In fact, I will be 16 weeks pregnant on Wednesday. But who's counting? Oh yes, all the doctors and nurses.
I know that there are probably more unusual/exciting ways to tell you but I am not big on announcements and so far this pregnancy has brought enough of its own excitement. I think that you will see why as you read on.
I went in for a routine 1st OB checkup at 9 weeks. For some reason the nurse/midwife that I went to does an ultrasound at 11 weeks. I assume this ultrasound is for due date estimation purposes? I actually don't really know. I was supposed to have this ultrasound at 11 weeks but we were going to be out of town and I was a week off in my estimation. So at 9 weeks I had an ultrasound. Luckily, Phil met me at the office for this first appointment.
Everything seemed to go fine in the ultrasound room. The tech chatted with us and took pictures of the baby. We kept saying "does everything look alright?" She kept saying "everything is measuring properly." At one point she asked if we were there to see the high risk doctor? I told her that we were going to see the midwife who is actually the opposite of high risk. She said a few more normal things and chatted about a triplet ultrasound that she had done that week and handed us a strip of baby pictures and sent us out of the room.
We sat together in the examining room and waited for the midwife to show up (we had never met her) and I handed Phil the strip of photos for him to hold. Shortly, the nurse/midwife walked in and introduced herself and another nurse that was observing for the day. To be honest, my memory is a little blurry after this point.
Right off the bat, she told us that she had bad news about the baby. She showed me an ultrasound photo, that was not in our strip, that showed a long white strand laying next to the baby. She then proceeded to use words that went way over my head but I caught a few things. This strand could either be a leak (possibly a lymphatic system leak) or a string of brain developing on the outside of the body. Then she showed me some find of extra growth on the back of the neck and said that it was a sign of chromosomal abnormalities. I later realized that the growth was a neural tube translucency. In the haze of words and medical terms I remember hearing her say that they would like me to come back in a week for another ultrasound and she didn't expect the baby to have a heartbeat. Then she gave me the rundown of what to anticipate with a miscarriage and said there was nothing else that they could do and I should just go home and live my normal life and sent me over to the office next door to meet with the high risk doctor.
Phil and I barely had time to look at each other or say a word. We walked like zombies into the high risk doctors office and sat down. I think that we quickly realized just how blessed we were to have two previous pregnancies that were uneventful and produced 2 healthy boys. We were in shock. The high risk doctor basically told us the same things as the midwife. He said that in the days before ultrasounds this pregnancy would have been a 12 week unexplained miscarriage because there was a strong healthy heartbeat and the baby was growing and developing properly. He then gave us a 1% chance that this baby would have a heartbeat the next week and told us that even if our baby did have a heartbeat it would have serious chromosomal issues that were life threatening. We told him that we were leaving for Madison Wisconsin and he told us to "go and have a good time" and gave us the name of a OB in Madison that he had worked with previously just in case we needed a doctor on our trip. Then he sent us on our way with a follow up ultrasound appointment to check for a heartbeat 10 days later.
Phil and I walked out of the office in complete shock. What do we do now? Should Phil go back to work? Do we call family and let them know? Phil climbed in my car and we cried a little and then parted ways. He went back to work and I went home to relieve my mom, who was watching the boys, and tell her the news.
"A person's a person, no matter how small"
For the next few days we really went on with our "normal life" or tried to at least. I felt really strong and courageous at first. I understood what to look for in a miscarriage and if that was inevitable I was ready to go through with it. Weird I know! We even went to Madison together as a family. I admit it was a nice aversion from the "normal life" that they wanted me to have. Amazingly, I still had support thanks to my smartphone. I had communication with friends and family everyday through phone calls and email. I was even able to do a little reading online and found some miscarriage forums and felt encouraged reading other peoples stories.
When we got home from our trip my mom gave me a book about healing and prayer. I started reading the amazing stories of present day healing and felt encouraged although I had no idea what to think about our situation. I had already read through the stories of healing in the Bible and felt nothing. My baby could be dead already and I would not even know it. My prayer to this point had been for God's will and that He would protect and take care of this baby in His perfect way. The day before the ultrasound I started to pray for a miraculous healing.
We went to the follow up ultrasound on Monday June 20th. I had some anxiety going into the appointment but I also felt peace. I felt blessed to have a sting of ultrasound photos of my live baby and I was going to see my baby on the screen again. Maybe for the last time. The high risk doctor did the ultrasound himself with the midwife standing by. It was very fast. We could barely see what was going on. We did see the strong heartbeat again the baby was moving all over the place! Both the high risk doctor and midwife could not believe it! The doctor said some medical terms to the midwife, showed her the cystic hygroma that was in the head and printed out this photo for us to have and told us to meet him in his office in a few minutes. Phil said "what is going on here" and the doctor said: "Well, I believe this is a little girl with one x chromosome." What???? He could tell all of that from one quick look????????
You can see the cystic hygroma in the ultrasound below. The head looks very large. They kept saying it looked like a halo. There is fluid trapped in a pocket underneath the scalp. The doctor never said how big it was but I think that it looks fairly large in proportion to the body and it looks septated to me which is supposed to be more serious than non-septated.
The high risk doctor first talked to us about the rainy weather (what? we are small talking right now) and proceeded to tell us that our baby was a little girl with Turners Syndrome. He explained that normally girls have two X chromosomes and sometimes in the stage of cell division one of the X chromosomes is missing or incomplete. He then explained that the cystic hygroma was a sign that something (heart, kidney, etc.) was not developing properly and that eventually, as the baby's body took over more of the work of survival and my body did less, that the undeveloped organ would just give out. He estimated this happening around 16-18 weeks of pregnancy. He said that up to that 16 weeks he could still do a D&E (a procedure that removes the baby under anesthetic) but after that he would have to induce labor to deliver the baby. He told us that 49 out of 50 babies with this condition do not make it past 20 weeks.
The doctor then told us our options and alluded to termination. He was dancing around the topic and confusing us so finally Phil said "Are you talking about termination?" He said something about him being "trigger happy" and said that he could not recommend termination for us as this point because things were very unclear. (What? Because he seemed pretty clear in his description?) He said that he would do whatever I wanted. He could end everything now (so that I could move on with my life) or he would go with me to the end. He told me that there was no threat to me physical health, only emotional. He recommend that from here on out we did a weekly ultrasound to again, like before, try to catch the stopped heartbeat. We didn't even have to talk about it. We were staying the course and set up an ultrasound for the following Monday.
Why? Because "a person's a person, no matter how small"
So I went home and Phil went back to work. We alerted our family to the new developments. Even though we had been given bad news again and no hope from the doctors WE WERE HOPEFUL! The baby had a heartbeat!!!!!!!!!!!! We saw our baby moving around and he/she had grown! We also thought that we were having a girl! We could actually make a girl! We could name her and tell our families about her. We also had a diagnosis: Turners. I looked online that afternoon and found a foundation for girls and women with Turners. There was a collection of photos of sweet little girls that looked normal to me but all had Turners!
We stayed the course and kept praying. LOT'S of people were praying. More than we will ever know! Thank you all for that. We realized that the more people we told about our story the more support we had and the more prayers were being said. We were put on prayer lists and my Bible Study ladies prayed and cried over me. Cards and emails of encouragement were coming in everyday! I was humbled completely to my knees. My prayer was changing and evolving. My prayers were coming from a place of desperation and thankfulness both at the same time.
By the end of the week I did something that I had not yet done. I researched cystic hygroma and found a discussion board on babycenter.com. I started to read stories of people going through the same things that we were going through. It was a huge encouragement and came at a much needed time. Moms and dads had posted their hopes, fears, tragedy, and success! Yes, I said success!!!!!!!!!!!!! For this first time since that first ultrasound I was reading stories of babies diagnosed just like mine that were survivors. And get this, not only were they survivors but a lot of them were perfectly healthy!!!!!!!!!! My attitude started to change again. There really was hope even when the doctors said there was none!
On June 27th we went in for another routine ultrasound to check on the heartbeat. I found I was less nervous sitting in the waiting room. I had decided in my head that this whole situation was not a quick fix and realized that we were going to be doing this every Monday for most of the summer. And really, I was okay with it. We had already decided that the duration of life was unknown to ALL human beings not matter if you are 9 weeks in utero or 99 years on this earth. We believe that God has a plan for all of our futures no matter how short or long because:
"A person's a person, no matter how small"
I laid down for the ultrasound and the high risk doctor came in and while he was setting things up we small talked again. I was wearing a Bethel Sweatshirt and he noticed it and told us that his wife had graduated from Anderson College. So we talked a little about that and told him that we had both gone to Bethel and met there. He then told us that his wife was a doctor too. Suddenly we had moved from sharing professional information to personal information. For the first time we knew something about him that made him seem more human and just a normal guy doing his job.
He started in with the ultrasound and found the heartbeat right away. He poked around and said nothing. Phil and I just looked at the screen. There was our baby, again, moving all over the place with a strong beating heart. Finally, the doctor said: "Now this is really freaky." When he said that I felt like my heart stopped beating and that I might just throw up all over the machine. "What NOW?????" I thought. Phil, like always, said "What is going on?" The doctor said something like: this looks like a normal and perfectly healthy baby. Again, he said "This is really freaking me out." The doctor then said: "If this was your first ultra sound, I never would have suspected any kind of problem." The tears started to come for me and no words. He then said something about this being a miraculous recovery and that prayer must have been involved? I shook my head yes to him and probably actually smiled at him for the first time ever. He then said that he didn't want to get our hopes up and that we shouldn't go and decorate a nursery but that he no longer worried about the heart beat. He did say that he wanted to keep an eye on the heart because of the fact that we had all seen the problems with the leak and the cystic hygroma. So he told us to come back in 2 weeks for another ultrasound and told us to enjoy our summer!
We could tell that the doctor was thrilled! I was thrilled for him too because normally he is the bad news doctor and I was happy that he was getting to tell good news. He was so happy that when we all left the room together he announced to all of the staff that: "Rumors of this baby's demise were premature!" Everybody clapped. I wondered if maybe he was thinking that:
"A person's a person, no matter how small"
And the smallest ones sometimes prove to be the toughest and best fighters!
The ultrasound: No space helmet head and space behind the neck!
We left the office in shock! When have we not left this office in shock? So once again we called around and told family the good news. And we told them not to get too excited even though we were! People were coming out of the woodwork and telling us that they were praying! Again we went on with our summer.
On July 11th we went in for another ultrasound. I was feeling confident, finally! I was excited to get a chance to see our baby again. I also already knew that the baby had a heartbeat because I had started to feel the baby move around 12 weeks. I know it sounds crazy early but I knew what I was feeling was baby! Everything checked out fine on the ultrasound. No leaks, no fluid collecting anywhere in the body, and a strong heartbeat. The doctor was pumped he kept saying: "let's check on this miracle baby." Yes, let's! He even tried to figure out if he still thought this baby was a girl. He looked all over for boy parts and could not find any. "I'm leaning pink," he said "but don't go out and buy any pink yet or decorate a nursery." Well, we have heard that one before...maybe a little too much for our liking! It is so funny to me that with all of the technology and information out there, doctors still can't reassure you or tell you much at all?! It seems like they know just enough to really scare you.
The doctor did kind of apologize to us for the past month. He said that he only knows as much as he learned in medical school and what he has seen in his practice. He has no explanation for miracles and there are no statistics on them. Once again I was reminded that he is only human just like me. We thanked him for all of his help and he happily handed us back to the midwife. So a month after my first appointment they finally took my blood, gave me a due date and treated me like a normal patient.
So now, I guess that everything is back to normal again! I can feel the baby moving more everyday. I am feeling pretty great in general. The 2nd trimester has been good to me in the past and it is proving to be the same. The reality is that, depsite all of the ultrasound scares, this pregnancy had felt no different than my previous two. I have not had any unusual cramping or pain, no bleeding, minimal morning sickness (I get it in the evening) and a growing belly. I felt odd knowing that there was a problem but not actually feeling like there was one at all!
We are hoping that the rest of this pregnancy is uneventful but we realize that no pregnancy is a sure thing. Boy do we know that first hand now! I know this is a super long post with lots of info but I wanted to record our journey so that you all know what has been going on. I am also hopeful that someone that is going through something similar might come across this story and feel encouraged. And remember:
"A person's a person, no matter how small."
Click here to read about Bevin's birth!