Everyone says I need to start a journal or blog to get out my feelings, I've always been someone who likes to write out their feelings so maybe this will be nice. Even if no one reads it, I might take comfort in having an outlet. Just a warning (assuming people are reading this) I don't intend to walk on egg shells or be "PC" in this blog; I plan to tell it like it is. So if you're offended by honesty, anger, death of babies, depression and probably occasional cussing this may not be the place for you.
I found out that I was pregnant on April 21st 2014, my birthday. To say it was a surprise would be an understatement but my boyfriend and I took this with stride and happiness. I believe life is a gift no matter when it comes or if it was planned so I was happy to welcome my miracle into my life. I've had a miscarriage previously at 16 weeks, two years ago so I knew that could very well happen again. I was scared but decided to love my child with every ounce of my body for everyday because I didn't know how long I would have this baby. I will probably go through my pregnancy story in depth and even my miscarriage story in another post but not too much now.
Just to sum it up quickly my pregnancy went fly fairly smoothly, a lot of morning sickness but what seemed to be a very healthy baby. We had rather frequent ultrasounds and those showed a thriving healthy baby with a strong heartbeat. At 14 weeks we excitedly went and got an ultrasound for a gender determination and were told we were expecting a bouncing baby boy. We were thrilled...
the weeks went on and we were just as excited. We got to 16 weeks and had a doctor appointment and they said my little boy was great, he had a strong heartbeat. My doctor told me all the worrying I'd done about a miscarriage or a loss was silly and how I should see that now. I started to believe her, nothing was going to happen now. I was past the point where my child had died in my previous miscarriage, nothing was going to go wrong, my little boy was healthy.
Come August 13th 2014, two days ago, 21 weeks exactly we had a routine prenatal appointment and Ultrasound. I woke up thrilled I texted friends and told family "We get to see the baby today!" I was so excited. We got to the appointment, my boyfriend and mother right along with me excited to see the baby who we hadn't seen on an ultrasound in 7 weeks. "Olivia" the ultrasound tech who'd seen me many a time called and I bounced up excited to see this boy. I lay down on the table to get the warm gel spread across my bump that I'd become quite proud of and the promise of seeing my little boy bouncing on the screen. As soon as she pulled up the screen I saw my baby and his heart beating away. I felt a warmth of joy and love pour over my body as I looked at the black and white image of a baby on a screen. She moved the wand around and asked if I'd had the 12 week screen for Down Syndrome. I told her yes and asked why she would ask that... She told me that the back of my baby's neck looked thick, she said it could be nothing but kept looking she looked scared. The more she looked the more worried she looked, she told us that things weren't right and told us she saw some enlarged kidneys and that my amniotic fluid was very low and she couldn't get a clear picture. She told us something was for sure wrong and would talk to our doctor. Over the next minutes we were hurried into another room and all the doctors and nurses in the office were staring at us, the OB walked in and said we needed to see a Perinatologist immediately and she just looked shocked. We were under the impression that my child had Down Syndrome or something similar. After a lot of work we got an appointment to be in 3 hours.
Those hours crept by... I told Ethan (my boyfriend) that if our son had Downs that we would deal with it. It was better than the alternative that babies with Downs were a blessing and it wasn't what we expected but it would be okay. He agreed. When we got to the Perinatologists office we were sat in a large ultrasound room with a woman who said she'd point basic things out but not tell us of anything she saw or didn't see medically. She took pictures for over an hour and then told us that she would get the doctor in. The doctor came in and introduced herself, sat down at the machine and started talking to us as she looked at my baby who now had the hiccups that I could not only feel but see on the screen. She told us that I had little to no amniotic fluid and that my child was very sick. I asked straight out "Is he going to die?" she gave me a sad look and said "If you're asking me if I think your child will be stillborn, my answer is no. If you're asking me if I think your child will survive long after birth I would still have to say no." "So yes? He's dying." I said "Yes" she said. I burst into tears as did my mom and Ethan looked just shocked. This was not happening, just hours ago we'd all been thrilled that we were seeing our baby and now he was dying. She explained what she saw and pointed things out telling us that our child had a rare form of a rare disease called Cloacal Dysgenesis. We were heartbroken, brought to a geneticist, stuffed full of overwhelming information and told about a procedure that we could opt to have done the next day.
What my child has is an extremely rare disorder with an even more rare strain of it. A pregnant mother will produce amniotic fluid for the first few months in pregnancy while the baby is developing the ability to swallow and pee. Once that happens mom stops making it and baby takes over by drinking the fluid, filtering it through their kidneys, and peeing it out. It's a big cycle. My baby did all that perfectly except my child has no openings too pee from, actually my child has no genital openings at all. No anus, no urethra, nothing. Meaning my child drank all of the fluid and it has no where to go. The bladder is overly full, forcing fluid into the bowels and enlarging the kidneys from working so hard. There is also a curvature in the spine because of this and there is some fluid surrounding the heart because of all the strain it has. She said she could see no genitalia on my child because of the lack of amniotic fluid and the position baby was on and that tomorrow we would see more. My baby has no chance of survival because not only are all those problems there but babies practice breathing with their amniotic fluid and it matures their lungs. The most critical developmental weeks for lungs are 16-22 weeks. My child had missed almost all of those weeks with no fluid meaning that they will not develop at all and that when my baby is born there won't be much air that can get through. Baby will likely live for an hour and a half and then die, that there is nothing they can do.
We decided that the next day we would come in for an Amnioinfusion and and Amniocentesis. Most people have heard of an Amniocentesis, where they stick a long needle through your belly into your uterus and pull out some amniotic fluid with DNA in it to test on. Those are very common. What is not very common is an Amnioinfusion. That is where the stick the big needle in and put in fluid so they can get a better picture on the ultrasound machine. So were would have a lot of liquid put in and a little taken out and then a long ultrasound to get a better look at everything going on with my baby.
We went in yesterday... I was nervous as hell. I'd been through hell learning my child had certain death the day prior. They put in the fluid and as we watched on the screen my baby got more room in there and a lot more visible. They pulled out about two tablespoons of liquid for the amniocentesis and then took out the needle and began scanning. What they had seen was right, my child was dying. The doctor told us that the person probably told us the wrong gender and in fact we're having a girl. That the woman probably messed up because of swelling. She said she isn't 100% sure that we will be that sure when DNA comes back but that she sees nothing boy about my baby and multiple girl things.
Have you ever seen a plastic bag with something in it and then all the air gets sucked out and you basically vacuum sealed the item in the bag? That's what my uterus is like with no fluid, the baby is squished and has no room. So she had a lot more room to squirm and wiggle with the water in there and she loved it. She was kicking and moving like crazy. They told us the liquid they put in there would absorb in about 12 hours so we would probably never get another great ultrasound of her face. Our doctor lovingly spent almost an hour getting us cute pictures of our baby since we would not get this clear of a picture on ultrasound probably ever again.
So that was a lot more catch up than I planned on doing but that is where we are now. With the same opinion from an OB, two Perinatologist's and a neonatologist. This will continue to be about my choice to carry my daughter to term even though I know she will die and my struggles with all of this as it comes. I'm left here now numb, furious and heartbroken.
Sorry if there were a lot of grammatical errors in this, I did not feel like proof reading.
