Our Standing Appointment

Our standing appointment (6-8-05)…
Today we had another ultrasound appointment with Dr. Landwehr. We were supposed to be meeting with a neonatalogist as well but David and I both had a feeling that meeting would not actually transpire. I was feeling slightly anxious before the appointment as I think I might feel each Wednesday morning (before our standing appointments). We were sitting in the waiting room for about 30 minutes before being called back to our room. Sitting in that waiting room was probably the last thing we wanted to be doing especially since we were beginning to have flashbacks of our last appointment which lasted 3 ½ hours. David seemed to be getting more and more agitated as time passed.

Finally, we were called into the ultrasound room. Becky put the gel on my tummy and began looking at Zoe. Zoe began moving right before they called us into the room so I was certain that she was still strong and alive. Her heart rate was 163 bpm which was higher than last time. Becky said that this was her waking rate and that it was high because she was probably resting last time. After we had been in the room for a few minutes a nurse stopped in and gave us the impression that a neonatalogist would probably not be stopping in today because they seem to be backed up in the NICU. Since David and I expected this, we were no more frustrated. The nurse said that she would attempt to find an anesthesiologist to come by to discuss epidurals with us. I have been anxious to speak with an anesthesiologist because there has been some concern that I would not be able to have an epidural due to my previous spinal fusion and the possibility that the hardware in my back would block the space where an epidural would be administered. I brought my most recent x-rays for the anesthesiologist to examine in order to determine if an epidural would be possible. Generally most pregnant women would not be anxious this early about epidurals but because it is possible that Zoe could die at any time and I would have to deliver her, I want to be as ready as possible (as ironic as that sounds to say). The anesthesiologist came into the room sooner than we expected. He looked at my slides and said that there should be no reason that I couldn’t have an epidural. It would just have to be administered higher on my spine. The doctor asked if I had any questions about epidurals in general but since I have had 2 epidural cortisone shots I actually feel fairly comfortable with the thought.

After the anesthesiologist left the room, Becky went back to examining Zoe. Dr. Landwehr came in about 30 minutes later and looked over some of the things that Becky had found. David and I definitely went through a mixture of feelings today. It is always good to see Zoe, but it feels like we always walk away with fair news and bad news, leaving us confused. The good news is that Zoe’s heartbeat is still strong and she seems to have five toes on each foot and on her left hand. Becky could not get a clear picture of Zoe’s right hand but the last time we saw it, she appeared to have 6 fingers. The bad news seems to outweigh the good this time. The minor issue is that Zoe does not have a nasal bone which is typical in someone who has Down syndrome. The worse news is that Zoe seems to have abnormal issues with her heart and her brain, which have always seemed to me to be the most vital internal organs and cannot possibly be interpreted positively. Zoe appears to have water on her brain (hydrocephaly). Dr. Landwehr says that this condition could become less severe as Zoe’s brain continues to grow as long as the water does not increase as well. Her head however, seems to be of the appropriate size. Zoe seems to have 4 chambers to her heart, however, one chamber is collapsed. Dr. Landwehr said that he is making an educated guess but feels that the collapsed chamber is due to something called Hypoplastic left, which basically seems to mean that the blood is not flowing in and out of that chamber the way it should. Dr. Landwehr said that though the water on Zoe’s brain is shuntable, her heart condition is very complex and would take a series of three complicated surgeries to correct. Dr. Landwehr did not feel that the heart condition is something that would affect a newborn. However, as soon as she becomes active, she would have problems related to the heart condition. We just didn’t know how to feel. We desire to know whether to have hope or to prepare for her death and we are just not sure what to do.

Getting back to work (6-8-05)…
I have scheduled my Wednesdays so that I counsel two clients before our doctor’s appointment and four clients after the appointment. We finished our ultrasound with plenty of time to run home and grab something to eat before returning to work. I was reluctant to rush to work but knew that I needed to get there eventually. All four clients that I saw after the appointment were clients that I had not yet seen since returning from sick leave/vacation. They all asked how I was feeling and what was going on with my pregnancy. I thought that I would tell them the basics but two of them asked more specific questions. I just couldn’t hold it in this time and definitely became teary while explaining Zoe’s condition. I know this wasn’t the most appropriate counselor behavior, but I just couldn’t hold it in this time. I hope that this process gets easier.

Dinner (6-8-05)…
A kind friend brought us dinner tonight because she knew that our day would be emotionally draining and she just wanted to serve us in this way. It was a really nice gesture and she was exactly right about the day being a draining one. Wednesday nights are choir practice night and I would generally head straight to practice after my last session. A few days ago I decided to step out of choir until they restart in the fall. Especially with Wednesdays being our appointment day, I feel that this was the absolute best idea. It was a good boundary to set to protect myself. It also allows David and I to sit down, eat together and process our day every Wednesday…all things that we enjoy doing together.

Their positive results (6-8-05)…
David and I were upstairs cleaning when Danny and Nichole came up. They both had smiles on their faces and then Danny said, “Guys, this is awkward but Nichole is pregnant.” Nichole had just taken a pregnancy test and it was positive. Again, David told them that he was really happy. I told them that I too was happy and then told them the thoughts I had been having…how it had been difficult to feel that my happiness for them is tainted by what we are going through with Zoe. They seemed to understand. Nichole said that she had even had thoughts of how it is not fair…how within just a couple months she is pregnant with likely another healthy child. She said she did not feel guilty but that she just didn’t know how it is fair for us. I too have wondered “how is this fair?” Truth is that it isn’t fair.