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.