20 weeks

Today has been a bittersweet day. I am 20 weeks pregnant today. Usually 20 weeks is a big milestone because it means you are half way through your pregnancy. But for me half way to her birth also means half way to her death. I had my 20 week ultrasound today also. Which went really well! The ultrasound techs that I had were awesome and took a lot of time showing us every inch of her and answering our questions as best they could. Good news is that my amniotic fluid levels are perfectly normal so far. Ella had fluid in her stomach and bladder so it looks like she is swallowing a least a little.

We got a good look at her defect and it looks like her skull stops right above her eyebrows in the front and at about ear level at in the back. That is good news! I was hoping for some skull in the back so that maybe she will have some soft baby hair that we can get a lock of. We got 4 good pictures. Two pictures of her little feet, a potty shot, and a cute picture of her little hand. Unfortunately I didn't get any pictures of her face. I was hoping for a good profile shot. I know the tech got some good ones so I am hoping my doctor will make me a copy of a few of them. Her heartbeat was a steady 154. She kicked and moved and tried to keep her hands in front of her face the whole time!

But all in all I was just glad to see her and see that she is doing ok in there and to know she is growing like she is supposed to. Jacob and I were truly happy and excited for our ultrasound today and we thoroughly enjoyed it. We laughed at the silly things she did and smiled at how big she is getting. I hope that is how her birth will be. That we will just be so happy basking in the beauty and wonder of our daughter that we won't have time to think of all the sad and difficult days to come. That we can just absolutely enjoy or daughter while she is here.

A few pictures of Ella:


A picture of her little foot.


She has her index finger up. She may also have her thumb out giving the "loser" sign!Lol!


This picture was from our 16 week "fun" u/s to find out Ella's gender. This is the only good profile shot we have so far.

Pity Party

I am having a bit of a pity party today so you will have to bare with me. I had my regular 20 week ultrasound scheduled for this afternoon. I had made the appointment over a month ago before we had gotten Ella's diagnosis. At my last Dr's appt my doctor had said it was up to me whether or not I wanted to keep this appointment. Jacob and I both said we did. We were looking forward to seeing our little girl and hoping the ultrasound tech could show us exactly where her defect starts and that we could get a better idea of what to expect to see when she is born. I was also looking forward to getting some new pictures of her. Our doctor said that was fine. So my mother in-law took off work early today to watch our kids. Jacob met me at the imaging center and we went in to our appointment.

I went up to the counter and told the lady my name and that I had an ultrasound at 4 o'clock. "I'm sorry but I can't find you on any of our schedules." I told her that I had made the appointment several weeks ago. She called and talked to someone in a different department. Apparently someone from my doctor's office had canceled my appointment the day after I had gotten Ella's diagnosis! I had the lady call and talk to my doctor's office. My doctor's office said they were sorry for the misunderstanding and to go ahead and reschedule my ultrasound. But of course they couldn't squeeze me in today so now I have to wait until Thursday! It was all I could do not to burst into tears at the imaging center!

It just seems like nothing is going our way lately. It's one thing after another. I had been on pins and needles all day anticipating this ultrasound and what we would see. I was excited to see our baby girl again but also nervous about getting a closer look at her defect. I was anxious for this ultrasound and anxious for it to be over at the same time. And then when I realized it wasn't going to happen today and had to talk myself down from bursting into tears and scaring the poor lady behind the counter! It would be nice if just one thing would go like it is supposed to!

So anyway, I have to do it all over on Thursday. So now my mom will have to take off work to watch the kids and Jacob will have to take off early. I will have to drink another 32oz. and hope my bladder doesn't explode! And hopefully this time I will actually get to see my baby and get some answers. So I am a little bit crabby today and having a bit of a pity party. I also have my 20 week Dr's appointment on Wednesday so I will try to update then and then again after my ultrasound on Thursday. Sorry that I don't have anything more exciting to report today. Tune back in later in the week!

Appointment

I had my first OB appointment since Ella was diagnosed last night. I was a little bit nervous about it because the doctor I saw at St. Anthony's talked like my doctor may not want to deal with Ella's problems and may want me to transfer my care to St. John's. Well, that was not the case! My doctor said it was totally up to me but they would love me to stay with them. He said there was nothing more that they could do for her up there. It will mostly just be comfort measures for Ella and I and making sure we get to spend as much time with her as possible. I was really glad because I didn't want to have to deliver in a strange hospital with a new doctor.

I also had my regular 20 week ultrasound scheduled for the 26th of this month. I wasn't sure if I was still supposed to go to that since I had just had an ultrasound last week. My doctor said it was up to me. So we are going to go and see our girl again! I am hoping the tech can show us exactly where her defect starts so we can get a better idea of what she will look like when she is born. My doctor also gave me all of the ultrasound pictures that they had of Ella in my chart since I didn't get any at my last ultrasound!

He did say that my fluid levels were already on the high side which is common when carrying an anencephalic baby. A lot of times the baby cannot swallow the amniotic fluid so it builds up. This may cause my water to break early. I am hoping to carry her as long as possible so I may have an amnio later on in my pregnancy to drain some of the fluid. Baby's born after 37 weeks have a greater chance of surviving the birth and being born alive so we will try to do whatever we can to get to that point. So all in all my appointment went well and I feel much better knowing that I will get to stay with my doctor and deliver at the same hospital I always have!

The Beginning

Easter of 2010 my husband Jacob and I learned we were expecting our 4th child. We were a bit surprised by this news. We had planned on having another child at some point but weren't quite expecting it to happen this soon. We have 3 other children. Our son Brighton was 5 at the time. Our daughter Lily was 3 and our youngest Lilah was just getting ready to turn 2. I had my first OB appointment at 6 weeks and the ultrasound showed a little round blob with a good heartbeat. I had ultrasounds at my 8 and 12 week appointments and everything looked good. At my next appointment at 16 weeks we heard the heartbeat on the doppler ( a strong 157) and they scheduled my level 2 ultrasound at 20 weeks.

I was a little too impatient to wait another month to find out the gender of our baby so I talked Jacob into letting me schedule a elective ultrasound for the next Monday to find out if we were getting a boy or girl. That Monday was the 5th of July and Jacob was off work due to the 4th falling on a Sunday. We took the kids to Six Flags that day and on our way home stopped at the ultrasound place to learn our baby's gender. The ultrasound tech was very nice and informed us that we were having a baby girl! She showed us her tiny toes, her strong heartbeat (151) and her spine. When we left we got 2 pictures, a potty shot and a full length shot that wasn't very good. I told Jacob " I wish we would have gotten a picture of her face."We left the appointment happy and ready to start preparing for our baby girl. Jacob had to run in the mall after our appointment and get something for work so while we were in the elevator I said to him " I really like the name Ella". "That's it" he said. "That is her name. I knew I would know it when I heard it and that's it"! So Ella she became!

The next morning at 9am I got a call from my doctor's office. They told me that someone from the elective ultrasound place had called them and said they had seen something "concerning" on my ultrasound and they wanted me to have a repeat ultrasound the next day at a bigger hospital in the city. I was worried sick! They didn't give me any idea what they thought was wrong. I called Jacob right away and he said he would take off the next day and go with me. He assured me it was probably just a mistake. The next morning we arrived at the Perinatal center and they brought us into the ultrasound room. The tech started scanning me and from what I could see the baby looked perfect. She was kicking and moving around like normal. We could see her arms and legs, her heartbeat looked good. We were trying to make small talk with the tech who seemed very serious. Jacob said something like" I told my wife that it was probably nothing to worry about". The tech looked at us and said " I am sorry but it is something much more serious than that". "See how the bones in the baby's legs are a bright white. And the baby's arms. Now look at the baby's head. There is no white. The baby has no bone in her head. And that can't be fixed." She told us that what our baby had was called Anencephaly. It was a neural tube defect that was not compatible with life. She left us alone for a few minutes to go get the doctor so he could talk to us. We were in complete shock. We both cryed.

When the doctor came in a few minutes later he told us that the baby should survive until birth. That it was my legal right to terminate if that's what I wanted to do but being that they were a Catholic hospital they could not help me with that. They said most babies with anencephaly only live for a few minutes to a few hours. The doctor and the tech were very kind and tryed to explain everything the best they could. They asked if we had any questions but we could hardly form a complete thought let alone think of any questions to ask. They gave us both a hug and told us if we needed anything or had any questions to give them a call. We wondered out of the hospital and to our car. We rode home in silence, both of us crying and not sure what to say. I was dreading going home to my mother in-law who was watching our 3 other children. The last thing I wanted to have to do was tell someone this awful news. Actually telling her wasn't as bad as I thought. Our son Brighton could tell from all the tears that something was wrong. We explained to him that our baby was very sick and that she would have to go to heaven to live with Jesus right after she is born.

My mother in-law called my father in-law and he left work and came straight over. We all just kind of sat in silence until late afternoon when they left so we could get some rest. I told a few family members and friends that day and word slowly got out. I have never felt such an outpouring of love and support. The good thoughts and prayers from people all around have definitely lifted us up and let us know how much we are loved. And how much Ella is loved. We are going to carry our girl to term or as long as she is living. We are going to enjoy every precious second she is in my belly and whatever time God gives us with her in our arms. I don't know what the next few months hold for us, how it will test our family. But I do know that this is the road God laid out for us and we are going to walk it in faith.