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.