It has been a trying couple of days for Phet and I. The story starts with a routine checkup last Thursday, then a morning ultrasound on Friday. Continuing on, we have an entirely unexpected emergency C-section on Friday afternoon, leading to the birth of our daughter, Emma Mahatsachan Pease: a 6 lb, 18.5 inch baby girl, at 1:09 PM, to much fanfare and the adulation of all involved. Roughly 5 hours later, Emma was transferred to Neonatal Intensive Care at our hospital, Scripps Mercy. The doctor told us that she was very sick, with platelet levels of a tenth of those of healthy newborn as well as a long list of other issues such as poor oxygenation of the blood and dangerously low circulation. 2 hours later, she was deemed too severe for Mercy and was transferred to the NICU at UCSD Medical Center in Hillcrest. 12 hours later, she was transferred once again, this time to the NICU at Children’s Hospital, under suspicion that she had some sort of structural problem with her heart.
Starting with the ultrasound on Friday, all of the above events took place over a time period of roughly 30 hours. Everything about Emma’s birth and her subsequent escalation through the neonatal intensive care establishment occurred pretty much as depicted above: without warning or benefit of other helpful context.
If that’s all there was, this would all be so much of a downer that I probably wouldn’t have brought it up. However, Emma’s story continues.
Phet and I were first able to see our daughter together on Saturday at the NICU of Children’s Hospital. To put the matter in some context: this was about 30 hours after Phet had had major abdominal surgery, and yet there we were, stuffing her from a wheelchair into our car to make the drive to the hospital. To make things even more exciting, the Children’s NICU closes down to visitors at 6 PM and we left at about 5:50 PM (the nurse had called saying she wanted to speak to us, in person, STAT). We had a hazy idea of where Children’s was located, but NO idea of where the NICU was located.
At 6:10, we were in the NICU visting Emma, Phet in a wheelchair and the car illegally parked outside in the valet lot of the hospital. Emma had a disconcerting number of tubes connected to her body, and she lay very still as a ventilator handled the work of her breathing. I knew that she already looked better than when I had previously seen her in intensive care at the previous hospitals, but I was concerned that Phet might be unprepared to see her this way. As I wheeled Phet closer, her first words said upon seeing our daughter were “She’s beautiful.”
The nurse’s urgent news was that Emma had been stabilized. She explained that a baby’s circulatory system works differently when it is inside the womb from when it is outside the womb. For Emma, she said, the circulatory system outside of the womb has a defect, where the main artery that transports blood to her lower body essentially has a kink in it, preventing blood from circulating properly. This condition would, unfortunately, require heart surgery to repair. In the meantime, however, they are able to trick Emma’s circulation back to it’s pre-birth configuration by administering hormones, which then acts as a built-in bypass, sending blood around the kinked area. Essentially, they hotwired our baby to buy some time for a more considered surgical response.
That visit was several days ago. We have visited every day since, and Emma’s condition has noticeably improved each time. They have gradually turned down her blood pressure drugs and ventilators each day as her body has grown stronger and her signs of infection decreased. They have removed her from most of her sedatives, and she is now moving her arms and legs and reacting to touches from her parents in encouragingly baby-like ways. Extensive scans have been run on all of her major organs, and none of them (except for her heart) appear to have any problems.
Further, it is difficult to express the degree of responsiveness and expertise that we have seen from the staff at Children’s. I can call and speak directly to our baby’s nurse 24 hours a day, and can visit her 20 hours a day. During our visits, we speak directly to the doctors who have been working with her (we have so far met nurses, physicians, cardiologists, geneticists, and infectious disease specialists), and they have explained Emma’s status and have answered all of our questions. We have a social worker who calls us several times a day to MAKE SURE that we don’t have any questions or needs that aren’t being attended to by their staff.
Very shortly, our baby will be having open heart surgery, which is ALWAYS risky, even for the best surgical staff at the greatest hospital in all the land. However, Phet and I both know that we are very lucky that our baby even has that chance – for the vast majority of people on this Earth, this baby probably would not have survived childbirth. She is in the care of an amazing group of people, and that goes a long way towards giving us hope for her recovery.
So that’s what we’re thinking about this Thanksgiving. We love you Emma, and look forward to bringing you home.