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.