'Tis the Season

Update: 12/19/17

Today is our eight year wedding anniversary! Life is good and we are so lucky to have each other!

Last night we took Will, Luke, and Mae to see Santa at the mall and everyone cooperated! Thought we'd share pictures of the fun!

Celebration and donuts!

Update 12-15-17

Mae's appointment at U of M went well on Wednesday. (Unfortunately, Ryan and her got stuck in the snow storm and it took them four and a half hours to get home! Thank God they arrived safely.) The doctors on Mae's intestinal rehabilitation team are pleased with her progress and weight gain. They made minimal changes to her daily routine. She will remain on her dosage of TPN until further notice, but, her fructose allotment of formula has increased by 1 oz. She is continuing to show great neurological signs with social smiles, tracking objects, and eye contact. She is truly amazing! Mae will be following up with all of her specialists at U of M in January- Dr. Garton with neurology, the intestinal rehabilitation team and Dr. Steien, genetics, and our pediatrician, Dr. Pedasky in St. Clair Shores. (January will be a busy month full of appointments.)

On Sunday, we will celebrate Mae's baptism at church in front of all of the wonderful, thoughtful, and caring members at Immanuel Lutheran who have kept us in their prayers and close to their hearts. We are looking forward to this beautiful day.

Going forward, prayers specifically for Mae's continued weight gain and neurological growth are so appreciated. 'Before I formed you in the womb I knew you, before you were born I set you apart.' Jeremiah 1:5 Mae is a miracle and she has been set apart, we are blessed to be her parents.

On a side note, our scout elf, Captain John, has been keeping a close eye on Will and Luke as Christmas approaches! He delivered donuts to the boys one morning this week!

Rolling and Gaining :)

Update: December 8

Mae is continuing to gain weight!! She is practicing her tummy time and has started to roll over! We are going to setup our Christmas tree and enjoy some quality family time this weekend :) I am certain that she will enjoy looking at the bright, twinkling Christmas lights.

We are truly blessed to have Mae, her beautiful brothers, and the unconditional love and support that has been shown to our family. "Give thanks to the Lord for He is good; His love endures forever." Psalm 107:1

Progress and pictures!

December 1- Mae is doing very well at home as we are all learning new routines and adjusting together. She is a happy, smiley, and precious little girl who loves being held, cuddled, and drinking her bottle! She is getting weekly nursing visits for weight checks and blood draws with follow up appointments at U of M and the Children's Intestinal Rehabilitation team every two weeks. She is continuing to improve and she is gaining weight. We are cautiously optimistic, taking one day at a time as she grows and develops. She is truly a miracle!

Over the Thanksgiving holiday we made our annual trip to Cheboygan to visit my family and everyone did SO during our travels! (Thank God!) We were nervous to venture out with the TPN, the formula mixing, medical supplies, etc... But, we did it and we are SO happy that we did! My family was excited to see Mae and they truly love spending time with the boys. We had an early birthday party for Will and took family photos! It was a great, much needed, getaway.

Neurologically, Mae is following objects with her eyes and reaching for items that she wants: Her pacifier, soft toys, her mobile, her brothers, etc... All of these are great signs that she is reaching her neurological milestones. Prayers for her brain to continue to grow, develop, and make connections are so important. We have a long road ahead with many unknowns but one thing that is certain is that this little girl is loved and cherished by so many people. We are so grateful for the support.

Home has never been sweeter...

Update 11/21: Home Sweet Home! 

Mae was discharged from the hospital late Thursday night/early Friday morning and arrived home around 1:00am. We have been blessed with quality home health care, appropriate training, and generous neighbors/friends/and family to make this transition as smooth as possible. So far, we are all doing great and could not be more happy to have Mae at home with us. The weekend went well and we had visiting nurses come out Friday morning and Friday night and then again yesterday and today. Mae has a follow up appointment at U of M tomorrow, Wednesday, where she will meet with a plethora of doctors and specialists related to her malabsorption issues. 

Currently, Mae is on a TPN regimen of 12 hours on (at night) and 12 hours off (during the day). Ryan and I take her on/off the TPN daily. She has not lost weight since we have been at home and she has remained stable according to our daily measurements. Her formula and other medical supplies are delivered weekly by the medical company when her TPN infusions arrive. We are so fortunate to have access to these resources and medical professionals. 

"All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God." (2 Corinthians 4:15) We continue to be amazed and overwhelmed by the truly wonderful people in our lives who have done countless acts of kindness for Mae and our family. We could not be more appreciative or thankful. Mae is definitely a miracle to each of us.  

Making progress...

Update 11/9/17

Mae is starting to make progress and is back to gaining weight with the TPN. She is on a 12 hour cycle so she is receiving TPN for 12 hours (9:00pm to 9:00am) and then is getting a break for 12 hours. Here are some pictures of her beautiful little smile!

We appreciate the prayers, well wishes, meals, thoughts, kind words, and support immensely. Thank you all so much!

Minor setback... Monday, Nov. 6

Update: Monday, Oct. 6

Things were progressing nicely last week and we were hopeful that discharge was going to occur last week. However, for unknown reasons, Mae started to lose weight which meant it became necessary to begin the TPN regiment again. Although this was disheartening, the TPN dosage that she is on now is extremely minimal compared to what she was originally on and she does not have lipids being infused at this time, only TPN. Approximately 20% of her calories are coming from TPN and 80% are coming from the carbohydrate free formula.

Over the weekend, Mae did show a trend of weight gain for two days (Saturday and Sunday) so we are hopeful that she will continue this and then we can start to ween off of TPN again. The next steps after this will be determined once she has shown growth with the potential options being an IV with dextrose to get extra carbohydrate calories or increasing the amount of proteins and fats in her formula to get the extra calories.

Although this was difficult at first because we were preparing for her to come home, we are thankful that it happened at the hospital and not at home because it would have required another return/admit to the hospital. We want her at home when she is stable and healthy. The boys were able to come and visit this weekend and they LOVED seeing their little sister as she is babbling and interacting with them. She is truly a blessing and seeing the three of them together was beyond wonderful.

Smiles!

Update- 10-30-17

Mae is doing very well with her fructose and has reached the 'highest level' to add in order to create a formula that has an appropriate ratio of fats, proteins, and fructose to create the caloric intake for growth! This is fantastic news! However, the best news is that she is, as of Saturday night, off of her TPN! She has made so much progress/growth in the last seven-nine days that the doctors believe she is absorbing enough calories by mouth to warrant taking her off of the TPN, she does still have an IV of fluids for 12 hours during the day, but, overall her health has improved tremendously. Right now we are at the point that she will either 1. come home with an IV for fluids, or (if she shows more improvement) 2. will come without an IV. Regardless of either of those, the best news is that she will not be on TPN. She will have her central line in place when she is eventually discharged in case she loses weight or is failing to thrive. 

On a neurological level, we are very encouraged at the signs that Mae has shown over the last couple of weeks. She is starting to give us meaningful smiles, make beautiful eye contact, and has started to make baby babbling noises when engaged with us. This is wonderful news and we are thrilled at her progress. We are hopeful that things continue on this path, she is truly a miracle and has the most precious smile and personality. 

*We have not been given a discharge date yet, but, we are hopeful within the next week to have her at home with us. We appreciate the continued love and support that we have been given, we are extremely fortunate to have such amazing people in our lives. 

Next level

Quick update- The fructose is going well still! Praying that it continues to be successful! They increased the fructose dosage to the next level. If still good on Monday, they will begin to reduce her TPN.

Over the weekend Ryan and I took the boys to the 'Fallin' for Halloween' in the park, the boys had a great time!

Improving

As we come to the end of our fourth week at UM Children’s,  we are starting to get some good news and closer to getting home.  We had initially presumed we would be going home earlier this week.  Stacy and I completed a two day training for home care of the Broviac and TPN administration. However due to some unexpected PROGRESS, the doctors decided to keep her 2 more days to test some treatments/increased volume of a special formula (by bottle/mouth). She responded well and therefore they are trying a fructose infusion starting today at noon. If she responds to that, we have a path to major improvement! Dr.'s thought we would know within 48 hours. If it goes well, then it appears she will go through an approximate 10 day weaning period (at the hospital) off of TPN and we COULD come home with no chemicals/no machines!! If she does not tolerate the fructose, then we will probably come home Monday or Tuesday back to plan A (on TPN). She is catching up in her growth and we are all cautiously optimistic about this new path.

Oct. 10 Update

Update -  Tomorrow morning at 7:30 Mae will have a procedure to insert a central line into her chest that will go directly to the vessels surrounding her heart. The central line, also called a Broviac, will be responsible for distributing the TPN throughout her body 24 hours a day. While under anesthesia for this procedure, she will also get a follow up MRI to compare to the one that was done prenatally and at birth. We are monitoring her input and output very carefully, she is getting between 22 and 25 ounces of  special carbohydrate free formula each day.  We are going to be learning Broviac care this week and weekend, with the hope that we will be discharged early next week, that would be the best case scenario. Mae has gained weight for the past four days in a row! That is a huge milestone, she is getting the majority of her daily nutrition through the TPN, but her formula is being absorbed a tiny amount as well.

Although no parent wants to be in the hospital, we are very fortunate to be receiving the best care possible. We have a gorgeous view from the room that overlooks a park and forest. The  leaves on the trees are changing colors and it is absolutely beautiful. This past weekend Ryan, the boys, and I went to a tailgate for the Michigan and Michigan State football game… Go Green! We also participated in crafts and the boys made some special things to take home. Mae has been given the clearance to be able to leave her room, so we have been taking walks around the hospital for a change of scenery.

Thank you to everyone who is continuing to pray for Mae and our family. We appreciate the prayers more than anyone could imagine. It is a very the overwhelming feeling that we are surrounded by so much love and support. We are truly blessed.

Stable-Mild Progress

We are still at U of M and the doctors are searching for answers as to why Mae is 'not thriving.' Yesterday, under sedation from anesthesia, she had a PICC line (PICC Line) inserted into her upper right arm to the major vessels near her heart. The procedure went well and they are administering TPN (Total Parental Nutrition) so that Mae will get the nutrition she needs to start to gain weight and develop. She has also been eating a special carbohydrate free formula to aid in her growth. The doctors, specialists, and nurses are all working together to try and figure out what might be wrong with Mae and her inability to properly digest food to get the nutrition she needs to grow. We meet daily with her 'team' and they are analyzing blood work, stool samples, and biopsies from her intestines/colon/stomach to try to find a solution.  They are leaning toward the answer being some type of congenital malabsorption issue. We have not been given a firm time frame for return home but are hopeful it will be within the next two weeks.

The hospital has fantastic family services for us, the boys were able to come and visit this past weekend and participated in 'medical play' where they got to choose a stuffed animal and give it the medical attention that Mae has (IV, PICC, heart monitors, ID bracelet, etc...) She has a private room where we are allowed to stay/sleep in a chair/on a couch. While we were both with her around the clock for the first five days or so, we are now taking turns back and forth staying days/nights with her, while trying to maintain some normalcy with the boys at home/sports/school/etc.

Sept. 25 at U of M

Sept. 25 Update- We are in the hospital at U of M as Mae's weight continued to drop over the weekend. We arrived to pediatric ER yesterday afternoon and were promptly admitted to the hospital. In the ER they performed an ultra sound on her brain and fluid levels/cyst/ventricles all appear as they did at birth, no additional swelling and no increase in fluids. Mae has had several blood draws and tests to try and figure out why she is having constant soiled diapers and not able to gain weight. She is on IV fluids as she was dehydrated and she's unable to eat while they're running tests and monitoring fluid in/out which makes for major irritability during her awake hours. Hoping to resume feeding once we meet with gastrointestinal specialists. Once again, we know we're at the best place for her as we're receiving top notch care. Based on discussions with pediatricians and other staff, our stay here will be until she's able to keep food in her body and get nourishment while gaining weight. 

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. 

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.