6/22/17:  30 weeks 0 days...We had a regularly scheduled appointment today with Stacy's regular OB.  Everything checked out normal. Stacy's blood pressure was good, and baby Mae had a heart rate of 143 bpm (right around where it usually is).  The baby has been moving like crazy the last few weeks! She is an estimated 3 lbs  6 oz right now (based on measurements from last ultrasound). Our next scheduled appointment is July 6th (all day) at UofM. We are truly appreciative of all the prayers we have received as well as cards/notes/etc.

Updates as of June 8, 2017

Estimated due date: Thursday, August 31, 2017

Side profile of Mae from 6/8/17 with her hand in the lower right corner.

Her hand is up resting on her cheek (with her elbow bent) and head at the top. 

4/14/17: 20 weeks…Stacy and I went to our regular doctor in Grosse Pointe for a 20 week checkup/normal scheduled ultrasound to find out the sex of the baby. Everything had been fine until this appointment. Growth was perfect but they saw the radiographer saw a problem with the brain and sent us immediately, and unexpectedly, for a higher level ultra sound at St. John’s Hospital on Moross, in Detroit. St. Jphn's performed another ultrasound with the specialist and they confirmed what was suspected- Complete Agenesis of the Corpus Collosum. Appointment scheduled at UM for Monday, April 17th.

4/17/17: 20 weeks and 4 days… We spent all day at U of M today and met with Dr. Treadwell MFM (Maternal Fetal Medicine/High Risk OB), and Beth, our genetic counseler. The baby has been diagnosed with Complete ACC (Complete Agenesis of the Corpus Collosum). Extremely rare birth defect/not a lot of research/examples. Disabilities associated with CACC can range from mild/moderate to extremely severe/non-functioning. Most of the time there are other syndromes/disabilities that go along with this. We had an amniocentesis done today that “might” detect other syndromes (many things may not be known until well after birth… Days/months/years). We did not get a fetal MRI yet because baby's brain has not developed enough. The MRI might tell us more. We scheduled the MRI for May. It has been an emotionally exhausting 72 hours since Friday's ultrasound and we appreciate any and all prayers. We are really scared/struggling.

4/29/17: 22 weeks 2 days…Called Beth at UM and told her that we don’t want the MRI next week. They had only suggested an early date for MRI because they wanted us to see the results and have the option to terminate the pregnancy. We have decided to put this in God’s hands as we believe she was created for a purpose and it is not our decision to decide when to end her life knowing there is a chance she could live an impactful life. We told UM we wanted the MRI at the optimal time (28 weeks) because it doesn’t matter to us. Today we had a Gender Reveal Party! IT’S A GIRL!!!  Everyone came to our house for a well needed celebration for us, and to “Meet Mae Pearl”. (Will and Luke thought that the baby was going to be at the party so we had to clarify things for them!) 

It's a GIRL!

5/3/17: 23 weeks 1 day…Back at UM all day today. Met with Beth, the genetic counselor and our main contact at the hospital. Unfortunately we were given additional bad news. The CACC is not isolated, meaning it is not the only birth defect, as we had hoped/they though. The amnio also indicated a chromosomal abnormality known as Turner Syndrome. Obviously not good, and not the route we were hoping for, but it could always be worse right? We did a fetal echocardiogram with Dr. Thorson, a pediatric cardiologist. Thankfully, results of this test were great, her heart looks healthy and strong! This means that we can deliver at St. John’s in Detroit with our regular OB instead of at UM. That is a piece of good news.  Turners syndrome has its own set of potential problems.

5/25/17: 26 weeks 0 days…Met with regular OB to form care plan for the delivery at St. John’s. Test for gestational diabetes and pre-term labor were negative. Everything looks good and her heart rate is perfect.

6/8/17: 28 weeks 0 days…Back at UM for full fetal MRI, ultrasound, and meeting with genetic counselor. They planned to review MRI results later in the afternoon and call us with findings tomorrow. They did not expect anything new, but were hoping to get a clearer picture. MRI was tough on Stacy. Had to start over three times (getting sick in the tube). Finally completed. Went for Ultrasound. Ultrasound performed by tech, got some beautiful pictures, then had a different high risk doctor come in to discuss findings/results. Ultrasound delivered a devastating turn of events. They told us that things had progressed rapidly and that there was a large cyst on the right side of her brain (most likely due to a stroke Mae had in the last few weeks). They told us that this cyst has most likely destroyed and/or prevent growth of her brain tissue on the right side of the of the brain. Doctor told us the range of outcomes is now much more narrowed and would be anywhere from extremely severe to total non-functioning/death. Suggested the option of driving to Colorado or New Mexico for late term abortion. See the pictures from today above, and feel this baby move all day- termination is NOT AN OPTION for us. Dr. Treadwell came in at (10:30 a.m.) and told us to hang around until the multidisciplinary team of specialists (that meet once a week to focus on extreme cases) met to read the results of the MRI. She asked us to come back at 1:30 to talk with herself and Beth. Clearly an unexpected/excruciating three hours. We went to the chapel at the hospital and met a woman (Shanice) 34 weeks pregnant in the chapel crying by herself. After talking/praying with her for a while, we learned her baby girl had fluid on the lungs and heart at 20 weeks and immediately had a shunt put in (while in the womb). The tube remains in now to drain and she was there for a checkup. Going through the pregnancy completely alone (three other kids at home)… We are lucky to have each other. At 1:30 we met with Dr. Treadwell and Beth, they had just come from meeting with pediatric radiologist, pediatric neurologist and a team of MFM doctors. Good news-the MRI was much more clear, compared to the ultrasound. The ultrasound was extremely misleading! Although the cyst on Mae's brain is alarmingly large, the right side of the brain actually did develop and was not destroyed, as previously discussed with us!! The cyst was totally covering the brain in the ultrasound but in the MRI they could see the brain is developed but having to move around to make accommodations for the size of the cyst. Therefore, if it doesn’t worsen, it is possible we are back to having the full range of possible outcomes (instead of only the worst end of the spectrum). Now, Dr. Treadwell explained that one of three things can happen at birth (or within first few days): 1. sometimes the cyst will “spontaneously recede,” 2. they can drain the cyst, 3. they will perform surgery to remove it. If that is successful, there could be no brain damage. We are now unexpectedly unable to deliver with our doctor at St. John's (where our friend is the neonatologist). We will now have to deliver at U of M in Ann Arbor. Obviously we know everyone is the best there, but still feels like a stressful change. The best case scenario is that we are still dealing with potential host of problems that are associated with ACC and Turner's Syndrome. HOWEVER, after what we went through in the middle of the day today, this news regarding the cyst somehow now feels like a victory?! 

Our next appointment at UM is in four weeks (32 weeks gestation) where we will meet with the Genetic Counselor, Pediactric Neurosurgeon, get another Ultrasound, and tour the NICU, establish Stacy with an OB doctor in the high risk department to prepare for delivery.