Posted (Tina) in All Posts on April-9-2009

Ella slept okay last night. Several times, the pulse oximeter alarm went off, so I had to run into her room. At times, it was not apparent what was wrong because her numbers looked fine. When I woke up after getting up several times, I realized that it had to be her cannulas out of her nose. That is the only way that the alarm would intermittently continue to alarm. This happened more than once which made for a less than restful night.

She tolerated her feeding therapy and physical therapy today quite well, which was good to see.

Today was a rough day. We’ve been holding off on our news: I’m pregnant. I’ve been exhausted and sick for weeks now. We had our big debut planned with a cute shirt for Ella to wear bearing the phrase, “Big Sister”. Our hearts were anxious, but we know that we can trust the Lord and that there are never accidents; He always has a plan.

Well, we went for our first trimester screening this morning (I’m 12 weeks, 6 days) and received devastating news. It does not look like the baby is going to live. It has severe abnormalities and defects that make its life not viable including but not limited to: a chest cavity that is not fused placing all organs external to the body (liver, heart, bowel, etc.), fluid on the brain with large portions of the brain not formed, a skull that is open with brain matter floating in the amniotic sac too.

As you might imagine, this came as quite a shock to both of us. I had been holding out hope that our baby would be healthy, but had reservations due to our experience with Ella.

At this point, we just need prayer. The heartbeat is still there and beating quite nicely outside the chest cavity. We are told that there is 0% chance of survival; this is a lethal birth defect. As was the case with Ella, we are told that this birth defect is extremely rare (1:15,000 live births) and that they do not know what causes it and it is not genetic-based. As the perinatologist shared, “I feel like lightening has struck you twice.”

Hearts are heavy at the West home, so support and prayers are the best that we can ask from all of you at this time. We need wisdom and guidance from Him. And at the same time, we are so thankful for our beautiful baby girl that we get to enjoy each day.

We don’t always understand His ways, but hope that this experience too can be used to help other families and be an instrument for eternity. God even used this experience already this morning, when we were able to minister to my OB/GYN. He had to share devastating news with us, but we also accepted it and shared our faith with him. He let us know that our faith has touched his heart. And he became emotional and shared that this reminds him of Job’s experiences recorded in the bible and yet even in the midst of the worst trials, Job had these words to share:

Job 19:25 (NIV)
I know that my Redeemer lives…