I had two family counseling sessions prior to our doctor’s appointment today. I wasn’t feeling as uptight as I felt before the other appointments. I knew that they were going to be more diligent about having the neonatologist at this appointment since they didn’t show last time and though Zoe hasn’t been moving strongly today, I know that she has still been moving and therefore is still alive.
David and I arrived at the hospital right on time (11:15). We saw the ultrasound tech coming out of the snack shop when we stepped in the door therefore I was certain that she wasn’t working on anyone else at the time. When we walked into the office, Dr. Landwehr was talking to another man who we later found out was the neonatologist, Dr. Kundenricht. They seemed to be relaxed and actually waiting for us…a change from the other appointments. We found out that one of the nurses told Dr. Kundenricht, “I dare you not to show up.” He must have taken her seriously.
Becky took us into the ultrasound room and immediately started looking at Zoe. She was wiggling just a little and her heartbeat was 158bpm, which continues to be strong. Becky took time looking for Zoe’s right hand which she never got a good picture of and therefore we are to assume that it still has 6 fingers like we had originally seen. She got a good picture of Zoe’s feet and toes. Though there still seem to be 5 toes on each foot, she thought that her feet appear a little stubby.
Dr. Landwehr and Dr. Kundenricht came into the exam room about 15 minutes after Becky had started the ultrasound. They started talking to David and me and looked at the ultrasound screen a little but it seemed that their biggest concern was talking to us at that time. I was starting to get slightly light-headed lying on my back so Becky stopped the ultrasound while the doctors spoke with us.
David took out the list of questions that I had written for the week and started asking the doctors the questions. He initially asked what the neonatologist would know right after Zoe was born. The doctor assured us that he or his partner and a team would be there when she was born and that they would assess her vitals and give her oxygen if needed. He said that oxygen would be given to even a normal baby. A more aggressive measure would occur if Zoe could not breathe on her own. At that point, the decision would be made as to whether or not she would receive a ventilator. A lot of the decisions seem to be related to what week Zoe is born and obviously if she is born alive. A baby born before 24 weeks has little chance of surviving even if the odds are stacked in their favor. A normal baby born at 28 weeks has slightly increased odds of surviving. And a normal baby born at 32 weeks typically survives. Obviously, our desire is that Zoe would make it to full-term but a lot of our decisions will likely rest on whether or not she makes it past the 32 week threshold. It was nice to feel that Dr. Kundenricht did not need for us to make all of our decisions about Zoe at this time though it would be good to have a general idea of what we will and will not do. Dr. Kundenricht explained that no infant surgeries are performed at Ball Memorial Hospital and that even if Zoe had a severe heart condition, Riley Children’s Hospital in Indy would wait until she was 6-8 weeks old before performing the surgery. He said that they would want to make sure that she could sustain life on her own before performing such a critical surgery.
We also spoke with Dr. Landwehr about the possibility of a cesarean if Zoe is in distress. I told him that I have been having horrible thoughts of her umbilical cord wrapping around her neck and that being a reason she is in distress…not anything to do with the Trisomy 13. Dr. Landwehr has been hesitant to do a cesarean because of the possible complications for me and knowing that the odds of Zoe surviving are so low. However, because Dr. Landwehr has developed a relationship with us and because he has begun to wonder if Trisomy 13 babies do so poorly because they are not given much of a chance from the beginning, he has started to rethink his openness to helping out in that way. Dr. Landwehr now says that he will do whatever we desire. He understands that being given the gift of having any amount of time with our baby while she is alive would be invaluable and allow for more healing than being handed a baby that died in delivery. Though we do not know the conclusions we will come to, I am grateful that Dr. Landwehr is looking at other aspects of our well-being.
After talking with the doctors, Dr. Landwehr asked if he could take another look at Zoe. We were looking primarily at her heart defect and at the water on her brain so that Dr. Kundenricht could see some of the conditions he will be up against when Zoe is born. When Dr. Landwehr examined Zoe’s brain he noticed that it looked much different than it did two weeks ago. The water which was a major concern had basically all drained from Zoe’s brain. Dr. Landwehr took measurements and stated that Zoe’s brain mass is right where it should be right now. Dr. Landwehr said “I have never seen that happen before”. We are not sure if he was talking about with a Trisomy 13 baby or with any baby, but we will take that as a sign that God has his hand on Zoe. I also know that God answered my prayer that we would see a specific sign that Zoe had improved since the last ultrasound. I asked if Trisomy 13 babies have mental deficiency as a result of having Trisomy 13 or because their brain is structurally incorrect. They both said that is a good question and after thinking about it stated that they felt it would be due to brain abnormalities. Zoe’s brain at this time seems to be structurally correct which is very uncommon for Trisomy 13 babies. Nonetheless we will not know if the “wiring” is correct until after she is born.
Dr. Landwehr then looked at Zoe’s heart. One of the chambers still appeared to be collapsed which he guesses is due to a ventricle that is not functioning appropriately. However, Zoe also seems to have a ventricular septal defect (VSD) which is actually allowing her heart to compensate and oxygenate some before flowing out to the rest of the body. They do not know how this will manifest once Zoe is cut off from the support of my body, but they did say that many people are able to survive at 80% oxygen levels.
Dr. Landwehr and Dr. Kundenricht see no reason that I would be delivering Zoe anytime soon because her vitals seems to be strong at this time. David and I felt relieved after today’s appointment. Especially the news on the condition of her brain seemed to be very positive in our eyes. We were grateful to be leaving encouraged instead of discouraged. David and I both left with the feeling that Zoe will be born alive and that we will be able to experience her life for at least a period of time outside of my body.
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