When the nurse calls me back later that morning, she says that there were problems. That I need to just relax and that a specialist will be contacting me. A maternal-fetal specialist that will need to run some more tests. Luckily, the specialist was a lot more on-the-ball than my OB-GYN. We set an appointment for the following week. This is on a Wednesday, I believe. That means I have to wait until Monday to find out anything else.
Dr. Strehlow was the specialist. This woman is incredibly sweet and nice, she's very thorough in explaining everything that they see and what they think could be wrong. She recommends an amniocentisis to be done that done, I agree. I'd already expected it, thank you Google.
After this I am referred to a doctor at Texas Children's Pavilion for Women. They'll want me to deliver there, because of the neonatal team. They want to make sure the doctor who handles my pregnancy and delivers me has the best team available and the best resources for dealing with whatever it is we will have to deal with. It will be a few weeks before we have any results from the amnio... More waiting.
We'll skip ahead a bit- It's all kind of a blur anyways. This is during April, 2012. The next few months were weekly doctor's visits, either to Houston for my OB appointments, or to The Woodlands for more ultrasounds. The doctors and team are incredible, they are such sweet people and so caring; I refuse to go back to my OB-GYN. The way he just carelessly threw out the information that he had, the way he acted like I didn't matter, that my baby's health was the least of his worries, I will never be able to look at that man the same again. I have a complaint filed with the medical board- The way he dismissed me will not be forgotten and I am not taking it lightly. I was treated disrespectfully and neglected as a patient. I hope he loses his license. But that's just my opinion.
For a while, as in the entire month of May, I was going to Houston once a week and to The Woodlands once a week. Two ultrasounds a week. And every week, it seemed that there was more to learn. We learned that the amniocentisis came back inconclusive. They did as many tests as they could, they compared our baby's DNA to mine and Mark's to find inconsistencies in her genetic make-up. They didn't think it was Trisomy 18, but they couldn't say 100%. There were just too many possibilites.
Her arms and legs were a problem- Arthrogryposis multi-plex congenita. Her arms were drawn up beside her body and the joints were fixed, they didn't move. Both legs were straight out, she was in a sitting position with legs erect, they were fixed, they would never move. Also, she had club feet. There was trunk movement, meaning she could move her spine, but her chin was tucked down towards her chest and she didn't move her head much either. I would never feel my baby kick in my womb. Because she couldn't kick, she couldn't twist and turn and punch like little babies should.
There was no way to get a prognosis - Nobody was able to say whether she would be okay, if she would live or not. If she did live, she would be hospital-bound for a while, lots of corrective surgeries. No way to know what her brain function would be if she did live. Would she be a vegetable? Would she ever have a happy fulfilling life? Would she ever crawl or walk or learn to talk? Nobody could answer these questions. They told me not to get my hopes up, but they told me to stay positive. We need to stay positive.
Every week, it was something new. Then suddenly one week, I was overcome with optimism. My daughter would be here, at any moment. I was huge - I mean, really huge. My daughter did not swallow the amnioticfluid like babies usually do, she didn't take little breaths in utero, like babies should. So all that fluid was just building up inside of me, and I was gaining weight and gaining weight, my belly got so big it was a hazard to anyone or anything near me. Freakishly huge.
Well, so anyways that optimism kicked in- a mix of joy and "nesting"- and I wanted to go ahead with a baby shower. I was panicky enough about a sick baby, but being unprepared for a baby at all? I couldn't handle it. We started planning my shower. Then, I went for my ultrasound. There was a protrusion on her belly- Something that wasn't there before. They think it's her liver, coming out of her belly. And another protrusion from her bottom- They think it's her bladder and her uterus. These things that should be inside her, things she needs to survive, they're falling out of her. It's like something out of a horror flick, something from a really bad story book.
So, now we need an MRI- A fetal MRI. Pictures of each layer of my daughter and everything that is wrong with her, and another team of doctors telling me "Stay positive. But it doesn't look good." This means she will have more surgeries. She will have more time to spend in the hospital before we could ever think of bringing her home. But we can handle this- It will be okay. We'll figure it out.
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