I don't really know how to summarize "the story". It's long and it's complicated. But I think the details are worth it. So I'm just going to tell it. Here goes.
I had my IUD removed in preparation to start trying to have another baby. I expected that it may take us some time to get pregnant. It had taken almost a year with my son. We planned to really start trying in April, but decided to go ahead and let my doc remove the IUD at my annual exam in January. Bam. Two weeks later, I'm pregnant, a little shocked, and so very excited.
May 17, 2012
Mr. J and I went to the doctor for my anatomy scan. We were thrilled to find out what we were having and anxious to see how much our sweet babe had grown. This was our baby. Our second, and our last. The one who would complete our little family. A brother or a sister? It doesn't matter, right? Only that the baby is healthy. Truer words have never been spoken. We did not find out the sex. We did find out that something was wrong. Really wrong. I remember sitting in the exam room alone after my ultra sound. Mr. J had taken our two year old to the car because he was acting...well, like a two year old. I sat in the room alone and started thinking about how unfriendly the ultrasound tech had been. I thought it was weird because she had always been so nice. Then is hit me. The kind of feeling that doesn't really feel like a feeling, as much as a revelation. She wasn't a rude and unfriendly. She was detached and professional. She was concerned. Something was wrong. I really can't explain what followed. I knew immediately that our baby was going to die. As I sat in that room and waited, I envisioned the nurse practitioner coming in the room quietly. Not alone as she would in a routine visit, but with the doctor. I envisioned them sitting down, pulling the chair close to me. I heard them tell me the news. And I distinctly remember thinking, "This is how it starts. This is about to be my story. I am about to become one of those unfortunate souls who bury their baby."
It was the strangest experience of my life. Well, up to that point anyway. What happened next was almost exactly as I had imagined.
They came in. The NP and the doc. They sat down quietly. He pulled the chair close to me. And he started to talk in such a calm and gentle voice. The kind of voice you'd expect to hear from someone delivering such terrible news.
They explained to my that our baby had developed a "large cystic mass". He also used the words "fetal hydrops". He explained that this is often seen in babies with chromosomal disorders. He told me the prognosis was not good. He asked me to stay in town so I could see a maternal fetal specialist the following day. I left the exam room, had some additional blood drawn while I tried to silence my weeping, and walked slowly to the parking garage to meet my blissfully oblivious husband and son. "Something is wrong", I told my husband. "I don't know how wrong, but it could be bad. Very bad." We left without another word.
May 18, 2012
This day, was at this point, the most difficult day of my life. It's weird when you think you've lived the worst day of your life and then life just keeps one upping itself. Anyway, My husband I went to the specialist. He was a very nice man. He hooked me up to his fancy ultrasound machine. He stared intensely at our baby. Taking a million measurements from every possible angle. He was so kind, but direct. He told us that our baby had a condition called Cystic Hygroma. He said that it was quite severe and actually called the cyst "massive". That is not a word you want to hear from a specialist who sees terrible cases daily.
He went on to explain that the cystic hygroma was so severe that it had led to another condition called Fetal Hydrops. He explained that babies often survive the first condition, but they rarely survive the second. Essentially what was happening was that all the extra fluid that contributed to the cyst was not being reabsorbed. Her tiny body just could not keep up. That fluid has to go somewhere. He pointed to the screed and showed us fluid accumulation in her heart and in her abdomen. He told us with sincere empathy that her organs would continue to absorb the extra fluid. He told us that at some point, her heart would stop beating. That it may be days or weeks or months - but it would stop beating. My husband and I started to weep. He and his nurse left us alone for a few minutes. To weep in privacy, I suppose. He returned and explained that problems like these are usually caused by chromosomal abnormalities.(We found out later that the abnormality that started this all was Turners Syndrome.) Someone had to be the statistic. And on this day, it was us. He said we could have a hundred healthy babies if we wanted. But this baby. Our baby, was not healthy and would not survive. He briefly discussed the options of medically indicated termination vs continuing the pregnancy. He expressed his condolences, and we left his office in pieces.
We sat in the car in the parking lot for an hour. I mean, where do you go? What do you do? What do you say? And to whom? We were frozen.
May 24, 2012
We met with my OB for a follow up appointment. He checked for a heartbeat. Still going strong. We discussed the findings from the specialist. And even worse we discussed the options. They were basically termination by D&E, Induction of labor and delivery, or a c-section. My medical history complicated this decision. Texas law complicated this decision. I was now 21 weeks pregnant. Texas law says no terminations for any reason (with the exception of immediate threat to the mother's life) after 24 weeks. We had to make a decisions. But we decided to wait another week to allow him to review our case with his team. And this week did something else for us. It gave us extra time to hope and pray baby's heart would stop peacefully on its own.
This is perhaps the most unnatural, the most conflicted thing a parent can ever hope for.
In the two weeks that followed, we continued to wait for her heart to stop beating. At 22 weeks pregnant, we met with my OB. He explained the complication of continuing the pregnancy and he recommended a consultation with another specialist. This time, it was a termination specialist.
We saw him. It was awful. My fear at this point was that our baby would survive to full term. Or maybe even survive delivery. I was afraid that she would live a horrible few days or weeks in the NICU. I didn't want her to know that pain or fear. I wanted her to only know love. With heavy hearts, we schedule the termination procedure.
We checked into a hotel the day before the three day process was scheduled to begin. When you are so far along, it is a three day process. Really, universe? Are you fucking serious?
My husband and my amazing sister were with me. The morning of Day 1, I started to feel really uneasy about our plan. Cold feet perhaps, but then there were problems with the insurance. The office staff of the termination guru was giving us conflicting information regarding my insurance coverage. It didn't sound right based on what my insurance was telling me. After several unproductive phone calls, I decided to get my OB involved. I called his office and explained what the other office was telling me. He told me that he was going to personally call and try to sort it out. I don't know what happened during that conversation. But whatever it was left my OB very unhappy. He called me back and told me that he had cancelled all of my appointments with the termination man. He asked me stay in town and that he would call me the next morning with a new plan.
That night, I started having contractions. I took some pain medicine and a hot shower. I tried to sleep, but they were getting worse. My OB told me to go to L&D. He was on call and would be at the hospital.
When we arrived, they immediately hooked me up to the monitor and searched for a heart beat. They struggled to find it. Ultrasound came to my room and again tried to find the heart beat. I knew they wouldn't find it. It had stopped. Our sweet baby had passed peacefully. And not a moment too soon. I got one last look at my sweet babe, on the screen. Still safely tucked inside. No pain. No fear. Only love and peace.
The decision was then made to induce and allow me to labor and deliver.
It's so strange to feel relieved in the midst of all that.
They began the induction process on June 6, 2012. In the wee hours of the morning. By that evening, I was still not responding. They decided to take a break, allow me to eat, and planned to start a new medication the next day. And they did. Around 4 am on June 7th they administered the first dose of the new med. I woke up almost immediately throwing up. And so began active labor. I was on IV morphine and lots of it. I dozed off between contractions for the next three hours. Between the ambien and morphine I could hardly stay awake. Despite the pain, both physical and emotional.
I remember some things very clearly, though. I remember feeling my water break and telling my sister in a panic. I remember the fear that our baby was coming. That I couldn't stop it. I remember the pain. And the panic. I remember begging my husband and sister to get my nurses. I remember the pressure. The urge to push. I begged my nurse to check me. But she said that the doctor was on her way and that she had wanted to check me herself. I can only assume since I had barely dilated at all as of 4am - that they were expecting a much later delivery.
It was shift change at 7am. I remember crying and moaning and trying to breathe. I remember my husband one one side of the bed and my sister on the other. Both so courageous. So loving.
I remember a new nurse coming into my room. I remember telling her that the baby was coming and that I was trying not to push but it was happening anyway. I remember being so scared that she would be born and no one would be there. I remember begging my nurse not to leave me.
She checked me. I was dilated to 7 cm. And the baby was coming. I remember hearing the call for delivery. I remember several nurses and the doctor. I was in and out of consciousness. Pain? Drugs? Exhaustion? Grief?
I remember my husband holding one hand and my sister holding the other as I pushed once to deliver my sweet baby girl. Jocelyn Mae.
I passed out almost immediately.
For a long time I was sad that I didn't see and hold her as soon as she was born. But my body just would not allow it. My precious Jocelyn was born peacefully sleeping June 7th 2012 at 7:31am. She was 1 lb, 4 oz and 9.5 inches long.
I woke up about 9am and the nurse brought her to me. She had remained in the room with us the whole time. I held her. I didn't cry. I just looked at her. Her eyes, her nose, her tiny mouth, slightly open as if in mid-yawn. I looked at her fingers and toes. All perfect in my eyes. I held her many more times. Of course I wish it had been more and yet I know it would never have been enough. My husband and I held her together. My sister held her. My parents came and they held her. I remember being so sad. Too sad for tears even. And I remember being grateful to be able to touch and see and hold her.
I remember when we decided to let the nurses take her away. It was probably midnight. I remember walking over to her bed. I touched her tiny face. I told her that I loved her so much and that I would love her forever. I watched at the nurse gently wrapped her and walked slowly out of my room.
The next morning my OB came in. He asked me if I was ready to go home. I was. He said that he loved us and that he was so sorry for all that we had been through. We left the hospital with a teddy bear and a memory box. They gave us the donated knit clothing that they had graciously dressed her in. They took footprints for us and gave us a clay mold of her feet. It was more than we could have asked for and yet still never enough.
I wanted to leave with my baby. Either swaddled tightly in my arms or tucked away safely in my belly. But that did not happen. I wanted to wake up from this horrific nightmare in my own bed, in my own home and still happily pregnant. But that did not happen.
I wanted to close my eyes and wish it all away.
I wanted to hold her forever.
Still do. Always will.
hi jordanna. thank you for sharing your story, for sharing the story of the life of beautiful Jocelyn Mae.ReplyDelete
i write at ss with you. and my daughter luna had turner s syndrome, just like your girl. her hygromas were also "huge".
i wish i could bake you a cake. i made good cakes.
I'm so sorry about Luna. I hate that you can relate to my story so well. I wish you could make me a cake too. I'd totally share it with you.
J - I sit here in tears reading this. I sit here as an OB/GYN ultrasound tech and cannot imagine all that you went through. I am not sure that I would have been able to not cry during your ultrasound. I love you and am just so sorry for all you have walked through. But, I know that you and bringing healing to so many people. Proud of you for being so open. Love you!ReplyDelete