The Test
On March 5, 2011, I took a pregnancy test. I’m still not a hundred percent sure as to why I took it. I had none of the typical symptoms of early pregnancy. I woke up and something told me to take one. The pregnancy test showed a plus sign within seconds. I was shocked! I went downstairs, got my husband, and told him there was something upstairs I needed him to see. I had him look at the test and asked him to tell me what he saw. He said, in a very nonchalant voice, “I see a plus sign,” and then he left the room!
We were told several years ago, that we had a “very slim to none chance” of ever getting pregnant on our own. I was shocked and amazed and surprised. My husband, on the other hand, went back downstairs and finished eating breakfast. I chased after him and asked him if he knew what that plus sign meant. He said that he did and that it meant I was pregnant. Still no sign on his face that it had registered with him.
A few hours later, my husband left to run some errands and I had him pick up several different types of pregnancy tests. I specifically asked for the digital one because I needed to see the word, “pregnant” and I thought my sweet, stupid husband did as well.
Slowly over the course of a few weeks, it settled in for the both of us that we would be adding to our family by one. We were still a little shocked but becoming very excited.
On April 11, 2011, we went to my first OB visit for the pregnancy. My doctor performed an Ultrasound as is standard procedure for the first visit. I was about ten weeks pregnant at the time. We were in the Ultrasound room and my doctor said very matter-of-fact, "there are two." Man! We were shocked into silence for a second time!
On the way home we made phone calls and every now and then we would check in with each other that we had, in fact, heard my doctor say two babies.
The next morning, I woke up and asked my husband if I dreamt we heard my doctor say two? We spent the next week in shock and amazement. We were amazed that a God we serve, could prove our fertility doctors wrong. We praised Him and thanked Him.
The next few months went by with just the fatigue, nausea, and minor aches that accompany pregnancy. I had an Ultrasound with each doctors visit and they had always proven that the babies were developing and growing like they should. There was nothing to fear or to worry about. All we had were the dreams and the hopes for our two new little ones.
From the very first Ultrasound, my doctor thought the twins were identical but she could not be a hundred percent sure. With each scan after the first, she always leaned toward identical but told us that we may not know for sure until after they were born.
Because the babies would never fully cooperate with previous scans, we never knew for sure their sexes. There were speculations and “I’m about 90% sure Twin A is.... and 50% sure Twin B is...” The fact of the matter was, it was too soon to tell. We should definitely know their genders at the 20 week scan.
The Visit
The morning of June 23 came. It was the day of my 20 week appointment and on the drive there my husband and I took bets. He was going with one of each and I was going with two of the same. Through out my pregnancy, I thought they were boys, but that morning, I guessed that they would both be girls. We just laughed and smiled and started discussing names more seriously. We were nothing but excited to take that next step in the pregnancy. We could do some shopping and get the nursery ready. I had been itching to do that since I became pregnant but wanted to wait to find out the gender of the twins.
We entered the room for the Ultrasound with laughter and joking surrounding us. There was not even a hint in the air as to what was to come. Aaron joked with the technician how we had bought hot pink paint and neon blue paint. He joked with her how he was all ready to paint the room with the neon blue paint but I had stopped him and told him to wait a few more weeks.
I did have some concerns and, I guess, some complaints that I wanted to discuss with Dr. C. Around week 17 of my pregnancy, my right side felt bruised whenever I would pick up my daughter or something or someone touched it. I didn’t worry too much about it because I thought it had to do with the way Twin B was positioned. Looking back, it was a sign.
Also, around 17 weeks, I had started to feel the babies move. I enjoyed feeling them move for a couple of days. With each kick and jab, I wondered who they would be and if they were playing with each other or fighting. It seemed that I no sooner started feeling them move quite frequently, that it pretty much stopped. I didn’t worry too much about it. A friend of mine had had twins and she told me that she never felt her babies move much because they ran out of room. I figured that was what had happened with my babies.
I had gone from barely showing at 16 weeks of pregnancy to at 20 weeks, being almost the size I was when I delivered my first baby. I could literally feel my skin growing on a daily basis. As each day progressed after my 16 week visit, I became more uncomfortable. I had a very slight nagging in the back of my mind that something wasn’t right. When I would mention it to others they would tell me that it was because I was carrying two and that I should expect some pain and discomfort.
The slight pain grew to intense pain. I couldn’t sleep because of it. I couldn’t pick up my daughter anymore without wanting to cry. I would get up in the morning and walk down the stairs and I would almost be crippled from the pain it caused.
The nausea was worsening, not getting better like it had with my first pregnancy. The nausea was so bad, I was barely eating anything at all. I had started vomiting.
I was going to discuss these issues with my doctor. I thought I just needed to be put on an anti-nausea medicine and have some physical therapy and I would be good.
None of these issues could take away the excitement and joy I had to finally know the sex of my babies and to officially pick out their names.
So, we are in the Ultrasound room with smiles on our faces. The technician scans Twin A and gets all the appropriate measurements and pictures. She announces to us that Twin A is a girl! A look at my husband with a huge smile on my face and tell him sorry. He just looks at me and grins. The technician tells him he may want to hold off on that neon blue paint. I announce to my husband the name I have picked out for Twin A, our baby girl. He tells me that its okay, because Twin B is a boy.
The technician finished scanning Twin A, and starts scanning Twin B. She immediately tries to find the gender of Twin B, but the baby is not cooperating. Twin B had their legs closed tight!
She goes on with the necessary pictures and measurements that are required at the 20 week Ultrasound and tells us that she will try to find the gender again in a couple of minutes. My husband and I both notice that Twin B is not moving nearly has much as Twin A was.
The technician has become more quiet.
I look at the screen and notice that Twin B is measuring two and a half weeks behind the 20 weeks that I was. I say something to the Technician and ask her what Twin A was measuring. She replies simply with, “Twin A was measuring appropriately.” She attempts to find the sex of Twin B again with no success. She puts the wand down and says, “I’m going to go get Dr. C. I want her to see the size discrepancy before I finish up here.”
The air in the room shifted. The smiles and joking were gone. My husband reaches for my hand and we both stare at the now blank screen.
The Technician and Dr. C walk back into the room and the scan resumes. There is some mumbling that I can’t make out and some medical terminology that even I don’t understand.
After what seems like forever, Dr. C looks at us and tells us that it is too soon in the pregnancy for there to be a size discrepancy like there is. Size discrepancy with twins usually don’t happen until the Third Trimester. She informs us that Twin B does not have the same amount of amniotic fluid that Twin A does. Dr. C tells us that she suspects its Twin-Twin Transfusion. She talks with us some more and then leaves the room.
The technician tries one more time to find the gender of Twin B. The baby in that moment, moves their legs and the technician says she is 90% sure Twin B is a girl.
We break for a quick lunch.
My husband and I try to ignore the weight that had just been thrown at us.
We go get some lunch. He eats. I do not because I am still unable to tolerate most foods.
We discuss that we are now going to have three girls. I smile. My husband informs me that there is still a 10% chance Twin B is a boy.
We smile but we don’t really. We are putting to much effort into trying to ignore what had just been said to us.
We go back Dr. C’s to discuss the findings. She is unusually anxious.
I had worked with Dr. C the previous year. I know it takes a lot to excite her.
She is visibly anxious...
She informs us that she made some phone calls during lunch and that she wants us to go to The Fetal Care Center at the Cincinnati Children’s Hospital. They are the only ones who can treat Twin-Twin Transfusion.
During our visit with her, she is anxiously awaiting for The Fetal Care Center to return her call.
She informs us that it could be Twin-Twin Transfusion or best case scenario, it could just be some freak size discrepancy.
She is still awaiting a return call.
She tells us that we will have a lot of information thrown at us when we meet with the team at The Fetal Care Center. Both babies may survive. One baby may survive and the other die. One baby may be so bad that we are counseled to abort.
She is still awaiting a return call.
The weight of this has started to settle on my shoulders.
Dr. C has not received her return call by the end of our visit. She informs me that she will have a name and contact number before the end of the day and to have my phone near.
She gives me a hug and asks me to keep her informed of what happens.
I ask, “So, I’m not coming back to you for this pregnancy?” She replies with a simple no.
My husband asks her if we need to make this appointment with in the next two weeks. She tells us that we need to make it as soon as possible. “You do not have time to waste,” she replies.
Later I learned, that Dr. C did not think the babies would make it the few days that we had to wait before going to The Fetal Care Center for testing.
I won’t let fear sink in. I’m trying to cling to that it could just be a size discrepancy. My medical knowledge won’t let me believe fully that that is what it is.
My husband is not very anxious. If he is, he’s not showing it. He really believes that everything will be okay.
Family and close friends had been texting us to know the gender of the twins.
Again, we make phone calls but not with the same joyous excitement as we had 10 weeks before.
On the drive home, my husband and I discuss this new information. We try to digest it. We approach the abortion issue. It is against our beliefs. No matter what we found out, we would not abort one of our babies. Life is precious and it is not ours to take.
The Following Days
The next morning I get up. I am still in a lot of pain. I am weighted down by a weight I can’t bear.
A weight I don’t want to acknowledge.
I climb back into bed.
My husband crawls back into bed with me and cradles me as our daughter plays outside of our room.
“We need to name them,” I say. Barely audible. “We need to name them now,” I repeat. My husband remains quiet.
He tells me everything will be fine. We don’t know for sure that it is Twin-Twin Transfusion.
I spend that day in our recliner in immense pain. I wait to hear something from the Fetal Care Center. By the end of the day, just before my husband leaves for a trip, we find out that I will have a day of testing that coming Tuesday, June 28th and if I’m a candidate, I will have surgery the following day.
My husband leaves and I try to muster the strength to care for our daughter.
Fear sets in.
I pray to my God to fix them. I wouldn’t pray for Him to heal them because I know He can heal one of two ways. He can choose to heal on Earth or in Heaven. I am a selfish person. I am a Mother and I only know a selfish love for my children. So, I just kept asking Him to fix them.
I had been trying all day to tell myself that it was just a size discrepancy. I knew that it couldn’t be though. It was just simply too soon in the pregnancy for that to be it.
I call a NICU nurse I used to work with. I give her all of the information and beg her to tell me what she thinks it is. She tells me she can’t tell me for sure but that it sounds like Twin-Twin Transfusion.
She pages a Neonatologist, that I used to work with, for me. One whom I have immense amount of respect for not only as a physician but as a human being.
He returns the page with in 10 minutes. He asks for the history for this pregnancy. He wants to know the information that each Ultrasound held. I tell him that before the 20 week U/S, they had been measuring exactly the same. With hope, I also tell him that they have never fully been able to exclude that they could be fraternal twins. If they are fraternal then it can’t be Twin-Twin Transfusion. He tells me that it is more than likely Twin-Twin Transfusion. He tells me that it could be a weird size discrepancy but that he highly doubts it. He assures me that I am going to the best place that I can. He informs me that the team will throw a lot of scary information at us on Tuesday and if I want someone I know and trust to talk with, to call him.
I go to my sisters that night because I am shaky and I don’t trust myself to be alone with my thoughts.
A very good friend of mine and past NICU co-worker comes down from Fort Wayne the following day to be with me and to help me take care of my daughter.
It was a blessing because I could barely move ten steps without wanting to cry from the pain.
She cooked, cleaned, did my laundry and would take my daughter to the potty when she needed to go.
We researched Twin-Twin Transfusion. We discussed worse-case scenarios.
Mainly we talked about anything but what I was about to face.
My husband was able to manage to come home from his trip earlier in the day. We packed our bags, left my daughter in the care of our friend and left to pick up my mom.
Cincinnati
Tuesday, June 28th arrived. We left the hotel for Cincinnati Children’s Hospital where the testing was to take place. The first test I had that morning was a MRI and then was followed by a two hour Fetal Ultrasound. We had an hour and half break for lunch and then I had an hour and half Fetal Echocardiogram.
After all the testing, we went to The Fetal Care Center where we met with the team.
We were in the conference room for two hours. They showed us pictures from the MRI, and both Ultrasounds. The reason I was in so much pain was because I had 3 liters or five extra pounds of amniotic fluid that I was carrying. Twin A had all of the fluid. Twin B, they informed us, was “shrink wrapped” by the amniotic sac. The reason I felt bruised whenever some one touched my right side was because Twin B didn’t have any fluid surrounding her.
I couldn’t feel Twin A move anymore because she had too much fluid.
I couldn’t feel Twin B move anymore because she did not have any fluid.
Twin A was measuring 12 ounces. Twin B was measuring 6 ounces.
Twin A’s heart was bad.
They assured us that with the medication they wanted me to take, and surgery, that her heart was completely reversible.
The diagnosis: Twin-Twin Transfusion stage 3C.
I don’t remember what the first two stages were but stage 4 was heart failure and stage 5 was death of one or both of them.
We were one step away from Twin A being in heart failure.
I started to cry. For the first time since the nightmare began, I cried.
My husband reached for my hand.
The weight that five days before had started to settle on my shoulders had sank into the deepest parts of me and dared to take over.
They gave us so much information. They told us the risks and the benefits. They gave us percentages and survival rates.
They gave us mainly three options.
One: We don’t have to do anything. If we don’t, there is a very high chance that neither of our babies will survive.
Two: Amnioreduction. They can drain the excess fluid off but that is only a band aid. I would have to weekly have excess fluid drained off. It would do nothing for Twin A’s heart and it would not benefit Twin B at all.
Three: Surgery. There is an 85-88% chance of survival for both twins and a 90% chance of survival for one. There is also a risk of maternal death. Though very small, it is still a risk.
They went ahead and scheduled surgery for the next day. I had all my pre-surgery tests and blood work done that evening. They told us to go home and to discuss what we wanted to do. If we chose not to have the surgery then we were to page the nurse at any time before 7am the next day and let her know.
I have no idea how I managed to get on the elevator and walk to the main lobby in the hospital. I collapsed on a bench in front of the out-patient pharmacy and sobbed.
I didn’t know what to do! There was so many risks. So many things that could wrong. I cannot explain how distraught and helpless I felt.
The day Dr. C. told us she suspected it was Twin-Twin Transfusion, I remember telling my husband that I will not ask “why me?” but that I will ask “why?”
On the bench outside of the out-patient pharmacy, I remember thinking, no mother should have to make these decisions. No parent should be faced with what we are faced with.
I wanted to know why. Why did this have to happen at all? Why did my babies have to be so sick?
I was not going to ask why me. I refused to ask why me because that would have meant some other mother would be facing what I was and I wouldn’t want any one to be faced with this.
After many hours of discussion and prayer, we chose to do the surgery.
I didn’t sleep that night.
I saw the sun rise the morning of June 29th. I felt at peace. I showered and then we left for the hospital.
The surgery went well. I slept through all of it. At the end I remember looking up and seeing Dr. L. smile at me over the curtain and he said, “It went really well. We couldn’t have asked for anything to go better.”
They wheeled me back to my room at The Fetal Care Center where I would recover and they would monitor me until the next day.
I had some contractions but they said this was usually the case after surgery. As the day wore on, my contractions became so mild that I wasn’t able to feel them anymore. They also became less and less frequent. My nurses were happy with the way everything looked.
One of the High-Risk Doctors came in to talk with me. He told me that from here on out I was to be on super strict bed rest. They really did not want me sitting up. I would be allowed to shower, use the restroom and go downstairs in the morning, and up them at night to go to bed. They wanted me lying down, especially for Twin B. It would be the best thing I could do for her. She would be able to grow and try to catch up with her sister. They wanted me to stay in Cincinnati until July 5th after I had another Fetal Ultrasound and Fetal Echocardiogram. After those tests they would release me to a high-risk doctor in Indianapolis.
My Mom and Dad had been there that day since the surgery began. My parents decided to leave around 4 pm. My two sisters arrived around 6pm. They ate dinner with me and my husband in my hospital room and we watched TV. I was feeling good. Right before they left around 9pm, my little sister commented on how my contractions had really reduced in the short time that she was there. We had discussed things I could do to keep from getting bored in the weeks to come. We also discussed getting a system set up for people to come stay with me and help with my daughter when my husband was gone on a trip.
I was looking forward to a good nights sleep that I hadn’t had in months. At 11pm, I had just returned to my bed from using the rest room and brushing my teeth when a contraction hit me that took my breath away. I had a lot of pressure. I whispered my husbands name. It was all I could manage through the pain. The pain stopped and I tried to reposition myself in bed when it happened again. I gripped the side rails on the bed and shouted for my husband louder this time. He shot up from sleep with concern. I told him to tell the nurses that I was contracting.
He ran out of the room as another one hit. The nurses came in and said that nothing was showing up on the monitors. In between contractions, I told them that I was feeling a lot of pressure, like I needed to have a bowel movement.
The look on their faces changed and I KNEW!
One nurse immediately laid my bed down flat while another nurse flew out of the room to page the doctor. The nurse that stayed with me checked me. I heard her say, “bulging.” I started crying, saying, “No, God! Please, no God!”
They loaded me into an ambulance and rushed me to The University of Cincinnati Hospital.
I was contracting every three minutes.
June 30, 2011
Once I got to the University Hospital, they started me on Magnesium Sulfate, put my bed to where my feet was higher than my head and tried to start an epidural.
The High-Risk Doctor that was at the hospital that night said that if we could get the contractions to stop, then the amniotic sac may go back into the uterus. It was completely in the canal by the time we made it to the hospital. She also really wanted me to get an epidural because that would allow me to relax further and help the amniotic sac to “hopefully” go back up into the uterus.
A Nurse Anesthetist and Grad student came into the room to do the epidural. The Doctor did not want me sitting up at all for the fear it would rupture my bag of water.
They rolled me to my side. By this time the Magnesium had taken affect and I was really weak, with barely any control over my muscles. The Nurse Anesthetist said to the Grad Student before they started, “This will be great experience for you. We never get to do epidurals on side-lying patients.” This is not something you want to hear as a patient. I am still contracting every three minutes and I am crying.
After many, painful attempts (one attempt, they decided I did not need to be numbed for) they failed to get an epidural started.
I remember lying in bed, clinging to the rails while they were trying to get the epidural started. Every now and then I would open my eyes and see my husband. As each attempt failed, the concern in his eyes grew. My husband is a very laid back, relaxed man. He does not get excited over much. He was visibly shaken and concerned. At one point, I opened my eyes and he was gone. I remember thinking, not only am I going to lose my two babies, but I am also going to be paralyzed.
He later informed me that he had to leave the room. He was getting scared and angry. He said it was awful watching them treat me like a dart board and jabbing my back with needles.
They eventually decided they needed to stop. They kept getting the epidural catheter in a vein. They would give me a test dose before they realized they were in a vein. They ended up giving me four test doses in a vein. My blood pressure dropped dangerously low because of it. It dropped so low, I am surprised that I was even coherent at that point.
After being on Magnesium for several hours, my contractions finally went from every three minutes to every ten.
The amniotic sac was still in the canal.
The High-Risk Doctor came back into the room. She told me and my husband that if the Magnesium was to work, we could hopefully hold off delivery for another three weeks.
That would only put me at about 23-24 weeks gestation.
I had been a NICU nurse for five years. I knew what 23-24 week babies looked like. What their survival rate was. What their quality of life could/would be if they did survive.
I had asked Dr. L., the High-Risk Doctor, in our meeting on Tuesday what he thought age of viability would be for my twins. Dr. L. informed me, that with my twins being as sick as they were and Twin B being as small as she was, that he would not consider viability for them until around 26 weeks gestation. Dr. L. told me that even then, Twin B would have a very poor prognosis.
As morning dawned, and the doctor got done talking with us, I knew there wasn’t much more room for hope.
I knew my body was not going to hold on to my precious babies for three more weeks.
I silently wept in my bed.
My nurse came into my room with the head Anesthesiologist at that moment. She thought I was crying because I was in pain. I assured it was just my heart breaking.
I refused another attempt at an epidural. They respected my wishes.
The Anesthesiologist and my nurse assured me, that at any moment, if I changed my mind, they would get me one.
I did not care about the physical pain. I have to admit that preterm labor is so much worse, so much more painful than when you are in labor to deliver a healthy, term newborn.
It is a heart wrenching, gut wrenching pain that no medicine can diminish.
Shortly after the head Anesthesiologist left, the Ultrasound technician came in with Dr. D. (the High-Risk Doctor that was on for the day) to do a scan. We discovered that both babies were head down, hearts still beating, and I was dilated to 2cm; 4cm when I was contracting. Twin A’s head was sitting right on my cervix.
Before 11am I started feeling pressure. I started feeling the urge to push. They came in and did another scan and discovered that Twin A was in the canal.
She was coming soon.
At 11:26 am on June 30, 2011, I delivered Emmerson Claire. She was alive! She moved her tiny left arm right after they pulled her out. She moved both of her little legs once they placed her on my chest.
She was beautiful! All 10 1/2 ounces of her!
The doctors and the nurses left the room so we could be alone with our daughter.
My husband climbed into bed with me and together, we examined her. Every 9 1/2 inches of her. She was perfect. She had ten fingers and ten toes. Emmerson had her older sister’s nose and her Daddy’s lips.
We kissed her. We held her hands. We told her how much we loved her.
We tried to fit a lifetime of words and touches into a time that was too short.
We watched as her heart starting slowing.
We told her that it was okay to go to Jesus and that we would always love her.
We sang ‘Jesus Loves Me’ as she passed from my arms into the arms of her King.
She entered The Kingdom of Heaven at 12:35 pm.
Shortly after Emmerson was born, my nurse increased the Magnesium once again. They were hoping I could hold onto Twin B for a few more weeks. With the increase of the Magnesium, I grew more and more weak, barely able to speak and not able to move at all on my own.
About two hours after Emmerson was born, they performed another scan and we discovered the Twin B still had a heart beat and she was moving a little bit.
My husband had left the room to make the appropriate phone calls. It was the first time he had left my side in almost a day.
Three hours later, at around 5pm, they performed another scan. We had discovered that somewhere in the last three hours, Twin B had been wrapped in the arms of her Jesus.
They stopped the Magnesium Sulfate.
They told me when I was ready, they would start the appropriate medications to induce labor.
My husband came back into the room and I informed him of what I had just found out.
We sat in silence. There were no words.
My parents entered my room around 7pm. My mom embraced me and we wept together.
My sisters arrived around 8pm.
I’m not sure when I told them they could give me the medications to re-introduce labor. It was just another hard decision that a Mother should not have to make.
We had Emmerson come back into our room. They had her dressed in a beautiful gown. My family got to meet her, hold her, and love her.
I held her as I labored to deliver her sister.
I eventually handed her to my husband because the contractions were getting too intense.
I delivered Vivienne Catherine at 11:56pm on June 30, 2011.
She was just as beautiful as her sister. Though she was smaller, you could tell they were identical.
Vivienne had her older sister’s nose and her Daddy’s lips.
She had ten tiny perfect fingers and ten tiny perfect toes.
She was perfect! All 7 ounces and 8 3/4 inches of her!
We kissed her. We examined her all over. Held her hands. Kissed her tootsies and her perfect little head.
I wrapped my Emmy and my Vivi up in blankets and held them close to my chest, praying that they could feel how much I loved them. How much I had wanted them.
The following day, the first day of a new month, I was discharged.
I was able to hold my babies until it was time for me to go.
The nurse told us to call her when we were ready. My husband had to do it. I couldn’t. How is a Mother ever ready to leave her much loved babies? I held them and tried to tell them everything I could think of.
I have never had to do anything in my life harder then leaving my babies, knowing I would never see them again this side of Heaven.
Two parts of my heart will forever be missing.
One piece is forever with my beautiful Emmerson Claire.
One piece is forever with my beautiful Vivienne Catherine.
Stephanie
