Micah Smiles benefit concert at The Ark to raise money for C.S. Mott Children’s Hospital

By Princess Gabbara

IMG_4535The Micah Smiles benefit concert will take place Wednesday, April 30th at The Ark (located at 316 S. Main in Ann Arbor).

Chamber folk duo Acoustic Eidolon will headline the concert with a 20-year-old Mott patient set to open the show with two original songs. One is titled, “Don’t cry because it’s over, smile because it happened.” Mott’s music therapist Bob Hoffman and Mott’s Micah Smiles therapy fellow Meredith Schlabig are also scheduled to perform.

Proceeds will support the C.S. Mott Children’s Hospital’s music therapy program.

The Micah Smiles Benefit Concert is in memory of Micah Canvasser, who passed away just over a year ago from necrotizing enterocolitis, an intestinal disease that’s relatively common in premature infants, as well as End Stage Renal Disease, which causes permanent kidney failure that requires dialysis or a kidney transplant to live.

Micah Smiles.jpg

Micah and his twin brother Zachary were born three months prematurely. While Zachary was able to go home after three months in the neonatal intensive care unit, Micah’s hospitalization continued. Micah was only 11 months old when he died.

“Honestly, the best way I’ve been able to cope and find peace is by giving back to others,” said Micah’s mother Jennifer Canvasser. “For us to be able to give back in this way is just incredible and beautiful. We’re so honored and blessed. There are really no words to describe it.”

Canvasser also said that she and her husband, Noah, integrate Zachary into the giving back process as a means of being positive examples of how to live effectively after experiencing a tragic loss.

“Zachary was always there even when Micah was in the hospital. He would sleep next to him,” she said. “The connection still lives on even though he’s no longer physically with us. He kisses Micah’s picture all the time and constantly asks about him. That’s another thing that helps me cope because I lost a son, but he lost his twin brother.”

“For us to be able to give back in this way is just incredible and beautiful. We’re so honored and blessed. There are really no words to describe it.”

Shortly after Micah’s death, the Canvassers started the “Micah Smiles Fund” in honor of their son’s memory by expanding the hospital’s music therapy program so that it could reach more children. To donate, please visit the Micah Smiles Fund’s official Facebook page.

In addition, they started the Micah and Zachary Giving Library, in which families with infants in Mott’s NICU receive one book each week to read to their children and to take home at the end of their stay. To date, the family has donated approximately 7,000 books.

Although this will be the first Micah Smiles benefit concert, the Canvassers hope to make it annual in hopes of spreading awareness about the positive effects of music therapy.

“Until you experience it first hand, you don’t realize how effective it is,” Canvasser said. “Music heals and brings calm when everything else in the world is spinning out of control.”

Tickets for the Micah Smiles Benefit Concert are $30-100 and can be purchased atwww.theark.org.

Princess Gabbara is an entertainment intern for The Ann Arbor News. You can reach her at pgabbara@mlive.com.

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“Why is his hair so long?”

DSC_6643My two year old son has long hair. He is often mistaken as a little girl. This does not bother me, if it did, I would surely cut his hair. For over a year, many people have urged me to cut Zachary’s hair. They make jokes. They tease. They judge. They push. That’s fine, I don’t let it bother me. Very few people understand what my family and I have been through and that seemingly insignificant things – like a little boy’s hair – actually hold deep meaning to a mother who’s lost a son.

“Why is his hair so long?”

I recently posted some beautiful, special, precious photos on our Micah Smiles page. We delivered books for babies, for the NICU’s Micah and Zachary Giving Library. We went upstairs to the PICU, where Micah lived for nearly 10 months, and visited with Micah’s primary nurse, Nick. We showered Micah’s photo on the Wall of Courage with kisses and smiles, exclaiming how much we missed and loved our precious son. We headed up to the 12th floor to visit our friends whose 9-month baby girl is fighting a life-threatening battle.

I posted pictures of this deeply special, beautiful afternoon and in the comments:

“Why is his hair so long?” I responded, “because it is beautiful.”

But what I really wanted to say is…
DSC_3291Zachary’s hair is long because Micah’s never will be. When my son Micah was born, he had a head full of thick beautiful hair. When Micah became critically ill with a life-threatening disease, he lost all of his hair. Micah went bald. Seeing Micah bald, after he had a head full of gorgeous hair, was a constant reminder of how fragile and sick he was. As Micah’s health improved, Micah’s hair grew back and thickened. When Micah’s health declined, his hair fell out and thinned. IMG_6081

Micah’s last night here on Earth was spent in our arms. We held Micah tight and he knew he is deeply and forever loved. Before I gave my son a final kiss goodbye, I carefully braided and tied the hair at the nape of his neck together. I carefully took scissors and cut Micah’s hair to keep and treasure forever. On the one year anniversary of Micah’s passing, I took out that small envelope of his hair and kissed it, and longed to have my son back in my arms.

To me, Zachary’s hair is a symbol of his health. Zachary is incredibly healthy, vibrant and bright – his long hair testifies this. The tips of Zachary’s hair have experienced our entire journey: Zachary’s three-month terrifying NICU stay. Spending every day in the PICU with Micah. Bringing Micah home for the first time. Our first family walk together. Saying goodbye to Micah. IMG_2090

Before you judge the mother of a little boy with long hair, take a step back and consider the bigger picture. What has this family been through? What has this little boy been through?

Why shouldn’t his hair be long?

Does it surprise you to know that a little boy’s hair could hold such deep, precious, significant meaning to a mother?

Blood Donors and Breast Milk Donors: Lifesavers

My son Micah had a long, complicated hospitalization, during which he received 211 units of blood. That is an extraordinary amount of blood, especially for an infant over the course of just 11 months. I am forever indebted to the generous blood donors who saved and extended my son’s life. IMG_6190

During Micah’s hospitalization, Micah’s care team made it very clear that the benefits of Micah receiving someone else’s blood outweighed the risks. Micah’s hospitalization demonstrated to me the life-saving power and healing properties of blood transfusions. I have deep admiration and sincere appreciation for blood donors. Blood is one of the most incredible gifts you can give to someone in need.

Micah was born three months prematurely. Human milk is essential to the health of premature infants. When mother’s own milk is unavailable for premature infants, pasteurized donor breast milk is the next best option. Yet, most children’s hospitals and neonatal intensive care units do not prioritize human milk as a vital, life-saving intervention for fragile infants.

While healthy full-term infants can metabolize infant formula, the risks of formula for our most premature and vulnerable infants are profound. For fragile infants, formulais often presented as a benign alternative when mother’s own milk is unavailable. When in fact, formula increases a premature infant’s risk of necrotizing enterocolitis and is directly toxic to their cells after digestion. Necrotizing enterocolitis (NEC) is a multifactorial intestinal disease that affects the bowels of premature infants. NEC causes an inflammatory process that can lead to intestinal tissue damage and death. NEC is infamous for it’s severe morbidity and mortality rates, with exceptionally high medical expenses that can range from $100,000 to more than $6.5 million. NEC cost Micah his life.

Blood transfusions are routinely provided to premature infants in need. The risks of blood transfusions for premature infants are often trumped by the immediate lifesaving benefits. Most of us can understand, appreciate and accept the power of blood donations for vulnerable infants in need. The barriers of blood transfusions for vulnerable infants in need are essentially nonexistent. Donor blood is valued and prioritized as the life-saving intervention that it is. Donor breast milk for premature and vulnerable infants in need is not sufficiently valued or prioritized. This must change.

Breast milk is critical for our most premature and vulnerable infants.

There are tremendous barriers that prevent fragile infants in need from receiving pasteurized donor milk. Here are some of the most dogged barriers I’ve witnessed throughout my journey:

  • Lack of full disclosure to families
  • Lack of knowledge or prioritization by clinicians
  • Indifference to the value of human milk that allows it to be interchangeable with formula for very premature and vulnerable infants

When I gave birth three months prematurely, I sat in the recovery area after my cesarean and begged for a breast pump. I had never even seen a breast pump. I just knew I needed to start making milk for my very premature twins. My nurse refused to bring me a breast pump. She said I’d need to wait until I got to my private room.

DSC_2976Hours later when I finally got my breast pump, I began the routine of pumping for 20 minutes every two hours around the clock. I didn’t make a single drop of milk in over 24 hours. My twins’ care team explained that if my milk didn’t come in soon, my babies would be fed formula.

But, wait a minute.

Formula and mother’s own milk are not the only two feeding options available for fragile, very premature infants. Pasteurized donor breast milk is the second best option for our most vulnerable infants when mother’s own milk is unavailable.

Why didn’t anyone tell me about pasteurized donor breast milk?

See the barriers I just listed? I tragically experienced them firsthand.

The use of formula for vulnerable infants has become commonplace in our hospitals. Indeed, there are rare circumstances when human milk is contraindicated for fragile infants, and in these rare circumstances formula is the safest option. An exclusive human milk diet is the safest, healthiest option for the vast majority of vulnerable infants.

It is unacceptable that families are left in the dark. The risks of formula to premature and fragile infants are often not disclosed to families, and the option of pasteurized donor milk is often withheld. Many mothers with full-term infants who have an oversupply of breast milk do not know that their milk is desperately needed by human milk banks. Human milk banks and milk depots provide pasteurized donor milk to our most vulnerable infants. IMG_1651

Scientific literature supports the use of pasteurized donor milk instead of formula for fragile infants in need. It is unacceptable that many clinicians and hospitals are indifferent to the tremendous nutritional, health, and cost benefits of human milk for their most premature and vulnerable infants in need. The evidence may not be flawless, but it is surely compelling enough that we must start doing what is best for vulnerable infants now. Sometimes all the evidence we need is right before our eyes.

Not every medical intervention will be based on double blind, randomized control trials. To my knowledge, there is no hard evidence that supports the use of formula for our most vulnerable infants without mother’s own milk. Hospitals give fragile infants formula because it is more accessible, convenient and affordable than pasteurized donor milk, which is a safer alternative for fragile infants without mother’s own milk.

The literature demonstrates that the safest, healthiest option for premature and vulnerable infants is an exclusive human-milk diet. Our fragile infants cannot wait around for more evidence, they need human milk now.

Are you ready to stand up for our most premature and vulnerable babies?

Join the NEC Society and the Best for Babes team for our first nationwide Miracle Milk™ Stroll on May 10th. We’re raising awareness, breast milk donations, and funds so that all of our premature and vulnerable infants can receive the Miracle Milk™ they desperately need and deserve. FB cover

Micah Smiles for Music Therapy

IMG_4535From the night that Micah and Zachary were born three months prematurely, songs and stories became a fundamental part of their lives. We played music and read books to the twins every day, especially when the boys were too unstable to be held. Bob Huffman, Mott Children’s Hospital’s music therapist, began visiting Micah and Zachary in the NICU, early and often.

My first vivid memory of Bob sharing his music with us was in Zachary’s room, when the boys were just a few weeks old. Zachary had been intubated for a week and was really struggling; I was deeply afraid for Zachary’s health and well-being. Bob played his guitar while I stood next to Zachary’s isolette. I held Zachary’s tiny hand and hoped with all my heart that both of my baby boys would be okay and come home soon.

When the boys were six weeks old, everything changed dramatically. Micah’s development of necrotizing enterocolitis meant that Micah’s struggles would be much more intense and severe than Zachary’s. Now when Bob came to visit our family, we asked him to play for sweet Micah. Micah was too sick for snuggles, skin-to-skin care, physical therapy, and intimate interactions. But, Micah loved music.

As Bob played guitar, and when we read stories, Micah savored the sounds by slowing his heart and breathing rate, grasping our fingers, and smiling. Songs and stories were the bridge we needed to build and sustain our bond with Micah throughout his intense hospitalization. When we could not hold or hug Micah, we could still sing and read with him. Stories and song were Micah’s source of peace, comfort and joy as the rest of his world spun around in utter chaos.

DSC_9622One day, Bob was in the middle of his music session when Micah’s central access line suddenly went terribly wrong. Bob continued to play as Micah’s entire care team frantically prepared Micah’s room for a sterile surgical procedure. They ushered Zachary and me out of the room, and then asked Bob to stop playing and leave the room, too. Bob asked to stay. Bob knew that his music would provide Micah with the peace and comfort he so desperately needed. They handed Bob a mask and he played throughout Micah’s entire procedure.

Months later, when we lost Micah, I didn’t know how to live. Without Micah, I couldn’t eat. I couldn’t sleep. I couldn’t talk. All I could do was cry. I needed ways to feel close to Micah. I wanted to give back to other families in Micah’s name. Noah and I considered everything that brought Micah joy. We wanted to find that one thing that brought Micah joy and then give it to other families to enjoy, too. One person stood out: Bob, the children’s hospital’s music therapist.

Micah demonstrated that music provides calm amidst chaos. Music transcends time, space and all barriers. That’s why we started a fund to help expand the children’s hospital’s music therapy program. We named it the Micah Smiles Fund, because of the incredible smiles that Micah shared with us as we showered him with music, storybooks and our love. Through the Micah Smiles Fund, we are able to share Micah’s love of music with other families, and that brings us a deep sense of peace.

Thanks to an incredibly generous community, the Micah Smiles Fund has raised more than $45,000. In January 2014, barely a year after our loss of Micah, the first Micah Smiles Music Fellow (a recently credentialed music therapist) joined the Mott team and is now providing the healing sound of music to Mott kiddos – in honor of sweet Micah.

We are holding a Micah Smiles Benefit Concert on April 30th at The Ark in hopes of continuing the Micah Smiles Music Fellowship in 2015. Please join us for a special evening full of music and love as we celebrate sweet Micah. The Benefit Concert will help to ensure the healing sound of music reaches more Mott families. All ticket proceeds go to the Micah Smiles Fund that fully supports C.S. Mott Children’s Hospital’s Music Therapy Program.

I hope to see you on April 30th!!

Babywearing: a necessity for NICU families

No one plans to become a NICU family. Yet, many of us suddenly find ourselves in this overwhelming situation, with our babies born too soon. My twins, Micah and Zachary, were born three months prematurely. Micah and Zachary spent 91 days in the NICU, and then Micah spent an additional 208 days in the PICU (Pediatric Intensive Care Unit).

Daddy Kangarooing Micah

Daddy Kangarooing Micah

My husband, Noah, and I live in Ann Arbor, where babywearing is as common as Sophie the Giraffe. We purchased our first wraps while our babies were still happily safe and snug in my belly. When the twins were born, each weighing about 2½ pounds, our wraps sat untouched at home. Micah and Zachary struggled to breath and were hooked up to cords, wires, tubes and machines. We couldn’t wrap them when they were intubated and unstable, so we kangarooed them instead.

Prior to wearing your hospitalized baby you must:

  • Understand and know how to protect each of your baby’s lines/wires/cords, etc.

  • Understand how to read your baby’s monitor and be attuned to your baby’s signs of distress

  • Know how to keep your baby’s airway open and unobstructed at all times
    • An open airway includes a leveled chin (not tucked down or hyperextended up) and free flow of air to mouth and nose (not pressed against skin or covered by the wrap)
  • Be skilled at wrapping and unwrapping (practice on a doll or stuffed animal)

SONY DSC

Mama wears Zachary, while we love on Micah

Once Zachary was stable, an expert babywearer from our community visited our family in the NICU. She carefully taught us how to safely wear Zachary, who was still attached to cords and wires. Zachary had a history of severe apnea and troubled breathing, so she was extra careful to show us how to keep his airway open. During her visit, Micah was so unstable that he could not even be held, but it was amazing to wear Zachary and have our hands free to be with Micah.

Signs your hospitalized baby may be ready to be worn:

  • Does not have any emergency breathing episodes
    • If your baby struggles with apnea or troubled breathing, you should wait until she becomes stable before trying to wrap/wear her. The extra time it takes to get the baby out of the wrap is not worth the risk during an emergency.
  • Can be easily handled, moved and carried without any complications

  • All Central, PICC, and other lines MUST be completely secured

  • A baby’s readiness to be worn is all about stability and safety. Babywearing must not pose a risk or jeopardize your baby’s safety.

We fell in love with babywearing immediately. After having to leave our babies alone every night for months, and being physically separated from them for so long, we longed to feel the twin’s skin against ours. We needed to feel them close. We needed to hear them breathe. The twins needed to be wrapped up in love. DSC_1255

One of my most cherished babywearing moments was tandem wearing Micah and Zachary for the first time. Micah was still in the hospital, but stable enough to visit other floors. I wrapped up my boys and just the three of us headed down to the NICU to visit the nurses who saved their lives countless times. I felt so proud, blessed and honored to be Micah and Zachary’s mama. The nurses doted over the boys and were fascinated by our mei tai carrier! I felt like the luckiest mama ever.

While we loved using woven wraps and mei tais while the boys were in the hospital, ring slings offered the most ease, and were the safest option for the boys’ attached cords, wires and tubes.

IMG_7946 - Version 2

See all those lines? Piece of cake with a ring sling!

Benefits of ring slings for hospitalized babies: 

  • Quick in/out

  • Easily adjustable

  • Unloop the wrap from the rings without having to move or unhook any cords or wires

  • Minimal material

Babywearing became an integral, beautiful part of our journey. During Micah’s extensive hospitalization, babywearing allowed me to care for both of my babies at the same time. My babies and I were desperate to be close to one another; babywearing brought us together.

Family Avalon St Photo_edited-1I’ll always treasure our family’s first neighborhood walk at home. I wrapped up Micah, Noah wrapped up Zachary, and off we went with our dog, Benjie. We were finally at home together, a dream come true. Babywearing brought us closer and helped us make up for our months of separation. Micah tucked his head under my chin, Zachary snuggled on his daddy’s chest, and in that moment, life could not be any sweeter.

Babywearing is one of the most incredible gifts for NICU families. However, there are challenges and risks that must be carefully considered before wearing a preemie or hospitalized baby. Besides the obvious need for the infant to be stable, you may need to build confidence in your baby’s care team. Many NICUs and children’s hospitals are not familiar with babywearing. You may need to demonstrate that you have the skills and understanding to ensure your baby remains safe while being worn.

Babywearing provides NICU families with the closeness they so desperately need. If you know a NICU family, ask if you can help them learn how to wear their baby. If you are a NICU family, get a ring sling and work on building your skills so that as soon as your baby is ready, babywearing can bring the two of you together. Babywearing nurtures bonding and intimacy, while keeping the caregiver’s hands free, an invaluable, necessary gift for every NICU family!

Detroit Free Press sheds light: Micah was not destined to die.

The Detroit Free Press recently featured Micah’s story for the second time in less than a year. I am grateful for the support and awareness their coverage has provided in my efforts to honor and remember my sweet Micah.

Surrounded by love

Surrounded by love

Their first story focused on my first Mother’s Day without Micah…how I was coping and learning to live without him, just five months after my loss. The story brought an incredible amount of support for the NICU’s Micah and Zachary Giving Library and Micah Smiles Fund supporting music therapy at Mott Children’s Hospital. The story mentioned that necrotizing enterocolitis claimed Micah’s sweet life, but didn’t get into the details of the disease. You can check it out here if you’re interested.

A Mother’s Wish to Keep her Son’s Memory Alive in Song 

Their second, most recent, story focused on my efforts to raise awareness and advocate for changes to best protect premature infants from the devastating impacts of necrotizing enterocolitis. Specifically, the work of dozens of University of Michigan NICU mothers urging the UoM NICU to establish a donor milk program or milk bank, as well as the newly established NEC Society.

Micah serves as the epitome of preventable necrotizing enterocolitis. He was not destined to die. Micah was not a sick baby. Micah was born early, but incredibly strong and healthy. I watched Micah become sick because he could not properly digest the formula that was added to his breast milk. I whole heartedly believe that if Micah only received breast milk, he would be just as healthy as Zachary is today.

Micah, prior to developing NEC

Micah, prior to developing NEC

It is well known that formula increases the risk of NEC in premature infants. Formula fortifiers used for premature infants are a manufactured, commercialized, processed product that will never offer premature infants the robust benefits of breast milk. The nurses and parents who have witnessed their premature babies respond negatively to formula and formula fortifiers will attest that this is not a benign intervention. We do not need a stack of double blind, randomized, controlled trials to do what is best for premature infants. Sometimes all the evidence we need is right before our eyes.

Top NICUs across the country have established donor milk banks and provide their most vulnerable, premature infants with an exclusive human milk diet. Many of the barriers to achieving these goals are superficial. When neonatologists prioritize and request an intervention that can save the lives of premature infants and saves money, they are very likely to receive it. Lack of resources, funds, and superficial barriers are not acceptable arguments. The UoM NICU does not have a donor milk program and does not provide their most vulnerable premature infants with an exclusive human milk diet because they do not believe the benefits are strong enough. That is infuriating.

Please take a moment to recommend, comment on and share the Detroit Free Press story. Your support is hugely beneficial to honoring Micah and helping to protect other preemies from this devastating disease that stole my baby’s life.

Mom’s Journey through Grief Leads to Helping Others with Rare Infant Disease 

Mama love for Micah

Mama love for Micah

Micah Smiles for Zachary

It’s been over a year since Micah earned his wings. I’ve figured out how to live without him, even though my heart still desperately aches for my sweet boy. I am incredibly blessed to have Micah’s twin brother, Zachary. Zachary carries Micah’s smile and spirit. Zachary plays with Micah’s toys. He snuggles up with Micah’s blankies and stuffed animals. He sleeps in Micah’s crib. Zachary calls out Micah’s name. He asks to see Micah’s photos and watch his videos. Zachary shares his paci, snacks, and sippy cup with Micah by holding them up to Micah’s pictures. Zachary knows and loves his brother.

Micah and Zachary

Micah and Zachary

As Zachary plays, I imagine Micah sitting next to him.

When I buckle up Zachary in his carseat, I remember what it was like having two carseats in the backseat.

When we take family pictures, I try to fill my empty arms by holding Micah’s teddy bear or toy.

Sometimes I dream of how Zachary would react to seeing Micah in person now. Zachary knows Micah’s face from all of the photos, so would he recognize his brother right away? Would Zachary smile and hug Micah? Would he shout, “Mi-Mi?!?!” as he fondly calls his brother. Then I wake up and remember, Zachary will never see Micah again in this life.

When Zachary cries because he doesn’t want to be alone, and he wants someone right next to him, I try to be extra responsive. Zachary lost his twin. That is a devastating loss, even though he does not fully understand his loss right now.

I’ve figured out how to live without Micah by keeping him integrated in our family. We do meaningful, beautiful things to honor Micah all of the time. Micah’s photos surround our home. I write and say Micah’s name every day. Micah is part of our everyday conversation. Micah is my son and always will be. I love Micah just as much as I love Zachary. I will never move on. My heart will never heal. I refuse to allow Micah to matter any less than Zachary.

Brothers

Brothers

Zachary needs to witness all of this. Children notice everything. Kids know how we’re feeling and how we’re coping. Zachary needs to know that intense grief can evolve into something beautiful.

Micah and Zachary both had to fight for their lives when they were born. Zachary could have lost his life just as easily as Micah lost his. I need Zachary to know that if he had lost his fight and Micah had lived, he would be honored, loved, and desperately missed, just like Micah. Zachary needs to know that we will never forget his twin. We will never minimize his loss. We will always be open and honest with him. We won’t try to hide our heartache or pretend like nothing happened.

I need to show Zachary how to cope with a tragic, devastating loss. I need to show him how to live fully, even though I will never be complete again. I hope to teach Zachary how to give back. Be present. Be intentional. Be mindful. I want to empower Zachary so that when he’s older, he has the tools to navigate his life effectively and effect change for the greater good.

The peace I gain by organizing Micah Smiles blood drives, book drives, and music therapy programs, enables me to nurture Zachary. These projects build a community of love for Micah that surrounds Zachary. They provide Zachary with a deep sense of connection to Micah, that transcends the barriers of space and time. They give Zachary meaningful, lifelong traditions to share with his family.

Loving his brother

Loving his brother

I need to show Zachary that it is okay to feel devastated and fulfilled. Vulnerable and courageous. Lost and rooted. All at the same time. He needs to know that intense love comes with intense loss. It is part of life. How we choose to love and then live with intense loss make the difference. Micah Smiles for me, yes. But Micah Smiles especially for Zachary.

Making Mama Milk for Micah and Zachary

I’ve been making mama milk for two years. I feel like I should celebrate, bake a cake or do something to thank my body for nourishing my babies under tragic circumstances. Thanks to my mama milk, I could provide my premature babies with something that no one else could. Somehow I managed to establish a milk supply for Micah and Zachary by relying solely on a breast pump. Neither of them could nurse because they were born too early. Somehow I managed to continue to make milk when my boys’ lives were at risk. I made milk when Micah was critically ill. I made milk before, during, and after each of Micah’s countless surgical procedures. I even made mama milk the night we said goodbye to precious Micah. In the hours, days and weeks after our tragic loss, I continued to make mama milk for Zachary. Mama milk gave me this fundamental connection to my babies.  First time holding Micah

We just celebrated Micah and Zachary’s second birthday, and for countless reasons, I still make mama milk. I’m not sure when I’ll let my milk dry up. Not only does Zachary love to have a warm bottle of mama milk before bed, but when Micah was so sick, my milk was the one and only meaningful thing I could give to him. When Micah was really sick, I couldn’t hold him. I couldn’t even move his body. But, I could nourish him with my milk, and that was an amazing gift.

Micah and Zachary were 24 weeks along when I carefully wrote out my birth preferences. I planned to have a natural, vaginal birth, with as few interventions as possible. I planned to avoid all unnecessary medications. I planned to breast feed the twins immediately after they were born. I planned to avoid formula and pacifiers. I dreamed of having this beautiful, life changing, amazing experience to welcome Micah and Zachary into this world.

Three weeks later, I was on an OR table. Micah and Zachary were born just shy of 28 weeks via emergency c-section. I could not even see my babies after they were born. They were taken out of my body and immediately whisked away to the NICU to fight for their lives. My intense anguish and fear overwhelmed any feelings of hope and happiness.

In the OR recovery area, I begged my nurse to bring me a breast pump. I had never even seen a breast pump. I just knew I needed to start making milk for my babies. My nurse refused to bring me a breast pump. She said I’d need to wait until I got to my private room. I cried and begged, repeatedly, explaining how important it was for me to establish my milk supply for my tiny babies. Kangaroo'ing Zachary

Two hours of crying and begging finally earned me my breast pump. It arrived, but I had no idea what to do with it. I placed the cups on my breasts and hit the button. I pleaded for my body to make milk for my babies.

I pumped for 20 minutes every two hours around the clock and didn’t make a single drop of milk in over 24 hours. If my milk didn’t come in soon, my babies would be given formula. I already hated my body for not holding and keeping my babies safe, and now I hated my body for not making milk.

Nearly 48 hours after giving birth, the smallest drops of milk dribbled down into the plastic cups. I was so relieved and thankful. Soon enough I had a freezer full of milk for Micah and Zachary. I often felt helpless to my twins, but making milk allowed me to do something to help nurture them.

At the hospital, I made milk in the boys’ rooms, in front of their whole care team and our family. I was so committed to making milk, I did not care who was in the room or who was trying to hold a conversation with me. I could talk and make milk at the same time. My babies needed my milk. If seeing me make milk made someone uncomfortable, they could leave the room.

By the time, Micah and Zachary were six weeks old, my milk supply was well established and I had plenty of milk for both of them. But, Micah could not tolerate the formula fortifier they insisted on adding to my breast milk. Micah developed necrotizing enterocolitis and became critically ill. I continued my round-the-clock milk making schedule, through intense uncertainty and discouraging comments. Mama & Micah

“You can stop pumping so often now.”

“Pumping is so awful.”

“You should stop waking up in the middle of the night to pump.”

“Don’t you want some privacy while you pump?”

“Micah can’t even eat anything, why are you still pumping for him?”

Seriously? The one and only meaningful way I could nurture my premature babies was by making milk for them. I failed at keeping them safe inside of my belly, I would do everything I could to give them mama milk.

Throughout Micah’s 11-month hospitalization, I continued to make milk for Micah and Zachary. Neither of the boys learned to breastfeed, thanks to their rough start to life, so I exclusively relied on a breast pump to nourish their little bodies

Tragically, due to necrotizing enterocolitis, we lost Micah when the boys were 11 months old. Despite our tragic loss and the hell that I watched Micah endure, my body somehow managed to continue to make milk. I have donated breast milk to local families who have adopted children and to milk banks who pasteurize the milk for hospitalized babies. Providing mama milk for my babies and other babies in need, brings me such peace and fulfillment. Losing a child is one of the most tragic losses anyone can experience. My heart will forever ache to have Micah back in my arms. Yet, I am so incredibly blessed to be healthy enough to have given my milk to both of my babies and other babies in need. Cheers to making mama milk for two years.

Remembering Micah’s Smiles: How I learned to live after kissing my 11 month old baby goodbye

When I married my best friend, Noah, we were young, healthy, and so excited to start a family together. We expected our family building journey to be simple. But, we struggled with infertility. I was jealous of my friends who got pregnant without even trying. I desperately wanted to have my own child.

Three years later, our miracle babies found us. We were ecstatic to have twin boys on the way. We named the twins Micah and Zachary early in the pregnancy. All of my appointments went smoothly. I was healthy and did everything right. My pregnancy was perfect, until it wasn’t.

At 25 weeks gestation, I went into preterm labor. I was hospitalized and placed on strict bed rest. Our goal was to make it to 28 weeks.

We didn’t.

Micah and Zachary were born at 27 weeks and 5 days gestation. They each weighed about 2 ½ pounds. I did not get to see or hold them after they were born; they were immediately taken to the NICU to fight for their lives.

I struggled with profound guilt and anxiety. I hated myself for not being able to protect my babies and keep them safe inside of me. The alarms, medical jargon, machines, and NICU scene were overwhelmingly frightening. My babies were so tiny, tangled up in wires and cords. I was afraid to touch them because I thought I would hurt them. I didn’t know how to be their Mommy. I fell apart when I left them at night. I was a mess.Go Blue

Thanks to the boys’ nurses and my family, I became a NICU Mommy. I did everything possible to give Micah and Zachary the best chance at a healthy outcome. I expressed breast milk every two hours around the clock. I kangaroo’d them every day. I learned the NICU language. I stayed involved in their care. Micah and Zachary struggled, but overall, they were gaining weight and making steady progress.

When the boys were six weeks old, Micah developed necrotizing enterocolitis and became critically ill. Necrotizing enterocolitis sent Micah into a downward spiral that resulted in end stage renal disease and intestinal resection, not to mention a host of other life-threatening complications. Nearly six months after the onset of his illness, we accepted that Micah would need a kidney transplant. We finally brought Micah home, but he still needed to be back at the hospital six days a week for hemodialysis. Despite our efforts, Micah hovered around 9lbs for months. The bowel resection made it impossible for him to absorb the nutrients he needed to grow.

Micah fought and surpassed everyone’s expectations. Despite his struggles, Micah’s smile and eyes told me everything would be okay. He was not only going to live, he was going to thrive.

I was in the middle of planning Micah and Zachary’s first Christmas and birthday when Micah took a sharp turn for the worse. As the day played out, the situation grew very dim. By mid-evening, the news of Micah’s life coming to an end was spreading to our family and friends. It felt like a nightmare.

I hoped for a miracle.

I hoped that Micah’s kidneys would suddenly wake up. I hoped that somehow Micah would turn everything around and we’d all go home together.

Then, I realized there would be no miracle. My baby was leaving this Earth and I could not do anything to stop it. His time here was over. I didn’t get to keep him. I would have to say goodbye to my precious Micah and all of the dreams I had for him.

I didn’t think I could do it. I told Noah that I could not let Micah go as I held him. His last breath, his last heartbeat, could not be in my arms. Noah insisted that it was best for Micah. His life started with me. It should end with me. And so it did.

I am blessed that Noah and I had hours to say goodbye to precious Micah. We sang to him. We made hand and foot prints in his favorite storybooks. We hugged, kissed and snuggled him tight. Micah knew he is deeply and forever loved.

I didn’t know how to live without Micah. I couldn’t eat. I couldn’t sleep. I couldn’t talk. All I could do was cry.

My grieving heart needed ways to stay close to Micah. I wanted to give back to other families in Micah’s name. Noah and I considered everything that brought Micah joy. We wanted to find that one thing that brought Micah joy and then give it to other families to enjoy, too. One person stood out: Bob Huffman, the C.S. Mott Children’s Hospital’s music therapist.

Through our journey, we found that music provides calm amidst chaos and peace in times of heartache. Music transcends time, space, language and all other barriers, so we started a fund to help expand the children’s hospital’s music therapy program. We named it the Micah Smiles Fund, because of the incredible smiles that Micah shared with us as we showered him with music, storybooks, and our love. Through the Micah Smiles Fund, we are able to share Micah’s love of music with other families, and that brings us a deep sense of peace. It’s almost like we’re experiencing Micah’s joy, as other families benefit from the Micah Smiles Fund.

Thanks to the generosity of our family, friends, and perfect strangers, the Micah Smiles Fund has raised more than $40,000. The Fund is being used to start a fellowship program for recently credentialed music therapists. The first Micah Smiles Music Therapy Fellow was just named and will begin in early 2014. We are comforted knowing that the healing sound of music will reach more families because of Micah.

There is no healing with the loss of a child. I have learned how to live with my loss, but I have an everlasting heartache that runs deep into my soul. It is a part of me and always will be. And I want to keep it that way, because that ache in my soul is Micah.

This journey has given me strength, compassion, endurance, and fight that I never imagined to be possible. I am blessed for the richness that Micah has forever added to my life. Giving back to other families is one of the best ways for me to stay close to Micah. I find peace knowing that other families are better off because Micah lived.