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