Dr. Leigh is Good to Me

I had a dream last night that I was in labor... all night. Julia Roberts & Howard Stern made and appearance in my dream. I even got mad because I had to clean the house while in labor before I went to the Hospital. These pregnancy dreams are really weird. To say the least, I did not get a restful night sleep last night. I can still feel the pain of labor.

With every new Dr. appointment I feel a sense of anxiety waiting and wondering how the baby is doing this week. I was excited to talk to Dr. Leigh and I was not disappointed. First she wheeled in the little ultrasound machine they have and we had a look see at the baby. She is getting big and almost filled the whole screen. I was at a funny angle and could not see the screen very well so I propped up my head and then asked her to raise the machine up because I could not see through her arm. She offered to just cut it off so I could see and  I was fine with that. We could see the baby move her little arms and legs, when Dr. Leigh said it was cute my heart just melted. It was cute. I am not sure why we have not seen much movement at our other appointments but she was really moving around today.

After we saw the baby was doing well and was OK I talked to Dr. Leigh about how I felt working with Dr. Kennedy. She said maybe I didn't understand what Dr. Kennedy's roll was in my pregnancy. She told me that Dr. Kennedy was there to consult with me during the initial diagnosis and if there are any changes in the future. Dr. Leigh is still my Dr. for this pregnancy. When Dr. Kennedy told me I did not have to come back it was because there have been no changes and there is nothing for her to consult on me with. Now, I did not know this. Dr. Kennedy is a high risk pregnancy Dr. I thought that meant me. It really means high risk mothers. She is a Dr. to women who have health problems that pregnancy could put them at risk. 

I have asked twice about my pregnancy plan and what my appointment will look like in the future and I was not clear how this was going to work. Maybe nobody new how this was going to pan out in the next few weeks, so nobody really new what the future was going to look like. Little Gemma has made it farther than expected since her diagnosis. So now we all can settle into a future plan and see how it goes.

The nurse gave me the paper work on how to get a social security card, birth certificate and stuff like that for the baby. We also were given a manual breast pump as part of the new health care initiative. I was not expecting these thing so early in the pregnancy. When the nurse left the room I started crying. I could not even look at them. When Destry asked me what was going on I choked out that we might not even need those things. It is really hard to be realistic and remain hopeful and positive at the same time. We are doing the best we can. Dr. Leigh said we don't know what will happen with this pregnancy. It is true. We don't know. She said she has seen all sorts of good and bad outcomes where Dr. Kennedy just see's the bad. I felt Dr. Leigh was really optimistic and I was so happy to find that she was still my Dr. and I would be able to continue to see her.

We left Dr. Leigh's office feeling really good like always.

Sometimes a Girl Just Needs Her Mom

It has been two weeks since we found out the Gemma's Hygroma was a symptom of her Turner's Syndrome. A diagnosis that just compounded her situation for the worse. We have had time to read and talk and research and wonder what all of this means. Now I just wanted my mom. We drove the three hours over the pass as the sun was going down. It glowed bright pink from the smoke of the wild fires. It was amazingly beautiful so we stopped and snapped some pictures along the way. We arrived late but that did not stop us from staying up late and just talking about Gemma and all about what she is going through and what that means for her future. Everyone has comments on how strong I am as I talk about this. I think it is because I don't know any different. This is my experience with pregnancy. I don't have a pregnancy to compare it to. So I don't know what I am missing. It is like the women who morn infertility as they try for their second baby. They know what they are missing when they can't have a second baby. 

Each ultrasound appointment I get a little more anxious. I just pray I have more time with her and her heart is still beating. The technician took many pictures and we could see the Hygroma from an angle we never saw before and we both new it was bigger. She asked me if I wanted a picture and she printed off this picture for us. While I appreciate the one eyed Halloween skeleton picture as she waves at us with one arm I was not charmed by it. Destry and I both thought we did not get a very good picture this time. The picture were so beautiful last time. I look at them and wish Gemma a good day and good health every morning. So after she left the room I thought about it a little and then started crying. This might be the last picture of her that we get. So I jumped up and went and found her. I was crying and telling her I was not happy with my picture, that this might be the only pictures of my baby I get. She ushered my back to the room and worked really hard to get me some better pictures. I was happier with some more pictures and I was glad she was open to helping me.

Gemma Hope, 16 weeks 1 day

(wave hello)

Afterword we waited for Dr. Kennedy in the exam rooms. She came in and told us the Hygroma and Hydrops looked worse. Then she told us that the social worker talked to her about us wanting to focus on the positive aspects of this pregnancy. Then, she said we did not have to come back to see her any more. She said I could just go to see Dr. Leigh to monitor the heart beat if I wanted. ????? I want to come back and I told her so. This is the only place I can get these wonderful level II ultrasound pictures. And at some point the babies heart is going to be big enough to see if it developing properly. I get the situation is dire but don't be so obvious that you don't have any hope. Five minutes later we were out of there. I scheduled my next two appointments. I will make sure I get the good pictures the first time around. At twenty weeks she will look at her little heart to see if it fully developed. As we walked to the car I realized how peeved I was. I really wanted to click with Dr. Kennedy but at this point I am not willing to put any more energy into it. I will be talking to Dr. Leigh next week. I am hopeful she can recommend another Dr. or a plan that will work for me. Until the next appointment in two weeks we wait.

We Love Her, We Want Her

I am not Cystic Hygroma.

I am not Hydrops.

I am not Turner's Syndrome.

I am Gemma Hope!

14 weeks 2 days

In love with her little legs.

In love with those little hands.

(That crater in her head is normal at this stage. Just in case you were wondering.)

The Wait is Over......... For Now

Destry and I boarded a plane Wednesday morning with great excitement. We were off to California to meet baby Isla for the first time. I could not wait to get my hands on my new little nice. I was not disappointed, she is the tiniest, most beautiful and perfect little baby girl.

Imagine my surprise when I got the call from the genetic counselor on Thursday announcing that my CVS test results had come back already. That was exactly one week from the original test. They had told me it would take two to three weeks for the results to come back. I never imagined they would come back so soon and I new that was not a good sign. I locked myself in a room as the genetic counselor told me my results came back positive for Turner's Syndrome. She was trying to tell me what Turner's Syndrome was and that with a Cystic Hygroma these babies often don't make it to term. When I said to her, so that means I am having a girl? Of course I am having a girl. I know that. I just really wanted someone to tell me I was having a baby girl, not that I has having Turner's. She mentioned I had time to decided what I wanted to do and scheduled a follow up ultrasound appointment for me. 

I shared the news with Destry. He had followed me in the room and was holding my hand the whole time. We cried and hugged and we new this meant more waiting and hoping. Then we had to walk out of the room with tears in our eyes and share the news with our waiting family. They were all sitting there waiting with nervous looks on their faces because I am sure they could hear me crying. I hate that I received this news when we were all together to greet little Isla into this world. I so did not want to take any attention away from this wonderful time with such confusing and uncertain news. I hate that everybody feels so bad about all of this. My hope is that with a little time our hearts will heal and we can all look forward with love, joy and excitement. I can just see it on everyone's face... the sorrow. That is why we have chosen not to tell our acquaintances at work. I really need the people around me to be so excited and happy for us and our baby. I have to work so hard to be strong I just can't be strong for everyone.

I cried all night and then all morning. Any surge of emotion that included tears triggers morning sickness and I really had not felt so sick my whole pregnancy. I carried a plastic bag with me all day because if I was going to throw up for the first time that was going to be that day. Then Dr. Leigh called. Said her heart was broken after all we had been through. Asked if we decided what we were going to do. When I told her at this point we were going to let nature take it's course she said that studies have shown that delayed decision making has been a good thing. I realize that we are really on our own when it comes to supporting this pregnancy. We are going to be seeking support from like minded people and professionals. I don't want to have to keep explaining that we really want this baby.

I don't know why this is happening to us. I am not a very religious person. Allowing my faith to guide me and giving this journey to god has been a relief to my spirit. I would be miserable if I spent my time trying to figure this out. Because there is not solid answers to this. I do know that this is God's baby and he has given us the honor of taking care of it. We are going to love and care for this baby girl for as long as god allows us. That night Destry and I gave our baby girl her name. We are excited to share some happy news.

We love you,

Gemma Hope

You will always be our little jewel, we have all the hope in the world for you.

I Reserve the Right to Change my Mind

I was surprised how accepting I was with going forward with a CVS test. I had thought that I was fully prepared to have a child with disabilities without any intervention. When I found out that our baby showed physical signs of problems I immediately wanted to know what it was. I realized that it was much more complex than just imagining that we would love our baby no matter what. I imagined our baby could be like the cute Downs Syndrome kids you see bagging groceries at the store giving their co-workers high fives and say "Yah Buddy". Our baby could have serious heart or kidney problems. Our baby could have to have emergency surgery at the time of birth. Our baby could have organs growing outside of there body. We could have to delivery by cesarean do to the size of the growth. The list goes on. I feel it is important to know as much about our baby as we can right now so we can prepare and so the doctors helping us can have the best information available to treat our baby.

I was generally anxious about the appointment but I imagined the procedure would be similar to IUI. I checked in and went straight to the bathroom. Turns out I needed a full bladder for the procedure so they brought me a full glass of water and told me to drink. I felt bad for slowing them down because they really had to shuffle patients around to get me in this week. I lay there with everyone standing around me watching my bladder fill on the ultrasound screen. Finally the Dr gets started and inserts the speculum. OMG it hurt so bad Destry said I went white and thought I was going to pass out. I had her take it out, I shifted my pelvis down a little and we tried again. I think with a full bladder those muscles are so tight they just down't want to let go. I was fine after a minute. I would have stayed there for hours with a full bladder if we could continue to look at the baby on the screen. The Dr then said she dropped the cotton balls on the floor and would have to use the "scratchy" gauze pad to wipe off my cervix. I said, can't you get some more cotton balls. There has to be more cotton balls in this place. The nurse and assistant even commented at her description the the gauze pad. Turns out the gauze is not as "scratchy" as she described. I was able to see the catheter work it's way to my uterus on the screen and it was over before I new it. She showed me the sample and showed me what looked like good sample pieces. Then sent us to talk to the genetic counselor. She was quirky and sweet and told us nothing we didn't already know. I think her main goal was to discourage our request for the faster less reliable FISH testing. We conceded to wait the 2 to 3 weeks for the full results. Now we wait.

The baby was laying on it's side with it's back to us. We were not able to see the little legs and arms move around like last time. We did however get this super cool kind of weird little scull picture. 

We Need All Your Prayers

Baby 12 weeks 1 day

Destry and I went to our genetic ultrasound appointment with great anticipation. He was very confident and I was very nervous. We were called back right away, the technician got us all situated. We watched the screen with great excitement as we watched our little baby appear on the screen. There it was, the baby was moving it's little arms and kicking it's little legs then arching it's little back. It was so animated Destry could not believe that I could not feel it. It was very surreal. It is hard to believe your pregnant when you can not see or feel anything. Yet, there it was our little active baby, looking so wonderful and perfect to us.

The technician said very little to us. She was patient as she waited for the baby to get in just the right position to measure the skin on the back of the neck. She mentioned the baby had a nasal bone and that was good. After a time she left us to wait for the Dr. to come and talk to us with this little picture on the screen. I just stared at it the whole time I waited. There was the little measurement line still on the screen. It measured from the little crease in the babies neck straight down to the bottom of the placenta. I did not understand what that meant. I wondered why the measure the blank space. I did not ask why.

The Dr. came in and explained that my blood test had come back and showed no elevated risk for abnormalities. I said great but what did the ultrasound show. She explained that they measure the skin on the back of the neck. An above average measurement indicates a Cystic Hygroma. A Cystic Hygroma is an indicator for chromosomal abnormalities. Then she said my baby has that. I don't remember the exact measurement but instead of the skin being a few mm thick the measurement was almost an inch thick. You can clearly see in the picture the black space under the babies neck is a large cyst. In fact if you look you can see it in the previous ultrasound picture also.

The Dr. offered us a CVS test the same day. I was in such shock and trying so hard not to break down and cry that I passed on the test. I thought at the time that I would do an amnio test if I felt like that was the right thing to do in the future. The genetic counselor was busy with another patient so I took her number in case I wanted to talk to her later. We left and hugged and cried in the hallway then we went to eat some lunch. We went through all the normal feelings that you go through when you experience a trauma. 

When I let go of conventional fertility treatments I made a promise to myself and to God that I would have faith in his plan for me. That I would not try and play god anymore. That I would be the best me and the best wife I could be with or without children. Even though I do not understand why this is happening to us now after all we have been though. I do know that I don't have to understand. I just have to believe that this is the path we are meant to be on and have faith that good will come from this.

If god can give us one miracle he can give us two.

Babies First Pictures

4 weeks, Baby is size of a poppy seed.

   

6 weeks- Yolk Sack, Baby is the size of a lentil bean.

     

10 weeks- Babies head on the right. 

Those little spots over the body are arm and leg. 

Baby is the size of a kumquat.

Today we took the morning off from work for our 10 week appointment. I was scheduled to supply blood samples for our genetic testing and we scheduled out 13 week ultra-sound. At that point they will review all the test results together to determine our percentage of risk of having a baby born with disabilities.

I had to admit to Dr. Leigh that I was really anxious to find that everything was OK at this point. She agreed to do an ultrasound so we could see for our selves. At this point she was able to just put the ultrasound tool on my belly to see and measure the baby. We immediately saw a little black blob and a little baby body. But my fear made me blurt out "I don't see a heart beat." Dr. Leigh calmly said she needed to focus in first and when she did we could see a little flicker of a heart beat. 

Baby has a good strong heart beat and measure a full 11 weeks even though I am only 10 weeks and 4 days. Dr. assured me that at this point we would not change my due date. She said it like three times. I thought it was weird because I know exactly when I got pregnant and don't understand why three day growth difference at this point would change anything. 

It still seems unreal to me. I kept explaining on the ride to work my amazement that the baby was really there and growing. I really thought I would feel confident at this point to tell my friends at work. Yet, I found that I just reset my time line to after my 13 week ultrasound appointment. Maybe after a good night sleep I will feel more confident.