Our sweet Emmy is two weeks old now! She was born on March 20, 2019, weighing in at 6lbs 7oz, and 20in long. After she was born, they took her straight to the NICU to make sure she was stable. They did her first echocardiogram as well as an abdominal ultrasound to look at her other organs. Her heart is stable, and so far, there are no issues with any of her other organs! She was at St. David’s for the first 24 hours, and then they transferred her to Dell Children’s Hospital for a CT scan of her heart. The doctor’s wanted to get as clear of a picture as possible, and St. David’s doesn’t do neonatal CT scans. John was able to ride with her in the ambulance, and my doctor discharged me as soon as we knew she was going to be transferred. We got to Dell on Thursday afternoon and really had no idea how long we would be there. Upon arrival, they immediately started prepping her for the CT scan. The CT confirmed everything about her heart that we had been told during pregnancy, meaning there were no new findings! The radiologist diagnosed her with polysplenia (multiple spleens), however, the neonatologist was skeptical of this diagnosis so she called in an infectious disease specialist to consult (Infectious disease doctors manage splenic issues). Polysplenia is very common in Heterotaxy patients and generally doesn’t cause any major problems long term. The infectious disease specialist, Dr. Murphey, was also a little skeptical of the polysplenia diagnosis so he ordered another ultrasound and a blood test that looks for the presence of splenic antibodies. After reviewing the ultrasound, Dr. Murphey said he saw what looked like a normal sized spleen and a little extra splenic tissue. We are still waiting on the results of the blood test and will be following up with either Dr. Murphey or an immunologist within the next few weeks to confirm whether or not she truly has polysplenia. With all of that said, even if she does have polysplenia, it’s really not a huge deal in the long run!
Come Friday morning, the neonatologist who had been following Emmy came in and said that we would be going home Saturday morning! We were in shock! According to the cardiologist who followed us during pregnancy, most Hererotaxy babies are in the hospital for at least a week or two after birth, so that is what we were expecting. We never thought that we would be going home after just 3 days in the NICU! Praise God!
We had our first appointment with the cardiologist, Dr. Wong, last Friday, and he was happy with how she is doing! He and our pediatrician, Dr. Temple, will be keeping a very close eye on her. We will likely be seeing at least one of them every week or every other week for the first couple of months. We see Dr. Temple next Thursday, and Dr. Wong next Friday. So far, Emmy is completely asymptomatic. You would never know there is anything wrong with her heart by just looking at her. It’s normal for Heterotaxy kids to start having symptoms around 3-4 weeks old, which is when the pressures in their bodies have normalized. Around this time, many babies start having trouble eating and breathing can become more of a chore. It’s common for Heterotaxy kids to need a feeding tube at some point before their surgery, but we’re praying that she continues to eat well and that we don’t need to go that route!
We are so grateful and thankful for the outpouring of love, support and prayers that we have received! Each and every prayer has been felt, and we truly couldn’t be more thankful for the way that our family, friends and church have rallied around us!