It’s the small things…

November 26, 2015November 26, 2015 MalachisMom3 Comments

It’s those glazed sleepy eyes that I see when the sun comes up. It’s the way you turn your head sideways to get a better look at things. It’s your quirks, your personality-that is both timid and gentle, yet total goof ball-all at the same time. I love all the little things about you-the ins and outs-that make you unique.

I love the way you gently whimper when you’re trying to fight sleep. I love the way your entire demeanor changes to a solemn tone of satisfaction when we take a walk outside. The way that you could swing on the front porch for hours, listening to the wind chime cling and clamor. The way you stare at books with such intent as you try to decipher each picture. The way you laugh with your entire body and splash your chubby legs during bath time…

From your pudgy little toes, to your fuzzy blonde hair that sometimes sticks straight up-I love every piece of you.

In fact, I wish I could take all the small things that make our lives so radiant-and somehow bottle it up.

I live for days filled with simplicity…without appointments, procedures, and checkups. When we can just lay on the floor-blaring Christmas music, or dance around in the kitchen.

I crave these moments…these little blimps of our life that fill my heart to the upmost with gladness and delight.

And to think…there was a time when I didn’t know if I could have you. A time when a future with you seemed dark and distant. When the thought of having you safe in my arms at home was just a blurry fantasy in my sweetest dreams-and a reality I thought I would never partake…

But here you are. And your future is looking brighter than I could have ever imagined.

Sure-we may have to weather through a few storms, climb some mountains, and take on a few set-backs.

But I know you Malachi-and you are strong. The strongest little boy I know.

A little boy that is growing up into this beautiful person…full of LIFE, bliss, and an undeniable charm.

Many people have been asking me how Malachi is doing-and while I usually answer with a simple “he is fine” or “doing good,” which will usually suffice. I really want to tell you more. So much more. If I could sit down with you on a sunny afternoon and chat…I would probably tell you something like this…

Malachi is doing wonderful. Considering his past, his medical history-including a grade four brain bleed & PVL (dead brain tissue), and the bleak prognosis we were given over his life. Yes-he is doing amazing.

In fact, even though October has been busy with appointments and therapy sessions, it has also been intermixed with spontaneous trips to the park, and stops by the pumpkin patch. We try to fill Malachi’s life with moments of absolute joy, by squeezing in tidbits of adventure no matter where we go.

Also, Malachi has also been gaining weight (17 ½ lbs) and meeting new milestones, such as passing toys between hands, sitting up unassisted, and eating more by mouth.

In fact, he loves to eat peaches, yogurt, and carrots (his favorites)-and he makes an absolute mess every time he does so…

Something about just letting me feed him is not sufficient. No-Malachi wants to hold the spoon, and touch the food-and then cover all his toys in a sticky mess.

But, we are trying to make eating enjoyable-so we just let him have at it and deal with the gummy residue later.

…And while I have seen so much progress in Malachi, I would be lying if I told you every day was easy.

You see, while meeting new milestones comes second nature to most children-Malachi has to work extremely hard to do seemingly “easy” tasks. Like rolling, and sitting. There have literally been HOURS worth of therapy to get him to the place he is now.

And eating. While he can sit down and spoon feed fruits and veggies-he has a very difficult time drinking due to low oral tone. Malachi will NOT take a bottle. Not even for a second. If he drinks anything by mouth it is from his cups that our feeding specialist has given to us. This is why Malachi’s G-tube has been such a blessing.

And while I was 100% opposed to getting it when the doctor first brought up the concept, I look back now and can’t imagine life without it.

Yes-it comes along with its own set of challenges, but it is also giving Malachi the nutrition he so desperately needs.

Sure-we get a few odd stares when we try to feed Malachi in public. But who cares what strangers think anyway? We have our routine down. A system that works for us. In fact, I love the snuggle time I can receive while feeding Malachi. It may be deemed “odd” or “different” to most-but it is “our normal.” It is helping Malachi grow and flourish both developmentally and cognitively, and for that, I am most grateful.

While the surgical procedure was intimidating, and it took a little bit of time post-op to get Malachi’s pain under control, I can honestly say Malachi handled it so well.

In fact, the main surgeon described Malachi as “feisty” and went on to say that if he had not taken the breathing tube out after the surgery, Malachi was seconds from ripping it out himself. I found this humorous considering that my biggest fear going into the surgery was the possibility of a difficult extubation process-and Malachi having to stay on the ventilator postop. But God equipped Malachi with exactly what he needed to get through the surgery, and to recover without complications.

Here are a few images from surgery day…

Malachi has also been busy working in physical therapy with our focus being mainly on crawling-however, he does not seem very interested in this…

He would much rather try to pull up on mommy, and climb her like a monkey! He has realized that if he pulls up hard enough, he can stand-and thus see the world in a whole new light. But-there is a saying that goes something like this “you do not learn to walk by walking,” and this proves to be true in Malachi’s case. Due to his high muscle tone in his lower extremities we have to limit standing time, and focus still on floor skills, such as transitioning to sitting unassisted, crawling, and rolling all around.

But Malachi is such a trooper, and I know that he is doing things on his own time table. He always has…and that is fine. I can only push Malachi so hard, and then I have to hand it over to God- our source of strength.

We also recently received Malachi’s twin brother’s headstone. What a bittersweet day. I was in such awe of the beauty of the headstone. It was perfect-exactly what I had imagined for my little boy. But my heart was so heavy in seeing it.

So heavy in having to live with this emptiness.

The memories of his loss.

The guilt.

The overwhelming grief that hits you at any given moment….

It seemed appropriate that the day when we went to Michael’s grave it was raining. It was as if the heaviness of my soul was crying and tears from heaven where flowing downward towards Earth. And as I bent down and placed my hand on the ground-I couldn’t help but weep for my son. The son that should be in my arms, and not buried beneath me.

But with intense grief, there also comes a new level of joy-one that can be felt with such depth. And as I watch Malachi grow up, I can’t help but feel a sense of joy that radiates through my entire being. The kind of joy that I know only comes from our father, Jesus Christ.

You see-if HE is your source of joy-then no one can rob you of that. The Joy that comes from the Lord is lasting. It is forever.

Throughout our day, we talk about Michael often. We show Malachi pictures of his brother, and while he does not understand right now, we want him to know that has a precious brother, one that forever impacted our lives. We want to speak his name. We want him to come up in conversation. We want him to somehow live in and through us.

My mom had a dream the other night that my grandmother, who passed away a few years ago, was holding my Michael and rocking him in her arms. I too had a dream of Michael the other day. It was the first time I could see his face, and he was about the age of Malachi in my dream. He was perfect. Whole. And while it doesn’t make the sting of losing him any less, I do not lose hope. For I know that he is in the very presence of our Lord and Savior.

Sometimes I wonder if twins by instinct know that they are one of two. Malachi has the type of personality that he wants someone nearby at all times. Even if we are playing with toys on the floor-he will periodically place a hand on my chest or my leg, just to make sure I am close. If I leave him, he will whimper-or lift his hands in the air for me to pick him up. And it’s not just me-he does this to my mom, or anyone that will play with him. He doesn’t like to be alone. And sometimes I wonder if that is the “twin” in him.

I was absolutely honored in October to speak at two events for pregnancy and infant awareness month.

Many different individuals gathered for these events- each with diverse upbringings, values, and pasts. Yet, we all shared one common bond. We all knew what it felt like to lose a child…the kind of grief that shakes you down to your soul, and rips you to the core. We all knew what it felt like to have a piece of our heart forever shattered. And while we gathered together-in brokenness-I shared the following words…

“I want you all to know that the life of your child mattered -no matter how brief. Whether your child was lost early on in a miscarriage, died before, during, or after child birth, or in the weeks or even months to come. No matter what the circumstances were-the life of your child was valuable. Their life deserves to be celebrated. And you deserve to be happy again. Your child would want that for you.
A young lady named Lexi that lost her son due to congenital heart disease at 6 months of age wrote the following statement: she says… “I’ve learned that the most radiant people aren’t the ones you see on billboards or whose name is in lights. It’s the quiet survivors who have been shattered beyond belief and have overcome. The ones who grit their teeth and carry on, day after day, clinging to hope, even if it’s by a single strand. “
I love her words. YOU are the quiet survivors. The ones that push onward, despite feeling crushed in spirit. No matter how weak you feel on the inside-you are an overcomer. And that in itself makes you strong.”.

We lit candles in their memory. We released balloons in the sky. And most importantly-we spoke of them. We remembered them.

That is the thing about losing a child. It changes you forever-and it should. Irrevocably. Intensely. For a lifetime-we are changed.

And in a blink of an eye, October was gone. The leaves were changing. And November was rushing in with its crisp winds and all the festivities that come with the upcoming holidays.

November was the start of prematurity awareness month. This month is important-because like a brewing storm or a raging fire-all of the struggles and medical issues Malachi faces are a direct result of his prematurity.

And with Thanksgiving finally arriving, we can’t help but think about how undeniably BLESSED we are to have Malachi in our life. We are blessed to have a loving family, a house over our head, and food to eat. And while we have faced great tragedy this past year-we reflect on how far God has brought us.

Through the valley of the shadow of death.

Through the raging storms.

God has remained faithful.

We are thankful this year for his resurrection power. For his unending love & grace. Just to think…the God of the universe LOVES US-and has called us his own-that is something we can cling to this holiday season.

We love you Malachi….

Absolutely every piece of you.

Everything.

And I love watching you grow… but at the same time, I wish I could just make this moment in time stand still. I want you to blossom, and do all the things little boys your age are doing and yet, just for a second-I wish time would stop.

That the universe would halt-and I could just take in all the simple things about you that make you so wonderful.

We delight in you Malachi, and the blessing you are. In fact, our lives would be incomplete without you in it.

Happy Thanksgiving everyone.

Rejoice in the simple things in your life that make it so splendid. For when years have passed and you are looking back at your life in retrospect-you will quickly see how the “small things” were indeed actually the more vast and meaningful things after all.

8 month old Malachi: A Micropreemie’s Story.

August 30, 2015August 30, 2015 MalachisMom5 Comments

“If I could just touch your hand, maybe my soul could breathe”….I place my hand inside the incubator, and for a second our hands meet. Your tiny precious fingers wrap around mine. Such fragility-with visible veins and a moist stickiness about them. Yet, I could hold them for a lifetime. But, within seconds I notice your oxygen levels going down. “He is just agitated,” the nurse replies. Oh, how my inmost being aches just to hold you. Tears begin to flow…”I can’t even touch my baby without causing harm,” I proclaim. “My body has forever failed you.” I sit beside you instead, watching you squirm about…alarms going off. “You aren’t supposed to have to suffer like this. It wasn’t supposed to be this way.” “I will bring some morphine to help him relax,” the nurse states….”he seems to be fighting the ventilator.” I stare at you from behind the plexiglass. My heart wants to burst. “I just want to touch you. I need to feel you. You are mine-yet, I am empty handed.” …I guess I will go pump. …”it’s the only thing I can do for you.”

I remember this day like it was yesterday. It was a common occurrence for my heart to long to touch and hold my babies…but not being able to because of their fragile state of health. They were holding onto life, and many times I felt as if I was too. I would hold my stomach and mourn. “You are supposed to be inside of me-safe and secure.” It’s not fair! Am I being punished? Could I have prevented this? …All these thoughts of uncertainty and guilt ran through my mind.

Today, I hold Malachi closely-his soft touch and rhythmic breathing eludes a peace and a calmness within me. One hand on my chest, the other holding my hair so tightly…your face nuzzled within my neck. I see my tears falling onto his soft skin and think for a moment…”if only my tears could heal you…” I hold his smooth fingers-no longer sticky and translucent, and think of how far we have come. I longed for so long to hold you, now I never want to let you go. Shouldn’t this be enough? Yet, my mind is weary from frustration. Weekly trips to Duke, long appointments filled with tears and vomit. Weekly trips to Rocky Mount for physical therapy. Weight checks, now feeding therapy. Possible surgery in your future. Yes, you are worth every bit of it Malachi. And what we face now can never be as tragic as the battles we once fought. But, I know it’s hard. I’m trying to make your life as “normal” and ” pleasant” as possible. I try to squeeze in as many tickle tummy, patty cakes, and ” the cow goes mooooo” as I can. Your smile is what gets me through each day. Your smile hits me like a bolt of lightning-and for a second, all my troubles are vanished into the air.

I must admit, the past month has been like riding a wave onto a crashing shore. On one hand, I am elated in the progression I have seen in Malachi. No, Malachi does not roll over, crawl…nor does he enjoy eating (previous post). But, he is the happiest most joyful little 8 month old (4 months corrected) little boy that you will ever meet. Yes, he still has moments of fussiness like any baby, but BOY does his smile light up a room. He has come so far in Physical Therapy. Just recently he started lifting up his feet, and trying to touch his little toes. Malachi has low core muscle tone, and the fact that he can now squeeze his tiny tummy muscles, and hold his legs up is a huge accomplishment for him. He cannot roll over yet…in fact he hates anything to do with trying to roll. But, with a little trunk rotation, Malachi can finish the roll. Sometimes he can roll off his tummy if his hands are placed in the right position, but usually he just props himself up on his forearms and looks around.

We are currently working on trying to get Malachi to pivot for toys, and then we can start learning to belly crawl. While Malachi has the skill set of a 4 month old (for the most part)…you can tell that he has been out of the womb longer. He is not mobile, but boy does he always want to be on the go. You place him on his tummy and he will grunt and move his arms like he is trying to go somewhere. The physical therapist says…”he is more interested in wanting to crawl than learning to roll…” “He must not have read the baby book on development,” she adds…”and that’s ok!” I will say that I have seen a great improvement since last month in Malachi’s ability to sit up with limited support. If you look at a picture of him at 7 months old, and then at 8 months old-you can see that his head control and stability has greatly improved.

Malachi at 7 months old (3 months corrected)...not digging the whole picture taking thing. I think he was trying to eat his shirt. — Malachi at 7 months old (3 months corrected)…not digging the whole picture taking thing. I think he was trying to eat his shirt.

Malachi at 8 months old. Again-not too sure about taking pictures. But isn't that face the cutest? He is supported sitting in this picture. Something he could not do at 7 months. — Malachi at 8 months old. Again-not too sure about taking pictures. But isn’t that face the cutest? He is supported sitting in this picture. Something he could not do at 7 months.

Malachi’s PT always says that he is the most determined little boy. She states: Even if he does struggle in learning to walk, Malachi is going to have “bumps and bruises from trying to walk,” from his incredible resoluteness. “Why would Malachi struggle in learning to walk?”…you might ask. Malachi has been diagnosed with mild hypertonia. In other words, due to the brain bleed that he sustained at birth, sometimes his muscles fire and tighten involuntarily. However, Malachi is such a fighter. He fights like a micropreemie…and that is a strength like no other.

In terms of fine motor skills, Malachi also has completely mastered the whole “grab and put things into your mouth” thing. Toy keys, blankets, fingers, mommy’s hair…you name it…it’s going straight into Malachi’s “mouthy hole,”as we call it. Malachi loves to babble non stop, and he can follow me with his eyes from across the room. We have a long way to go in meeting each milestone, but Malachi is trying so hard-and that’s all I can ask of him. He will do things when he is ready. Yes, it can be extremely frustrating at times, especially watching him seem so disinterested at times in learning new skills. But we will get there. “One day at a time,” I tell myself.

I try to focus on what Malachi can do, rather than what he cannot do. Yes, Malachi struggles…but I am so proud of him and all that he has accomplished thus far. It may not seem like much to you, but in terms of how it could be, it is monumental. I used to cry as I watched other babies, and even other micropreemies that seemed to be meeting milestones more quickly than Malachi. I would compare him to other babies his age and get so discouraged. And then I came across this verse, and I felt it was very relevant to my life. I wanted to share it with you…

“Then I realized that my heart was bitter, and I was all torn up inside. I was so foolish and ignorant— I must have seemed like a senseless animal to you. Yet I still belong to you; you hold my right hand. You guide me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” (Psalms‬ ‭73:21-26‬ ‭NLT)‬‬

…Even though I fail daily, I still belong to Christ, and he is holding me by the hand through it all. Even when I feel alone, he is there.

For a 23 weeker with a grade 4 brain bleed, Malachi has already blown so many doctors away. He may struggle in some areas, but he also has made leaps and bounds. It is so unfair to Malachi for me to compare him to babies that had such different paths in life. How can I compare him to a baby that did not fight for his life? I can’t.

One of Malachi’s Nurse Practitioners wrote to me and said “One of my best memories of Malachi is from the the day we extubated him after surgery and he was “rocking the breathing thing”….I knew that day that your little guy was a fighter and was gonna surprise “medical” people for years to come.” Her words lifted me up. I remember reading her words and crying, as it took me back to that very day. There were so many people that believed in Malachi…even when the statistics were against him.

So what if your baby does not defy all the odds? They are still valuable. Value should not be based on what your child can or cannot do, but rather the joy they bring. Even the parent that cares for the blind child- the child that cannot walk, the child that has limited verbal interactions- they are still valuable. They still bring joy-they still have meaning, and a purpose. So, throw the baby book out the window. Believe in your child. Look for progression, and don’t focus on a time table. Malachi is doing things on “his time” …and while as his mom I want nothing more than to see him live a life of independence and influence. I know that he is already changing me for the better, and that’s a pretty good start.

So while I work hard in pushing Malachi to maximize his potential, I also need a balance. Time to just snuggle, or to just read a book. Time by the lake to reflect and sing songs. Life is speeding by so quickly, and the last thing I want to do is spend all my time worrying about things that no one can predict. Malachi knows he is loved beyond imagination, he is joyful & exceeding expectations. I’m so proud of you Malachi!

Through this journey there have been so many times when I have had to throw my hands in the air and say..” Ok Lord, I don’t understand…but I’m trusting you.” Trusting God in the depths of a storm can be difficult. I know for me it has been hard to trust God after the death of Michael, and watching Malachi go through such immense suffering. When you are deeply wounded, trusting God can be painstakingly exhausting. In your heart you want to give it all to Him, but your crushed spirit is screaming out for answers. You cry out-“why can’t life be easy?” But the problem with an easy life is…it masks your need for Christ. Yes, the past few weeks have been difficult….Malachi is still not gaining weight as he should, vomiting, and refusing to eat at times. But, we have also learned to lean on God for understanding. To trust him, even when we don’t see the bright light in sight.

“Commit everything you do to the LORD. Trust him, and he will help you.” (Psalms‬ ‭37:5‬ ‭NLT)‬‬

So while life is not easy, I am thankful for the struggle. Not because it feels good, but because it is propelling me forward. Would an easy life be more convenient? Absolutely. But, this is the hand I’ve been dealt. And I know that God does not make mistakes. And so we wait. We wait for direction, provision, and guidance.

“Be still in the presence of the LORD, and wait patiently for him to act…” (Psalms‬ ‭37:7‬ ‭NL

So how can you pray specifically for Malachi? Pray for his development, as he strives to meet his milestones. Pray for healing of his brain, and continued functioning of his shunt. Pray that he will gain weight this week, and overcome this food aversion. Pray that if Malachi does have to have surgery for G-tube placement, that it will be void of complications. Pray that we will make the right decision. Pray for his muscle tone in his legs, arms, and core. Complete healing.

People ask me sometimes, “How do you do it? …losing a child, raising a child that is medically complex…I just don’t know how you do it and keep going” or “it takes a special person to raise a child like Malachi.” But does it? Malachi is so easy to love. Sometimes I don’t know how to respond to such remarks. You make it because you have no other choice. A mother that is raising a child with any disability or loss has no other choice but to keep moving forward. You find a way to put one foot before the other. You learn to be happy for the people that never struggle to get pregnant or make it to a term pregnancy. “Rejoice with those that rejoice, mourn with those who mourn” (Romans 12:15, NIV). You rejoice for the person that may have what you have not, because that is what we are called to do. I am so thankful for the people that have mourned with me and shared in my sorrow. When you cry with me, it is as if some of the weight is taken off my chest. It is as if you are helping me carry the load.

You pray for strength, and push onward- because the alternative is not living. You struggle daily, but you pick up the pieces of your broken life and like shattered glass in a mosaic piece of art…you try to make something beautiful out if it.

Showing Malachi that life can be JOYFUL

July 2, 2015July 2, 2015 MalachisMom2 Comments

“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.

First time holding Malachi. He was on the oscillator-high frequency ventilator.

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.

First time getting in the pool at Grandma Stone's house. — First time getting in the pool at Grandma Stone’s house.

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)

Our Beautifully Messy Life-First 3 weeks home from the NICU

June 6, 2015June 8, 2015 MalachisMomLeave a comment

Leaving the hospital walls, and venturing into life at home has been a whirlwind and a rather humbling experience. Living in the NICU and Special Care unit for so long, and then coming back to a life that is vastly different from what it was December 28th, 2014 (the day my water broke at a mere 23 weeks gestation) has been quite the adjustment. Up to that point in my life, I seldom thought about what life would be like if my entire world was shaken, and swept from under my feet. I frequently prayed that God would lead and guide me, and for his protection as I walked through this life. I prayed “Lord, may your will be done!” Have you ever prayed that prayer? We grow up singing songs about wanting to be in God’s will, and “Lord lead me where by faith is without borders”…but do we really mean it? Do we really mean “Lord, even if it hurts, or I lose my life or the life of someone I love; even if I am crushed in my spirit; Lord, I am willing to go through these things if it is the will that you have for me“. I know I have been guilty of praying this prayer, but in the depths of my heart thinking “as long as it does not cause me pain; as long as I am not taken out of my comfort zone.” But, sometimes in order to be used greatly by God we have to be made broken, and allow him to mold us back into the person he wants us to be. Some of Gods greatest works have been done from the beds of the sick, inside prison walls, and in the midst of people’s darkest hour. It is during these times we pray as David prayed in Psalms 31…”Turn your ear to me, come quickly to my rescue; be my rock of refuge, a strong fortress to save me…I Trust in the Lord. I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my soul.”
First Colds, fleeting smiles, and sleepless nights. Our first 3 weeks have been absolutely crazy; but through the good, the bad, and the messy, we have felt God’s unfailing love in and through it all. The first few nights having Malachi home we were absolutely terrified, as we slept with one eye open; peeking at little Malachi to make sure he was breathing. After having a preemie you become excessively aware of your babies breathing, mostly because we are “oh too familiar” with the dreaded as’, b’s, and d’s of the NICU…(apnea, bradycardia, and oxygen desaturations). After the first few nights, we finally began to relax a little; although we still only averaged 3-5 hours of sleep per night (if we are lucky)…but I wouldn’t trade it for the world. We have been to 6 doctors appointments, and a developmental assessment with the CDSA. God is already proven to us time and time again that he is in control over Malachi’s life; but we also are in desperate need of prayers as well-especially in concerns with his motor control, muscle tone, and vision. Although the first doctors appointment was overwhelming, we managed to overcome; and also learned a few valuable lessons.

Bring more than two diapers in case of explosive poop.
Bring an extra set of clothes to ALL appointments (reference to explosive poop).
Projectile vomiting may occur if fed after being very upset and having blood drawn.
Bring tissues to all appointments for those tears that seem to pop up unexpectedly when discussing all we have been through.
Bring some type of music playing device to all appointments (Malachi loves music, and it calms him when he is upset.

…I am sure I could think of more lessons, but these seem to stand out in my mind. Another fear I have had during all these doctor appointments is GERMS. Being born at 23 weeks, staying on the ventilator 6 weeks, and developing BPD causes Malachi to have a fragile immune and respiratory system…and even a little cold could lead to a hospital stay, or PICU stay in my little man. We took all necessary precautions as given to us by the Vidant Neonatologist. Even so…I cringed at every cough and sniffle lurking nearby. The hardest part of every appointment these past few weeks has been systematically reviewing with the doctors and nurses the novel of medical complications my sweet boy had and still has. I always get that “oh so familiar” sinking in my stomach when we discuss Malachi’s future. I have to repeat in my mind during each of these discussions “It’s all in Gods hands”…”Just trust God.” Doctors like to remind me over and over again about the high possibility for developmental and cognitive delays; but with each verbalization of this I am just reminded of Isaiah 55:9 “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Going to so many appointments has been very exhausting, but I try to look at it as quality time with my sweet son. Even so, I know he gets tired of all the handling, traveling, and inconsistency in his daily routine. I don’t ache because of the business of appointments, or because I didn’t have the “perfect pregnancy”..But I do ache because I don’t want my baby to have to go through this. I just want to take away all the pain he will and does face in life. It is excruciating to have to help hold down my child each time a painful procedure is being performed on him…whether It is his eye exam where his eyes are pryed open and examined with the most barbarik looking contraction, or blood is repetitively drawn from his little arm. Every mother wants the best for their child. I want his life to be full of joy just like any mommy wishes for their little one.

I cannot help but focus on every milestone, and developmental aspect of Malachi. Sometimes I look at him and wonder “what is going on in that little mind of yours?” Many of Malachi’s joints are stiff, and his movement is not very coordinated at this time; and it is so hard to understand if it is a “delay” or not. I analyze everything he does, and any bits of his personality or cognitive strength that I see I praise! On June 4th Malachi smiled at my mom and I for the first time; it was what I would call a “fleeting smile”….but a blessing nonetheless. It was a big gummy smile; the kind that takes your breath away. Each milestone, each miracle is a blessing. I had a dream the other day that Malachi was walking, and I know it was God’s way of telling me “I’ve got this.” Whenever I go places and I see children running around and playing, the first thing that always pops in my mind is…”I want that for my Malachi.” I want him to be able to live a life of JOY and independence.

The developmental assessment showed that Malachi has increased muscle tone (hypertonia), especially in his legs and neck; but we are starting in-home physical therapy that will assist with his range of motion, and help him meet those milestones. Now with preemies it can be confusing; although Malachi is 5 months old, 4 of those months he was supposed to be in my womb. Therefore, when we are reaching milestones, we have to use his adjusted age, which is 6 weeks (as of Tuesday). Social smiles, increased head control, starting to reach for toys, rolling over, and having better visual focus are the things we are focusing on these next few weeks. His increased muscle tone; or hypertonia, is a possible sign of cerebral palsy (spastic), which of course is our biggest fear. Even so, Cerebral Palsy can range from very mild, and almost unrecognizable, to very severe (inability to walk or live independently). Sometimes when I lay down at night I have a hard time sleeping as I think of all the unknowns of Malachi’s future. BUT, this is when I have to seek the peace that only comes from our heavenly father. Thankfully, God is never caught off guard by the circumstances of our life. God’s plan for my life, for Malachi’s life, and for your life is ever unfolding, and nothing and nobody can hinder it–not Satan, not your sickness, not your fears. Romans 28:8 says “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” It does not say that all things that happen to us are good. Evil is ever prevalent in this fallen world, but God is able to turn every circumstance around for our long-ranged good; and to fulfill his purpose. God never makes mistakes; and he has a divine purpose for Malachi.

As you pray this week, please remember my Malachi. Pray for his developing brain (which includes his cognition, control over his muscle movement & tone, and his visual coordination). Pray for his severe reflux and breathing/lungs; and that Malachi will meet his developmental milestones. Lord, we know that you hold Malachi in the very palm of your hand. Indeed, Malachi is engraved in your hand as well as the scars from the nails that once held you on the cross out of love for him. “I have engraved you on the palms of my hands; your walls are ever before me” Isaiah 49:16.

I am a better person because of YOU Malachi. You are one of a kind & PERFECT to me.

Raising Malachi

Prematurity, Inspirational, micropreemie, 23 weeker, Loss of Twin, Faith

Tag: HYPERTONIA

It’s the small things…

8 month old Malachi: A Micropreemie’s Story.

Showing Malachi that life can be JOYFUL

Our Beautifully Messy Life-First 3 weeks home from the NICU

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