Birth-8/24/17

After a regularly scheduled checkup appointment on Thursday, the doctor feared Stacy might go into labor over the weekend and decided to send us to UM.  At UofM,  Dr. Treadwell  performed a C-section, and on 8/24/17  at 4:27 PM  Mae Pearl Welser was born (21", 10 ponds 4 oz).  Initial evaluation was best case scenario. She was breathing and swallowing well on her own and no  obvious malformations of the head/skull.  Due to these factors, she spent very little time with the neonatologist and was able to be back to Stacy from the NICU within two hours and breast-feeding well. Stacy is doing great. Mae has had the first 48 hours flooded with  appointments/scans/tests by  specialists and medical students.  Besides her typical newborn scan/blood surgar checks/etc,  she has had a cranial ultrasound, geneticists evaluation, Echocardiogram, renal ultrasound, and an MRI.  In spite of all the pre natal diagnosis/birth defects being confirmed (and status the same) we  are all very optimistic that we will be coming home in the next day or so.  The neurosurgeon is awaiting results from the MRI, but is confident that we can delay any procedures/surgeries. We will have our next follow up evaluation with him in 1 month (and the rest of the specialists in 6 months). We are very encouraged about the long term potential outcomes for Mae's health and quality of life! But as we know it now, it is years and years of "wait and see". Thank you for all of your prayers. We know there are so many people more worthy of them. We are overwhelmed by love. It's hard to believe there could ever be anything wrong with baby Mae with how beautiful and perfect she looks right now.

37 Week Update

37 weeks 0 days- Stacy went to Dr. McCarren for a checkup on Thursday, her blood pressure was good. However, when they took Mae's heart rate there was an 'acceleration' and her beats per minute were at 185 (WAY higher than the past few readings of 130s). This caused the doctor to request an NST (non-stress test) to measure Mae's heart rate to ensure that it was staying in the range of 120-160. During the NST Stacy was having contractions that were not painful but were present on the test readings. After two hours of testing, we learned that Mae's heart rate was normal and nothing to be alarmed about, however, the doctor was concerned that Stacy was having contractions that could lead to early labor. Due to the heart rate acceleration and contractions showing up on the NST, we'll be going for twice a week monitoring until the baby's arrival.

36 week update

We had a doctors appointment this morning at UofM. They did an ultrasound for a recheck on everything. Nothing has changed more than was expected with the 4 main issues. The baby is estimated to currently be 8lbs 3 oz (see cheeks!) with nearly 4 weeks to go. Head size is allready above  the parameters of when they would allow natural birth. Therefore C-section has been scheduled for Tuesday,  August 29th.

Update 7/27

July 27- 35 weeks 0 days: Stacy had a regular doctor appointment with St. Clair Shores OB and Mae is measuring big, which we already knew/expected with both of the boys being big at birth, 9 lb. 7 oz. (Will) and 10 lb. 7 oz. (Luke). She is posterior (with her back facing toward Stacy's back) and is head down. Mae has been moving like crazy and this positioning would explain why her movements are so visible because her arms and legs are facing out. Her heart rate was 137.

(We're trying to relax as much as possible and enjoy this summer weather!)

Update 7/6/17

7/6/17...32 weeks 0 days. We had 5 appointments at UofM today. First was an ultrasound. Measurements on everything were good/head still measuring big (due to multiple factors). She is estimated to currently weigh  5 lb.  5oz  right now. There is/will be nothing new for now on the Turners syndrome or the ACC.  The 2 most pressing issues currently are the enlarged ventricles, and the arachnid cyst. Good news is that the cyst on the right side of the brain hasn't gotten any bigger (it is takes up approximately 33% of the right hemisphere currently). The enlarged ventricles are currently the biggest concern. We met with the MFM that we hope will deliver. They will determine whether it needs to be c-section or not after the ultrasound at 36 weeks depending solely on head size now. 

    We then met with Beth, the genetic counselor-she is great. We just touched base and set the next appointment dates (August 3rd.-all day).

   Stacy then had to go through a "new OB patient" visit with their OB clinic since we will now be delivering at UofM. Everyone there was fantastic. 

    Next, we had a scheduled tour of the NICU. We are still reasonably hopeful that the baby doesn't have to spend much time there. However, in the case she does-the whole unit/the staff, and their individual rooms are beyond amazing and comforting. 

   Last, we met with our Pediatric Neurosurgeon. If you happened to catch "Chika's Story" by Mitch Albom a couple weeks ago in the Free Press, this was their doctor.   http://www.freep.com/story/sports/columnists/mitch-albom/2017/06/11/chika-story-daughter-cancer-mitch-albom/322589001/   

He spent a long time with us, reviewing MRI images and going over all of the issues. He was very hopeful of a positive outcome. He was very encouraged that the size of the ventricles and the cyst have  not increased in the last few weeks and said that is what we need to hope for until birth. He is hoping to be able to delay treatment or surgery as long as possible. There is sill that chance that the cyst will spontaneously reduce after just  after birth and that the ventricles will not increase (hydrocephalus) in size and we may never need any procedures. These are 2 separate issues. We will see him next after birth to determine the next course of action. 

   Our next check on the sizes of these, as well as head size, will be at the ultrasound on August 3rd. Stacy has a regular OB appointment July 13th. 

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.