Sweet B's Story

This is Sweet B's story.

It is beautiful and painful and terrifying, but mostly, it is beautiful.

This blog will document the miraculous journey of Sweet B, and I will (hopefully) never go into this much detail again about our personal lives. But in order for you to see the miracle of my Sweet B, you need to see just how miraculous her start in life was.

In December of 2009, we found out that we were again pregnant, after an emotionally painful miscarriage about nine months prior. We were elated after finding out, and spent that first week in bliss. Here we are a few days before we found out the good news. I was pregnant here and didn't know it.

She was a much wanted baby-one that my husband and I had planned for and had purposefully put off having for 13 years of marriage-so that we were completely ready-emotionally, physically, financially, and spiritually. I was already afraid for this pregnancy, because a miscarriage had sadly taken away my innocence. But I was determined to stay strong. I bought this necklace and told myself that I was going to wear it every day for the rest of my pregnancy, and I did.

I returned to work as a teacher after Christmas break, when I was about six weeks pregnant. I thought that I was miscarrying at school, and my co-worker called my husband to come and get me and take me to the emergency room. I was a sobbing mess and couldn't believe what was happening. After having blood taken and an ultrasound, we were told that I had a massive hematoma (blood clot) separating the gestational sac from the uterus and that I was miscarrying. They were not able to see the fetal pole (baby) at this point and went home waiting to finish miscarrying.

After a few days, I still hadn't miscarried. I went back to my nurse practitioner, and she told me that she wanted to run another blood test. The blood test showed rising pregnancy numbers, but not very fast. Two days later I took another blood test which showed that my numbers had dropped, which means a definite miscarriage. I begged my nurse practitioner to help me get the miscarriage over with quickly, and she refused because the tests had been done at different labs, which could show differences in the pregnancy levels. She had me go on bed rest so as not to disturb the hematoma. The next blood test showed slow rising levels, but the ultrasound in her office still showed no baby and the massive hematoma.

I continued in misery on bed rest and felt like I was in a living hell. The nurse told me that the baby had already likely died or that I was going to miscarry soon, but she did not want to give up. So I waited in bed.

The next week I went to have another ultrasound. I knew that this was likely the one where we would see nothing and I would be admitted for a D+C to finish the miscarriage. I watched in terror as the ultrasound tech tried to see what was going on. She said, "There's your baby. And there is the heartbeat." I began crying and my husband, M, was completely enraptured. I thanked her for allowing us to see the heartbeat before the baby died. The hematoma was massive. Here is a picture of it.

The arrow is pointing to the baby. The baby is in its gestational sac, and the huge "C" looking shape is the massive hematoma. So much bigger than the baby. The gestational sac should be attached entirely to the uterus, but it was only attached by a small amount.

I was so incredibly thankful to have gotten the chance to see the heartbeat, but I knew what was coming. The nurse called me and told me that the radiologist had seen the ultrasound, and said that the heartbeat was slower than it should be, and that gestational sac was hanging on by a thread and that this was going to likely end soon. I knew it. The nurse did say that not moving my body unless necessary might help. My sweet friend and coworker emailed the staff at my school and told them that I was having pregnancy difficulties and likely miscarrying, and to please not talk to me about it. I went back to work that next day, and my husband, M, set up my desk in the front of the classroom so that I could teach from a sitting position. The staff was incredibly gracious and perfect and let me be.

The next week I was still pregnant, after more bleeding and lots of cramping from the hematoma. I had another ultrasound. The hematoma was still there.

And yet another ultrasound a bit later. The hematoma was still there. But so were the hands and feet and head and body.

When coming home from one of the ultrasounds, I got my iPhone out of my purse, and my bible app had opened up and this verse was displayed.

 

I went to work, taught from my desk, and came home and got into bed. I repeated this every day for seven weeks and had an ultrasound every week. One of the nurses even made a sign for the door, labeling it as my own personal ultrasound room. Every week I was told to prepare to miscarry. The hematoma was still there and the baby was measuring a little behind.

It was at the time, the hardest seven weeks of my life. I pleaded and pleaded with God and wrote Him this letter. I pinned it above my dresser where it stayed for the next six weeks.

I like to think that my faith was strengthened during those seven weeks.

The hematoma wasn't there anymore, so surely things were going to be just perfect now.

I had always wanted to announce my pregnancy at a staff meeting, but all of the staff already knew, even though I hadn't spoken of it to most of them. Still, I wanted to announce it, and I did. I asked them to pretend that they didn't know, and I shouted, "I'm having a baby!" They clapped and I was filled with joy.

This was me the morning of my announcement.

I was just as excited to tell my sixth graders, so I passed out Baby Ruth candy bars and asked them to guess the reason. They came up with some answers and I circled the correct one.

The next six weeks were filled with pure bliss. Looking back, I now realize that they were the only six weeks of my entire pregnancy that I felt pure joy.

We spoke of baby names and I came up with a girl's name. If it was a girl, it was to be the Italian version of my dear aunt who had passed away that year. We discussed nursery themes and our plans for the future. I decided that I wanted to stay home and not return to work the following year. I didn't care what it took to do this. So we put our home on the market, knowing that we would not be able to pay our hefty mortgage.

At sixteen weeks, we paid to have an elective gender ultrasound. I was terrified of seeing something wrong with the baby, but the baby looked perfect. Well, it looked like a perfect alien.

And we found out the gender...

My tummy grew.

Then it was time for our nineteen week anatomy scan. The gender of the baby would be confirmed and we would get to see her again! The best part about the day was that it was M's birthday and we had planned it on that day for that exact reason.

The ultrasound started and the tech was very quiet. I started getting panicky and having trouble with my breathing. He showed us the parts of our baby, but then asked another tech to come in to confirm some measurements. She started taking measurements, and as she measured, I began seeing just how small everything was, because as the tech clicks on the body parts, the dates are shown on the screen. I was nineteen weeks, but the head was measuring eighteen weeks. The abdomen and chest were seventeen weeks, and the legs and arms-sixteen weeks. Sixteen weeks. They went to speak with the radiologist, who asked if I was Asian, as some Asians have short long bones (the legs and arms). I asked if it could be because I was only 5'2". They didn't know. They told me that I also had complete placenta previa and that I needed to be seen by a perinatologist right away.

I left sobbing. I was frantic. I googled "short long bones" and I kept being directed toward Down Syndrome and other abnormalities. We were scheduled with the perinatologist two days later.

There are not may pictures from here on out, as this is where our story gets very dark, much darker than the first seven weeks of my pregnancy.


We had another scan at the perinatologist's office, and the measurements were confirmed. Also, not only did I have placenta previa, but the placenta was in the shape of a small ball. Placentas are supposed to be long and flat and not sitting right on top of the cervix. The perinatolost was very concerned. She was concerned about a possible Trisomy or other chromosomal abnormality, as well as dwarfism.  Yes, this baby could just be small, as I am not a tall person, but I could tell that she said that purely for my benefit, and I could tell that she didn't believe it. She wanted to do an amniocentesis, but gave us time to think about it and reschedule. Before leaving, she asked us if we only wanted a perfect baby. We said, "We will love any baby." She hugged me and we left.

We decided that we needed to do an amniocentesis, so that we could begin preparing for the baby. I needed to know so that I could join support groups and prepare myself. Before the amnio, we had to attend genetic counseling. I mistakenly thought that genetic counseling meant helping you emotionally deal with the possible diagnoses you are facing. Nope. It consisted of a cold woman showing us charts of abnormal and normal chromosomes and then telling us that our baby has extremely short long bones and ribs, and an abnormally round head. (This was the first I had heard of the ribs and head). She sat there coldly drinking from her Weigh.t Watch.ers cup, and proceeded to tell us of our termination options. We were dumbfounded and angry. She wanted to do not only an amnio, but a micro-array test as well. This is a new test which looks at tons and tons of chromosomes. She then told us that the doctor was concerned about lethal dwarfism, which is a dwarfism where the ribs are so small that when the baby is born, they suffocate and die from the lungs having nowhere to expand. We felt sick and I wanted to disappear into the floor. I did the amnio and I cried as they withdrew the fluid, knowing that this could cause me to miscarry, but I knew that this was what I had to do.

A few days later the amnio results showed no chromosomal problems. But we still had to wait for the mircroarray tests. A week later, those results came back normal.

Sometime within this week, I stopped going to work. We  hired a sub and I pleaded with God that I would be able to return to work, and that this would just be a nightmare that I would wake up from. I had taught for ten years and had a wonderfully sweet class, and wanted to end my teaching reign on a good note. I knew that no matter what happened, I would not be returning the following year. I would either have a baby with special needs, or I would have a dead baby, and both conditions warranted me not being able to return to work.

I loved this baby with my whole heart. And I tried my best to be brave.

A few days later, we were on our way to see the skeletal dysplasia (dwarfism) expert several hours away. My mom flew into town to go with us, and her and I were both sick with worry. This is a good time to describe the tendency of my husband to never, ever worry. In all honesty, it can be lonely when he doesn't worry. However, if he was like me, we would both be a floundering mess.

My mom paced in the lobby as we went in to see the specialist. The entire wall was an ultrasound screen, and we could see every detail. Again, the doctor made the painful measurements. She spoke of several disorders that were possible, but she just didn't see any evidence. She saw severe IUGR, which is Intrauterine Growth Restriction. It was an extremely severe case. She said that she had a 50 percent chance at life, and if she did live, that she was likely to have extreme brain damage because she thought that the sutures in her brain had prematurely fused. She told us that she would "take the blame" for terminating her. She urged us to. She told us that she could get us into a place that would terminate her after 24 weeks, due to her extreme problems. She told us that she was not receiving proper nutrients due to a horrible placenta, and that she would likely die within the next few weeks if we did not terminate. My fertility would be compromised by terminating so early. Because of the previa and her tiny size, I would have to have a classic vertical c-section, and there would be other problems which could mean no future children for me. But in the next breath, she urged us to just "start over." We had gotten pregnant naturally twice within nine months-surely we would get pregnant again.

As she was talking, she had blown up Sweet B's face on the screen on the wall. She was beautiful. But I detached myself from the moment-I think in order to make it through the appointment. I did all of the talking. M sat there, obviously infuriated.

We left the office completely devastated. My mom, husband, and I drove home for four hours in complete silence.

That evening I cried and cried, and my husband and I had a conversation that changed the rest of our lives. He told me that I was the right mother for this child, and he knew me so well, that if I chose to end her life, he knew that I would regret it forever. She was also a child of God, and He created her just as she was meant to be.

So we knew that we were in it for the long haul. It was terrified. My husband was not. He is a rock of strength.

Within a few days, I chose to go back to work to hold my Open House, where my students showed their parents their work. I knew that my baby was likely to die. I wanted to crawl into the floor the entire night. But I didn't. I put on my strong face for the parents and students.

Because of my placenta previa and severe IUGR, the perinatologist deemed it necessary for me to be on complete bed rest, and laying on my left side as much as possible, for the baby to get the most blood flow. I was now off of work permanently, which broke my heart. I laid in bed and prayed and prayed and cried and slept.

I prepared. I met other women online who had birthed stillborn babies. I contacted a photographer to take pictures of my dead baby. I searched for tiny outfits online that would fit her tiny, dead body.

We sold our home and moved. My family packed up my stuff and that was the end of my home and my job and life as I knew it. Remember how I had waited until everything was perfect to have a baby? Now everything was gone.

I went to the perinatologist for another appointment when I was twenty-seven weeks, where she found the growth had just continued to slow remarkably, just as in every other ultrasound, and that the blood flow to the placenta was absent. She told me to go home and that the end may come. I begged to go to the hospital. I wanted to go right then. She told me that my baby was under a pound and would surely not make it. I wanted to go right then. So she sent me.

On the way there I called my mom, and had her go and buy the baby a pink blanket to wrap her in when she was born still. I had her find her a dress to wear, which ended up being a doll outfit. I asked her to buy me the book "I Love You Forever," so that I could read it to my baby after she had passed.

Upon arrival to the hospital, my OB and perinatologist said that if she was born, the breathing equipment would not be small enough to fit her. But then, we met the neonatologist. He said that even at under a pound, if we could get her to 28 weeks, she had a pretty good chance of surviving. I thought my husband had hired someone off of the street to tell me that and give me hope. So I held onto that hope, even though it was was so terribly difficult.

I spent five and a half weeks in the hospital on bed rest before I had her. In that time I had her heart rate monitored every four hours. I spent hours with my social worker who ended up being my counselor, and helped me to breathe deeply and meditate. She took me down to the NICU, so that I could prepare. Upon entering the large room, I caught my breath. When she took me to the isolette which contained a baby who weighed 1 pound and 6 ounces, and was bigger than my baby, I panicked. My face grew hot but I mustered up the courage to stay in that room. I even saw the neonatologist who had given us hope. I told him that my perinatologist still told me that my baby wasn't going to have a chance, and he disagreed. I saw babies hooked up to tubes of all kinds. The social worker gave me a diaper that was smaller than a panty liner, and told me that it would be big on my baby. A dear online friend made her adorable hats to wear when she was born.

I visited the NICU twice more, each time preparing myself for what was to come. I saw a baby who was newly born, with doctors and nurses gathered around him, as well as the terrified father who watched his baby being hooked up to tubes and wires. The baby was so tiny, but I found out he was over two pounds-twice as big as my baby.

At 28 weeks I almost had her one night. Her heart kept having decelerations, but the doctors held off.

No one planned a shower. I didn't make a registry. I didn't dare dream of the white crib that I wanted her to sleep in at home.

I carried her to 32 weeks. The day before, the perinatologist observed reverse diastolic flow through the umbilical chord and her growth had completely stopped for one week. Once the flow reverses, it becomes deadly. It was time. She was estimated at one pound twelve ounces. I was terrified. The perinatologist hugged me and said that she might just get out of this okay, and that the bed rest had kept her in and safe, but that I had a long road ahead of me. The night before I had her I touched my belly and told her all about how much I loved dancing and everything else that had happened in my life. I wanted her to know about me. I told her that no matter what happened I would always love her.

My family came to the hospital and we waited. I was terrified.

This was me in the waiting room before my c-section. I cannot even begin to describe the fear of having such a tiny baby, and not knowing whether or not she would live.

This was my husband, always being the joker, trying to make me laugh.

I don't remember if we prayed during the c-section. There were many people waiting for Sweet B to make her entrance. Doctors, nurses, respiratory therapists, NICU nurses...When they pulled her out my respiratory therapist said, "Baby Time," and my husband stood up and tried to film her exit from my body and into the arms of her respiratory therapists. He got so choked up that he only filmed a second. He began crying and I was terrified and asked him what was wrong and he said, "It's amazing." He sat down. We heard no cries coming from her. My anesthesiologist told me, "She is small." We knew she was in the next room being worked on. After some time, a nurse came in and asked which one of us had the long toes.

And we knew...that she was okay. That for the time being, she was okay.

It was the most wonderful moment of my life.

My dad tells me that he was in the waiting room, and he made a plea with God, and asked that if one of them had to die to please let it be him, so that Sweet B could live. He said that he felt a moment of calm, and then he called the recovery room to talk to my husband, who told him that everything was okay, and my family cried with joy.

And even though I couldn't see her for a few hours, I knew that my husband was with her and that my family had seen her. My father told me that her head was the size of a tennis ball. But she was perfect. Just perfect.