Ava Justice Castañeda-Norman Ava Justice

In late September 2018, Sonja and I found out that we were pregnant with twin girls. We knew we were pregnant but TWINS -- this news was unexpected and maybe even a bit overwhelming.  Nevertheless, we were very excited and started preparing ourselves for the busy year ahead.

Twin pregnancies are inherently high-risk and generally include more pre-natal doctor visits than the average pregnancy. We were diagnosed with di/di twins - the most common and least risky kind of twin pregnancy. The pregnancy proceeded normally and at our last ultrasound in early December the girls were doing great. We had another doctor visit scheduled in early January and proceeded to prepare for the holidays with family and friends.

In mid-December, Sonja began to grow very quickly. She put on several inches over the course of about 10-days and was becoming increasingly uncomfortable. At first, we thought that this was just a part of having twins. It's commonly reported that many women pregnant with twins are the size of a full-term pregnancy by the end of the second trimester. That's exactly where we were. Still, Sonja was feeling increasingly bad and on Wednesday, December 19th decided to go in to the hospital to make sure everything was ok. That evening, Sonja was sent home with a mild case of dehydration and advised to drink plenty of fluids and get some rest. She did so and felt somewhat better but something was still not quite right. On the evening of Sunday December 23, Sonja got out of the shower and discovered that her upper legs were extremely swollen. We returned to the hospital immediately returned to the hospital and got some rather devastating news.

We were told that we were misdiagnosed with di/di twins and that our twins were in fact mono/di -- this meant that our babies were sharing a placenta and at risk for (and now suffering from) a condition called Twin-to-Twin Transfusion Syndrome. TTTS is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies. One twin - the donor - becomes dehydrated and develops low blood pressure, while the other - the recipient - develops high blood pressure, produces too much urine and overfills the amniotic sac. This discrepancy often results in one of the twins being less developed than the other. This was certainly the case with our babies. Along with the other issues the girls were experiencing, one baby was about twice the size of the other.

After a couple of days of monitoring, it became clear that the best course of action was to deliver our babies immediately. And so on Christmas morning, the first day of our 26th week of pregnancy, Sonja had an emergency C-section and Ava Justice and Lucía Bird were born. Both of our girls survived the delivery and were transferred to the Neonatal Intensive Care Unit. Ava weighed just shy of 2 pounds, Lucía weighed a little less than 1 pound.

Our girls were very premature, they were also very sick.

There were a host of concerns for the girls, the most immediately pressing of which was getting their breathing and blood pressure under control. An ultrasound of the girls brains were also performed to assess any brain damage the girls may have sustained.  It took about a week of different medications and procedures before Ava was finally in stable condition and could be moved out of the critical care section of the NICU. Lucía was still in critical condition. The doctors were treating her with literally every single intervention they could, all at once and still she was barely responding. 

During this period, the results from the head ultrasounds came back. The ultrasounds were meant to measure two things: the amount of bleeding in the brain measured on a scale of 1-4 and the presence of any cysts or "holes" in the brain matter, places in the brain which did not receive adequate blood flow in the womb and had essentially died. Ava's bleeding was about a 2/4 and she had sustained 1 cyst in her brain. Lucía's results were much worse and we would soon have to make the most difficult decision of our lives. The doctor's told us they had never seen the amount of brain damage that Lucía had sustained in a baby so small. On a scale of 1-4 her bleeding was a 5. She had extensive cysts in her brain. The doctor's told us that there was a 0% chance that Lucía would ever lead anything resembling a normal life. She would likely need assistance breathing and eating her whole life. She would likely never become responsive. They told us that they would do everything in their power to keep her alive if that was what we wanted but that it was time for us to consider not only what caring for a child in her condition would mean for our family but also what the experience of life would be for Lucía. She was still in critical condition and so was eligible for something Comfort Care. The doctors would disconnect her from her IV, remove her breathing tube and allow her to live out her remaining hours in the arms of her loving family. 

On January 5th, we said goodbye to our beloved Lucía Bird. She passed peacefully surrounded by her mother, father, grandmother and the aunt she was named after.

For baby girl Ava, it is still a day-by-day journey. She has had a few good days in a row so our spirits are high but we also know that we are in for a rollercoaster ride. Here we will post periodic updates about Ava's progress and any thing else we might like to share with our family and friends during this difficult period.

We have been floored by the outpouring of love and support we have received form our friends and family all over the country and can't tell you how much it has meant to us to feel so supported through such heartbreak. We love you all. Thank you.