This Facebook update is dated Saturday morning, but applies to Friday. The day started early and didn’t finish until well into Saturday morning…
8 hours of appointments today including driving. Sarah was in the MRI for an hour because the baby kept moving. Her new OB allowed us to come by at 6 pm for a 1st time visit - she was very nice. The MRI report is not very good. Fluid is now in new locations in Julie and in Sarah. Sarah's belly is a whopping size - equivalent to 44 weeks (that's 10 months).
The most number of appointments we had occurred on Tuesday of this week when Sarah saw five separate doctors. Then, Wednesday we had two appointments along with several hours in the hospital. Thursday went by with only a couple appointments. Now, Friday only had three appointments but they took forever without a break in between. We spent several hours in the basement of the MRI lab.
I sent out a more detailed update via email about 12 hours later…
Sarah had a full day yesterday – 8 hours of appointments including forms, waiting, driving, getting new prescriptions, etc.
Sarah was in the MRI for over an hour because the baby kept moving. They finally told her to hold her breath since that seemed to calm the baby down – no kidding! We joked that Sarah should just hold her breath for the next two months to solve all our problems.
The MRI report is not very good. The CCAM is rather larger than we thought. The amount of lung tissue is lower than we hoped based on the eyeball estimate by the MRI doctor. We will get a more complete report on Monday. There is fluid now in new locations in Julie AND in Sarah. Julie definitely has fetalis hydrops which is much more of a problem than the CCAM.
Her new OB allowed us to come by at 6 pm for a 1st time visit – she was very nice. Sarah’s belly is a whopping size – equivalent to 44 weeks (that’s 10 months). Talk about being “great with child!”
My sister-in-law Marla came over yesterday morning to sit with Sarah. They were able to talk for a while. Last night, a couple of Sarah’s sign language students came over for pizza, movie, etc. They had a great time – stayed up until midnight! Unfortunately, Sarah had a rough time last night, this morning and so far this afternoon.
The weekend plan is for Sarah to have plenty of rest. She is still dealing with the normal complications of pregnancy (I’ll spare you the details), but given her size, these complications are more than annoyances. Her new OB warned us that she may admit Sarah into the hospital until Julie arrives.
All the doctors keep asking how we can be so calm. We’re just trusting God in everything. We are praying to have a couple more weeks for Julie to cook before she has to face the world. However, it’s hard to tell when the fluid and other complications will force us to deliver early. Julie is 31 weeks today.
Andy and Sarah Horn
The MRI doctor (a team member of our specialist) spent a long time with us to explain what she found. Julie had fluid in three main locations – chest, abdomen and neck – confirming the fetalis hydrops diagnosis (which only needs two separate locations) of the cardiologist and specialist. Although the MRI doctor had nothing for a basis of comparison, it seemed obvious to me that the fluid buildup in Julie had expanded and accelerated. The doctor gave me a CD copy of the MRI and had me memorize the basic facts of the CCAM location/size and the locations of the fetalis hydrops. I should recite these to any doctor who saw Sarah in case Julie should deliver sooner rather than later. She told me to relay the need for immediate breathing support and the doctor should prepare for difficulties finding Julie’s esophagus because of the swelling in her neck.
Finally, the swelling in Julie’s neck reached to the base of the skull which might indicate unwanted pressure on Julie’s brain. Julie’s heart had shifted toward the left side of her chest and struggled against pressure from the fluid and the cyst. The doctor barely mentioned the CCAM and didn’t bother trying to estimate her weight. The fluid buildup overrode any other concerns.
Given that we had missed our appointment with Sarah’s newly assigned Ob-Gyn by a couple hours and we didn’t get out of the MRI until nearly 6 pm on a Friday evening, I pointed the car towards home rather than the next appointment. Sarah and I discussed this decision for several miles (some of them in a typical Dallas traffic jam). For some reason, Sarah felt compelled to contact the doctor anyway. When we finally connected through her afterhours answering service, she invited us to come by her otherwise empty office as she finished up the day’s paperwork.
This extra little effort really helped. As the cardiologist had previously observed (and I had guessed) Sarah retained fluid in her belly due to Julie’s fluid buildup. Sarah’s 7-month pregnancy measured 10 months. Talk about being “great with child!” The Virgin Mary had nothing on Sarah.
Sarah had swelling in her legs and ankles resembling a woman much further along in pregnancy. I had noticed her difficulty getting in and out of the SUV earlier in the week and promised her doctors to abandoned the large SUV for our smaller PT-Cruiser. Sarah could manage the climb in/out of the beast no longer. She practically waddled as she walked. I thought it was kind of cute, but now I realized how Julie’s problems effected Sarah.
The extra fluid (along with Sarah’s history of border-line blood sugar and blood pressure during this pregnancy) concerned the doctor. She would have admitted Sarah to the hospital that night, but because of the late hour and the weekend, she allowed us to go home with a warning that any problems meant a hospital bed until the baby came. We made a tentative (the normal staff who run the computers would need to confirm) appointment for Tuesday and went home satisfied that we had accomplished our goals for the day. Like so many of our doctors and nurses, we had also made a new friend with this new Ob-Gyn.
As for the warning from Sarah’s previous Ob-Gyn, I looked up fetalis hydrops and understood why the doctor sounded so serious. This condition gives babies only 30% chance of surviving birth. If they survive birth they still only have a 50% chance of long-term survival. The effects on Sarah might eventually jeopardize her safety. Sarah still had a while before she entered into real danger but we needed to balance this possibility against Julie’s future development.
Although the odds stood against Julie, I remained confident of her complete recovery. After Sarah’s students left, Sarah and I spent a long time talking about the results of the day. She needed a lot of reassurance to combat the exhaustion and discomfort she felt. Julie continued kicking until she settled down for the night during our conversation. We looked forward to a relaxing weekend with no doctor’s appointments until Monday afternoon. The doctors wanted Sarah on complete bed rest which suited both of us completely.
As Sarah slept, I confirmed my research on fetalis hydrops and wrote the update. I resolved to mask the severity of the situation from Sarah to prevent her from panic. In the silence of the night I wondered whether my resolute confidence came of faith from God or sprang from simple naiveté that one doctor sensed.
Through honest reflection, I knew my confidence had more strength than my own force of will, but I also knew I could ignore it if I chose. After some sleep I felt better about life and my humor returned.
My choice to trust or panic
Based on my research I knew that the first hour after birth would prove essential to Julie’s survival. If God planned to take her, it probably would happen in that time frame. Otherwise, I knew Julie would have the strength to fight and our competent doctors would find a way to reduce the fluid once they could get directly to Julie rather than watch from the outside.
God had seen Sarah and I through a lot of ups and downs over the past three weeks. Taking Julie didn’t make sense given His previous help to get us this far, but God has a world of problems to balance, not just our situation. I would trust with my eyes open to new problems and my heart at peace with God’s character.