I have never been very good at waiting….for anything. I think it’s more because I prefer to know what is going on rather than be left in the dark—I’m more vulnerable in the dark.
The fact that I had to wait for the Genetic Counselor to call me just added more stress and worry. I still had a schedule to work around and I was confident they were going to schedule the appointment during something important. I knew I could always reschedule, but I much preferred setting my own hours and avoiding that annoyance.
At this point the kids really clued in on my stress. How can you explain this kind of thing to a 3-year-old? Jakob knew I was pregnant, but he didn't know something was wrong. I wasn’t sure what to say, if there was anything to say yet, so I just tried to be strong and continue our daily routines. I fought back the tears and tried my best not to worry and that was just enough to keep our family in balance for the time being.
Jakob could definitely sense a change. He started waking up 2 or 3 times a night being afraid of “noises” in the dark. He is not one to just go back to sleep on his own (and Daddy is NOT an option for consoling) so after a major tantrum and persistent pleading there I sat with him on his bed, holding his hand until he fell asleep. I would tiptoe out of his room and finally get comfortable in my own bed before he would wake up an hour or so later and start the process over again.
By the third night of restless sleep I just couldn't handle the emotional frustration anymore: It was 4:14 a.m. (my third attempt to help Jakob sleep) and I simply broke down and cried. I cried from the deepest core in my heart; a place I hadn’t visited in a very long time. I lay on the tiny mat on the bathroom floor, pleading with Jakob, “please just go back to sleep” all while covering my eyes from streaming tears. Jakob stood by the door in silence as Danny tenderly helped me to my feet and tucked me into bed.
I could not stop crying. I didn’t really try. It felt good to release the energy in my heart—all the tears, worry, sadness and fear that had been building the last three days was finally confronted and there was nothing I could do more for myself than cry . A thought occurred: this is what it’s like to “feel”. It kept repeating: if there is one good thing that comes from this baby it was that I had a chance to feel again.
By day four of not hearing from the Genetic Counselor, and not liking the idea of being left in the dark, I decided to call them.
Genetic Counselor: “What did you say your name was?”
Me: “Jamie Rogers”
G. C.: “Jamie, we have you down as a No Show.” “Your appointment was on
Wednesday at 2:30, but you didn’t show up.”
Me: “I was never told of an appointment for Wednesday.”
G. C.: “You should have received a phone call from your Doctor.”
Me: “My Doctor told me to expect a phone call from you.”
G. C.: “We generally do not call the patient to set up the appointment. We contact the Doctor and leave it up to them to call you.” “I know there has been a misunderstanding, so let me talk to the secretaries here and see if I can’t figure out where the problem occurred.”
Me (trying not to be frustrated): “Okay, thank you.”
I knew this would happen. Wednesday at 2:30 would have been perfect. I had nothing going on then, but now they are going to reschedule me for a day that doesn’t even work. Just my luck.
A phone call from Dr. F: “Jamie, I just got a phone call that you were a No Show for your appointment. Are you doing okay?”
Me: “I was never told about the appointment.”
Dr. F: “I’m not sure how that happened because right after you left my office on Tuesday I immediately called the Guidance Office and talked to my friend (the boss) to set up an appointment for the next available time, which was Wednesday. They hardly ever get anyone in that fast so it was going to be perfect for you to see them right away.”
Me: “I know…Wednesday would have worked perfect for my schedule too.”
Dr. F: “I’m not sure who dropped the ball, but I will call and find out where the error occurred.”
In the meantime, the Guidance Counselor called me back: “Jamie, I just wanted to let you know that we did our part and by setting up your appointment for Wednesday. We left a message with your Doctor’s secretary to forward the information on to you. It was confirmed that they were going to contact you by phone, so somebody in that office did not do their part.” “I’m really sorry.” “I would try to set up a new appointment with you right now, but the server is down on our computers and I cannot access the schedule.”
Me: “That’s okay. I’m just more upset about missing the appointment because Wednesday would have been perfect for me.”
Genetic Counselor: “We will try to get you in as soon as we can.” “Would you like us to just go ahead and call you personally?”
Me: “Yes, please. That will work better. ”
Me: “Yes, please. That will work better. ”
G.C.: “Okay, I will call you back when our computers are working again and I can get access into the scheduling office.”
Me: “Okay, thank you”
20 minutes went by before receiving another phone call from the G. C.: “Jamie, I was able to access the scheduling office and I have an opening for January 16 at 10:15 a.m. Will that work for you?”
Me (thrilled they rescheduled for the Holiday ): “Yes, of course.”
G.C.: “I was also able to pull up your file and take a look at the photos that were taken from your recent ultrasound. What exactly did they tell you that was happening with the baby?”
I proceeded to explain in my best words everything the Doctor told us from her office that day. I wasn’t certain on the big words/terms of the abnormalities, but I was able to describe the fluid surrounding the neck and the intestines developing outside the body.
The G.C. tried to explain all the medical terms of what “could” be occurring to the baby. Cystic hygroma and hydrops this, gastroschisis or omphalocele that; CVS and FISH tests were necessary to determine chromosomal abnormalities….but she wasn't confident that the photos were showing the same thing the Doctor was describing to me. It was almost like she second guessed the Doctor’s opinion, which frustrated me because Danny was already complaining he didn’t like how early the Doctor was trying to diagnose problems with the baby and how they should just let the baby develop before making any kind of assumption…. my argument was that I trusted the Doctor knew what she was talking about and cared enough about me to let me know what was going on, so it was difficult to hear a contradicting opinion from someone who “knows” better. I just focused on the conversation at hand and kept listening to determine exactly what the Guidance Counselor was trying to say.
G.C.: “And 10 weeks is still really early to determine whether or not the baby has a gastroschisis (intestines outside the body) because we don’t usually determine that until after the 11th week of development.” “You will be 11 weeks on Monday, so there is still a chance for that to have developed normally.”
Me: “Okay.”
G.C.: “Hopefully this will make more sense once we have a chance to visit with you and take a look at the baby.”
Me: “Okay, thank you for the information.”
I got off the phone feeling more confused and worried. I just wanted some answers!
Again, it was time to play the waiting game.
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