September 15- Recovery

3 weeks 1 day old- We had a setback for a while.  Although Mae was eating plenty, exclusively breast milk, something in her body wasn't digesting it and turning it into calories.  Every day after coming home from the hospital she continued to lose weight.  At one point, she got into the danger zone having lost more than 15% of her body weight (26 ounces) since birth.  As of last Friday, she has now been on a special formula and she is trending upward back towards her birth weight. As of today she is 17 ounces below birth weight still, but is continuing to make up ground and add more and more each day.  Stacy is now attempting some very stringent dietary restrictions (no products with any kind of corn, soy, dairy) in an attempt to get Mae back on breast milk soon.

September 5

12 days old- Updated pictures! Mae is continuing to do a good job of eating, sleeping, making dirty diapers, and staying awake for longer periods of time. She is absolutely beautiful and her big brothers are loving having her around. Will adores her and wants to be a part of every diaper and outfit change, feeding, and snuggling session. Luke does not like to hear her cry and enjoys singing to her when she's upset. We're truly blessed to have her, life is great. Thank you for all of your prayers, we are grateful for the outpouring of love and support.

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.