ugh, the one I don’t want to write

On November 21, 2011 Cloudy and Baby and I went in for our 20 week ultrasound (at 19 weeks 5 days). I was so excited and nervous all day. We were finally going to see our baby for the first time. I just kept hoping all morning that we would see and hear only good things. I had to arrive with an uncomfortably full bladder and I took that very seriously. I had to pee pretty badly so the ultrasound technician did the measurements she needed to do and then let me use the restroom so that I could be comfortable as we looked at our baby. The ultrasound was fun and seemed to be going well; we could definitely see what looked like a beautiful healthy baby. The tech started by showing us everything she was looking at and all the measurements she was taking. It was amazing to see all the parts that had grown in such a short time. We were so happy and in love with our little one. There was a lot of kicking and movement, the baby kept putting its hands in front of its face as if playing peek-a-boo with us. I did notice that the baby’s hands were in fists the whole time but I did not have any clue that this meant that something might be wrong. The ultrasound seemed to be taking a while and I just assumed either the baby wasn’t cooperating or the tech wasn’t very good. She just kept coming back to the heart for measurements. At the time I didn’t mind because it meant that much more time looking at our baby. And, since it was our first time I didn’t know how long they usually take. She was able to print a few images for us.

We were blissfully ignorant which really allowed us to be completely joyful in that time before we got some devastating news. The ultrasound tech said that she had some difficulty locating one of the two arteries in the umbilical cord and that she wanted the radiologist to have a look at that and come in to talk to us. I don’t really remember the space between then and the radiologist coming in other than we were both silent. Cloudy went over to get the pictures and looked at them. Pretty soon the tech and the radiologist came back in looking sullen. I knew we were about to receive some pretty bad news. The doctor then proceeded to give us the list of abnormalities that were found in the ultrasound we just had. What? We don’t know what to look for but we certainly didn’t see any abnormalities. Here is what they saw that was a complete shock to us. The hands were balled in fists and not able to open, the heart was not measuring correctly and showed signs of a defect, there was only one umbilical artery instead of the normal two, the baby had a cleft lip and a cleft palate, and there were several choroid plexus cysts in the brain. It’s still a lot to take in even as I type it five months later. We were certainly taken aback and we wanted to know what was next and what we could do for our baby. The radiologist explained that with a list as long as this the baby most likely had a chromosomal abnormality and we would need to see a fetal medicine specialist. We would be able to see one in our small town but they are only there once a month.

With this news in hand we made our way to the midwives office to see when this specialist would be in town and if they could see us. This is the only time all day we had any good luck, the specialist happened to be there that very day and could fit us in. We made our way over to the OBGYN’s office and I was up on the table having another ultrasound. This was the tech we had seen at previous appointments, she did not want to know any of the information we had been given so far so that she could look and measure without clouded judgment. The specialist came in and helped and guided the ultrasound from there. Finally she sat beside us and told us what she had seen. She verified all the things we had been told before and said this this most likely indicated a trisomy disorder. She explained that she thought it was not trisomy 21 (Downs Syndrome) and was most likely tri 13 or tri 18. Her next statement is what changed our lives forever. She said both of these trisomies are fatal. Our baby would not live outside of my body. She gave us our options from there and suggested that we have an amniocentesis performed to be sure. So we did. She used ultrasound to guide a needle into my belly and amniotic sac to retrieve some fluid. There was slight pain and some cramping but really it was not nearly as bad as I expected. Because it was the week before thanksgiving our local lab would not be able to get us results until after thanksgiving so this doctor offered to fly the amniotic fluid home with her to the big city to have it tested in her lab to get us results before the holiday weekend. I am still touched by this gesture and completely grateful to her for doing this for us. She really was fantastic to have at our sides during this time. She was very knowledgeable, compassionate, and available. We asked a few more questions and then were walked back to the midwives’ office.

At the midwives office we were made to wait and then to recount our afternoon to the midwife who had nothing consoling to say. This really disappointed me. We just wanted to go home. I think she should have satisfied her curiosity with the reports she would be given and not by asking us what was going on. I don’t think we will be going back to this practice in the future.
Looking back I am grateful that the initial ultrasound took over and hour and that we got to have another one done at the specialist, because in a way, this is the only time Cloudy and I got to spend together with our little one and acknowledge our family. I do feel like I spent months with the baby since I was carrying it, but Cloudy didn’t really have that and it was his only chance to know his child. So, even though those few hours in doctors’ offices were the most horrific, they were also some of the most magical and special minutes we had.

The first thing I did was call my mom. I couldn’t even talk to her I was crying so hard but she was just what I needed. She always is. I’m so grateful to have a mom that I can talk to about anything. She always knows what to say. I hope to be a mother just like her someday soon.

We went home and went about our week and tried to wrap our minds around what we had just been told. Actually, truth be told, I tried not to wrap my mind around it and tried to figure out how to change what we had just heard and hoped like hell that we would get a call saying that there had been a mistake and that our baby was just fine.

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9 thoughts on “ugh, the one I don’t want to write

  1. Wow. I can’t imagine how devastating that must have been to experience. It’s crazy what a roller coaster you can go through in just a few hours…

  2. Ugh. This has me in tears. I cannot imagine how you felt in that moment. 😦 I am SO sorry you and your family had to experience tragedy like this.

  3. I have been reading along all week knowing there would be a post coming that would reduce me to tears hoping, somehow, that I was wrong. I wish you never had to write this post and, even though it is lovely to know you, I wish you never had to start this blog. I am so very sorry to read what you have been though and what you have had to endure. I hope that joining this community will give you some of the support you need.

  4. Wow you are all such beautiful souls to open your hearts to a stranger like this. Thank you all for being so supportive. It makes me feel like I don’t have to carry this by myself.

  5. Your words brought tears to my eyes… my heart goes out to you as you re-live that excruciating day. 20 week scans are meant to be filled with joy and hope… I know what you feel after our 20 week scan showed our Gabrielle had passed away… but ours wasn’t. So unfair and so painful. Thinking of you xoxo

  6. Ugh, this is so so hard to go through. I’m so so sorry for this awful news. You describe it so beautiful, even in that pain you got to see your little one and can now appreciate that time despite what it revealed – so many mixed emotions for that memory. You are definetly not alone.

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