Since Macie graced us with her presence on January 30th, everything in my life has changed for the better. When my eyes first saw my sweet girl, and she was laid on my chest, my heart brimmed with joy and I knew that it would be impossible to love anyone more. Little did I know that my love for that little girl would only grow deeper and stronger with each passing day.
Everything about Macie was perfect, from her button nose all the way down to her little toes. She was perfect, but her health wasn’t. In a matter of hours, the happiest day of my life quickly rolled into one of the scariest. When it was discovered that Macie was ill, I couldn’t understand how MY baby could go from being so healthy to being so sick in a matter of twenty-four hours. The events that occurred that night and the day after are sketched out vividly in my mind. Here’s a brief account of what occurred that night:
Macie struggled in her feedings after she born and I was told that that was pretty normal. We had numerous lactation nurses come in to assist Friday night into early Saturday morning. Macie latched on once and fed for a brief time, but following that, she went nearly the entire day without a good feeding. Saturday morning, the morning after she was born, Macie was very fussy, but as the day progressed she seemed to calm down. Looking back now, it breaks my heart knowing that she wasn’t calm, she was just too sick to cry. It was of the Lord that the same lactation nurse we had in the morning came to check on Macie one last time before leaving her shift Saturday evening. What we thought were simple baby noises, the nurse identified as “not normal.” She thought that Macie might have some sort of blockage in her digestive tract which was inhibiting her ability to eat. She was also concerned about her color- something else we failed to observe. The nurse quickly whisked Macie away to the NICU to determine whether or not she had a blockage and to conduct a few tests to see if she could possibly have an infection.
The NICU doctor came to me shortly afterwards to get my consent to give Macie a spinal tap. Fear started to creep into my heart and it became full-fledged when Macie’s pediatrician came up to the hospital and signed his care over to the NICU doctor. We were told by the NICU doctor that Macie could possibly have spinal meningitis; I couldn’t believe it, I knew that spinal meningitis was rare these days. It was later confirmed that she did indeed have spinal meningitis and that I most likely gave it to her during the delivery.
Macie was infected with group B streptococci, a bacteria I had tested negative for four weeks prior to her delivery. Because of the negative test, they had decided not to run the antibiotic through my IV during delivery (the hospital told me that this was because the risks for the antibiotic outweighed the benefits and that it was simply more cost effective not to run the IV). The amount of guilt I felt in those moments was crushing. How could I give my sweet baby spinal meningitis? Why didn’t I notice that she was ill earlier in the day? Shouldn’t a mother know these things? Wasn’t I the one that was supposed to be protecting her? I was angry at myself and angry at the hospital- to me, it seemed like this infection could have been easily avoided.
That night I watched a team of doctors and nurses hold Macie’s tiny body as she went through numerous seizures. The seizures she experienced stopped her breathing and she was placed on a respirator. Later on during her time in the NICU, I wouldn’t just witness these seizures from afar, but I would hold my precious baby as she seized and quit breathing in my arms. Those moments literally took my breath away!
That night I was forced to stand at a distance as an amazing team of doctors and nurses prepared Macie for her departure to a higher level NICU. She was rushed off to a hospital that could care for her physical needs, and Matt and I were left behind still waiting to be discharged from the hospital I delivered in. Matt and I felt so helpless in that time. All we could do was lift Macie to the Lord in prayer.
That night, Macie’s life was touch and go, but by God’s grace she made it through the night. That Sunday I was supposed to take Macie home, and that Sunday also happened to be my birthday. My heart ached and was heavily burdened all day. This was not how I had planned and envisioned our daughter’s first days of life. All I wanted to do was to take my sweet girl home with me.
As I watched Macie’s labored breathing throughout that week, I wished that I could take every ounce of pain that she were experiencing from her and bear it myself. Macie was placed on a respirator and feeding tube for some time, and eventually a PICC line was inserted to deliver a heavy dosage of antibiotics. Macie’s body was tight and rigid, and she held her arms and legs close to her body, and her hands and feet were tightly clenched. The spinal meningitis caused her muscles to contract and contort her body. She cringed when anyone tried to move her, and her cry was whimpered and labored. I would stand or sit by Macie’s crib during that time, rub her head gently and sing to her. When it was finally okay for me to hold her, my heart could have burst and I wouldn’t have known it. Macie still couldn’t handle a lot of movement but I was so thankful that I could hold her to my chest. I couldn’t help but cry and marvel at how I could already love a little soul so much!
As Macie struggled the next few days, I continually turned to the Lord in prayer. I exhausted my prayers to the point where I didn’t know what more to say before the Lord. I continually praised the Lord for giving Macie to us; I asked for His healing over her body and prayed that I would be the best mommy for her. The first week in the NICU was the hardest and I learned that I needed to take one day at a time. I couldn’t think about how the seizures may affect Macie long term–I had to focus on the moment right in front of me. As I took one day at a time, the Lord gave me so much peace about the future. The Lord used Philippians 4:6-7 to speak to my heart, “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” I felt a peace that only the Lord could give, and I can honestly say that my heart and mind were guarded from all the “what if’s,” questions, and future concerns I may have had about Macie’s future.
As the days progressed, there were good days and bad days in the NICU. There were times when I felt incredibly lonely. In that loneliness, I found myself caught in thought and often drifting towards doubt and fear. Incredibly, when I was fearful, the Lord used a song by Kari Jobe called “I Am Not Alone” to remind me that He was fighting for me and for Macie and that all I needed to do was be still and rest in Him. A friend actually introduced and blessed me with this song on the very first day Macie was put in the NICU (she had a little one that was also in the NICU). Literally every day after that, I would hear it on the radio when I was driving up to the NICU or during the evening when I was leaving the NICU. The Lord knew what I needed to hear, and the message was so powerful to me. The words in this song comforted me knowing that the Lord cared for me in my darkest hour. When I felt all alone, I would hear this song in my car and be reminded of God’s great love and provision in my life. Here are the lyrics to the song:
When I walk through deep waters
I know that You will be with me
When I’m standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
And I will not fear
You amaze me
You call me as Your own
You’re my strength
You’re my defender
You’re my refuge in the storm
Through these trials
You’ve always been faithful
You bring healing to my soul
Isaiah 43:1-3 says “Do not be afraid—I will save you. I have called you by name—you are mine. When you pass through deep waters, I will be with you; your troubles will not overwhelm you. When you pass through fire, you will not be burned; the hard trials that come will not hurt you. For I am the Lord your God, the holy God of Israel, who saves you.”
Through the roller coaster of doubt, fear and emotions, God cared for us, provided for us and healed Macie’s body. I rejoice in Him because He created us, loves us, cares for us and always pursues us, and I know that we have only seen a mere glimpse of His goodness. During our time in the NICU, I was reminded that the Lord blessed me with Macie, and that she ultimately belonged to Him. I was just given the most precious gift of being able to care for Macie in her life time. She was HIS baby, not mine. So I prayed that His will would be done and that He would ultimately be glorified in it. Writing this brings tears to my eyes, because, as I say those words now and continue to pray them over Macie’s life, it is indeed the hardest prayer I continue to pray.
During Macie’s twenty-one days in the NICU (it felt much longer to us than what it actually was) I was overwhelmed by God’s provision through the body of Christ. We knew that Macie was brought before the Lord by our loved ones, closest friends and even strangers. We had friends come up to the hospital the night she was sent to another NICU just to pray with us and comfort us through our most frightening trial; we had friends and strangers bring us warm meals four times a week; we were given gas cards and money to help us financially, and we even stayed at a friend’s home near the hospital for the duration of Macie’s stay. We also had incredible nurses who cared for our Macie as if she were their own. Our God is so good, and He used His people to encourage us, comfort us and love us, and we were so humbled by this incredible outpouring of love.
Macie is and always will be my miracle baby and one of my greatest and most undeserved blessings. I know the Lord has a special calling on her life- her story has already made the name of Jesus great by bringing so many people together in prayer. Macie’s story will always be a reminder to me that God is SO good and that He is worthy of all of my praise!
Macie’s experience forced me to depend on the Lord for strength, and my husband and I grew in our marriage as we learned how to face a difficult experience together. I am reminded every morning to be thankful that I have precious Macie in our lives.
*As a great side note, I do want to share with you that after Macie’s last neurologist appointment (two weeks ago) Macie no longer has swelling on the brain or signs of seizures. The neurologist thinks she is as healthy as any other 8 month old. In six months we will see Macie’s neurologist again, and if everything looks as great as it did during her last appointment, we won’t be seeing the neurologist again. Praise the Lord! No more ultrasounds, EEGs or MRIs. Our God is SO good!