Sunday, October 13, 2013

Our Sweet Little Baby

I recently caught you up on all the excitement and joy that has been my life over the last several months. The absolute, hands-down, undeniably best part of everything has been the excitement and anticipation of new life, our first child. I have been wanting to write down all about my pregnancy thus far and what it was like when we first found out but now I don't know where to start...

Our child has been loved before we even knew it was inside me. Days before I took a pregnancy test I was fairly certain it would be positive and I fell in love. Love is a funny thing and it never ceases to amaze me. I have never been a mother before but somehow I feel that bond that can only be felt between a mother and her child.

Patrick was elated. I have never seen him so happy. He had one of those "Oh my God, is this really happening?" moments, but in a good way. There are really no words to describe those feelings. I remember every detail of that night we found out that we were going to be parents.

Up until a few days ago, it had been a relatively uneventful pregnancy. No morning sickness, very rare nausea and food aversions. I ate well and exercised semi-regularly and about a month ago I finally started to see the change in my body. I thought I would hate seeing my body change but it was a welcome change. It meant my baby was REALLY in there and growing big and strong. I was just thinking the other day... Man, pregnancy has been a piece of cake!

But it can't all be good. Something told me that something wasn't right. It was having symptoms of any kind at all. I just had this gut feeling. I'm a pretty intuitive person, more than most people I've realized. So when the feeling didn't go away I had to take matters into my own hands. I, a very flexible and not at all demanding woman, demanded an ultrasound.

After a lot of reluctance from my OB they got me scheduled for that day (this last Tuesday). I made quick plans for someone to cover for me a work and I left to get the ultrasound. The tech was very nice,  young girl that could not have been more than a year or two older than me. I asked how long she had been doing this and she said 5 years. "Good", I thought, "Maybe she has enough experience to know what's wrong." As I stared at the screen and watched my little baby squirm around I saw, with my untrained eyes, exactly what was wrong. A few tears ran down the side of my face but she didn't see. She was concentrating. She saw it too. I don't know a lot about ultrasounds and I don't always know what they are looking at but I knew that this was not normal.

I asked her about the apparent sac of fluid on the back of my sweet baby's head and neck. She acknowledged that it was there but I knew (being in the medical profession myself) that it wasn't her job to tell me what it was. I already knew anyways. It took a long time. Longer than I even expected. She seemed to have trouble getting good pictures. But eventually she finished up and I wiped the gel from my lower, slightly rounded abdomen. She left the room and my eternity started.

I must have looked at my watch a million times in the 20 minutes it took the Radiologist to come back to talk to me. But he finally came in, introduced himself and sat down. A concerned look came across his face like he was searching for the right words. I already knew though. He said, "There was several abnormalities on the pictures." The tears came immediately despite my every effort to hold them back. He handed me a box of tissues and continued with the diagnosis of Cystic Hygroma and Fetal Hydrops. I continued to cry but managed to explain that I already knew what that was. He talked about the pleural effusions and acsites which are really just fancy medical terms for excessive fluid in the lungs and abdominal area, respectively. The words heart failure were mentioned and the difficulty visualizing the kidneys because of all the fluid.

At one point, I must have been really crying because he asked if I wanted him to stop. But I didn't. I needed to know exactly what I was up against. He was a very nice doctor and I am sure that is not the news he wanted to give. I cannot tell you how much I appreciate the concerned looks and the honest way he spoke to me.

Telling Patrick was the worst thing. I tried to put my emotions aside so I could explain everything I knew to him but my heart was broken. Patrick managed to get off work to go to a Perinatologist appointment with me the following morning. My OB wanted me seen right away, and I found their urgency even more disheartening. The drive there and the 30 minute wait in the waiting room were awful. Patrick and I knew based on the findings that terminating the pregnancy would be suggested. I didn't even want to hear it. I know to most people its an option but its not an option for us. We don't believe in that. I was shivering with nervousness, which I only remember happening a few times in my life. Finally we were called back.

They skipped the sonographer and cut right to the chase by bringing the Dr in to take a look. I liked him right away. He was very matter of fact with us and explained that this was a very severe case. He explained that many babies aren't able to pull through it but that he has seen it happen even in severe cases. He told us that there was a pretty good possibility that our sweet baby as a chromosomal abnormality. Based on what he saw he was fairly certain it's a girl which led him to think maybe Turner's syndrome. From here on out I will probably refer to the baby as a girl, just FYI, even though it is not 100% certain. I just can't say "it" anymore. Even if I find out its a boy in a few weeks, that would be OK. I just can't say "it" anymore.

The doctor said, "I am getting the feeling from you guys that termination is not an option." He said it as a statement. Hallelujah! Thank you, God. This doctor gets it! Patrick and I both knew it was an option but neither one of us wanted a doctor to suggest ripping the life away from our precious baby. We love her too much. And the Dr went on to explain what can be done, which is very little as it turns out.

So here is the plan: We pray. The odds are not in our favor and we understand the reality of the situation but medicine cannot fix what is happening to our little angel. We hope for a miracle, that things will spontaneously reverse despite the severity of the situation. We realize that if by some miracle our baby makes it to term that there is a strong chance she will not be most peoples' definition of "normal" and she may not be with us for very long but please, God let her live. Let me hold her in my arms and tell her how much I love her, at least for a little while. And if it is Your Will that she go to be with you in heaven, I will find a way to accept that.

It has been a rough week. My emotions are off the charts but I have found some peace. I know I cannot look too far into the future because I am really just praying for another day for my little girl to live. One day at a time. Tomorrow I have a regular OB appointment and my prayer today is that there is still a heartbeat at the office visit tomorrow. That would feel like such a huge victory at this point when I feel so defeated and helpless. I love my sweet little baby and I am not ready to let her go.

I know that there are only a small handful of people that ready this blog and it has never been my intention to have followers but if you somehow stumbled upon this blog, will you please pray for us?For me, Patrick and our sweet little baby. Add us to your prayer list maybe? I strongly believe in the power of prayer. It is my comfort right now. I'll try to update the blog after tomorrows appointment.


  1. Oh Hilary....there are no words. Praying for you & Patrick, for a healthy pregnancy, and your little bundle of love.

  2. I am so sorry to hear of this news.

    My sister's first miscarriage of her marriage was a baby that had cystic hygroma. He also had a chromosomal abnormality (Downs Syndrome). There is an organization here in Kansas City called Alexandra's House. They counseled my sister over the phone (she was in Milwaukee at the time) and I have referred other people to them and they are so wonderful (website:

    Please be assured of my prayers.