Wednesday, May 29, 2013

Aubree Grace

We received wonderful news the first weekend in February. Our second baby was on the way. We had been hoping and praying for a sibling for DD. I anxiously awaited the first few weeks. Having lost my first pregnancy at eight weeks, I was really nervous until I had my first doctor appointment. Once we got to hear the baby's heartbeat and my blood work came back perfect, I finally started to relax and enjoy just being pregnant. Ok, I could have done without the morning sickness, but overall I was enjoying the process. I had been a nervous wreck the whole time with DD and never really enjoyed just being pregnant. This time was going to be different.

We passed the first trimester and made our official announcement to family and friends that our new little pumpkin should be arriving in October. Just in time to celebrate our fourth anniversary. We had kept everything from DD and intentionally purchased many things as gender-neutral as possible so they could be used for several kids to come. DH and I started to pick out names. Boys names are still something we can't agree on. But just like with DD, we found one single girl's name that we both loved. We were excited to find out the gender at the end of May so I could begin shopping all the summer garage sales for boy clothes if we needed to. I made an Amazon registry for the handful of items we would need for another baby. We started planning out arrangements for DD's room since she would need to share in our tiny house.

The last day of April I went for my routine 16-week checkup. I checked out just fine, but something was odd about the baby's heartbeat. The doctor still couldn't pick it up on the dopplar, so she took me in for a quick scan. What we saw was a beating heart, but even in my extremely limited knowledge of anatomy I could see something was very wrong. The doctor set up an appointment with the diagnostic imaging center for a better look the next morning. At that appointment we learned our baby's heart was not functioning correctly. The ultrasound technician had the actual doctor come into the room to explain to us what was happening. The next morning we were sent to the maternal fetal specialist for a better scan of the heart and more details on where to go.

The maternal fetal specialist confirmed our baby's heart was not functioning properly. They gave us an initial diagnosis of situs inversus (reversed organs), HLHS (under-performing heart chamber), and complete heart block (malfunction of the heart's pace maker). The doctor did an amnio test that day to see if these defects were caused by genetic factors or just random chance. Over the next two weeks we got the results of those tests back in pieces. What we learned is that our baby was fine as far as the genetics were concerned. We also learned that we were having a little girl.

Aubree Grace

Three weeks after our initial specialist appointment, we had another at the same place to see how Aubree was growing. Her growth was right on-track, all organs were present, and things seemed to be going ok. Except for her heart. The heart had started going into heart failure due to all the complex issues. The functioning muscles of the heart were trying to compensate for the under-performing muscles. This resulted in thickened walls of the heart that could not beat properly because they were too stiff and spongy, causing an even lower heart rate around 80 bpm. Due to the heart not working properly, fluid was starting to accumulate in several places within the baby - in the chest cavity around the heart and lungs, and in the belly. The doctor told us her chance of survival was almost 0% barring any kind of miracle. But just to be sure, he consulted with a pediatric cardiologist.

A week later we had an appointment with the pediatric cardiologist. We learned the initial diagnosis was not quite correct, but the issues present were even more severe than originally thought. Aubree has heterotaxy and several resulting issues. Her heart rate was down to only 50 bpm. Her belly is swelling with fluid, and the accumulation around her heart is causing it even more distress. Even if she could survive to full-term she would need complete reconstructive surgery on her heart and the arteries & veins. They recommended that we continue my normal course of care with the OB I typically see, and recommended palliative/hospice care for Aubree.

This month has been one hell of a roller coaster. I feel like we have lived several years in just the span of a few weeks. We went from excitedly expecting our second baby to facing the heart break of realizing we will not get to bring Aubree home with us. Through it all, DH and I have grown closer together and our faith has also grown. For now we will enjoy the times when we get to see her on "camera", we cherish our pictures, and we plan for the day when we have to say hello and goodbye at the same time. I love her kicks and flips.


  1. You're staying strong through it all. I'm praying.

  2. Sarah, so sorry to read this. You guys are in my prayers and I'll be praying for little Aubree's miracle! God is the God of miracles and the Great Healer.

  3. Grace to you. I am also pregnant right now with a little girl whose heart stopped beating a month ago. Her name is Avelyn Grace. Not sure if you chose your daughter's name before or after the news -- "Grace" is Avelyn's middle name because I needed it. Whatever the timing, I imagine you need the same. I am so, so sorry. It is obvious that Aubree is loved and has exactly the parents she needed -- even if it feels like it is killing you in the process.