“The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be” –Horace Bushnell

The life challenges Malachi has faced have made him grow; they have made our entire family grow. These challenges have kept him alive. Malachi is an overcomer.

Each time I wake up and see his sweet face looking back at me, I am reminded of the miracle he truly is. Simple things like going outside and feeling the fresh air touch our faces, or rocking him on the porch outside, seem so monumental. For a long time I struggled to see past the next arterial blood gas, chest x-ray, or head ultrasound. There was a time when I held Malachi and thought it might be my last.   I just knew I couldn’t bear to lose another child. I would hold him—and try to remember ever piece of him—every smell…every crease on his hand.  Many tears have fallen on his precious face as I cried out to God to spare his life. Each venture outside, each new morning is something to be celebrated. Every day is a beautiful day to be alive.

If Malachi could express how he has been spending his days, I am sure he would talk about the first time he placed his little toes on the plush grass outside, or the time he got in the pool at grandmas, and how he splashed the water with his legs & feet.  He might discuss his story times with mom, going for stroller rides in the neighborhood, or snuggles on the couch with dad. Malachi is learning that life can be fun. He is learning that there is LIFE outside of the NICU, and that life can be joyful.

Each and every day I strive to show Malachi how truly important he is—that he is valuable—that he is LOVED.

We visit Duke Children’s Hospital for Malachi’s Neurological, Eye, & GI follow ups, and every time we go I see at least 5-10 children that are either wheelchair bound, or severely handicapped.   I am always amazed at how many smiles I see on these children’s faces. They are beautiful, loved, and perfect in their own unique ways. Unfortunately, nothing in life comes easy for them; and they will have to work hard in life to do things that most people take for granted. Does the value of these children diminish because they do not walk, or communicate as well as the child that is the star athlete? Are they any less important than the A honor roll student? Never. They are just as treasured, they are just as significant, and they are just as precious.

During my time in the NICU I have met several families that have been through similar journeys as ours. One lady in particular has greatly helped me in my passage towards embracing the unknown of Malachi’s life, and valuing him for who he is, and not what he will be. Her twin boys were bon at 24 weeks.  She writes in her blog:

“Our boys aren’t the micro preemie unicorns; the ones who have no lasting effects.  I sometimes think those kids are merely urban legends.  I used to be at a loss for words when people would share the tale of their second cousin’s grandson who weighed two pounds at birth and is now a strapping linebacker headed to Harvard. I know the folks meant well, but their story is not most families’ reality.  I now smile and say “how wonderful, but your cousin’s grandson is the exception to the rule.  Most micro preemies face more challenges and lingering effects from their prematurity. Our guys are doing phenomenal, but they still have lots of therapists, doctor visits, and challenges.  Other preemie friends face even more daily struggles. In any case, that’s ok. They are loved.  They are survivors.  They are valuable.”  I hope in my own small way, one person at a time I can change people’s views of prematurity and maybe even kids that are differently-abled.  That not every story has to end with the preemie unicorn.  That the kid who uses a wheelchair to get around or an iPad to communicate is just as valuable and awesome as the kid scoring the touch down or winning the spelling bee.  In the long run, most kids won’t grow up to be the president, the next Mother Theresa, Michael Jordan, or a musical superstar. What will matter in the long run is how we teach them to love.  Everyone can love and be loved.  That is what matters. “ (Etheridge, 2014 http://www.prayingforhisblessings.blogspot.com)

It is amazing the transformation just a couple weeks can make.   I remember sitting in the nursery rocking Malachi one day and crying out loud to God “Lord, you are going to have to reveal yourself to me” after feeling as though Malachi didn’t even know who I was.  He didn’t smile, he barely looked at me; and I was consumed in fear about his cognition.  It was not until 5 months (6 weeks corrected) that Malachi smiled, and then he began to track me—to respond to my voice & presence. He knew me!  At 8 weeks corrected he began to “coo” and baby talk.  Sometimes he seems to be having a full on conversation with me.  He bats at his toys, moves his little…well not so little anymore…arm & legs, as if he is jumping in excitement during play time. He amazes me every day.  It is as if I can feel God saying “I’ve got this Allison—be patient; I will reveal myself to you in my timing.”

“Nonviable,” “blindness,” “deafness,” “cerebral palsy,” and  “mental retardation”–terms that are often used to describe 23 weekers.  Many of these words were proclaimed over Malachi’s life.  Doctors suggested that it may be best not to monitor my babies, or perform medical intervention to save them.   The statistics for 23 week micro preemie survivors are discouraging. I was told his chance of survival was less than 20%, and that surviving micro preemies often live a life that is “less than quality.”  Malachi sustained a grade IV/III bilateral brain bleed.  The left side was worse than the right.  Malachi can definitely see—he is not deaf, and so far he is meeting his developmental milestones for his corrected age.  I am thankful that the doctors did give my babies a chance, and that my Malachi is living.  I am so grateful for modern medicine, and how far technology has come.  But, I also know that the doctors are not God.  God has the ultimate say over the quality of Malachi’s life and his level of independence.  There is power in prayer.

“Then they cried to the Lord in their trouble, and he delivered them from their distress.  He made the storm be still, and the waves of the sea were hushed.  Then they were glad that the waters were quiet, and he brought them to their desired haven.” Psalm 107: 28-30

We had our first physical therapy evaluation last week (at 9 weeks corrected), and the therapist was shocked with how good he was doing.  She said “I would have never known he had a grade four brain bleed; let alone that he was a 23 weeker.  Of course there are some things that Malachi will need help from physical therapy with.  Malachi tends to have more extension than flexion; and he has some mild tightness in his thigh muscles and trunk—this is a result of some mild spasticity. However, every day I work with Malachi in stretching his muscles, increasing his range of motion, and assisting him in meeting his milestones. In the upcoming weeks we are working with Malachi on learning how to roll over, how to grab and pull up his feet, and holding/playing with toys. He will have physical therapy once a week for 60 minutes. The area of Malachi’s brain that was damaged not only controls his motor skills, but it also controls language. —therefore, we are constantly talking, reading, and singing to our sweet boy to help him build language skills.  Our prayer is that the right side of the brain will take over the function of the injured areas of the left side of the brain. Brain tissue cannot regenerate, but the doctor’s state that many times with therapy the brain can form new connections and “rewire” itself in a sense.  We are praying for complete restoration of his brain.  We are trusting and believing that Malachi is taken care of.  We are grateful for the Grace that God provides; he loves us—and the promises & plan that he has over Malachi’s life cannot be thwarted.

“Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise” Hebrews 10:23

We also had a very long appointment at Duke with the early intervention specialists that included a 3 hour stay, and blood work.  The blood work revealed that his anemia of prematurity had greatly improved, and although his Calcium levels are still a little low (premature babies do not get that boost of Calcium and vitamin D in the third trimester)—they are improving, which is encouraging.  Once again—all the doctors and staff were blown away that Malachi was a 23 weeker.  Malachi is 2 ½ months corrected age, and developmentally he is doing everything at this point that he should be doing.   In fact, in some areas, such as head control—he is actually more advanced than a 2 month old. However, we are still very much aware that the future is still in large unknown at his point. But, I rejoice in ANY good news I can get. The doctor also did not hear a heart murmur—which is an indication that his open PDA in his heart may be closed.  He will have an echocardiogram next week—but we are praying it will be closed (so he won’t have to have heart surgery to close it).  Overall, I left the appointment feeling encouraged. I told the doctors—he is my miracle!  Before leaving, the doctor looked at me and said “keep doing what you are doing—you’re a great mom.”  I held my head high as I left—I love being Malachi’s mom; and I am so proud of him. Malachi has shown me that children are so resilient.  It is true when they say—you can never trust a preemie.  Malachi smiles at us—and you would never know all the pain and suffering he has had to endure.   And while we do not know exactly what deficits Malachi may or may not have—we know that with therapy, prayer, and faith in God nothing is impossible. He is already doing SO many things we were told he would never do. We no longer live “second by second” as we did in the NICU.  Instead, we have now learned to just take one day at a time.  We rejoice with Malachi with each success; and when we meet a bump in the road—we just keep on moving forward.   We stay busy with appointments, but my job as Malachi’s mom is to keep his daily routines as normal as possible.  I wake up each day with the hopes of making Malachi’s life joyful!

Prayer Requests for Malachi:

• Brain—pray that his 6 month follow up scan of his brain will be encouraging.  Pray that he meets his milestones, and that his shunt continues to work.
• Spasticity—we pray that his spasticity will improve, and that it will not hinder his ability to walk in the future.  We pray he will not develop seizures.
• Improved vision & tracking (appointment for vision is in the beginning of July).
• Reflux & gas pains (as we are transitioning from breast milk to formula since my milk supply has dwindled).
• Heart—that the PDA is closed.
• Lungs—that he will not get short of breath with activity.
• Bones—that they will strengthen and grow.
• Cognition—Malachi is catching up in weight and height (12 lb 8oz), but his head size is a little small when compared to other babies his corrected age. Pray that his brain will grow properly, brain myelination will occur, and his brain will find ways to “rewire” itself.

My husband was asked during our interview with the Wilson Daily Times (http://www.wilsontimes.com/News/Local/Story/37251352—LOSS–HOPE-AND-JOY) “what do you hope for Malachi in the future? Jake, with tears in his eyes explained that he use to have dreams of having a son that was a great athlete, and involved in sports.  But, after losing a child you change your perspective.  He states “I just want Malachi to be that best Malachi he can be…I want him to know he is loved…I want him to live a life of hope & joy…I want him to be happy.” It is true—while we are amazed with the strides Malachi has been making—it is hard not to worry about the unknowns.  And that is ok; we know that ultimately God has a plan—and he is taking care of Malachi. We know that he is loved, and he is perfect to us.

Cast all your anxiety on Him, because He cares for you. (1 Peter 5:7)