Minor setback...

Update: November 26

Mae has a big week ahead- We will be going to U of M on Wednesday to get the results of her MRI from last month and she will also be meeting with the CHIRP team so this post will be short as we will have more information later in the week.

Last week Mae's bloodwork was not good and she had to restart her infusions- Although this was extremely upsetting we realize it is just a little bump in the road and in the grand scheme of life, Mae is doing amazing things. Her cycle is at 3 hours and resumed with the same medicine dose as before we stopped for the few days.

Mae visited Dr. Padesky, her pediatrician, this morning and she is doing very well. After checking her ears, the tubes look good and in place. Her height and weight look good and the new skills she has started doing- clapping, babbling with more sounds, climbing stairs, etc... are all GREAT things that show wonderful progress! We continue to give thanks for the beautiful miracle that Mae is.

More information will posted later this week.

'Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.' Philippians 4:6

BIG News... Cautiously Optimistic!

Update 11/14/18: Mae is officially DONE with her infusions! Read that again- Mae is officially DONE with her infusions! We are cautious to share this information because we still have the possibility of restarting them, but, for the first time in more than a YEAR, Mae was not hooked up to her infusion pump last night!

The CHIRP team called yesterday and told us that her bloodwork from Monday looked great and they are confident in going to this next step which is to allow her to try and maintain her blood levels herself, without the aid of the IV infusions. We are praying that her body continues to be strong and that she will not need to go back on them. Bloodwork is scheduled for Monday and will continue to be weekly while we maintain her line at home.

At her appointment on the 28th, in two weeks, if all continues to go well, we will discuss/schedule a surgery time to get her line removed- This will be a procedure requiring anesthesia in the operating room. We must keep her line in at home for a few weeks while we make this transition because putting the line in (and taking it out) are major procedures and we want to be sure that she does not need the infusions.

Please continue to pray for sweet Mae while we take this major step forward in her treatment. We feel so fortunate to be loved and cared for by so many people. Mae is truly a miracle and she continues to show us daily just how special she is. Praise God! 

'I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.' Psalm 9:1

Giving Thanks!

Thursday, November 1

Mae's medicine was reduced this week as the CHIRP team and her doctors at U of M are trying to slowly wean her off of her nightly infusions. She is continuing to gain weight and grow even with the reduction in her medicine. (She currently weighs 10.150 kg, which is a little more than 22 lbs.) This is fantastic news as it is showing that her body is handling the transition well. This is a slow process, but, it is nice to see the improvements and steady growth that is happening. Her blood work looked good this week, another encouraging sign. We will continue to have weekly blood draws and as her infusions are being reduced, we are increasing oral medications to keep her blood levels regulated.

Monday was a big day for our family as Mae got tubes in both of her ears and she had her annual brain MRI. This was a long procedure as she had a 'full' brain MRI, which took nearly 60 minutes. Both her tubes and the MRI were done under the same sedation so as to only have to give her anesthesia once- The nurses, doctors, staff, etc... at U of M are wonderful and explained everything in detail to Ryan and I. We are very fortunate to be under their care. Upon the completion of the procedure, we were told by Dr. Green, her ENT, that her ears looked good- no signs of infection or scarring- good indications for the health of her ears. We have not received any word of the MRI results but we are scheduled to meet with Dr. Garton, her neurologist, on November 28th.

Although Mae's procedure was successful, the day was long (and tiring) for everyone- especially Mae. In addition to the above, her line had been flushing 'hard' or 'sluggishly' so we saw an infusion nurse while we were at U of M. The nurse administered TPA (an anti clotting drug) into her line and it had to dwell for an extended period of time- The goal is that the drug broke up any/all blood clots or medicine clots that have accumulated in her central line. Prayers that Mae's line continues to be functional for the duration of its need are appreciated. We are hopeful that Mae can get her line taken out by the end of the year. What a blessing that would be!

UCLA contacted us yesterday and informed us that Mae's (and our) bloodwork has been completed/processed by Baylor University (that is who sequences the DNA in conjunction with the Undiagnosed Diseases Network) and that her medical case is set to be reviewed by the team/panel of doctors on November 15th. We will hear from UCLA after the review meeting with a formal plan for her clinical visit at UCLA with Dr. Martin.

There are so many emotions for our family right now as we reflect upon how much progress has been made in the last year. Everything is special to us- The fact we could all be together for trick or treating last night, the fact that Mae is at home and not in a hospital, the fact that we can sleep under the same roof, etc... All of these are 'small' things that many take for granted but we are so thankful. As always, we appreciate continued prayers for healing for Mae and prayers of perseverance for Mae's medical team. We are truly blessed.

"I will give thanks to you, for I am fearfully and wonderfully made. Your works are wonderful. My soul knows that very well." Psalm 139:14

Take heart!

Update: October 17, 2018

At this time last year we were pretty much trying to survive day to day- Mae had been admitted to U of M for 23 days and, little did we know, we weren't even a third of the way through the admission. At that time she was just an infant, sleeping most of the day and oblivious to the medical teams that were surrounding her, machines that were helping strengthen her weakened body, nurses that kept constant watch, and family/friends who helped Ryan, the boys, and I make it through that long, difficult stretch.

Fast forward to today and the miracle that Mae is cannot be overstated. She is doing so many things that we were so uncertain of a year ago. She has a formula that she can drink, food that she can eat, the ability to crawl, roll over, and walk, sounds that babble from her sweet lips, squeals of delight that literally could bring you to tears, and the simple recognition of her family. Although we are realistic to understand that her medical future is still largely unknown, we are comforted by the many milestones she has met and the fact that she continues to grow and develop. God is good. 

Results from Mae's swallow test last Friday confirmed that when she is drinking 'thin liquid' (formula, water, etc...) she is having episodes where the liquid is penetrating her airways but she is able to 'protect' them and there is no evidence of aspiration. Therefore, we will continue to feed her using a preemie size nipple to ensure the flow of liquid from her bottle is slow enough not to choke, gag, or cause aspiration. There will be a follow-up study done in two months. 

Mae was re-evaluated by our local school district last week and she was found to be doing great in some areas and is showing delays in others. We will be creating a formal Individual Family Service Plan this week to ensure that we are getting all necessary resources to help Mae reach her full potential. Therapists and coordinators will be starting twice a week home visits with Mae in the next week or so. We are hopeful that these additional resources will benefit her. 

Mae 'failed' another attempt at switching her formula to the Pediasure blend- We will continue to use her Ross Carbohydrate Free formula with the addition of fructose (which is what we have been doing.) She continues to be able to tolerate these feeds and is doing very well with the mixture. She currently weighs a little more than 21 pounds and her blood work this week shows that she is doing well with the switch of TPN to her dextrose hydration/medicine. Fantastic news! We will continue to have weekly blood draws so that the CHIRP team can assess her. 

We went to a local apple orchard over the weekend and it was really great. All three of the kids love being outside in the fresh air and the simple fact that we can all be together is not taken for granted. As always, we truly appreciate everyone's prayers and kind gestures, we know that each and everyone of you have your own lives, and yet, you take time to check on us and pray for us. We are certainly grateful and blessed. 

"I have told you these things, so that in me you may have peace. In this world, you will have trouble! But, take heart! I have overcome the world." John 16:33

Moving forward...

Friday, Oct. 5

Mae will be taking a major step forward today in her intestinal healing process- Her TPN medication is being tweaked to include a dextrose solution base instead of the corrosive TPN base. This is incredible news and something that we have been working toward since being put on TPN nearly one year ago. Mae's eight hour medication cycle and infusion pump will remain the same, but, her solution bag will be different. In a 'perfect' world, and if all things go as planned, there is the potential for Mae to be off of this medication and have her Broviac port removed around Christmas- What a blessing that would be! Mae will be getting weekly blood draws, from our home health nurse, to monitor her levels as we start to make this transition. 

Mae will be getting tubes placed in her ears at U of M on Monday, October 29th. She has not had any ear infections, but, she has failed two hearing tests since June and her ear drums are not functioning properly. We are hopeful that the tubes will improve Mae's hearing and encourage her speech to develop. Currently Mae does not have any words that she uses, she does babble and make sounds, but there is no connection with her speech and everyday objects/people. Within 24 hours of the surgery we have been told that Mae's hearing will improve significantly- As we approach this date we will be so appreciative of prayers for strength during the procedure and prayers of healing after.

Mae has a 'swallow test' at U of M next Friday, the 12th, to examine/explore issues that she is having with swallowing certain liquids, particularly water. This will be a follow-up study to a procedure that was done over the summer.

Regarding Mae's formula, we will be working toward switching her over from her specialized formula to Pediasure Grow & Gain. We attempted to start this change last week and Mae did not handle the transition well, she vomited and was sick for nearly three days. We will give this transition another attempt in the coming week. We will be starting slowly- Mixing 25% Pediasure to 75% formula. We are hopeful that in the next few weeks to a month that we can completely transition off of her formula and strictly onto the Pediasure Grow & Gain.

As always, we truly appreciate the prayers, thoughtful messages, reaching out to see how we are doing, cards, etc... We are blessed, beyond measure, to be parents to Mae, Will, and Luke. God is good and we are thankful.

'And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.' Colossians 3:15

Resuming regular schedule...

9/17/17: Whew! What a wonderful summer we had! Lots of updates so I will be ‘brief’ with this post as I plan to resume a regular posting schedule!

Mae was accepted to the Undiagnosed Disease Network program at UCLA in California. We will be meeting with Dr. Martin Martin, the world renowned congenital diarrhea specialist sometime this fall/winter. Currently, we are in the process of waiting for our (Ryan, myself, and Mae) full DNA to be sequenced (we submitted bloodwork in June). We are in contact with our study coordinator at UCLA and will know more about our visit to California once DNA sequencing is complete and they have planned our clinical visit, probably not until later in October. This is amazing news and definitely deserves prayers of thanksgiving. We are fortunate to have this resource and are thankful for the CHIRP team at U of M for putting us in contact with UCLA. All of Mae’s medical team is searching for answers/links/explanations! Please continue to pray for them as we try all venues to help her/further research for her condition(s).

Regarding her TPN: Mae is on an 8 hour cycle of TPN that makes up nearly 10% of her daily caloric intake! Again, GREAT news! She has an expanded (but still very limited) diet that includes: meats, sweet potatoes, green beans, bananas, carrots, mangos, blueberries, squash, oatmeal, and a few other items. We are beyond happy that she has options for food and that she is doing well with her specialized formula and diet. She is growing and we are getting close (2-4 months, hopefully) to coming off of the TPN. She needs to continue to grow and maintain her weight in order for this to become a reality.

Mae has remained healthy with the exception of a hospital admission at U of M over Labor Day weekend. She spiked a 103.0 degree fever which is MAJOR cause for concern because of her central line/port. Bacteria cultures came back negative and it was determined that she simply had a virus. (Any fever over 99.5 requires a hospital admission for 48 hours to determine if there is an infection in Mae’s blood/central line.) Thank goodness she did not have an infection! She is feeling better now and we’re trying to put back on the weight that she lost while we were admitted- The antibiotics that were given were really hard on her little body.

Mae will be reevaluated by our local school district in the coming weeks to determine if there are any cognitive/motor/social/verbal delays right now. We will work together with Early On to address any of the deficiencies. She will also be going to U of M this week for a hearing test and next week to meet with the CHIRP team.

On August 24th Mae celebrated 365 glorious days! She is officially one year old! She weighs nearly 21 lbs. and has 8 teeth! She is starting to walk short distances without any assistance! She continues to be enthralled with Will and Luke as much as they are with her. She gives kisses willingly and smiles all of the time. She knows what she wants and expects things when she wants them! She wiggles for diaper changes and has truly made all of ours lives better. She is a God given miracle and we could not be more in love with her.

The Lord has done great things for us, and we are filled with joy. Psalms 126:3

Our hearts are full...

Update May 24, 2018

Mae is 9 months old today and what a whirlwind of 9 months it has been! We have been so blessed to have this little girl in our lives and are truly, from the top, bottom, and middle of our hearts thankful for all of the love, support, and prayers that we have been blessed with. It is really difficult to picture our lives before Mae and the immensely meaningful impact she has had on our family, the boys, and our friends. We are continually amazed at the true miracle that Mae is and the genuine happiness and excitement that she has for life.

Developmentally, Mae continues to be on track or nearly on track with meaningful milestones as she appears to be making progress with both gross and fine motor skills. Neurologically, she is functioning as an average 9 month old with no obvious brain related concerns. She is a miracle!

Malabsorptionwise, the CHIRP team has tweaked her TPN to include more calories for growth and electrolytes to keep her balanced. Our team of doctors at U of M are consulting with Dr. Martin Martin at UCLA in California as he is the leading expert in the United States with congenital diarrhea. We are hopeful to try a new treatment option within the next couple of weeks to reduce her stool output: consistency and frequency. As we continue to seek answers for Mae's health issues, prayers for guidance for the doctors that are helping Mae are appreciated. We are beyond fortunate to be cared for by the CHIRP team with weekly conference calls and emails about Mae's progress. Dr. Steien and the team show genuine concern for Mae's well being and they have been nothing short of a God given blessing for Mae and our family.

Mae weighs nearly 18 pounds (44th percentile) and is 27 inches (54th percentile). She has two bottom teeth and is enjoying her bottle, pureed meats, eggs, olive oil, and avocado. She is sitting independently, standing with balance support, and is attempting to scooch/crawl around. She is a persistent little one and knows exactly what she wants and when she wants it. Will and Luke adore her more each day as they take time away from their own playing to talk to her, play with her, and genuinely show her pure love. God is good and our hearts are full.

God is within her, she will not fall; God will help her at the break of day. Psalms 46:5

Mae's Miracle

Mae's Miracle: May 9, 2018

As you all know, Mae is on an extremely specialized diet to protect her from complications related to her malabsorpotion. As a result, her formula is delivered to us monthly and we make her Ross Carbohydrate Free formula daily with 100% spring water and pure, non-GMO fructose. During pregnancy we did not anticipate an issue with her eating and our goal was to give her breast milk for the first year of life, just like Will and Luke. Despite our best intentions and hopes for Mae to receive the nutrient rich breast milk that has been proven to be the best for babies, we were forced to provide her with specialized formula. More than our boys, we knew that Mae needed this breast milk for brain development and growth, among other things.

Knowing this situation was out of our control was like a crushing blow to our spirits and we were saddened, confused, frustrated, and most of all mourning the lost emotional connection that is gained from providing breast milk to your baby. It was not like we chose to give her formula or I stopped producing milk- I had a TON of milk and Ryan and I knew we had to find a way to use it. We decided that instead of letting my milk 'go to waste' that we would seek out a donation center so that our precious Mae would continue to reach an unknown (and simply mind boggling/amazing) amount of babies and families. After all, the production of my breast milk would not have been possible without her. So, since her birth, Ryan and I have made it our mission to make collecting breast milk a priority, which means- pumping 5 to 6 times a day for 10-15 minutes at a time, getting up in the middle of the night to pump, arranging schedules to pump, washing extra bottles, sanitizing supplies, bagging and freezing milk, getting regular blood draws/samples, taking milk to the UPS store, etc... It is a tedious and tiring process, but, one that is important to us, near and dear to our hearts, and one that we feel privileged to do because of Mae.

After researching and talking with the doctors at U of M, we were directed to Bronson's Milk Bank in Kalamazoo, MI. Bronson's is one of ONLY 26 milk banks in the entire United States that collects, processes, and distributes breast milk. Bronson's ships milk to all of the major hospitals in the Great Lakes Region and provides Neonatal Intensive Care Unit babies with necessary nutrition for their tiny, fragile bodies. NICU babies are typically premature (or have health ailments) and are unable to digest formula. The majority of the time the mother has not started producing (and may not ever) produce milk. Human donor milk is used as a first resort to provide these delicate infants all of the nutrients they need for growth and development. A NICU baby drinks approximately eight ounces of breast milk a day as their stomachs are so tiny and their bodies too fragile to digest any man made formula.

As God has shown us, through Mae, there is Greater plan for her, our friends, our family, and strangers whom we will never meet but we are forever entwined with. To date (we are still donating), we have donated over 75 gallons of breast milk, which is over 9,600 ounces! Enough breast milk to feed a NICU baby for 1,200 days or a little over three years. The extent of this gift is immeasurable and we know in our hearts that because of Mae there is most certainly going to be change in this world. We knew that God put Mae here for reason and that she would make a difference somehow. The tiny lives that she is impacting and the moms, dads, grandmas, and grandpas, that are forever grateful for the milk is simply remarkable. She is truly a gift for everyone and we are so lucky to be her parents. Although we most likely will never know what it was or how this donation impacted people's lives, we do know that every ounce was only possible because Mae was born. She truly is a miracle.

"What should we do then?" the crowd asked. John answered, "Anyone who has two shirts should share with the one who has none, and anyone who has food should do the same." Luke 3: 10-11

367 days...

367 days…

Update April 16, 2018: 367 days ago, Ryan and I eagerly went to our 20 week ultrasound to find out if we were having our third boy in our family or the FIRST girl in over 90 years on the Welser side. To say we were excited would be a gross understatement. We arrived to the appointment early, were called back in a timely fashion and went into the ultrasound room where the lights were dimmed and we saw Mae’s heart beating perfectly, it was all so fantastic. The technician asked if we wanted to know the sex of the baby and we delightfully said we did because we were going to have our first ‘gender reveal’ party for our friends and family! We didn’t have one with the boys and something about this pregnancy, our last pregnancy, felt so special. When the technician told us we were having a girl our smiles were beaming from here to Australia and for a brief moment in time, everything felt great.

However, in an instant, with the swift move of the ultrasound wand, everything felt different as if the room became quieter and the lights darker. There was a visible nervous change in the technician as she became alarmed, while trying to stay composed. Sensing something was awry as she scanned Mae’s brain, she nervously moved around Mae’s body taking measurements (again) of her precious arms and legs, her big, round belly, and her spine, all of which looked perfectly healthy. Then with caution and determination, the technician went back to Mae’s brain and scanned, again, this time, trying to remain calm but expressing worry. It was at this time a doctor, unknown to us was called in and the events of April 14, 2017 set us forth on a journey that you could only imagine and with medical terminology that we knew nothing about.

Fast forward 367 days and as Ryan and I ran along the boardwalk in Marysville this weekend we talked about how we could hardly believe that a year had passed since Mae’s initial diagnosis. The emotions that we have felt over the course of this year have truly reached the extreme of highs and of lows. However, through everything, we have felt the love, compassion, and warmth of friends, family, and strangers. Life has a mysterious way of delivering itself and as Mae continues to grow and develop, we are truly astonished at her progress and well-being, so far. We certainly have had setbacks and her future remains largely unknown, but for the present we are loving every fiber of her being and thanking God for the miracle that she is.

We attended church yesterday and the sermon was about ‘tests’ and how we handle tests in our everyday lives: tests of patience, tests of strength, tests of will, tests of belief, etc… Over the course of the last year, to say that our family has been ‘tested’ is a severe understatement. We have been tested in more ways than we could count, but, through it all there have been things that have remained constant which have helped us to pass the tests presented to us: the love we have for each other, our boys, and our family, the belief that we have in God, the love that our friends and families have for us, and the belief that everything happens for a reason: including the miracle that Mae is, has become, and will continue to be.

Mae has had a setback the past few weeks and she has not been gaining weight, as a result, she has required a ‘tweak’ to her TPN to get her the calories that she is losing during the day as her stools have increased in volume and frequency. She seems unfazed by this and continues to smile, beam with energy, movement, and true love. She brings so much joy to everyone’s lives that it’s hard to believe that 367 days have passed since she was inside of me waiting to meet us. As always, we appreciate (and need) all prayers- Specifically for Mae to continue to grow, develop, and reach milestones and for our family to continue to pass the ‘tests’ that we are presented with. We know that God is great and all glory should be given to Him.

‘Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you.’ Deuteronomy 31:6

Perfection... Why not us?

Update 3-26-18

Recently Ryan and I were asked to attend our regional March of Dimes 'Walk for America' kickoff meeting as guests to give our story about Mae and our journey thus far. We jumped at the opportunity to bring awareness toward her medical issues and to help create an environment of tolerance toward others who are perceived as 'different.' Even though Mae was not born premature, the March of Dimes also supports research for birth defects, which Mae has. Ryan led the discussion about Mae and did so marvelously. (He should be/could be a public speaker!) In a mere 15 minutes, he briefly explained our prenatal diagnosis, 'healthy' delivery, limited NICU stay, extended U of M hospital admission, and touched upon Agenesis of the Corpus Callosum, Turner's Syndrome, and TPN related to malabsorption.

Although all of these medical issues are hugely important aspects of our journey thus far and all have created the makeup of Mae, Ryan spent the most time shedding light on how our attitudes have changed drastically throughout everything we have encountered so far. In the beginning, nearly one year ago (on Good Friday) we found out about Mae's congenital brain defect. And, in an immensely confusing, painfully emotional filled single second, our entire world stopped spinning as our perfect little baby suddenly seemed not so perfect. As expected, and as you have learned, we felt a range of emotions from sadness, grief, anxiousness, anger, and uncertainty (to say the least)... Yet, despite all of these feelings, we most strongly questioned, 'Why us?!' Why did this happen to us? Why are we the ones that have to deal with this? Why did we have this diagnosis given to us?

Through prayer, self reflection, family support, caring friends, and the strength of our marriage, we 'quickly' shifted our thinking to, 'Why NOT us?!' Why shouldn't this happen to us? Why shouldn't we have to deal with this? Why shouldn't we have this diagnosis? As we all know, the world is not a perfect place, and despite all of her medical issues, Mae has become a perfect gift. Our precious little miracle baby has made (and will continue to make) us, our boys, our family, and our friends, stronger and more tolerant and accepting humans. She will make others more empathetic towards 'differences' and what is perceived to be 'normal.' She will have an unknown and far reaching impact on the many people that have crossed our paths from student nurses and doctors at U of M, to preschool students at church praying for 'baby Mae,' to parents that hug their children tighter because they are thankful that they are healthy, to strangers that see Mae's line and wonder what is wrong, to the countless people reading this blog that are sharing our journey with us.

In this very imperfect world, we know that one thing can be certain, the gift that we have been given from God, who seemed so imperfect at first, is in fact the complete opposite. Mae has been a blessing beyond anything we could have imagined and in her short seven months since birth, she has opened our eyes to a world that we really did not know existed, because, until her we only thought we knew what perfect meant. But, in reality, you must understand imperfection to truly know perfection.

Medically, Mae has remained stable over the last couple of weeks. She is becoming increasingly interested and aware of her surroundings, she is enthralled with her crazy and energetic brothers, she reaches out to be held, she holds her own bottle and spoon, and feels most proud when she is standing with us. Her hair is becoming longer and poofier and (although I didn't think this was possible) her smile is becoming more infectious and bright. Although we try to capture her positive energy in photos, the pictures just cannot do her true justice. She is perfect in every way.

Ephesians 4:2 Always be humble and gentle. Be patient with each other, making allowance for each other's faults because of your love.

Soaking it up...

Mae Update: 3-12-18 It is such a peculiar feeling to be in a good place but to feel worried that something is going to go wrong. Ryan and I are often asked how sweet Mae is doing and although things have been great for her lately, and we could not be more happy/excited, we are still nervous because it has been a long road to get to 'good' news. Recently, we were asked by one of our neighbors about Mae and, knowing everything that has happened, we gave him our positive news and he looked at us, smiled, took a deep breath, inhaled, and gave us some great advice, 'just soak it up!' Although simple, it is so true. Mae is doing so good, and has been doing so good, that we are really just trying to 'soak it up' while being cautiously guarded that things may not always go this smooth. We are so thankful for everyone who: asks how we are doing, says specific and intentional prayers, sends cards, makes meals, takes time out of their day to better ours, and who show genuine caring for our family. We could not be more fortunate to have such amazing support.

At church yesterday we were greeted after the service by people who were sitting behind us and know 'our story.' They said they could barely concentrate on what Pastor was saying because all they were focused on was how amazingly attentive Mae is to her brothers, Ryan, and I. How her smile is so infectious that it radiates throughout her entire body. How her bright blue eyes can literally light up a room and how her squeals and jabbering (during the sermon, nonetheless) are the best sounds that you could possibly imagine. There is so much good in this little girl that it is so easy to forget there is anything wrong. She is truly a precious miracle and a gift from God.

Mae has been making great strides in development the last couple of weeks. She is starting to sit up independently, albeit for 2-3 seconds, but we're making progress! She is eating meats regularly and doing quite well with her spoon and feeding, we have let her practice self-feeding and seems to enjoy trying. She is reaching farther for toys and is starting to put her arms out to be held by familiar faces. We are still patiently waiting to hear her first giggle and laugh and know that it will happen when it is meant to be. Most likely toward Will or Luke who adore her every movement and fall more in love with her each day.

On a medical note, Mae's appointment at U of M last week went very well. The CHIRP team is satisfied with her weight gain and her blood tests appear to be stable. Thank God! The best news is that her TPN cycle will be reduced calorically by 10% and also there will be a reduction in time from 12 hours to 10 hours! This is AMAZING as it will provide her body more time to recover and work without the corrosiveness of the TPN. (Again, we are thankful for the TPN, but, we will be SO thankful when we, hopefully, do not have to rely on it.) Starting this Thursday, when her delivery arrives, she will be hooked up from 8:00PM to 6:00AM. We are praying that she will be able to maintain and gain weight with the upcoming changes. She will continue her normal feeding schedule with her specialized formula and homemade meats. Prayers specifically for continued growth and development are very much appreciated and needed.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

Blessed and Fortunate

March 1- Mae is continuing to make gains with relation to her eating and also her development. We have found that she does not prefer store bought baby food meat (our dog Idol likes it though!) And as a result, Ryan has been preparing and pureeing her meats daily. She has been introduced to ground venison, ground beef, and ground turkey. Her favorite, so far, is venison and she devours it! Ryan is pretty happy about this- he’s already thinking ahead and looking at booking an extended hunting trip this fall to make sure he gets a deer for his little girl! ;) With regard to her development, Mae is starting to sit up, reach farther for toys, grab at faces, make more purposeful noises (indicating a desire to start talking/communicating with us), and standing with support. She is simply remarkable!

Mae was evaluated by our local school district today (speech therapist, occupational therapist, and physical therapist) and it appears that things are progressing as expected and at an acceptable rate. With that being said, there is quite a range of acceptability at her age of only six months- meaning, she is slightly delayed in some areas but is certainly excelling in others. We will follow up with the school district in three-six months but will continue to receive services from Early On to keep her growth and development monitored.  

Reading on the internet and watching the news the past couple of weeks has really put life into perspective with how great our family has it and how lucky we are. Don’t get me wrong, our daily routine certainly looks much different than many families and we definitely have challenges with Mae, but, we are truly so fortunate. We recently read an article about a little girl who is allergic to water, including her own tears! Could you imagine a baby allergic to her own precious tears? Or the parent who has to take their child to chemotherapy for cancer treatments, or the child who cannot eat anything while on TPN and cries because they still feel hunger, and so many more… Things for us could be so much worse. We know that God is good and there is a Greater purpose for this journey that we are on.

We know that we will have challenges and that things may become more difficult for us but right now we are ‘soaking up’ the good and thanking God for the miracle that Mae is. We’re blessed to be her parents and we’re blessed to have two healthy little boys who adore her more and more each day.

Psalms 28:7 The Lord is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him.

The Most Precious Valentine

Update 2/14

The past few weeks have been stable, and relatively uneventful (medically) for Mae. She has enjoyed snow days with the boys and I, ventured out to church, is starting to make kissing sounds (thanks to Grandma Gayle) and is rolling all over the place! Her blood levels are normal and her nursing visits have been spaced out to every other week so that her TPN can be compounded based on what the bloodwork shows that she needs. She has tried (and accepted) two different kinds of meat- chicken and turkey. She does not 'love' either of them but we are working on increasing her amounts of each and fortunately she has not refused to eat them.

Ryan and I are taking care of her dressing changes which are becoming increasingly more difficult because she is moving like a maniac and grabbing at her cord/line every chance she gets! Although it makes everything more challenging, we are praising God for every movement, sound, smile, touch, eye contact, and roll that she does. The boys have been loving on their little sister more each day. Will is ready for her to talk and walk and Luke always makes sure that she gets her tummy time. Both of the boys are so proud of her, it is truly wonderful.

As is the case for all of us, each new day is definitely an adventure and we are embracing everything new and exciting that is happening in our family. We are thankful for all of the love and support. 

Thankful and blessed...

Update 1-26-18

Mae had her MRI yesterday and Ryan was able to be in the 'tube' with her while they got the necessary images. He gave her a bottle and she was swaddled up by the technicians so as to not move, Ryan said she did fantastic! Thank God! As a result, the radiologist was able to get good images of her brain.

After the MRI, Ryan, Dick, and Mae met with Dr. Garton, our neurologist, in the office to go over the images. Everything looks as though it is remaining stable and fluid levels have not increased! The cyst and her ventricles look good! Amazing news. While in the office, Mae showed off all of her special skills- Tummy time, rolling over, chewing on fingers, smiling, following objects, etc... Dr. Garton was pleased with her progress and said that she is doing great! He believes that she will crawl (Praise God) and that she will walk (Praise God!!) He said that he can see that her neurological pathways have formed because she is lifting her legs, rolling over, and trying to move. This is AMAZING news. She does have delays in some areas (Ex. shifting objects from one hand to the other hand) but this is due to her absent Corpus Collosum which controls and creates the pathways for those tasks. Overall, the appointment was very, very good with excellent and reassuring news.

Knowing that we are doing everything that we can for Mae is extremely gratifying, but, she, herself, is doing so many phenomenal things that the average person may take for granted. It is emotionally overwhelming, and difficult to put into words. She truly is a miracle. As it stands today, Mae is functioning, neurologically, at nearly the best case scenario.

Please know that Ryan and I are grateful for the prayers and support that we have received through this journey so far. We know that Mae's life will be full of more questions than answers, but, yesterday was a great day and a huge step forward for her and our family!

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14

Genetic Testing

Update Jan. 19- This week we met with Dr. Padesky, pediatrician, and Dr. Innis, geneticist.

At the pediatrician, Mae received her four month vaccinations and did very well with her physical exam, her eyes appear straight and focused, her head is strong (she’s a tummy time champ!), and she is meeting all milestones, up until this point. We should (hopefully) start to hear her laughing soon as she continues to smile, reach for toys, and keeps a close watch on her surroundings. She talks and coos constantly with the sweetest little voice that you have ever heard!

At U of M, Dr. Innis discussed Mae’s Turner’s Syndrome and appropriate follow-up care. The focus for her Turner’s right now revolves around vision and hearing assessments and cardiology- We are scheduled for a repeat hearing test (she passed one at birth) in April. In August, when Mae turns one, we will have another hearing test, a vision screen, and a cardiology consultation- she will continue these yearly. All indications so far have shown that Mae’s heart is healthy and fully functional- based on prenatal echocardiogram and assessments/scans from birth.

Working together with Dr. Steien, Mae’s genetics team decided that it would be best for us to explore whole exome genetic sequencing through a company called GeneDX. There is a 30% chance that the results from this test will point us in the right direction as to what is causing Mae’s malabsorption issues. However, that means there is a 70% chance that we will not learn anything relevant from the testing. Results will take 2-4 months and required blood work from Mae, Ryan, and I. The genetic test will look to examine/explore/and decode 20,000 of Mae’s genes (meaning, science is absolutely INCREDIBLE!) and IF they don't find anything then we will have her blood (and ours) retested in 14 months to look for new findings. There is a chance that we will find out about 'secondary findings' which are things not related to what is going on with her currently, but could present problems in the future. The whole process is slightly anxious filled, to say the least. Excitement and nervousness. But, as her parents, we feel that we have to do everything that we can, within our power, to try to figure out what is wrong so that we may pursue treatment options.

While we were at the hospital we ran into Beth, the geneticist from pregnancy (she is wonderful), we saw the palliative care nurse from the hospital admission, and we also saw the nurse who drew Mae's blood nearly everyday in the hospital. (She was SO happy to see us, gave me a hug, couldn't believe how big Mae is, how good she looks, etc...) It was a very full and rewarding day. Mae is definitely making an impact on everyone and for that we are grateful and encouraged. She is a  true miracle!!!

Prayers are appreciated (and needed) specifically for Mae’s MRI next Thursday. We are hopeful that the team will get good images of her brain so that we have accurate information related to her ventricles, cyst, and fluid levels.

Appointment Update

Jan. 11- Mae’s appointment at U of M yesterday went well. The CHIRP (Children’s Intestinal Rehabilitation) team is very pleased with her growth and progress. They wanted to see her gaining an average of 15-21 grams per day and although she is on the low end of weight gain with 15 grams per day, she is still in the desired window. Her weight is in the 53rd percentile and her length is in the 47th percentile. Ryan and I will continue to monitor her weight at home, for now, to see that she is gaining appropriately. Her next appointment with Dr. Steien and the team will be in mid-March. For now, her TPN will remain the same (6:00pm to 6:00am).

We have been given the go ahead to start feeding her non-carbohydrate foods. Mae’s first foods will consist of meat purees. The dietician on the CHIRP team will be in contact with us for other options, which may include: avocados, oatmeal, etc... None of her options will contain carbohydrates and we will be in close contact with the team as this new phase of food introduction starts. We are excited at this step forward and hope to begin experimenting with a spoon and feeding.

Appointments, thanks, and pictures!

Update: January 9

Mae has a busy month coming with appointments for her intestinal rehabilitation (Dr. Steien), genetics (Dr. Innis), neurology (Dr. Garton), and pediatric care (Dr. Padesky). She will be having an MRI on Thursday, the 25th, to examine her brain growth, cyst size, and ventricular size. With all of our attention lately focused on the issues related to her malabsorption, we are hopeful that the fluid in her brain has remained stable or reduced.

The holiday break was fantastic and we were able to enjoy Christmas at home, as a family. We are so thankful for everyone who has continually kept us in their prayers, offered help when needed, sent meals to the house, and just genuinely shown us that Mae is truly a miracle. As we progress through Mae's appointments, we will give updates. Ryan and I are beyond appreciative of the support that we have received and continue to receive. The saying 'it takes a village' could not be more applicable or true. We know that God is good and we are so blessed.