May 25, Women's Hospital follow-up

The doctor's at Women's hospital had suggested we return for a follow-up in two weeks time. I dreaded going back, as I did not want to relive my last experience - it was too painful. I couldn't manage any more bad news.

Brendon seemed determined to keep the appointments, and I felt he needed to have the chance to be there and ask some questions. The first ultrasound I had gone alone and the second my mom had been with me, but Brendon had yet to be at any of the appointments.

We headed up to Vancouver late Tuesday night after Brendon got off work. The Burgess' drove up to Kelowna to watch the other kids. We arrived in Vancouver at 2am and were able to sleep for 5 short hours before we needed to be off to the hospital. I felt a little calmer this time going into the ultrasound. I didn't feel like the news would be all bad.

I must have a really efficient urinary system because they kept asking me to go to the bathroom. I explained that I didn't drink the extra water and I had already gone just before the scan. No wonder I had to stop at every rest stop as a child.

She began the scan and I closed my eyes. This scan was for Brendon .... I didn't want to sit there wondering what I was seeing. The routine was the same as the last time. The tech did her scan and took her measurements and Dr. Pugash came in to do some further observation. I did hear some positive things as she explained things to her resident, but what I did look at of the scan didn't seem as clear as the previous scan - which worried me. Once she was finished she sat down to talk to us. She started by saying there were two things that really concerned her. Not again, I thought to myself. How could things get any worse? She explained that Sayde's head circumference had only increased 8 days worth in 14 days. This dropped her to the 12th percentile for head circumference. The percentile was not the concern, but rather the trend. She explained that there can be error in measurements, but felt that the consistency in the tech and the machine from one scan to the next, would have decreased that chance for error. She explained that while this was not yet a big issue, if the trend continued it would be a cause for great concern. I started to fear that my baby was not going to survive. She then explained that she was seeing tiny cysts on the frontal and occipital horns indicative of periventricular leukomalacia. Brendon and I both knew what this was. She seemed very jittery and uncomfortable as she was sharing all of this with us. Brendon, thankfully, asked her outright why she seemed to be holding something back. She admitted that she didn't want to sway us. Sway us how?, was Brendon's response. I then explained that whatever she had to say was not going to influence our decision to keep the baby. She seemed notably relieve and expressed that that made things a lot easier on her. She then more comfortably went on to explain that the signs that she was seeing were still very subtle. She admitted that most other radiologists likely would not have even picked up on them. She explained that things actually looked much better than she expected to see after two weeks. She hoped that the head circumference trend was a red herring and would correct over time. She seemed slightly more positive and we felt the tiny bit of hope we had been praying we would feel. We talked about the plasticity of the brain and the inability to correctly make a prognosis especially this early in the pregnancy. The baby had undoubtedly experience a brain injury. The early effect are evident. Thankfully the effects have remained consistent over time and have not become worse (as they expected they would). The head size remains a concern. The prognosis remains unclear.

The perinatologist was also more optimistic at this meeting and we were able to get many of our questions answered. She was able to help us move forward to the next steps in this pregnancy - regular ongoing care. She felt that at this point, we should plan on delivering the baby in Kelowna as she didn't suspect any special needs at the time of delivery or in the perinatal period. The only thing we need to be aware of is an increase risk of preterm labor due to it still being a twin pregnancy and delivery. This baby needs to cook as long as possible. She also echoed Dr. Pugash's suggestion to return at 30-32 weeks for a follow-up at Women's Hospital to reassess the growth and determine more accurately the needs or expected outcomes for this baby.

She also explained that for better or worse, they know a lot about this pregnancy. Unfortunately there is not much that we can accurately extrapolate from what we know and there is not much that we can do to change anything right now. Most babies who have experienced compromise to their brain in utero go undiagnosed until between 6months and 2 years when they fail to meet regular milestones.

The future for Sayde is still very unclear. Her disability may be significant or it may be very mild. I do feel excited to meet my beautiful little girl and to hold her and love her, and I now feel that despite the worry that I will continue to have, I can enjoy the rest of this pregnancy.