Author: MalachisMom

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

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

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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.

  1. Bring more than two diapers in case of explosive poop.
  2. Bring an extra set of clothes to ALL appointments (reference to explosive poop).
  3.  Projectile vomiting may occur if fed after being very upset and having blood drawn.
  4. Bring tissues to all appointments for those tears that seem to pop up unexpectedly when discussing all we have been      through.
  5.  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.

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