1st Level 3 Ultrasound Poor Diagnoses

October 22nd 2010: 1st Level 3 Ultrasound
We woke up at 5:30am to get ready for my appointment. Becca, Angela and Audrey were still out of school because of the Jim Wells County Fair so they and little Ernie would be staying at my sister in laws during the appointment. We picked up my hubby on the way. He went to work early so he could open the shop. On the drive there, I thought the worst part would be finding out our baby indeed had down syndrome and possibly to what degree it would affect her quality of life. I was pretty nervous. We dropped the kids off at my sister in laws and went to the doctors office that was less than 5 minutes from where she lived. When we got there I filled out the paperwork and didn't have to wait very long before we were called back. The ultrasound tech was very nice. She answered the questions she could. She asked what we knew about the baby so far and we said the extra skin fold on the back of her neck and her thigh bones being short and that she might have down syndrome. Almost immediately she asked if anything had been said about a clubbed foot. Our babies left foot is clubbed. She looked at her mouth 4 or 5 times and said she wasn't closing her mouth. Which meant she wasn't swallowing properly. She kept her hands up by her mouth so it was hard to see that area. She said there might be something wrong with her chin too. But once again it was too hard to tell for sure with her hands there. I like to think about this and know that she already knew what was comfortable and where she liked her hands to be. I have the ultrasound picture with her hands like that and it looks like she's praying.

Continuing on, she has edema on almost all of her body.Which is fluid built up under the skin. Her chest is very small, they called it bell shaped and her heart takes up most of the room in her chest. Her arms and legs are very small. Her head measured at 31 weeks where her extremities measured at 22-26 weeks.
The doctor was out of the country. So after the ultrasound we met with one of the counselors to talk about the results of the ultrasound. And the crazy thing is I actually know her. Our daughters played together when we lived in Corpus. I had no idea she worked there. But I was so relieved we were able to talk with a friend, not just someone we didn't know. She told us our baby could have a genetic problem. Maybe even missing a chromosome or having to many. She suggested an amniocentesis to test for genetic abnormalities. She talked about her chest and lungs. She said since her chest is so small it could mean her lungs haven't developed properly if at all. So the best thing would be for her to stay in as long as possible to give her lungs time to hopefully develop. At this point hearing that she has down syndrome would be amazing! Her diagnosis is much worse. We also went over both of our families medical histories and scheduled the amnio and our next Level 3 ultrasound for 2 weeks later. When we were done I went in the bathroom and cried. I felt like throwing up. Like I was all of a sudden living in this bubble. I wasn't even sure I could walk out to the truck. I just sat there and cried and my hubby hugged me. We talked and prayed for our baby. I called my mom and told her. She told my dad and sister. We went to pick up the kids and my sister in law asked how it went and I had to tell her our baby, her niece, most likely wasn't going to live. I was numb the rest of the day. Emotionally drained. It felt like the whole world was spinning aroung me and had no intention to slow down for us. I had talked to a bunch of family members. Relaying the same information over and over again. It never felt like it was me talking. It's amazing the stupid things people will say! But the amazing people I will always be so grateful for! My best friend drove 3 hours to come spend the weekend with us. So she could be with me. So I could talk and cry. I am forever thankful for you Kristen!! And my mom and dad were in the process of getting my mom here to help and be with us.

October 23rd 2010 - The day we named our baby
This morning we woke up and my hubby told me he had a name for our baby. Hope. It fit her perfectly!! So her name is Hope Elna Lockhart. He had dreamed about it. I shared her name with Kristen and she had said something to me the night before. She said "You just need to hold onto hope." And she liked the name Hope. Then I told my sister and her and my brother in law Erik had thought of Hope also. I love that so many of us thought of that name and that Daddy named his little girl!

October 25th 2010 -
Today I called the genetic counselor to tell her I wouldn't be having the amniocentesis. Since the best thing for Hope is to stay in utero as long as possible then we don't want to take the risk of premature labor from the amnio. We are putting our trust in God not some test. So she told me that her and the ultrasound tech were talking about the edema and that one reason could be that Hope's heart isn't working very well and that her heart could be enlarged. And that could mean she could pass even before delivery. That there could be a day when Hope stopped moving. Those were hard words to hear. So I told her that Hope moves a lot and she said that it was good. She also let me know that the doctor was still out of the country but would be back for my next appointment.
After hearing that Hope might stop moving, I became even more thankful for every movement from Hope. Every nudge that let me know she was still ok and still holding on.

Jeremiah 29: 11-14
"For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity, to give you a future and a hope. Then you will call upon Me and come and pray to Me and I will listen to you. You will seek Me and find Me when you search for Me with all your heart. I will be found by you.

1 Peter 1:25
But the word of the Lord endures.

From Kirsten:11-1-2010
It is only by thinking about great and good things that we come to love them, and it is only by longing for them that we come to long for them, and it is only by longing for them that we are impelled to seek after them and it is only by seeking after them that they become ours.

In my next post I will go over our 2nd Level 3 ultrasound and what happened when we finally were able to meet with the Genetic counselor who was out of the country.