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Emily and Hayden

Emily and Hayden, twins discordant for anencephaly

Our Story begins in August of 2003. That was when we were married. We knew right away that we wanted to have a family. However, after 9 months of trying and not getting pregnant we started to see a fertility specialist. The Dr. ran the “usual” tests to see if he could pinpoint any issues. He came up with none. So he stated that we will try low doses of Clomid and timed ovulation. He was certain that this would work.

Fast forward 4 years, many other fertility meds and thousands of dollars later. Still no baby. Not even a pregnancy. Our only option at this point was a very expensive IVF.

We made the decision Aug 2007 to take a 2nd mortgage out on our house to finance the IVF. Oct. of 2007 we underwent our first IVF cycle. 32 eggs were retrieved. 29 fertilized and 27 made it to day 3. We were thrilled at the possibilities!

We transferred 2 Grade A 3 day old embryos back. Unfortunately neither took. Luckily we froze the remaining embryos.

March of 2008 we saved up enough money to transfer back a few frozen embryos. We had 6 that were thawed and 4 made it. Of those 4, 2 took. Twins! After 5 years of trying TWINS!

We were thrilled, and honestly a little scared. My pregnancy went great. No morning sickness, nothing unusual, no spotting (I read that’s common with twins). At 6 weeks we heard 2 heartbeats. We had countless ultrasound pictures and at 12 weeks I was released to my normal OBGYN.

Although scared, I was getting used to the idea of twins, and getting quite excited. Not to mention I couldn’t wait for my 20 week ultrasound to see what we were having. After all, in my mind everything was OK. If it wasn’t it would have been found before this.

As a side note since my children were conceived by medical means, I was taking a prenatal vitamin regularly. The recommended amount is 400mcg, and my prenatals had 800mcg. Twice the recommended amount.

At my 20 week they scanned baby A first. A Boy! He looked perfect. Quite honestly, loved to show off his “boy parts”. Baby B was next. A Girl! After all this life was perfect… a boy and a girl! I’ll never forget the grin on my husbands face.

That’s where it all started to fall apart. They couldn’t get a good head shot of the girl. They said both babies were head down, and it looked as though she was quite comfortable and didn’t want to move. They had me go to the bathroom, thinking that would get her to move. While I did that, they left the room.

I should have known something was up. They, yes they because we had 2 “specialists”. After a while they came back into the room and did another scan. Still couldn’t get a good head shot. So they released me to see my Dr.

Still not knowing anything was wrong, my husband and I were quite excited. Sitting in my Dr’s office, the Dr. came in. She had a look on her face, and my husband will now tell you that he knew something was wrong.

She (the Dr.) said that Baby A was perfect. He looked good. However, Baby B had a condition called Anencephaly. Something we had never heard of.

The whole time she was talking I just wanted to hear “and this is what we have to do to fix it”. Of course there is nothing you can do. All this time, money and hope now shattered. We were sent home, and told that we will see a specialist to confirm the diagnoses in a few weeks.

We were lucky that the medical staff was understanding. I have read so many stories where parents felt as if abortion was their only option. We knew that we could not do that to our daughter without risk to our son. These were our children and we loved them no matter what. When the specialist told us our options we said we are carrying as long as we can and his response was “OK”.

The next 3 months was spent in happiness and sorrow. As my husband says, bittersweet. We have our healthy baby boy, whom we named Hayden. Our perfect little man. Meanwhile we made arrangements with a funeral home for our daughter, Emily. We also got in touch with Now I Lay Me Down To Sleep, and had someone come out and take maternity pictures. She also took pictures during and after the birth.

At 32 Weeks I was put on “house arrest”. Meaning I could still shower, and such but I had to take it easy. At 33 weeks, while brushing my teeth in the morning, my water broke. Obviously knowing it was too early I woke my husband; we called the birth center (I already had my bags packed just incase) and headed to the hospital.

I arrived at 7:20am. They took some basic information and admitted me. I was having some contractions but nothing regular and they were quite certain that even though my water broke they could stop labor. I would not be allowed to leave the hospital. We called family and informed them of the situation.

At 1pm the medicine that I was given pretty much stopped contractions. I sent my husband home to grab a few more things and to let the dog out, plus he needed the fresh air.

Around 5pm I made the comment to my mom about how much I was going to the bathroom. Figuring it was all the fluids they were filling me up with. Every 15-20 minutes I was in there. After I had stated that I started to watch the clock and realized that I was in labor.

The nurse checked me, I was dilated 4cm and she unhooked the medicine saying we were having babies. The next few hours went by fast. We had a visit from the NICU Dr. to explain what could be wrong with a 33 week old baby. We discussed what we wanted / did not want to do with our daughter in terms of medical support, and called family.

Around 6pm I had an epidural. At 9:30 I was 10cm dilated. I started to push shortly after that.

At Midnight Oct 17th 2008 Hayden was born weighing 4lbs 5oz and 18 inches long. He came out with a hefty cry. I got to hold him for a few minutes and watched as they took his vitals to my right. Meanwhile, the staff was getting ready to deliver my daughter.

At 12:24am Emily was born weighing 3lbs 1oz and 14 inches. She also let out a little cry. They placed her on me as well, and immediately checked for a heartbeat.

She was born alive!

The first thing I said to her was “you’re perfect”. I didn’t see any of the anomaly that I had seen of other babies on the internet.

Family then came into the room to meet her, and some of our friends who had stayed at the hospital that night. She was baptized shortly after 1am.

Emily and Hayden, twins discordant for anencephaly

At 2am I was finally able to walk so they allowed us into the NICU and placed Hayden and Emily together. We could only spend about 20 minutes in there though.

Afterwards we went back to our room. Family started to leave shortly thereafter, and by 4am or so the 3 of us were alone.

The last hour was hard on Emily. She wouldn’t breathe for a period of time, and thought for sure she had passed. Then she would take a deep breath and cry. To watch her go through that was as hard as letting her go. We would receive periodic updates from the NICU and finally we told Emily that Hayden is doing just fine. It’s OK for her to go.

At 6:09 am she passed away in my husbands arms.

A week later we had a small burial service for her. She is buried with pictures of my husband and I as well as pictures of the 4 of us in the NICU. Before I knew she was going to pass I bought matching blankets for my twins. She has one with her, and the other is in a box for my son. Her coffin was small and white. It reminded me of a cooler that one would pack for a day trip somewhere. Never in my life had I felt so much pain. After the service we immediately went to the NICU to see Hayden.

The hospital staff was wonderful. They gave us everything we asked for. We have molds of our daughter’s hands and feet. A special box that we keep those in, as well as many donated items by parents who too have lost a child.

Our son is now 2 years old as I write this. He knows his sister by pictures only, and when we do visit her he knows exactly which grave is hers. Sometimes at night he asks for the picture of him and Emily to hold when he goes to sleep.

We also had another child, a boy whom we named Brody, in July of 2010. He is healthy too. I see how Hayden acts with his younger brother and wish that he could have that interaction with his sister as well, but this is nothing that we can change. As my husband and I have said, without Emily we may not have Hayden. She was a strong little girl and I’m sure she is looking down from Heaven keeping an eye on her big and little brother.

 

 

Update:
June of 2013 I gave birth to another set of twins. Boy/Girl also whom we named Dylan and Mikayla. Both are perfectly healthy and I carried them to 37 1/2 weeks before I had to be induced due to IUGR. The older 2 love being big brothers, and it's going to be interesting to see how my daughter grows up with 3 big brothers!

 

 

 

Last updated April 22, 2014