Tag: Choose Life

Showing Malachi that life can be JOYFUL

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.
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.

Malachi snuggling with Daddy & Teddy.
Malachi snuggling with Daddy & Teddy.
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!

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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)

Finding Joy & Learning to Love after Loss.

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I will never forget the day your heart stopped beating, and mine kept beating…. The day I had to learn to live a life without you.

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I recall the first day that I went out into public after Michael had passed. I thought “I don’t know how to act. Do I smile as others walk passed me? Do I pretend like everything is alright?” I was scared to laugh. Scared to smile. I was afraid that my laughter would portray that my grief had passed; or worse, that I didn’t care about the loss of my son. Going out into the “real world” outside of hospital walls, monitors, and constant worry seemed unrealistic. I would hear people talk about their “problems” that seemed so inconsequential—and it would almost anger me. Learning to laugh, and have complete joy after losing Michael, and dealing with such a medically fragile child has been a challenge at times. But, I have been able to find joy, even in the core of grief. My smiles and laughter come much more easily than they used to. I like to think of them as a way of saying “I may feel like I’m drowning inside, but grief has not destroyed me”.

Thinking of the first day back to work since the twins were born, I recall how nervous I was—but I remember thinking, I just need to show people love. It was amazing how the Holy Spirit comforted me that morning as I drove to work. I thought, “God has given me the ability to love, and that is what I want to do today.” I had read the word that morning and came across the scripture

“” I pray that your love will overflow more and more, and that you will keep on growing in knowledge and understanding. (Philippians 1:9 NLT) “

I thought “wow—Lord let your love overflow through me today.  There was a lady that had delivered a set of twins on our unit.  I remember hearing the word “twins”… my heart sunk—a vivid image of a future of Michael and Malachi, my hopes and dreams for them flashed before my eyes. I thought—she is so blessed, and I really wanted to talk to her.  She called out for something to drink, so I took it to her.    We were talking, and I briefly shared with her my story about losing one of my twins.  I admired her two precious babies in the bassinet beside her bed.  We cried together and something she said stuck out in my mind—“I would have never known all that you have been through—you seem so happy.”  The truth is, I was hurting—seeing her healthy babies made me long for Michaels touch so deeply; but it was also healing.  I was forced to face my reality, and celebrate with this new mom in the midst of her elation.  It is true, joy can exist even in the center of immense sorrow.   In fact, great sorrow can actually expand our ability to have joy.   When you lose something so precious to you, you learn to love deeper and harder.  You learn to let go of your expectation of happiness, and find happiness in each and every moment. 

We are called to rejoice with others in their blessings in life, and mourn with those when they face devastating loss. We are called to LOVE.

“Above all, keep loving one another earnestly, since love covers a multitude of sins. Show hospitality to one another without grumbling.” (1 Peter 4 8-9 NIV)

“Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God. Anyone who does not love does not know God, because God is love” (1 John 4 7-8 NIV)

One thing I have learned after the loss of a child is that many times people just don’t know what to say. Have you ever felt that way after experiencing intense grief? That nothing anyone could say could make things better? That you would almost rather them say nothing at all— than simplify your pain; or pity you? You really never have the “right words” when your soul has not felt such anguish.  No one could fathom the numbness and sting that simultaneously overtook me when I had to carry my dead baby to the morgue, say my last goodbye, or hand him over to the funeral personnel; and I don’t expect anyone to. These are the events that make my story of grief unique to me.

It is through my own personal relationship through Christ, and reading his word that I have been able to move forward and not only survive, but emerge from my suffering. It is through reading what he says about loss & overcoming immense pain—and applying it to my life—that I have learned to LIVE again.   It is through connecting with others that have experienced loss, and lifting each other up in with our words and actions. It is purposefully choosing each day to find Joy—and focus on our victory through Christ.

“No, despite all these things, overwhelming victory is ours through Christ, who loved us” (Romans 8:37 NLT)

After loss, the worst thing someone can do is pretend like the child never existed. Believe me, we want them more than anything to be REMEMBERED. They are forever our child, and not a day could ever go by that they do not come into our memories existence. It is through our verbalizations of them, through our memories, and momentums that they remain alive to us. It is both healing and therapeutic to talk about our babies that once were. Just this week I filled my house with pictures of both Michael & Malachi. I love seeing his face every morning. Does it hurt? Yes; but he is my child—and I want him to come up in conversation. I want people to grasp a glimpse into just how wonderful he was. I want Malachi to grow up knowing his brother. We long to be with him; but until we meet again, we will purposefully choose to be happy—to love deeper, to smile & laugh.

“Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything. 2 Corinthians 6:10

I love the last part of that verse—we have everything. It is true, when Christ is in the center of our heart, we do have everything. It is through laughter, smiles, & joy that we proclaim—Grief will not overcome; my hope remains in Christ! He is our only hope in this fallen world.

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We love you Michael! We miss you more than you will ever know.

Healing Tears–Overcoming the loss of Michael

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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.

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Easter Sunday 2015

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As I stare at this sweet face I am reminded at how far we have come. I am brought back to the day I first laid eyes on Malachi and Michael…so small, fragile, hanging onto life by a thread. I felt like my heart could burst with love, and i remember crying out to God, “please don’t take my babies from me” with tears streaming down my face. I remember the day the doctor came to me with a box of tissues in hand and told me the news that my child had a severe brain bleed. I remember feeling like i was drowning and that the very air was knocked out of me as she reviewed the possible outcome for my child. She so calmly said “some parents choose to peacefully let there children die” after referring to the quality of life Malachi might have. And she added “at least you have Michael.” Our hearts felt like they were going to burst as we sank down in the floor of the hospital and cried in our despair. I asked Jake “where do we go from here” as i felt my entire body trembling. After several moments of utter despair we decided that we were going to just trust the Lord and the plans he had for us. We were going to fight for our babies lives, and lean on Gods word even when we didn’t see a light at the end of this deep dark tunnel.

I held Malachi later that week for the first time, not knowing if it would be the first and last time I ever held him. I wept, trying to remember the way he felt in my arms, the way his little head smelled. I find myself now trying to remember every detail of Michael, and how he felt when I held his little hand or the little noises he would make while on the ventilator. But in that moment I thought, if one of my children wasn’t going to survive, I thought it would be Malachi. But God chose a different path for Malachi- a path toward healing, a journey towards life, and life abundantly.

I don’t know exactly the capabilities or deficits that Malachi may or may not have, but I know that I serve an awesome God that has brought Malachi this far for a reason. Malachi brings me more joy than I can express, and I claim healing over his mind and body.

On this Easter Sunday we are celebrating Gods love in a small hospital room in the special care Nursery at Vidant Medical. We choose to not focus on the negative, but instead how far we have come. We remember Michael with a heaviness in our hearts, but we rejoice that we knew him, and he knew us. Words cannot express the grief we bear, but we know he is seated in the arms of my risen savior. Today we thank God that Malachi is out of the NICU and in an intermediate care unit. He is gaining weight and bottle feeding. The NG tube was removed yesterday and will stay out as long as he takes 30 mls every 3 hours. He is on 1/2 liter of oxygen, but hopefully in the coming days they will try him off of it. He is receiving occupational and physical therapy weekly.  Because he is premature, he has bradycardia sometimes during feedings ( drops his heart rate dangerously low) he forgets he has to suck, swallow, and breath… and sometimes he clamps down, holds his breathe and turns blue… which is very scary for mom and dad. Most importantly we need prayer for his brain and shunt functioning, his development, and his lungs.

Malachi continues to fight, and we are so blessed to see his progress. Each day is still hard, but this little boy just melts our heart and fills us with gladness.

I always feel a little perplexed when people say “Allison you are so strong”…i almost want to laugh and say,” i am the farthest thing from strong“. Most days I have felt overwhelmed in weakness, and overcome by sadness. I am not strong, but I am tethered to an almighty God that is so very strong. Like an anchor he keeps me grounded, like a steal beam he keeps my head held high, like a raging storm he keeps pushing me forward. I saw an image of a tree the other day that had been cut down to a little stump. From the ground the tree looked lifeless, cut off, and broken…but below the soil there were large roots that clung deep into the depths of the earths soil. I felt like i saw myself in that little tree. Broken, and helpless- but with unseen roots that run deep…grounded by the grace of God. I learned through this journey that Gods grace is sufficient. His grace is enough for whatever suffering he allows into our lives. Not just enough to survive, but enough to equip us to EMERGE from our suffering; with faith and hope for the future.

Hebrews 12 1-2 Let us run with endurance the race that God has set before us. We do this by keeping our eyes on Jesus, on whom our faith depends from start to finish.

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

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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.

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(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

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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