Love will carry you-from a NICU mama.

October 23, 2016 MalachisMomLeave a comment

I could barely focus. My mind trying to slow down. To comprehend it all. I didn’t know that babies could be born this early and survive.

I didn’t want to know the statistics. I didn’t look up stories of hope or google any diagnosis-not right away. It was too much. All I could process was one thing at a time in that moment.

They were alive.

I didn’t know what the days ahead would look like, so I focused on the minutes instead. New problems arose every couple of seconds. And so I prayed. Each new complication was a a burden I gladly carried, if it meant they were still breathing.

Every organ was premature. Being artificially maneuvered to provide bodily function. A ventilator and airway to breath. A feeding tube to eat and give the intestines enough stimuli to function. A intravenous line for fluids and medications. A arterial line for monitoring of vital signs and adequate perfusion of their delicate organs.

Every life saving measure was not without risks. Too much oxygen and you risk damaging the blood vessels in the eyes causing blindness. Too little oxygen, you risk brain damage and failure to vital organs.

It was a balancing game.

I often heard the doctors say that Neonatal medicine was much more of an art than a science.

It is also often described as a roller coaster. Everything can be going smooth, and then one infection or a single new disease-such as necrotizing entercolitis-could be fatal.

You live every day “on edge.”

And then, at some point you are faced with the very real possibility that your child may have developmental delays, Autism, ADHD, cerebral palsy, etc… None of which could possibly devalue the love you have for your child, but frightening nonetheless.

But in those moments. None of that matters. And honestly, when your child has gone through so many near death experiences, or when you lose your baby in the NICU, your perspectives shift.

You are never the same.

You are more tender.

You see your child go through so much.

Cranial ultrasounds. Chest x-rays. Blood draws. Surgeries. Suctioning. Pain.

The NICU is extremely busy and incredibly scary.

Life as you know it is on stand still.

Friends may think you are distant. People don’t understand the intensity and validity of your pain. But I understand.

I remember vividly walking down the hallway back from the cafeteria towards the NICU. I couldn’t eat. I was wearing a black maternity shirt that hugged my postpartum stomach, yet all I could see was an empty womb that screamed betrayal. My body had failed my boys, at least that how it seemed. I had pink striped pj pants on because it was all I had at the time to wear. I looked disheveled, and I didn’t care. I walked slowly. Counting my steps. Face to the ground. My body was numb in disbelief.

I washed my hands up to my elbows in the sinks by the NICU doors. And as it always did, my heart dropped as those doors opened.

I would walk those NICU halls over a hundred times. Those sterile smells. The alarms that I could hear in my sleep. I didn’t feel much like a mother.

Not until the NICU nurse told me I could touch my baby.

The nurse slowly pulled back the snuggy that tightly held my Michael. And before my eyes was the most beautiful little boy. Hair so blonde. His arm the size of my pinky. His eyes still fused. My heart felI to my stomach. I couldn’t fathom losing something so precious. Lord save him I cried.

He was so fragile. Fighting with everything to live. I wanted so desperately to take his place.

A similar scenario played out as I saw Malachi. He looked similar to Michael, but also different. He had more petite facial features and was a little more bruised. Yet he was breathtakingly beautiful and stole my entire heart in seconds.

I would spend every day with them. Every moment that I could be by there side I was there. I tried so desperately to feel like a mother. Praying for them. Singing to them. Holding their tiny hands. I pumped breastmilk for them like it was my job. It was the one thing I could do that I knew was directly helping hem live and thrive. I read stories to them. I talked to them about my fears and told them how dearly I loved them no matter who they became. I changed their diapers, and helped the nurses reposition them. These seemingly “little” things meant the world to me.

NICU Nurses became family, and soon days became weeks. Weeks became months. February brought snow, and then spring was here.

By this time two became one.

Grief and numbness fell on me with intensity. Instead of fingers to hold I had a small blanket that once held my lifeless baby boy in it to cling to. It smelled of adhesive remover- the chemical used to gently remove the tape from his face after his heart stopped beating. But that blanket was the only tangible thing I had left to hold onto to. So I squeezed it tight, wishing that for a moment I could just breathe him in again.

And with the passing of Michael, a small piece of me also died.

But here I was. Gathering strength from wherever I could find it to fight for my remaining surviving boy.

It is amazing the bond that NICU mothers have. While my primary source of sanity and strength arises from my Lord and Savior-an absolute strength beyond myself. There was a great amount of love and compassion that came from relationships with other NICU moms. Especially Micropreemie mothers.

They understand.

Each of our sons and daughters battle different fights.

For some reason some did not make it. But the journeys they gave us by allowing us to carry them in our wombs and give birth to them have forever changed who we are. Their fights to live inspire us, and while we cannot physically hold and love them, they live and breath through us. Surely we are so much better because of them.

And our little warriors who do come home. Their stories amaze us. They are not known by there limitations, but for their bravery and all the countless obstacles they overcame.

Malachi is certainly the greatest gift I’ve ever received. Ever fiber of my being is drenched in love for him.

The love we have for our tiny warriors will certainly overcome all fear we may have.

If you currently have a baby in the NICU, I am so sorry. You are carrying a burden that is so tightly woven.

I know that a piece of you is having to grieve the hopes and dreams that you had for your pregnancy, and for the life of your child.

But mama believe me when I say, you are so strong. So brave.

You will make it to the other side of the storm. You may feel like you are in a fog, but soon the clouds will break, and the love that your baby brings to you will carry you.

So much love to you.

From one miracle mama to another.

Adventures of a One Year Old Micropreemie.

April 30, 2016April 30, 2016 MalachisMom7 Comments

As I sit here in the living room in a sea of toys surrounding me I sigh, life is good. No, it is not always easy or glamorous, but it is meaningful.

Malachi is taking a nap, and that means I get a few minutes to take a breath. Yes, the dishes need to be washed. Yes, there is loads of laundry to do. But that all can wait. Right now I want to just watch you sleep, and take you all in. Every piece of you.

Just this morning, as Malachi and I were playing, I had soft music playing in the background. It was a song from the praise baby CD that we use to play every night and most days while we were in the NICU and special care nursery. It immediately took me back to that tiny room. So many emotions flooded my heart.

I would play these songs, and sing them over my sweet Malachi. At night I would play them to drown out the beeping, and commonplace noises that rang throughout those hospital walls.

Your room was always adorned with bible verses, and prayers were written on the walls. Even when I couldn’t touch you, I could sing to you. And so I did.

I sang those words…

“You created my form, and knew me long before I was born. I was made to praise you, I was made to love…made in your image, and wrapped in your love.”
“Make me an instrument of your peace. I want to know what it’s like to follow you. When men look at me, I want them to see the light of the world inside.”

Day and night, you were covered in sweet songs of worship and prayer. And even today, I sing, and I pray these words over your life. You were made to praise. You were made for love. You were made for greatness Malachi. May you be used as an instrument of the king. May you always follow HIM. May men see the light of the world in and through you…

What a different place we are in now that you are home.

The NICU had such a way of slowing down life. Plans didn’t matter. Nothing really mattered, except that your heart kept beating.

April of last year you were so close to coming home.

You were finally off of your oxygen. Ironically, you were drinking from your bottles like a champ, and gaining weight. You still had scary moments where you would drop your heart rate, turn blue, and cause your nurses to run frantically to your room. Yeah…you were really good at getting all the attention. And yet, there were still a lot of unanswered questions.

In fact, it was in April that a particular doctor came in our room and started a conversation I will not soon forget. In her attempt to prepare me for what to expect once we got home, she looked me in the eyes and said the following words…

“Your son will have cerebral palsy.” Period. Not he “might” or there is a “great chance.” No, he WOULD have cerebral palsy (which she didn’t clarify that cerebral palsy could be very mild, to severe and debilitating). “He will be delayed.” “We don’t know what the future will look like for him, or what his quality of life will be.” “You need to understand this.” She was blunt. She wanted me to wrap my mind around it…as if I had not already played these possibilities in my mind a thousand times prior.

And so without responding, I stared at her. I honestly didn’t know what to say. This was the first time she had ever taken care of Malachi. She didn’t know him, not like the doctors that had been there from the beginning. She was just stepping in, going off of what the brain scans showed. Her honest medical opinion.

I was still going to love him. Nothing she could say would make me not love him. But to speak as if his life would not be one of quality; I didn’t understand that.

Love is not determined by ability. Love is an innate quality that a mother has for her child. Was I scared of the future? Absolutely. But also, in the very core of my soul, I knew that God allowed Malachi to survive for a reason. That even if he never talked, or walked, or did any of the things she claimed he would never do. That he would still be valuable. Loved. Cherished beyond all belief. That he would be just as loved and his life would be just as meaningful as the star athlete, or the child that is at the top of his class.

When she left the room I began to cry. I didn’t want her to see it, but her words ripped at my heart. I immediately began to pray out loud in that tiny room. My mother was in the room, agreeing with my every word. “Lord, touch Malachi. We claim healing over Malachi. Malachi’s life will be one of purpose. We praise you Father. You created Malachi, you formed his body. You created his inmost being, and you have dominion over his life. Lord we speak life and purpose and greatness over Malachi. We pray that he will never know a single day apart from you. We praise you father for bringing us this far. We praise you Lord for where you are taking us.”

Over and over, I claimed deliverance over Malachi. And yet, time and time again Jesus answered back with discipline.

It was through this discipline that full reliance in Christ and trust began to be birthed in me. And I needed to trust God more than ever in these moments. I had to be still and know that Malachi was in the very palm of His hands, even when I couldn’t feel him. Even when God felt distant.

That although multiple surgeries, medications, and therapies were not something that I wanted to be a part of my sons life, they would be. And I am accepting these things. Even when goals, EIP (early intervention program) evaluations, and numerous doctor appointments make me feel like I am drowning, I know these are all just small hurdles in the grand scheme of things. That all these things that seem like set backs, are indeed actually just propeling us towards growth, healing, and greatness.

Malachi will not be defined by any diagnosis that is placed on him. Not by an intraventricular hemmorahge, or Periventricular Leukomalacia. Not by delayed speech, oral motor weakness, extreme prematurity, or hypertonia. These things are all a part of our journey, but do not dictate or determine where we are going.

As my husband always says…”it is what it is.” But we won’t let worry steal us of our joy. Although at times our minds can be filled with questions and doubts. Although from time to time we may plea with God, “Lord, I don’t understand,” we won’t let our fears suck out or have province over the happiness in our lives. While they might be there, they will be less intrusive.

We won’t let the “what could be” hinder us from reaching beyond our present limitations. We have always believed in Malachi and his abilities, and we will never stop rooting for him.

And while joy and pain will often bleed together, we will cling to Romans 15:13…

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

Lord, let us overflow with hope for the future.
So what does life look like for this sweet rambunctious one year old? It is certainly an adventure I tell you!

No two days are the same.

And while mornings are often filled with snuggles, grins, and giggles, and nights offer the consistency of bath time, play time with daddy, and prayer, all of the little moments in between, no matter how challenging or unpredictable, are beautiful nonetheless.

I often get a lot of questions regarding Malachi’s eating. And to be honest, these are the questions that are the most challenging to answer. There is no one reason that Malachi has difficulty eating. It is a combination of habits and conditions that make eating one of those very necessary and often times frustrating hurdles we have to work through.

I can’t tell you how desperately I want to be the “normal” mom that can just whip out a bottle to feed my baby. Or to be able to give him bits and pieces of my food without worrying that he will gag and eventually vomit. But this is not my reality. However, I will say we have made HUGE strides in eating in the past few months.

A couple months ago Malachi was getting 100% of his calories from his gastric tube (mini button). He was vomiting multiple times a day. He was only taking a few bites of food (which he despised doing). Eating was miserable for him.

In combination with the UNC outpatient feeding therapy, and starting Occupational Therapy, we have seen a SIGNIFICANT increase in the amount of food Malachi is eating. He is experimenting with new textures, and table food, and he is vomiting much less frequently. He actually enjoys eating, which is a place that I thought we would never get to. He still cannot tolerate certain textures, and he has just started understanding the concept of chewing food, but we are seeing progress, which is exciting!

Malachi has also started drinking from both a sippy cup and a cup with a straw. The problem is, he doesn’t drink nearly enough for us to try to wean him from the gtube just yet. Due to low oral tone, Malachi does have a little bit of spillage when he tries to drink, yet another challenge. But, the more Malachi practices eating and drinking, the stronger his oral motor skills become.

Feeding issues are frustrating beyond belief, and many people do not understand the complexity of feeding issues among micropreemies. How can something so pleasurable, be so unenjoyable for a young child?

A large amount of oral aversion among micropreemies stems from having negative oral experiences. From the time they are born they have tubes in their mouth to help them ventilate their lungs, and feeding tubes inserted into their noses and mouths for nutrition, which cause great discomfort.

Many micropreemies suffer from severe reflux due to their anatomy, and often low core tone. For Malachi, we couldn’t get him to eat (or drink) until he was comfortable…aka, not vomiting and retching 10 times a day.

We also discovered that Malachi has slow gastric emptying. Therefore, he was never given the opportunity to “feel” hungry. Malachi is now on a regimen that includes being fed overnight through his gtube, and then only two times during the day (during naps), giving him the opportunity to have an empty belly, and thus “feel” hungry during the daytime.

He has also been started on a medication given 3x’s daily to increase his gut mobility, and he is also on a medication for reflux. We eat 3 meals by mouth a day and snacks. These meals include some table food, a pouch of baby food (3-4 oz), and then as many sips of liquid that he will take. Malachi is also receiving donated breast milk, which is MUCH gentler on his tummy than formula (and it is also great for his growing brain).

These are the supplies that we use for our morning medicine routine.

This particular morning Malachi ate a whole 4 oz’s of yogurt, a mum cracker with peanut butter, a few bites of baby food, and a few sips of milk. I was very proud!

Sometimes Malachi likes to “help” give his morning medications. Silly boy.

Overall, if we can get Malachi drinking larger volumes, we could try to get him completely weaned from the g-tube. But this is a marathon, not a sprint, and we delight in any and all progress that he is making. He will get there, I truly believe he will.

Until then, we are so grateful that Malachi has a route to get all of the calories and fluids that he needs to grow and develop. To us, it has just become a normal part of our lives. Eat your breakfast, get your meds, flush the tube, and go play. 🙂 Sometimes “different” can seem intimidating and scary, but for children who depend on such equipment-it truly is a blessing.

In terms of therapies, Malachi receives Occupational therapy twice a week for an hour in our home.

I remember how frustrated I was in January when we had his first OT evaluation. Malachi had just turned 9 months adjusted, and he scored as if he was a 6 month old in terms of fine motor skills. As a parent, this was a tough pill to swallow. Discipline. This was just another page to our story, and something Malachi was going to have to overcome. And like the hard working child Malachi is, he has made absolute leaps and bounds since starting OT.

Our goals when starting OT were that Malachi would be able to drink from a straw, put a toy (like a ball, block, etc) “into” a container, bang two cubes or blocks together/and or clap (bilateral integration), and begin to use a pincer grasp (finger and thumb) to self-feed. We have officially met ALL of our January goals since starting OT, and have new goals that we are working on. But let me tell you, it has been quite the journey.

I remember crying in my room while holding Malachi one evening. It was early March, Malachi was 10 months adjusted age, and he wasn’t imitating. He wasn’t meeting his OT goals, and I was at loss. I worked with him every single day, and I wasn’t seeing progress.

And yet, little by little, Malachi began to blossom. Within a month Malachi went from sporadically waving, to consistently waving bye-bye, from not having the hand eye coordination to bang blocks, to consistently banging toys together, and putting toys into containers, and even feeding himself puffs and other small table foods with his fingers. It was during these very lonely times, when I felt defeated, that I reached out to friends that had similar circumstances. I just needed to hear the words “I understand” or “I have been there.” Let’s face it, special needs parenting is difficult at times, but therapy, early intervention, and covering our children in prayer truly does make all the difference.

I’ve gotten to the point that when I hear the word “delay” it triggers something in me to work harder, to fight a greater fight. I try not to let it discourage me, because I see the leaps and bounds Malachi has made. “Baby steps, Allison”-I tell myself. Micropreemie baby steps is what it takes.

Just the other day, Malachi started clapping out of the blue. It may not seem like much to you, but I remember a time when I never thought Malachi would imitate, or clap. He has come so far, and it is just amazing to watch his determination. And yes, we let him get very messy when he eats!

Malachi also has started pointing at everything. From pictures in books, to the wind chime outside, he wants you to share in his delight of discovering this great big world.

Currently in OT, we are working on putting objects into smaller holes (shape sorters, pegs into peg holes), stacking blocks and rings, continued improvement in drinking and tolerating textures, and putting large piece puzzles together. Always something to be working on. Always…

And while some of these skills seem tedious, they are each very important in building skills for everyday living and those skills needed for going to school. Each skill builds upon itself, and eventually will be needed to more difficult things like coloring, writing letters, and using scissors, etc.

In terms of Gross motor skills, Malachi is starting to stand alone a times, and take a FEW steps.

Here he is being very brave…

He will walk while holding your hands, but he is SUCH a fast crawler, he isn’t all that interested in walking. Due to some of the high tone in his legs, our PT always says that he is going to be quite the runner one day. We are also practicing getting from a squatting to standing position on his own.

We are so blessed to have such amazing therapists. We have been with Jean for so long now, she honestly feels like family. She has always believed in Malachi and his capabilities, and has pushed Malachi beyond his limitations. It is therapists like Jean that make all the difference in a child’s self-confidence.

Along with our in home and outpatient therapies, we still have regular follow up appointments with our Neurosurgeon, the NICU follow up clinic, Gastroenterologist, Audiologist, Pediatric Surgeon (G-tube), Pulmonologist, and we recently added a ENT (because of Malachi’s frequent ear infections).

We won’t be evaluated for speech therapy until Malachi is closer to two years of age. Although the only words Malachi says are “dada” and sometimes he sounds like he says “hey,” he babbles, giggles, and lets his needs be known.

I will say that Malachi is doing very well in developing his receptive language (words he understands). In fact, his receptive language is probably right on target for his corrected age. He understands who his mama is, and he will “give love,” “wave bye,” and lay his head on your lips for “kisses.” He knows several simple commands like “Malachi go get your ball (or truck, car, etc)” or “Malachi let’s eat.” Many micropreemies, and especially boys are delayed in expressive language, and our neonatologist tells us not to worry just yet. I can’t say that I always take her “do not worry yet” advise, but I do pray over Malachi’s communication skills daily.

Malachi also has a harder time with speaking due to his low oral tone. At times it seems like he wants to say “mama” but he can’t quite get his mouth muscles to cooperate. Sometimes it seems to frustrate him, but my prayer is that with time these skills will come. And until then, we will work through them.

With the weather warming up, Malachi enjoys being outside. In fact, he just lights up when a tractor, or school bus drives by, and he loves to explore all the new sounds and textures around him.

He also has a love for reading books with mommy, listening to nursery rhyme songs, and playing with anything that has wheels. He is so inquisitive. Our physical therapist always says he is going to be an engineer one day, because he is so intrigued with the little details of toys. For example, he will flip over a large toy with wheels to look at its parts, or to figure out how it spins. It is pretty comical at times how hard he seems to concentrate when he is playing. He will hold his mouth open, and look so serious when he is truly inspecting a toy.

Like most one year old boys, he is very busy and into everything. He loves to completely empty his diaper bag out, or any drawer with clothing, or the kitchen cabinet…anything really…

So busy.

Baths are his absolute favorite of all time…

And even though he loves his mommy, he is also pretty crazy about his “dada.”

And while life seems to be flying by a mile a minute, I try to take a few moments every day to just thank God for the opportunity I have been given to raise Malachi.

What a privilege I have as his mother to be on this journey with him. To cheer him on, and watch him overcome obstacle after obstacle.

I share so much of our journey with you all, because I know so many of you that feel invested in Malachi’s life. Maybe you gave to our family while we were in financial strain in the NICU, visited, or made us a meal. Maybe because you have followed our journey from day one, and feel like Malachi is a part of your family as well. Maybe you are a special needs parent who just needs to know that you are not alone. That there are other parents out there that feel just as clueless and hopeless as you do at times. I get it.

Whatever the reason you continue to follow, I appreciate you. I appreciate being heard. I appreciate your continual prayers over Malachi’s life. Over his future.

I will continue to sing praises over Malachi…for he was indeed “made in HIS image” and “wrapped in HIS love.” Let us not go a single day without covering our children in prayer.

Some days our present circumstances may seem confusing, and the road may be difficult to navigate, but we celebrate this life that we have been given with our son. This beautiful, messy life.

A letter to my son on his first birthday.

December 29, 2015December 29, 2015 MalachisMom3 Comments

Dear precious Malachi,

My world stood still the first time I laid eyes on you. In fact, if I close my eyes I can still see your fragile body just as vividly as I could a year ago.

This image always stands out in my mind when I feel worried about what the future holds for you. I think about how far you have come…the mountains you have overcome, and the progression we have seen.

God has certainly had his hand on you from the start.

It always amazes me to think that the God of the universe heard our pleas and cries, and choose your life to spare.

A year ago I couldn’t touch you, or talk too loudly in your presence. Instead, we filled your room with whispers of lullabies, and quiet streams of tears as we pleaded with God to save your life. With every odd and statistic telling us that each second may be your last, we stayed by your side. We believed in you, even when a reality of a life with you seemed unrealistic and unattainable.

With each new diagnosis, including an intraventricular hemorrhage and resulting hydrocephalus, our hopes of a future with you seemed more bleak. And yet, after 6 weeks on a ventilator, 137 days in the hospital, 2 brain surgeries, 1 abdominal surgery, and what seems like a thousand barbaric eye exams, needle sticks, and doctor appointments later…here you are!

It is with so much gratitude and grace that we celebrate your first birthday.

Time has been so surreal this year, with those early days in the NICU seeming to drag on so painstaking slow, as we rejoiced in every second that you remained here on this Earth with us. And yet, I feel like this year has come and gone so quickly…with the highest of highs, and lowest of lows.

Throughout this year you have shown us your strength and perseverance to live. Even through all the pain you have been through, you remain so full of life and delight. You are our number one hero, and the child that we prayed for with such vigilance.

You have impacted this world so greatly in just this short first year. You have had so many people praying for you, people that you have never met. Complete strangers and people from all across the world lifted your name up in prayer.

You have restored people’s faith, and made us believe that miracles really are possible. That all things are possible in Christ.

Because of your birth, your mommy and daddy have been forever changed. We see the light of God shining down on you with each passing day-and we feel so privileged to call you “ours.”

And to think-this is just the beginning.

We enjoy every moment of watching you grow. Even with all the fears and worries, we know that you will grow to be the exact person that God has intended you to be.

We are so proud of you.

We know that your brother is looking down on you and smiling. He is living and breathing in and through you. I can sense his presence when I hold you close.

You are the little boy that wasn’t supposed to survive. The boy whom was deemed to live a life that was “less than quality.”

But God had a greater plan.

You are my smiling, cuddly, lovey boy. The boy that loves peek-a-boo, and laughs with such jubilance. The most determined boy, who pulls up on everything. Who is fearless-and crawls around, despite having high muscle tone in his legs and arms.

You amaze me Malachi.

I love you so much. I REJOICE in you today and every day.

Xo,

Mommy

My precious Michael,

I watched balloons rise high to the sky today, to wish you the happiest of birthdays in heaven.

I held back sobs of tears as a heaviness fell on me. I thought, “he should be here.”

But even in the midst of all the emotions that I am feeling today, as I relive your birth, I can’t help but smile as I think of the first time I saw you.

11:08 p.m. 1 lb 6 oz of pure sweetness.

Your delivery was not easy. It was full of tears, and crushing pain; but being able to give birth to you was worth everything.

I feel so privileged that God handpicked me to be your mother. To carry you in my womb, and give birth to you and your brother. Even though your life here on Earth was painstakingly too short, it was also meaningful.

I don’t understand why it all happened the way it did, and why we have to remain so far away…but I will always love you with an intensity beyond belief.

Forever I will grieve you, but especially on this day…December 28th.

Sometimes I wonder if God allowed you to live and then die so that I could be used as his vessel. So that such depths of pain and brokenness could then be turned into usefulness for the kingdom of God. It doesn’t take away the pain and void that I feel as your mother, but knowing there is purpose in your existence helps to shed light to my aching soul.

I am forever changed because of your life. I love harder, and feel deeper. Heaven feels closer, and this finite life seems so brief. For I know that this is not my home. No…Home is with you. You are where we all long to be.

I want you to know that I am so proud of how hard you fought in the NICU. You were a little rock star, who had all the doctors blown away by your will to live. And like a thief in the night, infection and sepsis snuck in to steal my little bundle of joy…My life…my baby boy.

YOU Michael are just as precious to me now as the day you were born. It is with such tenderness and affection that I dwell on your life today and always.

Thank you for making me a better person. Thank you for living long enough for me to love on you, to hold you, and tell you how wonderful you are. I truly believe that God allowed you to live those 3 weeks for your daddy and I. We needed to know you. We needed to hold you, and love you, and feel a part of your life.

I’ll never forget the warmth of you on my skin, and how your touch melted all my fear away. I never stopped believing in you. Even in your last seconds of life, I hope it was evident to you the depths of my love. A mother’s love is the strongest love there is.

You are not just a statistic. You are my son. My baby. And I will never get over the loss of you. But it is with such great honor that I call you MINE.

My wish for you today on your first heavenly birthday, is that your life and legacy will be remembered. That your memory will leave a lasting mark on all who knew you and took care of you.

I love you Michael. Forever my baby you’ll be.

Xo,

Mommy

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.

Broken Seashells–A micropreemies first time to the beach.

July 19, 2015July 19, 2015 MalachisMom6 Comments

“There is a time for everything, a season for every activity under heaven. A time to cry and a time to laugh. A time to grieve and a time to dance.” Ecclesiastes 3:1,4

I can hear daddy singing to you from down the hall, I hear your voice softly cooing, and my heart melts. I wake up and look to see you smiling in your bassinet beside me. Your smile lights up my entire world –it can make my mood or feelings instantly change for the better. There are so many days when I wake up feeling inadequate. I ask myself “am I doing enough?” …then I see your gummy smile, and it is like you are saying “Mommy—you are more than enough.” I love you Malachi. Being your mother is the greatest blessing I have ever been given. Many people see you, and at first glance you seem like any other child. You are adorable—with those big blue eye that make people delight over you. You smile with those dimples, and your entire face lights up. You are such a happy boy. They don’t see the struggles you have endured. They don’t see your strength and determination. But I see it Malachi. It is because of you that I see life in a whole new way—and I thank you for that. Daddy just said the other day…”sometimes I cry thinking about all that Malachi has had to go through.” And I agree—you are the strongest little boy I know. The physical therapist this week couldn’t get over how determined you are. Playing is hard for you. Laying on your stomach often makes you vomit, and sitting up sometimes makes you pant in your breathing, and feel short of breath. But it doesn’t stop you. The odds have always been against you. But somehow you always find a way to overcome. When the odds are one in a million—you always strive to be that one. You are my hero Malachi.

The gentle ocean breeze, the salty air…the sound of the waves crashing to the shore. There is nothing quite like this view. It might just be my favorite.

Who am I kidding? THIS is my favorite view!

If you had told me I was going to be on a beach with Malachi, smiling & enjoying life a few months ago, I wouldn’t have believed you. For a long time I often wondered if life was ever going to be joyful again. I didn’t know if I had the strength to emerge from my pain. This week I laughed…I laughed to the point that I felt like my heart was lifted to the sky. I smiled. I cried. I even had moments of doubt and fear. But through it all, I am thankful for this life I have been given with Malachi.

Malachi has to be very cautious when going out into public due to his early birth. His lungs are not as developed, and they sustained damage from being on the ventilator for the first 6 weeks of his life. Until we can at least get through this first winter, we do not go grocery shopping, to church, or out in public for that matter, because we are protecting Malachi from germs. It takes time for the lungs to regenerate, and the doctors want us to be extremely cautious for the first two years of Malachi’s life. Even a “minor” cold could lead to a hospital stay, and flu or RSV could prove deadly. This is why I had such a hard time deciding if I was going to go to the beach with Malachi or not. But, I just couldn’t stand the idea of Malachi missing out on such an amazing opportunity—to hear the ocean, to feel the sand between his toes…

So what did we do? We brought the disinfecting wipes and headed to the beach! We were VERY cautious mind you. Malachi spent a lot of his time at the resort, but he also got the opportunity to get in the ocean for the very first time. It was amazing to see his face when the waves slipped over his little toes. He enjoyed sitting in the water, and he even took a long nap under the umbrella. This was the FIRST week we have had since being discharged from the hospital that we did not have a single appointment! Our physical therapist was on vacation, and somehow we managed to schedule all other appointments either before or after this particular week. We were able to focus on our family—and the love we have. We had time to play, time to think & clear our minds. We were even able to go out to eat at a restaurant as a family for the first time. We called ahead and reserved a private room at the Sea Captains that was away from all other guests—and as a family we were able to enjoy each other’s presence. Here are a few pictures from our beach trip…I hope you enjoy!

Malachi enjoyed napping with mommy. He is such a snuggle bunny.

Tummy time pool side. YES, we do therapy even on vacation. :) — Tummy time pool side. YES, we do therapy even on vacation. 🙂

The pool wasn't my favorite. But I am still precious. — The pool wasn’t my favorite. But I am still precious.

First night out for dinner at the Sea Captains.

I wish I could give you an update on Malachi’s weight, but he hasn’t been weighed since his check up on June 30^th. If I had to guess, I would say he is almost 14lbs, but that is just an estimate. The doctors do not seem concerned with his weight gain. Miracles that have been evident in Malachi’s life over the past few weeks include that the opening in his heart (Patent Ductus Arteriosis) has closed, and will NOT need surgical intervention. Praise God! Also, he had a good eye exam that proved that he can track with his eyes, and he no longer has ROP (Retinopathy of Prematurity). The doctor did say that he had cortical brain damage from his brain bleed that could very well effect his vision & ability to focus; but he can definitely see to some degree. In physical therapy we are still working on his ability to roll, grasping toys, finding his feet, and stretching his lower leg muscles—which are a little tight (hypertonia). Just this past week (at the beach actually) Malachi started taking toys and putting them in his mouth. I have noticed that he can focus longer and track toys better than ever before. Furthermore, he smiles much more frequently. In fact, if his tummy is not hurting, or he is not hungry or sleeping—he is most likely smiling. Malachi also started sleeping through the night (for the most part), which is such a blessing. When he is awake, mommy has him busy practicing rolling, and learning to grab toys. We have to take things slow, so that he can tolerate the activity without vomiting & panting in his breathing; but, we find creative ways to play. I have learned that I can’t worry about the future. All I have is the now; and right now I have to be strong for Malachi. He needs me. We need each other.

On our last day at the beach, we stopped by the ocean one last time to talk to Michael. We wrote his name in his sand, prayed, and just took some time to remember him.

We always see Michael in the sun. He was shinning bright that morning.

… as I walked towards the ocean that morning, all I could see were broken seashells surrounding me. Where are all the beautiful seashells, the ones that aren’t shattered into pieces? …I thought. But, then I realized the beauty that existed in the broken seashells around me. I saw my own brokenness, and pain. For me, those broken shells represented unfulfilled dreams, emptiness, uncertainties…the loss of a child. Aren’t we all in a sense broken seashells that are battered by the waves of life, and the sand of time? We are searching for something to cling to. Searching for hope & truth in the midst of great chaos and disappointment. Psalms 34:18 states “The Lord is close to the brokenhearted; he rescues those who spirits are crushed.” Is your spirit crushed today? I know my spirit has been crushed, and if it wasn’t for the Lords peace and his holy spirit guiding me—I don’t know if I would have made it. Do I still fail daily? Certainly! But isn’t that the wonderful thing about grace? God’s grace is sufficient. In fact, the love of God is so vast & his mercies are new every morning—it is hard for our finite minds to even comprehend it. God sees the beauty within your brokenness, and he wants to provide you a net of safety. He longs to give you peace—to sustain you—to bind & heal your deep set wounds.

Psalms 55:22 Cast your burdens on the LORD, he will sustain you; he will never permit the righteous to be moved.

Psalms 147:3 He heals the brokenhearted and binds up their wounds.

The bottom line is—God’s grace is enough. No matter how I feel, or what the day holds. It is when we can truly let this sink into our hearts and minds that we are able to overcome great sadness & heal.

“I’m planning to spend the rest of my life just happy that God loves me. That he has forgiven me. And that he has made me his own.”

-Judah Smith (Life Is Book)

I have two options—I can live my life as the broken shell that struggles to even get out of bed in the morning; or I can focus on the beauty that Christ sees in my brokenness—and strive to live each day just happy to be a part of HIS team. It is about changing my perspective & focusing on the prize—eternal life with my Lord & Savior. THAT is what life is all about.

When I left the ocean that day I wrote Michael’s name in the sand. I watched as the water washed his name away. Gone from sight, but never gone from my heart. This is for you Michael…

Dear Michael,

Please forgive me for going on with life without you. There is not a day that I do not think of you. I feel so conflicted. How do I let go of you—or at least the grief that I bear, and still hold onto you? I don’t know if I am ready to let that go. Every morning when I rise I think of you. I wonder what you would look like, how you would act. I wonder what your smile would look like…what your cry would sound like. I’m sorry I ever left your bedside. I hope you never felt alone. There is an unexplainable void that losing you left within me. There is a place in my heart that no one but you could ever fill. I miss you Michael. Some days are worse than others. Today is one of those hard days, where the pain stings like salt on an open wound. I just want to stroke your cheek, to feel your warmth on my chest. The vividness of your memory fades a little with every day; and I can’t stand it. I want to remember every part of you. The good and the bad. I will never forget the first time I saw you— you were there one moment, and in the next—you were on your way to the NICU. I had not named you yet, and when I saw your face I knew right away—yes, that is my Michael. I remember the day you opened your eyes for the first time. Those beady blue eyes met mine. I hope for an instant my presence calmed your every fear. I am sorry I spent more time at your brother’s bedside. Even if it wasn’t much more time, I regret not being with you every second. Your brother was so much sicker than you. I didn’t have time to let you go. I still struggle daily trying to let you go. Sometimes when I am holding your brother, I try to imagine that I am holding you…just one more time. Please know that I love you. Daddy loves you. Malachi loves you. Your grandparents & even people you have never met love you. My life is forever changed because of you. Things that once seemed to matter…well, they just don’t matter anymore. I am so blessed to have known you; to have held you in my arms. No—it wasn’t enough, but in that moment—it was everything. I love you my sweet son. I love you Michael Scott Austin. Forever my baby you will be.

Love,

Mommy

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)

Healing Tears–Overcoming the loss of Michael

June 11, 2015June 11, 2015 MalachisMom3 Comments

I walked in the living room a few nights ago to my husband crying, and holding a photo of Michael. I sat beside him, as we wept for our son together. The heaviness of our hearts-like a large dumbbell sitting on our chests. It was hard to breathe. A great America Author, Washington Irving, once stated:

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”

-Washington Irving (1783 – 1859)

I find it most therapeutic to let my tears flow; it is as if I am releasing some of the pressure from the pain that is stored up. Some days it seems as if my storage of tears is an overflowing river; one that cannot be contained. The remarkable thing is, my heavenly father is my tear collector. Indeed -“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” (Psalms 56:8, NIV). Among many things I have learned through the loss of a child, I have learned that it is ok to be sad. Tears can be healing.

I remember so intensely the way I felt the day after Michael passed. I remember waking up, and feeling as if my stomach had been punched in the gut. I felt robbed. I recall holding my abdomen, crying; and saying repeatedly “I just want to hold you one more time” “I just need to feel you one more time” “I don’t understand.” Tears like streams fell, and I never thought I would be able to move forward. The truth is, one more hold, one more touch still would not have been good enough. I closed my eyes and tried to remember what it felt like when I held him for the first time; the softness of his frail skin; the smell and feel of his fuzzy blonde hair. My recollection of him was so vibrant; yet not satisfying enough—skewed by the images in my mind of his cold lifeless body. I prayed—“Lord, let me remember him as he was; let me see him as you see him-whole, healed, and new.”

The stages of grief for me were skewed; how could I adequately grieve the loss of Michael, and still stay strong for my child a few pods down in the NICU, fighting for his delicate life? I do however remember the stage of anger. I feel ashamed, but I remember being angry with God. I remember thinking; “how can I trust someone that let my child die.” I knew God had the power to heal my child; so why didn’t he? I had such immense faith that God was going to completely heal my Michael, and I felt cheated when his life was taken so abruptly from this world. I think about all the things I wanted him to experience in life…simple things, like seeing an ocean sunset, listening to music on Sunday morning with his mommy, playing outside in the yard with his daddy and brother. It did not seem fair that I had to be a part of “twinless” support groups, instead of support group for mothers with twins. Every time I saw a set of twins, or twin strollers, an articles about twins-my stomach fell into knots; knowing that ultimately this was not the life journey I was supposed to have.

Thankfully, even in the center of this tragedy, God has shown me his power, peace, and presence. I will never have all the answers I am looking for, but his holy spirit has given me peace and understanding that has allowed me to emerge from such bitter suffering. I had to let go of what I thought my life should look like, and know that ultimately God has a divine purpose for my life. Although my earthly mind cannot comprehend why I am not supposed to be the mother of healthy twin boys, or why Michael was not supposed to live—I cannot lose faith. I cannot lose hope. Undoubtedly, a life without God is just merely living. What I have learned is, whatever suffering God allows in your life—he has also given you the ability to emerge; with both faith and a future. Paul pleaded with Christ in 2 Corinthians 12 7-9 :

“I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from getting proud. Three different times I begged the Lord to take it away. Each time he said, my gracious favor is all you need. My power works best in your weakness.”

Furthermore, absolutely nothing can separate us from the love that Christ has for us.

“Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity or are persecuted, or are hungry or cold or in danger or threatened with death?” (Romans 8:35).

Although we live in a world full of brokenness; one thing remains the same—the love that Christ has for us is beyond measurable by any earthly means. A sacrificial love—“God demonstrates his own loves for us in this: While we were still sinners Christ died for us” (Romans 5:8).

I am comforted that Michael is seeing things far more beautiful than our earthly sunsets, and he is experiencing the sounds of God’s heavenly orchestra of praise among the angels. He is in the very presence of Christ, and does not have to ever experience the awful heart wrenching pains of this world. He has been spared from the evil that this life has to offer. An amazing author Nancy Guthrie once said, after losing her daughter, Hope, to a fatal genetic disorder….

“I don’t think it is a tragedy that she will have the opportunity to be spared from evil from the pain of this life, and be in the presence of God. This is what I believe. It is not necessarily how I feel. But believing this makes a difference in how I feel.” (Nancy Guthrie, 2005)

It is true, it does not make that ache any less to know that Michael is gone; but knowing that he is in the presence of Christ can change the way I feel.

On Memorial Day this year, Jake, Malachi, & mommy went to Michael’s grave. It was the first time we were all together as a family. It was a very emotional experience, and we spent much time in prayer; and talking with our Michael. Jake and I always refer to Michael as the sun. On sunny days, we always say it is Michael shinning his face on us. It was very warm and sunny that day; and I could almost feel the warmth of his body when I closed my eyes. I imagined his sweet arms embracing me. What a glorious day it will be when we are reunited

Lord, I pray that you would give me a heart that embraces the plans you have chosen for me. We continue to pray for Malachi—and the complete healing of his brain and body. We know that you are working miracles in and through him every day. Thank you Lord for allowing me the absolute privilege to be Malachi & Michaels mommy. It is through you that all precious gifts are given—and my children are certainly the most precious gifts of all.

A post written on April 21st-my original due date

June 8, 2015June 8, 2015 MalachisMomLeave a comment

April 21st-my due date.

Today is the day that we should be rushing to the hospital with both joy and nerves awaiting the arrival of my twin boys. Today I was supposed to hold my sweet healthy boys on my chest and gaze into their eyes. Today was supposed to be the happiest day of my life. And while today is not as expected, and I have been a little more tearful, I choose to be happy and focus on the blessings! Although I remain in a hospital room with walls that seem to be closing in, I am holding my miracle baby boy, gazing into his beautiful eyes.

Today especially I am thinking about the son I lost. Yes, I think of YOU Michael…every second. You are my perfect son that had to leave this earth far too soon. You will always be remembered! My heart aches knowing you are not here to share in my cuddles. How I long to kiss on you and give you all the love I have to share.

(Michael on left; Malachi on right)

Today I also think of you Malachi…how far you have come, and the obstacles you must still overcome. And how the very hand of God is shaping your life. Today makes day 115 in the hospital. Malachi will be four months next week, and he is 40 weeks gestational “corrected age” today (April 21st, 2015).

I don’t regret not keeping a diary/journal or blog right after the boys were born. It was hard enough to leave their side to eat, let alone write down the dark nightmare that somehow became my reality. I have so many stories I want to share, but in those first few weeks all I wanted to do was be by my babies side. I didn’t know if they were going to live or die, and I pleaded with God, in desperation “please don’t take my babies”. I have vivid images that stand in my mind. From the doom that overtook me the moment my water broke at 23 weeks, to the absolute brokenness I felt when the NICU doctor told me the slim chance that my children would even survive birth, let alone the journey ahead of them. They gave me a laundry list of possible complications, as my body was trembling and contracting in pain. My mind couldn’t process it all, it was all happening too fast.

When they advised me that it may be best not to monitor the babies in my womb I denied. I wanted everything to be done to save my children, even if death seemed eminent. I knew God was in control; this was the plan he chose for me…they had to try to save them. I remember the dread that overtook me like a flood after the babies were delivered and I looked over at Jake…tears streaming down his face. I asked, with fear eluding from my inmost being, are they alive??? It took 10-20 minutes for the babies to be revived and intubated, and then they were rushed to the intensive care where several lines and machines were hooked up to them. I remember the first time I saw them, their eyes still fused shut, their skin paper thin…hanging onto life. Helpless is how I felt. I grieved them not being safe inside me. I grieved knowing there was nothing I could do but wait. Wait, and pray, and hope.

” I wait for the Lord, my whole being waits, and in his word I put my hope. (Psalm 130:5 NIV)”

I spent days, weeks, months in a state of mind that that was both fearful and agonizing. To watch my boys lay helpless in isolates, having blood drawn, and tubes in every orifice ached me to the core. All I could do was pray and try to be with them. I just longed for them to know me, know that I was there and that I loved them with everything I had. I didn’t have time to comprehend life. Life was, and still is on hold for me.

Months of fervent prayer and seeking Gods word for clarity and understanding of my circumstance is what has and continues to get me through each day. Stories about other babies born premature that are doing “fine” were great to hear, but not comforting. The truth is, there are good stories and there are horror stories with every preemie birth. The nurses said that 5 years ago they did not even go to 23 week births because they were considered “not viable.” Each week they stay in the womb makes a drastic difference. Even with modern technology 23 weekers have a 20% or less survival rate, and high rates of a life that is not quality. This is the reality I had to face as I watched my children fight day in and out for their lives. I have learned so much through Gods word about human suffering, and while it is easy to muddle in self pity, God chose jake and I, and our families (for they suffer right along with us) to endure this battle, and he is faithful to bring us through.

“Know therefore that the Lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments.” (Deuteronomy 7:9 NIV)

While going through the fire it’s hard to see Gods light and its easy to feel engulfed with negative thoughts; but it is through his mighty hands that Malachi is here and is living today. Yes, we do not know the full picture on how life will be for Malachi, but we choose to believe he is and continues to be healed; we believe he will have a quality life. Each day is still hard, and we long for the day when we can be home, but we know that we do not walk this path alone. It’s hard to see Gods light in the darkest hour. I have to be honest, having my cold grey baby handed into my arms for me to kiss him his final goodbye was beyond excruciating. It was hard to feel Gods presence when my sons head was swelling and the only way to relieve the pressure was for a long needle to be inserted into his tiny head through his “soft spot” and fluid to be drained. It is hard to swallow the pill that my son has a brain bleed that could effect his functioning for the rest of his life. But in moments like this God is still there. Even when you feel like you are alone and have been forsaken, he is there to comfort and bring joy and peace. I look into Malachi’s sweet face, I hold him tight and know it was worth it. I think of that heavenly day when I will be reunited with my precious boy Michael and know…it will be worth it. It’s comforting to know that this life is just a glimpse – a blink of an eye, and that our forever home will be in the very presence of God. Even though I feel tired and weary I serve a everlasting God! One that is faithful to bring me through and accomplish what at times seems impossible.

“Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.He gives strength to the weary and increases the power of the weak.” (Isaiah 40:28-29 NIV)

I want to leave you with bible scripture that really spoke to me this week…

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls. (1 Peter 1:3-9 NIV)

When this post was written Malachi weighed 6 lb. He was drinking 1-2 oz from the bottle (thickened with rice cereal). He was having severe bradycardia, which is why we remained hospitalized.

Journey to Home-a post from May 17th, 2015

June 8, 2015June 8, 2015 MalachisMomLeave a comment

I posted this picture as a reminder of how far my Malachi has come.

Malachi was discharged from the hospital after spending 137 days at Vidant Medical, with the majority of this time being in the Neonatal Intensive Care Unit. If you are unfamiliar with Malachi’s story, here is a quick background..

Malachi and his brother Michael were born on December 28th 2014 at Vidant Medical Center, at only 23 weeks gestation. My precious boy Michael lived 3 weeks, and then passed away after suddenly becoming septic (I will share more about this experience when I feel that I am emotionally ready). Furthermore, Malachi; whom the doctors often referred to as the “sicker twin” beat the odds, and is now at home with us. This journey has been more difficult than I can put into words. It is hard to express the grief and burdens Jake and I have had to bear. Malachi has several medical conditions due to his prematurity. His most prevalent medical condition is an Intraventricular Hemorrhage that he developed shortly after birth. Hemorrhages are graded on a scale of 1-4 with 4 being the most severe. Malachi sustained a bilateral grade 3-4 bleed (meaning some of the radiologist interpreted it as a 3, and some said it was a grade 4. The bleed was not only in the ventricles of his brain, but in the white matter of his brain as well, putting him at high risk for developmental and cognitive delays, as well as cerebral palsy. Due to his IVH, Malachi also developed Hydrocephalus, and had to have two surgical procedures-a reservoir to drain spinal fluid from his ventricles, and a VP shunt when he was older to drain the spinal fluid from his brain to his abdomen. Malachi’s most recent MRI also showed that he has mild PVL, which is essentially a area of dead brain matter around the ventricles of his brain due to the bleed he sustained. This is just another reason why the doctors are worried about Malachi’s brain and functioning. Malachi also has a chronic lung disease called BPD from his prematurity, as well as being on the ventilator for 6 long weeks. Malachi has Retinopathy of Prematurity (affecting the retinas of his eyes) and a open PDA in his heart that will either close on its own or will need surgical intervention later in life. He also has anemia and a very severe form of reflux. He is on medication therapy and has special feeding needs. Malachi had several scares during his NICU stay, many of which left him holding onto life; but he managed, with the grace of God, to pull through. Each day is still a learning experience for Jake and I as we try to take care of our sweet boy, but God has given us patience, strength, and endurance that we did not know existed within us.

The long awaited homecoming…

Malachi came home on May 13th, 2015. After spending 2 days off the monitors, and an overnight stay in the hospital, Jake and I were cleared to take our special boy home. As soon as we got to the hospital that day, I almost felt sick to my stomach. This was definitely not the feeling I expected to have the day I took my baby home; but, so many things were running through my mind. This hospital room was my LIFE for so long, and I was fearful of what life was going to be like outside the safety of monitors, and 24 hour nurses and doctors. I thought “God, I can’t make it without your guidance today.” As the nurse reviewed our discharge instructions my anxiety began to rise. Reviewing his medical needs, follow up appointments with specialists, and medication regimen seemed daunting. It is scary enough taking home a healthy newborn, but taking home a baby that has special needs adds even more nerves. I tried to put my fear aside of me. We dressed Malachi in the most precious white outfit with a bib that said “I prayed for this child.” One of the nurses said “he looks like an angel”…and I could not have agreed more. We took a quick visit to the NICU before saying goodbye, and again-just seeing the NICU brought back a flood of emotions. We saw one of the Nurse Practitioners that used to drain fluid from his brain each day to relieve pressure from the rising levels of spinal fluid. We also saw one of the nurses that took care of him on his second day of life-when we didn’t even know if he would live to see the next day. Each person I saw held a memory, a vivid reminder of how far my Malachi has come. I wanted to pinch myself, as it did not feel real to me that we were actually taking him home. As we walked to the car, my heart was pounding. The nurse, Jill looked at me with tears in her eyes and we stopped and said a prayer. A overwhelming feeling came over me, as I cried out to God in my spirit for strength for the coming days. This is the same nurse that came to me a few days prior in tears as she said

“I remember feeling overwhelmed when my children got ear infections or colds; you have so much more on your plate. But, God equipped you to care for Malachi. He has a plan and a purpose.”

She told me that it is easy to not enjoy the good things in life because you are so focused on the next journey, or the next fearful battle; but she reminded me to enjoy this moment in time with my son. Thank you Jill for reminding me to take each day one by one, and to focus on each blessing the day brings; you have impacted my life greatly.

As we were leaving, I began to to think of Michael, the baby that should be in the car seat beside us. I looked at the sun, and for a second I felt like Michael was smiling down on us as if to say “mommy it is going to be ok.” Malachi slept most of the way home, but once we turned on our road his little eyes peaked open as if he was thinking “this is not my hospital room.” He looked confused as he tried to figure out what exactly was going on. We were welcomed home with a big banner that said “Welcome home Malachi” and an array of ribbons to adorn our front porch. This was when the sheer joy began to sink into my inmost being. A sign of relief…we Are truly home! Malachi had a wonderful day that afternoon, and he seemed to be very intrigued with his new surroundings. We ended the day with several good night time kisses, snuggles, and a prayer of praise and thanks to our heavenly father. He is home, he is finally home!

Although the road ahead still seems frightening, I am comforted by the almighty comforter, who remains faithful in guiding our steps. Malachi still needs a miracle from God. During his developmental assessment the PT said his legs and hips were stiff, and he scored slightly below normal for his corrected age. If you read my son’s medical history on paper it seems overwhelming, but my God is limitless in his resources, and his healing power is being shown in and through Malachi. I serve a mighty God, and thankfully nothing is too difficult for him. One of the doctors told me that I can’t focus on the “what if’s” about Malachi’s future, and that I need to let that burden go. It is true, focusing on the unknown can drive oneself mad. I have to give it to God, although easier said than done. Please join with me in praying for Malachi. Pray specifically for Malachi’s growing and developing brain. Pray for his hydrocephalus, and shunt functioning. Pray that the PDA in his heart will be closed and not need surgery for correction. Pray for his lungs, that he will be able to breath, and not get so easily short of breath. Pray for his eyes, that his vision will be completely restored. Pray for his stomach pains, and reflux, that is so severe that he vomits. Pray for continued strength for mommy and daddy as we venture into the world and go to several doctor appointments. Pray that Malachi will not get sick, for we know even a minor cold could be deadly in our little fighter. Thank you for your love and support through this journey.

As you venture throughout your week, focus on Deuteronomy 30 19-20.

“Today I have given you the choice between life and death, between blessings and curses. I call on heaven and earth to witness the choice you make. Oh, that you would choose life, that you and your descendants might live! Choose to love the Lord your God and to obey him and commit yourself to him, for he is your life.”

It would have been easy for me to sleep away the pain when Michael died, or to refuse to truly live after finding out the prognosis of my son’s brain bleed; but I want to choose LIFE! When you have lost your joy, and your life seems to be engulfed in sorrow, look to the heavens for your strength. There is a land of blessings that God wants you to have, but he also disciples those he loves. We live in a world full of hardship and trouble, but thank you Lord that we have a hope and a future in you. Could it be true that the plan God has destined for your life, although it is not as you thought it would turn out, could actually be better than you could imagine for yourself? Choose life this week. May God give you eyes of faith so that you can see how satisfying life is when we die to ourselves, and choose to live for Christ. Thank you for your Prayers and love for Malachi. We love him SO much.

Picture credits to Quiver Tree Photography

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: NICU

Love will carry you-from a NICU mama.

Adventures of a One Year Old Micropreemie.

A letter to my son on his first birthday.

8 month old Malachi: A Micropreemie’s Story.

Broken Seashells–A micropreemies first time to the beach.

Showing Malachi that life can be JOYFUL

Healing Tears–Overcoming the loss of Michael

A post written on April 21st-my original due date

Journey to Home-a post from May 17th, 2015

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

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