Pregnancy Update #2

I have discussed our pregnancy issues in the following posts: The Unexpected Diagnosis – PJ's Projects (pjsprojects.com) , I Am Tired – PJ's Projects (pjsprojects.com) and Pregnancy Update – PJ's Projects (pjsprojects.com) .

I appreciate all of the many words of encouragement and support. This post is simply an update. 

28 Weeks

Week 28 was one of unnecessary stress due to miscommunication. At around 26 weeks, a physician explained to me the importance of considering an elective C-section to prevent the complications of a uterine rupture. I agreed with the reasoning and logic associated with a controlled operation and was preparing myself for the possibility that a decision may have to be made as early as the 28-week-mark. It was my understanding that the decision for this elective surgery would be based on any symptoms of labor, the NST monitoring and the ultrasound results.

Going into week 28, I was symptom-free, but we had a few incidents of fetal heart decelerations that I was not knowledgeable enough to understand the implications (It was later explained to me that these incidents were of no real significance). I was a little anxious to see what the ultrasound would reveal. The ultrasound showed a healthy baby, but her head was in a position that made it impossible to gain any measurements of the uterine defect. I was interested to listen to the interpretation from the attending OB. 

The attending physicians for this unit rotate on a weekly basis. I have met and conversed with a number of them. For week 28, it was Dr. Talks-A-Lot's turn. We have all met those individuals that burst into a room, take over any conversation with a loud voice and use a lot of words but end up actually saying very little in regard to content. This was a personality trait of Dr. Talks-A-Lot. I can usually tolerate this personality in the free world, but as someone to whom I needed to discuss personal, medical issues, it would prove to be a disadvantage. 

As is her personality, she rounded in a flurry of activity, talking a lot and leaving with me with more questions than answers. I was finally able to break through the conversation to ask her opinion on the results of the ultrasound. She admitted that she hadn't even looked at them. She continued to discuss my situation and stated that we were simply monitoring my symptoms and that we would plan to deliver this baby by no later than 36 weeks. 

I have spoken to at least ten different specialists since my diagnosis, and NO ONE has been this optimistic with the delivery date. The best-case scenario prior to this conversation was 34 weeks but that was considered pushing it. I was utterly confused. What had changed? I had gotten used to each physician having their own unique opinions of my situation but this one was by far the most optimistic. I attempted to tell her that her prognosis was very different from what I had been told by other physicians. She interrupted me to explain that she could not be held accountable for anything that another physician has told me and that she was stating her medical opinion.

I was tired of being interrupted and was a little frustrated at her mannerisms. I will admit that my wording of the next question was probably the kick-off to this whole miscommunication fiasco. I asked, "So, what is the plan? If we are only monitoring my symptoms, why am I here?". She immediately stated that I could be discharged and that weekly outpatient monitoring up to 34 weeks is a very reasonable option for someone in my condition. WHAT?!?! This was never an option provided to me before, so why is it an option now?

I was very tired of my prison cell and I'm sure that my face lit up like a Christmas tree at the thought of being discharged. I asked, "Is that really an option because it hasn't been mentioned before?". Again, she reiterated that she could not speak for other physicians, but that outpatient monitoring can be done. She offered to speak to the other attending physicians about this subject and I quickly agreed. In my opinion, a meeting of the minds was what was definitely needed to clear up these confusing contradictions in treatment plans. 

I mentioned this option to the hubby and my parents. No one was happy about it except me. They weren't sitting in this room day after day. Their arms weren't the ones being turned into pincushions. They weren't listening to this doctor explain the reasoning behind this recommended option. They didn't hear the newly optimistic viewpoint of my condition. I know that they were concerned for my well-being but how do they dare to be so judgmental when they weren't here? This led to a few arguments. 

The next day, Dr. Talks-A-Lot was even more animated than normal. She explained that she had a large caseload and didn't even have time to pee. I sympathized with her situation as I have been in similar situations myself. I understood that my condition was considered stable and that I wasn't a top priority but I never had the opportunity to express this opinion. She left the room to take a phone call and returned to discuss another patient's more critical condition. Again, I get it. She was probably overwhelmed with other patient's problems. She stated that she hadn't had time to discuss the option of discharge with the other attending physicians. I simply told her to talk to them and get back to me on the consensus. 

Later that evening, the hubby was visiting when Dr. Talks-A-Lot called from her cell phone on her way home. We placed her on speaker, and she explained to us that the other attending physicians agreed with her plan and that I could go home that very night. What?! The hubby was furious. I know that I have expressed to him my feelings of entrapment and my desire to go home, but I was NOT the one pushing for this discharge. She was the one presenting this as an option. I simply wanted to know more information. Why was it safe to go home this week when it wasn't safe last week? If my condition is not as severe as I was originally being led to believe than why did I put myself, my family and my friends through all of this unnecessary stress? What changed to make outpatient therapy a truly viable option? 

I tried to explain that I didn't want to go home tonight but that I did want to discuss the procedures of outpatient therapy, the risks and the benefits. She told us that we could discuss the details of discharge the following day. She also stated that the risk of brain injury to the baby with a rupture at home was 1/1000 and that my risk of uterine rupture prior to 32 weeks was less than 5%. We ended the conversation. The hubby was still upset but he had to leave as there were things going on at home that required his attention. I promised that I would discuss the details with the physician and that I wouldn't make any final decisions without discussing it with him. He left. 

As excited as I was that the other attending physicians felt that it was now safe for me to go home, I had a nagging feeling. I had asked each and every specialist to state the risk of uterine rupture at any given time in pregnancy. Not one of them felt comfortable providing a specific percentage because there simply wasn't enough data about my condition available. How was this doctor able to narrow my risks to less than 5%? Had new information been published about my condition since my admission? Did she have a personal history with patients in my condition that allowed her more optimism than other physicians? What was I missing?

I was upset about the fight with the hubby. I was torn for my feelings of wanting freedom and risking the life of my unborn baby. I couldn't sleep. I spent the night reading and rereading every article that I could find on patients with a uterine dehiscence and uterine ruptures. I couldn't find any new data, but I recognized that this physician probably had better resources for this information than I did. 

The next morning, the resident came into my room stating that I was to be discharged that day. I disagreed. I asked her to cancel any discharge orders and that I wanted to have a conversation with Dr. Talks-A-Lot about the risks, data, and other information available that makes it safe for me to do outpatient monitoring. She must have explained my concerns to her attending physician because Dr. Talks-A-Lot set aside some time to discuss my case later that afternoon.  

It wasn't easy but I was able to get some of my questions asked and answered. 

   - She stated that I was stable for the last four weeks, so it makes her more confident in my going home and pursuing outpatient monitoring. However, I should return if I feel anything abnormal.                                                               

   - She explained the risks of maternal death and fetal death if a rupture was to occur. I knew that there have been enough patients with uterine ruptures (from all causes) that obtaining risk data was reasonable and these numbers were very similar to the ones that I had been presented with in the past. See below.

      - She stated that my risk of uterine rupture was 5 to 10% but that in her experience this rarely occurred prior to 32 weeks. Last night, she said less than 5%? I asked her where she got the 5-10% risk assessment and she explained that she based it on risks known to women with longitudinal uterine scars. Sidenote: A longitudinal uterine scar is a scar caused by a surgery where a cut was made around the area of the belly button and proceeds vertically downward towards the pubic bone. This surgery is not as common as the traditional C-section (cut below the protruding belly, across the body, from about hip bone to hip bone). I must have had a weird look on my face because she stopped for a second. I explained that I was confused as to how the data from rupture risk associated with a longitudinal uterine scar could be compared to my situation of a uterine dehiscence. She stated that I had asked for data, so she is giving me data. She proceeded to use these risk numbers to calculate MY risk of the various outcomes. See below.            

I agreed with her math but not necessarily how she obtained the numbers.         

  - She stated that delivery at 36 weeks was listed on her paper and that it was never her intention so that my interpretation of her optimism was misplaced.       

  - I asked about the timeframe needed to extract the baby if a rupture was to occur. She stated that if I was to have a rupture that she would want the baby delivered within 20 minutes. The chances of additional complications increased after that time frame. This timeframe was similar to what I had been told on admission and the reasoning for my room to be located just outside of the operating rooms.                                                                                       

   - She continued to explain the details of outpatient monitoring, but I had stopped listening. I knew that this may be an option for her, but it wasn't going to be an option for me. I had promised the hubby that I wouldn't make any decisions without speaking to him first, so I simply let her finish her speech and asked to have time to think over all of this new information. She agreed. 

The next day, I didn't go into details but simply stated that I wasn't comfortable with the risks of outpatient therapy. Dr. Talks-A-Lot then stated that she wasn't going to tell me this but, that if it were her, she wouldn't go home either. Why wouldn't she tell me this?! Why had she spent the last few days giving me low statistical risk factors? Anyway, she proceeded to tell me that she recommends delivery before 34 weeks and possibly as early as 32 weeks if nothing else changes in my condition. This was the original treatment plan. If this was her recommendation, why did I have these arguments with the hubby over the last few days? And why did it differ so much from what she said earlier in the week? 

It is now understood by the medical staff that I was demanding to go home but Dr. Talks-A-Lot was able to talk me out of this dangerous endeavor. 

At this point, I am done trying to explain my point of view. I don't know if Dr. Talks-A-Lot was simply overwhelmed with her caseload, if she didn't properly review my chart prior to discussing my options or if she simply changed her mind. Whatever it is, I lost faith in her judgement. I simply hope that when this baby is due to arrive, Dr. Talks-A-Lot isn't the one in charge for the week. 

29 Weeks

Week 29 was better. Dr. Talks-A-Lot was relieved of her rounding duties and another physician was placed in charge of my case. 

The ultrasound was still not able to obtain good views nor measurements of the uterine defect. I am still a bit concerned as to this lack of information but no one else seems to be worried. We did find out that based on her measurements, the baby is estimated to weigh 3lbs and 6 oz! This is considered the 72nd percentile for a baby of her age. 

One day, I started to feel ill. It felt more like gastrointestinal issues rather than contractions, but my nurse placed me on the monitor as a precaution. No contractions were noted that afternoon. However, that evening, several small contractions were observed on the NST monitoring. Contractions cause tension on the uterine muscle and significantly increase the risk of rupture. Any contractions are taken seriously. I was continued on the monitor for over three hours and given IV fluids. It turns out that I must have been a bit dehydrated as everything calmed down and returned to normal. Besides being tired from lack of sleep, I felt much better the next day. Note to self: Drink more water! 

We are trucking along and are approaching the 30-week mark. When I received the news of my diagnosis, I stopped preparing for a baby. Instead, I started preparing for the medical issues. My focus for the last eight weeks has been on test results, risk assessments, thoughts of how this is affecting my other kids and simply making it through each day.

Now, I am starting to believe that I may actually be bringing home a baby at some point in the near future!