Up to Date

I am trying to get this up to date. After we found out the diagnosis, I took off work for a week. I had already given my notice at work and my last day was about a week after I went back to work. It was so hard to go back to work because it felt like nothing else mattered. I had another job set up, but there were various problems and then credentialing needed to be done so I had a couple months off. I actually start my new job next Monday. I was glad to have that time, but now I am really nervous about going back to work. I have spent the past couple months crying more than I knew possible as well as loving my sweet babies as much as possible. Kendall is now two and she's such a blessing. If we didn't have her, I would have most likely spent the past couple months curled up in bed.  I've been trying to enjoy every minute with Gabriel. Brandon and my family and friends have continued to be supportive and helpful. I know no one knows what to say, and really there isn't anything anyone can say except to let us know they are here for us, praying for us, and supporting us.

We've spent the past couple months meeting with hospital staff from the NICU doctor, a nurse, and a genetic counselor. They have been very helpful answering any questions and giving us an idea of what will/can happen at the hospital.  We wanted to donate Gabriel's organs, but found out there were a lot of requirements that may not be met and we wouldn't know until he was here. They also told us that we would basically only be able to see him for a few minutes and they would have to take him to prepare for organ donation. I feel a little bit guilty, but I want to have as much time with him as possible. They did tell us we could explore tissue donation that could be taken even after he passes away. We've met with the funeral home, which let us know that they do not charge for babies under 1 year old. So that is a blessing as the only thing we will have to pay for is the plot, digging the plot, and the headstone. We bought a couple cute sleepers and hats for Gabriel. A photographer friend is going to bless us with pictures at the hospital so we can focus on spending time with our little man.

It's been really hard, but I've tried to hold it together as much as I can with Kendall around. I don't want her to think her momma just cries all the time. There have been a couple times she's been so extremely sweet and wise for her age I just can't believe it. During that first week after we found out about the anencephaly, Kendall and I were outside rocking in the rocking chairs on our front porch and I was silently crying. She said, "Mama hurt?" I told her, "No baby mama's okay, I'm just sad." I just held on to her so tight. Don't get me wrong, I want her to see it's okay to be sad and frustrated and to cry, so I don't hide it from her. I  just know she doesn't understand everything that is going on. We talk to her everyday about her brother being in mama's belly. One night she was sitting in my lap, which we call getting "cozy" and snuggling with her head resting against my belly. Gabriel was kicking, which made Kendall's head move and I told her, "Do you feel baby Gabriel kicking in mama's tummy?" She then put her hand on my belly and patted it. It was the sweetest thing. I was so glad her daddy was there to see her do that.

So while this is the most difficult and heartbreaking time of my life, there are still so many amazing blessings we have and I just have to remind myself of this daily, sometimes hourly.

Diagnosis Confirmed

We had a second ultrasound which confirmed the anencephaly two weeks after the first one.  I think from the beginning I knew I could not go through with "termination." My husband was trying to be very supportive and kept telling me it was my decision and he would be there no matter what. All I could think about was horror stories of partial birth abortions. We were told if we did decide to terminate the hospitals in the area would not do it and we'd have to go to a clinic out of state. We were told there was no additional risk for me to continue the pregnancy. My ob told us if we did continue, we would just keep appointments like regular. She stated if I did go into early labor, they would do nothing to stop it. She told us she would continue to monitor me and make sure everything was okay with me.

There were so many emotions and questions in those first few days and weeks. I just kept thinking the doctors had to be wrong because I don't smoke or drink and I wasn't taking any medications. I kept trying to remember if I had been taking my prenatal vitamins religiously for the three months before I got pregnant. I don't know that I did. I feel so horrible about that, because maybe if I had this wouldn't have happened.

Anyways, before we even had the ultrasound I told my husband that I couldn't terminate. I couldn't be the one to decide when our baby would die. I felt like we had to leave it all up to God. He agreed and was 100% on board. We told our family and friends and I am happy to say that we didn't hear one negative from anyone about our decision. I could only imagine how hard it was going to be to continue feeling our sweet baby, whom we named Gabriel Lee, growing and moving in my belly only to know he wouldn't be with us long after he was born.

Worn

Below are the lyrics to a song called Worn by Tenth Avenue North that I seem to hear often and I think it speaks to how I feel a lot of the time since we found out about Gabriel's anencephaly. Sometimes songs really seem to help me through whatever I'm going through.

Worn:
I'm tired, I'm worn
My heart is heavy
From the work it takes
To keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I'm tired, I'm worn
My heart is heavy
From the work it takes
To keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I wanna know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
‘Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I'm tired, I'm worn
My heart is heavy
From the work it takes
To keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left
( From: http://www.elyrics.net )

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I wanna know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
‘Cause I'm worn

I'm tired, I'm worn
My heart is heavy
From the work it takes
To keep on breathing
I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn

I wanna know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
‘Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

My prayers are wearing thin
I'm worn
Even before the day begins
I'm worn
I've lost my will to fight
I'm worn
So Heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that's frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
‘Cause I'm worn

Yes, all that's dead inside will be reborn
Though, I'm worn
I'm worn

Lyrics from <a href="http://www.elyrics.net">eLyrics.net</a>

Diagnosis

I have been toying with the idea of writing a blog, mainly as a therapeutic outlet for myself as we go through this devastating journey. I should back up a bit and start from the beginning. This pregnancy is our second child. I had to work on my husband a bit to get him to agree to a second baby since they are so much work :) So we weren't exactly planning this pregnancy. We were both very excited to find out we would be adding one more sweetie to our family. We found out the due date would be June 18, 2013. So that would put this one about two years and three months younger than our amazing, sweet, ornery daughter, Kendall. We waited the typical three months to tell people we were expecting. Everyone was excited for us and while I was wondering if we were crazy to add another little one, we couldn't wait either. So the pregnancy was proceeding uneventfully. I had nausea as I did with Kendall, but nothing too bad. My belly popped out pretty quick this time though!

We were really looking forward to our ultrasound to see our little one and find out if we'd be adding another daughter or a son to our family. I told my husband a day or two before that I was always so anxious before the ultrasounds or doctor visits until I knew everything was okay. We joked about freaking out about everything and it's always fine. Brandon's mother and her boyfriend were also present for the ultrasound. The ultrasound was on 1/28/13. We went in and the tech was showing us legs and feet and...boy parts!!! He showed us arms and the heart, kidneys, stomach, and the umbilical cord. He got up to the face and head, and looking back he got quiet, but at the time I didn't think anything of it. He kept saying it was hard to see the top of the head and the baby was really high up toward my ribs area. He finished up and then said he would have the doctor come in to get my blood pressure and weight. Brandon's mother and her boyfriend gave us congrats and left.

When they left the room, I told Brandon "something is wrong. We never met with the doctor before." He tried to assure me things were probably fine, but agreed it was strange. A nurse came in and took me to another room where she took my blood pressure and then took me to yet another room and told me the doctor would be in to talk with us soon. I was trying not to freak out, but had a feeling something was just not right. The doctor, a fetal medicine specialist, not my ob/gyn, came in and asked me about my first pregnancy and (oh I forgot we filled out a form about my first pregnancy and family history before he came in) family history of illnesses. He then stated that they saw something on the ultrasound that was extremely concerning. I was already crying at that point, I think. He asked if we had heard of anencephaly. I told him no; however, I was familiar with it as I had known someone whose baby was diagnosed with this. At this point, I semi heard what he said because I was thinking, "no no no this cannot be happening." He told us it was a neural tube defect where the spine doesn't close at the top so the brain/skull do not completely form. He stated it was terminal and there was nothing they could do. I think Brandon asked if the baby would make it and the doctor told him no. He stated that babies with this diagnosis typically live anywhere from a few minutes to a few hours after birth. He told us that our options included terminating the pregnancy or continuing with the pregnancy, but the outcome would be the same, our baby was going to die. He told us this happens within the first few weeks of pregnancy. He stated that it could be due to certain genetic conditions; however, that it is unlikely as no one in either of our families had any babies or pregnancies with a neural tube defect. He also stated that sometimes it can happen due to not taking enough folic acid prior to and during the first trimester of pregnancy.

We asked other questions, honestly, I cannot remember all we discussed because I was in shock at that moment. He set up an appointment for two weeks from then to get a follow up/confirmation ultrasound and he said my ob would be in touch to set up an appointment with me asap. We left the clinic. We then called our parents to tell them the most horrible news of our lives. I was so devastated to tell my mom that we were having a sweet baby boy who would not live.  We had been planning to go after the doctor visit and look at SUV's as two car seats would not fit in my husband's truck. I also thought maybe we'd go look at cribs and room decor since I knew we'd find out gender that day. Instead we numbly at lunch, went to pick up our daughter at daycare, and went home.  It was the worst day of my life.