There is a song about worshiping even in the hardest seasons in life. It was written when a little boy’s life was hanging by a thread and the only thing left to do was worship. Every time I think back on the last several months this song comes to mind.
Raise A Hallelujah
I’m gonna sing, in the middle of the storm
Louder and louder, you’re gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the King is alive
by Jonathan David Helser, Melissa Helser, Molly Skaggs
Two photos stand out as a part of raising praise even when I wanted to crumble. Two photos that were taken during some of the hardest days of my life, but they were the steps to move forward I knew we needed to take. The first was the day we were given a diagnosis, we had already planned the gender reveal and celebration with our kids and so we did it and we celebrated the life God had given us, despite the grim discussions we had just had with the Maternal & Fetal Medicine D
Diagnosis and Waiting
Everyone thought we were having a girl, I had no clue either way, but they were positive we were having a girl. One day Gavin told me that this baby would travel to churches and other places believers met around the country and teach them how to love God better and love each other. Robert kept hearing the word “hope” and wanted me to find names that mean hope, there are several girl names, but only one boys name-Kit (hope, carrier of Christ, and baby fox). Months later we were at a prayer night, the name Nehemiah (God is my comfort) kept coming up for days, then the pastor said the name and I heard the Lord say, “Nehemiah, the rebuilder of the walls and structure of my people, My Church.”
At our anatomy scan the next day we went expecting to hear if we were having a boy or girl, but still everyone certain it was a girl. I was in a terrible mood, something wasn’t right. The tech was really nervous early on in the scan, at one point she told us we were having a boy, but there was such a heaviness in the room, no peace. She showed us one quick picture of his face then went on to measuring and checking something intently, something she had seen early on and was now going to focus on. She quickly left the room then came back and blurted out in one breath, “the baby has Congenital Pulmonary Airway Malformation, you need to go to Knoxville and talk to a maternal fetal medicine doctor immediately. I can’t discuss it with you” There was a flurry of words, we were rushed though making several follow up appointments, handed a map and told to be there as quickly as possible.
We left, I couldn’t breathe. Robert asked what just happened, if I understood what she had said. “I don’t know. Something is wrong with his lungs…did she say there was a mass?” Neither of us could recall what happened in the rush. God spoke to me, “this is not your fault, it is nothing you did.” So simple and the truth I needed to hear to ward off the lies of the enemy before they started.
The next few hours were filled with talking to doctors and nurses, explanations of what CPAM is and all the negatives that could come with it, that at any point from 22-28 weeks the baby could need delivered, need in utero surgery or pass away from heart failure from the mass pressing on the heart. After 28 weeks, the risks would lessen as the mass is expected to stop growing at that point. At birth the baby would need a NICU team present as there was a likelihood he may not be able to breathe, air could leak into his chest or a multitude of other possibilities. Some doctors told us NICU was certain, others said it was “most likely” -few gave hope of health. We were scheduled to meet with pediatric surgeons, neonatologists, and to tour the NICU so we would be more comfortable for when he had to stay.
We left and I cried out to God, “what do I do?” He gave me the song, “Surrounded-This is How I fight My Battles.” “God, I don’t even like that song, what do you mean?” He responded, “run to Me, that is how you will fight this battle.”
We waited and we prayed. The mass grew. We waited and we prayed. I won’t pretend that I had perfect peace. Some days there was peace, other days were some of the darkest of my life. The mass grew. We waited, we prayed. Then we were told that my fluid levels were high and that it could be an indication that the baby had fluid building around his heart and lungs- his heart might be failing from the pressure. We prayed and we waited. The next scan showed no heart failure but the fluid levels had gone up more.
“Come back weekly so we can check his heart.”
Between the CPAM and Polyhydramnios (excess amniotic fluid) the risk of stillbirth was high along with so many other possible complications. Finding a balance between gaining knowledge so I could discuss things with the doctors (who know very little about this rare defect) and not letting fear take over was hard.
One day while driving I was worrying and stressing without saying a word when the kids suddenly got quiet, from the back Gavin said, “Mom, Shadrack, Meshack and Abendigo walked through the fire and didn’t get burned because God was with them. And another thing, God is our healer.” He had no way of knowing where me mind had been going, but God did and sent the reminder I needed.
Gavin, 6 years old
“Mom, Shadrack, Meshack and Abendigo walked through the fire and didn’t get burned because God was with them. And another thing, God is our healer.”
Somewhere, someway, peace came back into our days, joy returned and hope flooded me again. I was reminded of the promises God had spoken over this baby and when doubt tried to creep in I would worship and thank God for the specific promises.
The mass continued to grow, even after the
2 hours and 49 minutes
About a month ago Robert had asked me if he could purchase a birth course called A Heavenly Welcome. We had read many of the blog posts and watched some of the videos and with so much being taken from our control he wanted to make sure we were doing everything we could to allow Holy Spirit room to move in the birth of our son. We did the course and it was good, for the most
The doctors wanted us induced at 39 weeks so the ETCH NICU team would be scheduled and there for Nehemiah’s birth, we went back and forth over it and finally only agreed to it because I was already at 5cm-not in labor, and it takes so long to get the kids somewhere and get to the hospital in Knoxville. The induction date was set for Gavin’s birthday and he was thrilled to be sharing it with “his best birthday present”!
Many know my love for
When we got in the room I started stressing bad, I almost backed out. Robert grabbed my phone and started my labor playlist and prayed over us. The doctor came in and broke my water and told me that I could stand by the bed but that I couldn’t even be unplugged to go to the restroom-thankfully my labor nurse allowed me to as often as I needed and did the best she could to give room to move. Pitocin was started at
The pain became nearly blinding, and there was no rest between contractions. I was very vaguely aware of people coming into the room. At one point I was able to look around and see that two NICU doctors were beside the warmer and realized the OB doctor was there as well. I began pushing on my own, there was no way I couldn’t. I don’t know if his stats dropped at this point or what, but they began urging me to push without stopping. I could feel him moving down and knew my pushing was good, so I was surprised by the fact they insisted on continual pushing and you could hear an urgency in the doctors instruction that I needed to push harder. The only other thing I was aware of was Robert crying beside me and exclaing, “I can see him! He is almost here! You are doing amazing!” I certainly didn’t feel like I was doing amazing, the pain was at least twice as intense and I felt more out of control than any other delivery. I am fairly certain I scared the entire L&D floor.
Nehemiah came out and I was finally able to open my eyes. I saw his lack of color and saw him straining like he couldn’t breathe. In my
That is when I realized what song was playing as he was delivered, Surrounded-This is How I Fight My Battles. I was a wreck!
The NICU doctor came over after several minutes of examining Nehemiah and told me that I could hold him for a little bit but he needed to go to the nursery (not over to ETCH NICU!) for his O2 to be monitored for two hours, but that he looked perfect.
All my babies have been big, from 8lbs 4oz to 8lbs 15oz, and I so wanted to have a healthy but normal size baby. I had half jokingly asked God from the beginning of the pregnancy for a baby in the 7 pound range, I would joke, “even if he is 7lbs, 15.9oz!” The nurse weighed him and he was 7lbs 15.7oz after having peed! I have no doubt that he came out at 7lbs 15.9oz and I love how God cares about even the tiny-and oftentimes silly, details of our desires.
A nurse brought Nehemiah over to me and I held him for just a couple beautiful minutes before seeing that his O2 was dropping (they had him on a portable monitor) and he was sucking in at the ribs when he breathed, his coloring was looking worse too. They quickly came to take him to the nursery as Robert and I prayed healing over his respiration rate and O2. Chloe told us that the nursery nurse, Kelly, who came in stopped when she saw we were praying and prayed with us. Robert followed him there to watch through a window.
After a while a nursery nurse came in and asked me if they could give him formula because his blood sugar was dangerously low. I agreed then a lactation consultant came in nearly immediately to get me started on pumping colostrum. The formula didn’t bring his sugar up at all, but his respiration rate and O2 went back to normal. They told Robert that trauma could cause the low blood sugar and other issues he was experiencing. The cord had been wrapped around his neck twice. We prayed for his blood sugar to return to normal. I was able to get more colostrum from pumping than they normally see and they fed it to him and waited an hour to test him again. At this point I was moved to a recovery room and they said I could walk to the nursery to see him. I got there just in time to see his blood sugar tested and back to a normal level! They brought him to our room but for the next few hours we couldn’t get him to wake up to eat or even come close to latching, so we prayed and he latched perfectly and ate for a solid hour! They continued to watch him close but he stayed with us except when they would take him to recheck blood sugar.
Forty eight hours later we were getting in the car with our son and all the emotions hit. I had not imagined we would be taking him home so soon and here we were leaving with a healthy baby boy-not at all what we were told to expect!
I cannot even begin to touch on all the amazing things that led up to this day, all the ways God directed our focus and all the promises that He made. We still have a journey ahead as we continue to pray for full healing over Nehemiah’s lungs but we are so grateful for our son and that beautiful cry he made at his birth! Above
To all who prayed with us and all who are continuing to pray and walk with us, thank you! The words will never be enough, but knowing we were being and are being carried by the Body is amazing!