her heart stopped beating we held her. We didn’t want her to suffer so we waited.
My last memory of my precious little girl was her Daddy taking her from my arms, cuddling her close and kissing her before he took her away. They offered to let us come see her again because she would be there for 24 hours. I couldn’t do it. They also offered to bring her to my room to stay for those 24 hours. I couldn’t do that either. My little girl was gone.
Later I found out that Willow had one last ditch effort that night, opened her eyes and looked around. The nurse on duty grabbed a camera and took pictures for me. They knew she would never open her eyes again. I am so thankful for those last pictures of her.
I turned down the “dress up” pictures they were going to take of her after she died. I wanted my last memories of her alive.
We held out all hope for Hazel. I put everything I had into trying to will her to stay alive. My precious little girl made it one week. Even the NICU Dr. was confused at her death. She just died. He thought we would be taking home a daughter with us from the NICU in 3 months.
That day, I died too. I still clung to hope with Hazel, but everything about me died right there in the NICU with her. I kept a daily journal in the NICU, that maybe one day I will publish on here. I told of all the milestones with Hazel. The first time I held her, changed her diaper and the day I had to kiss her and all my happiness in the world goodbye.

 

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10 thoughts on “The Beginning to the End

  1. Thank you Krystal for sharing your/and James’ amazing fight to become parents…I had no idea. I am so PROUD of you for putting your story out there. I know it will help in your healing (one of the reason’s I gave you that journal) …and I KNOW someone out there who is going through a similar situation will benefit as well! I Love You! Aunt Sally

  2. Thank you for sharing your story. My husband and I also lost our twins, William and Noah, due to PPROM. At our 12 week scan they found no fluid around one baby. They expected me to miscarry, but I didn’t, and both babies kept growing just as they should. At 20 weeks, my waters broke around the other baby. I went into labour at 23 weeks + 2 days, it lasted 12 hours before they were born on 1st November at 1.30am and 1.36am. Noah passed away during the labour but William was born alive and lived for around an hour. It helps a little to know I’m not alone.

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