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