Brandon and I found out on June 20th, 2017 that we were expecting our first baby. The entire pregnancy was “textbook,” in fact, my doctor always called it “boring,” and we were grateful for that. With every passing week my “What to Expect” app kept track of Lucas’ growth and what I “Should be expecting” and every week I experienced whatever it said I should. The way I saw it was that if everything were so textbook, so his delivery and life would be too. My due date was February 26th, which I thought was neat because my birthday is on October 26th. The 26th came and went, and Lucas still hadn’t arrived. I went to my 40-week appointment, and the doctor scheduled an induction for Tuesday, March 6 at 11:00 am, pending the hospital had a bed. She also wanted to see me back in one week to have an ultrasound to check my amniotic fluid levels.
The week passed, and Lucas still hadn’t come on his own. Sunday, March 4th we went to church like any other Sunday, and there was a guest Pastor who taught on trusting the Lord despite what you see before you. At the time this sermon spoke to me because I was really believing for Lucas to be born without medical intervention, induction was not part of my “birth plan.” At the time I had no idea how much that sermon was needed. After church, we went to Brandon’s grandma’s house to celebrate his little cousin’s birthday. The hot tub hadn’t been turned on in a while so it was just above body temperature and I decided to get in to relieve some pressure off my hips. While in the tub, I felt a gush between my legs, but I couldn’t tell if it was pee since I often have to pee once getting in a large body of water and being 41 weeks pregnant I also had poor bladder control. After that, I kind of felt weird but nothing too alarming so I didn’t say anything to anyone. When we got home I finally let everyone know that I think my water may have broken in the tub, I then had one real contraction, but other than that I didn’t have any hard and fast labor pains or feelings. I took a shower and got ready for bed thinking that if it were real, that I would go into labor overnight and we would go to the hospital then.
The next morning we got up, Brandon went to work to tie up work-related loose ends before our induction on Tuesday, I went to the mall with my aunt and grandma, picked up the dog from the groomer then came home and ate lunch. My 41-week appointment for my ultrasound was at 12:50 and my mother in law, grandmother in law and Brandon were meeting us there to see Lucas on the screen one more time before we met him. Sure enough, my amniotic fluid was low, so they sent us across the street to get the induction started.
When I arrived at the hospital, I was 40% effaced and dilated 0.5 centimeters. They gave a pill that is supposed to help with effacement and told me that if the medicine weren’t kicking in that, they would administer cervidil before I went to sleep. They let me know that these most likely would not induce labor, but did have the potential to. Well, an hour after the cervidil was placed; I started full on labor, around 1:00 am March 6th. Around 4 am it really started picking up, and about 5 am the doctor checked me, I had only dilated to 2 centimeters! The doctor recommended IV pain relief, and I assured her I did NOT want it (and thank God I didn’t have any). She told me she really wanted me to get to 4 centimeters, preferably 5 centimeters before she felt comfortable with an epidural. Before going in to have Lucas I told Brandon repeatedly “I do NOT want IV meds.” The only pain management I was comfortable with was an epidural (if I couldn’t do it naturally). During the laboring process, there were several times that I told him I wanted the morphine, and he did exactly what I asked him before, which was tell me NO! He was so encouraging and kept telling me that I was doing great and sure enough as soon as the contraction would end, I would decide that I didn’t want the I.V. pain relief again.
Sometime between the doctor telling me I needed to dilate to four centimeters and her rechecking me at 8:30 am, I got on my knees and pleaded to God to get me to four centimeters as soon as possible. I was about to tap out when she rechecked me at 8:30, but sure enough, I was at six centimeters! (GOD IS GOOD!) The anesthesiologist was called in, and I received my epidural at 9:00 am.
At 11:00 am every nurse on the L&D floor came rushing into the room. They informed me that Lucas’ heart rate had dipped way down and they needed to turn me onto my other side. As they were rolling me over the nurse saw him crowning. She exclaimed, “It’s time to have a baby!” I was ecstatic. I called for Brandon and made sure he was in the room, I pushed three times, and Lucas was earthside.
He was the tiniest little peanut, he cried after some encouragement, not loudly but he did cry. They had added some saline to the womb during my laboring since my fluid was so low so they told me that he may have had more fluid to get rid of than other babies. After an hour of skin-to-skin, the nursing staff took him for his APGAR and other pricks and pokes, and got me ready for couplet-care. Lucas scored well on his APGAR and had no red-flags to indicate anything was off.
Our Sleepy Baby
While in postpartum I made the mistake of thinking that 800mg ibuprofen would be enough to manage my pain. To top it off my bladder took a full 24 hours to wake up after the epidural had worn off. I couldn’t sit, stand, lay down anything. I was in excruciating pain until the narcotics finally kicked in. The first 24 hours in postpartum I didn’t get to hold Lucas, except to try to get him to nurse.
Two different pediatricians who saw him at our delivering hospital kept assuring me that he was just a “sleepy baby.” On paper he was fine, blood sugar good, heart rate good, oxygen saturation good, his muscle tone was “fair,” he just wouldn’t stay awake. They reassured me that after 24 hours he would come around and all would be well.
Right at 11:00 in the morning of March 7th, I was holding Lucas, skin to skin. He started moving his hand to his mouth and rooting around looking for the breast. I was ecstatic. I quickly got him into position, placed the nipple-shield and called in our nurse, Elma, where she helped by doing a supplemental-nursing-system feed. This was it! The 24 hours were up, and our baby was good to go…
or so we thought.
After that everything sort of went down-hill. We didn’t see Lucas’ eyes open again for five days. Brandon and I both noticed a slight jerking movement in his right arm. When we brought it up to the doctors, their response was “Babies just have immature nervous systems, it’s perfectly normal.” Our night nurse, Elma, thought otherwise. Her spirit was telling her something was not right. Her and our daytime nurse, Angela agreed. So with our permission, they requested a third pediatrician to do an assessment and give his opinion. Doctor Vonn was concerned about Lucas’ sleepiness and how his muscle tone was getting progressively weaker. He let us know that some infections take longer to grow in the cultures and that it was very possible he had an infection. He advised that we send Lucas to the special care nursery for a round of antibiotics.
Brandon and I stood by while the nurses in the special care nursery inserted an I.V., drew blood and took vitals on our tiny two-day-old baby. At the time I just couldn’t imagine how it could get any worse than this. Not long after being in the nursery the nurse who was taking care of Lucas, somewhat urgently, called over the Neonatologist on staff. After looking at Lucas, he ordered a loading dose of Keppra, an anticonvulsant, and let us know that the jerking in his arm could be indicative of seizure activity. He told us that seizures could be an early sign of infection, in the brain.
He immediately called for transport to a hospital in Phoenix to get Lucas in a NICU that was equipped to handle a baby showing neurological issues. They called both Phoenix Children’s Hospital and St. Joseph’s Hospital and told us they would take him wherever had an available bed first. Thankfully that just happened to be St. Joe’s.
Four hours later, we got the call that transport was there to take Lucas to Phoenix. Our ambulance driver was so nice, we talked about his family and our shared love of Jesus; he listened to me ramble on in my nervousness and kept me calm on the half-hour drive.
Once we got to St. Joe’s lots of possibilities were thrown around. Most notably meningitis. I lost it and again thought how on earth could this get any worse. Lucas was immediately put on an EEG monitor and a steady dose of Keppra. They started running all sorts of blood tests and urine analyses, to try to figure out was going on inside his tiny two-day-old body.
Thankfully, St. Joe’s let us stay in their family room for the day, so I could pump and sleep since I had been going for almost 24 hours at this point. A social worker came to see us and let us know that Ronald McDonald House would take us in, even though we lived only 27 miles away and the radius is 30. We were thrilled that we would be so close to Lucas and never have to leave his side.
After only a day and a half at St. Joe’s, the pediatric Neurologist on call, Dr. Vinodh Narayan, had basically diagnosed Lucas. After his assessment, he ordered a test known as an amino acid panel. With the results, he was quite sure Lucas had a rare genetic condition called Nonketotic hyperglycinemia, or NKH. The doctors at St. Joe’s explained to us that there were multiple forms of NKH and that it wasn’t life-threatening. However, Lucas would have to be transferred to Phoenix Children’s Hospital because the medication used to treat NKH was not available at St. Joe’s.
Twenty minutes after hearing the word NKH for the first time, we were in an ambulance being taken up the street to PCH. The best part about it was we had the same ambulance driver, God is good! Brandon and I were trying to stay positive. Which became increasingly difficult upon arrival at PCH, on March 9th.
What is NKH?
Non-ketotic hyperglycinemia (NKH) is a rare, genetic, metabolic disorder caused by a defect in the GLDC or AMT gene code which affects the enzyme system that breaks down the amino acid glycine, resulting in an accumulation of glycine in the body’s tissues and fluids. NKH typically presents in the first week of life with low muscle tone, lethargy, seizures, coma, and apnea requiring ventilator support. NKH is caused by genetic variants (mutations) in the genes that encode the components of the glycine cleavage enzyme system. The incidence of NKH is predicted to be approximately 1:76,000. NKH can occur in individuals of any ancestry. There are approximately 500 children with NKH worldwide.
There is no curative treatment for NKH at this time. But we are going to change that with your help!
The doctors and nurses on staff seemed to have differing opinions than those at St. Joe’s and theirs weren’t so optimistic. They told us that Lucas had forty-plus seizures during his short stay at St. Joe’s and quickly had an EEG tech come to reconnect Lucas to another monitor.
PCH also had a family room in the NICU and informed us that we could probably only stay there one night, as they would more than likely have to let another new admit family stay there the next night. Since it was now the weekend, we wouldn’t be able to get into the RMHC on PCH campus until Monday. However, there weren’t any new admits the next night and praise God, we got to stay another night!
The morning of Saturday, March 10, I woke up to my mother-in-law coming to tell me that Lucas was getting his EEG off and I could FINALLY hold him, after two VERY long days. She had brought me a book by Charles Capps called God’s Creative Power, and as I held Lucas, I would read the scriptures and declarations to him. I could feel the energy of the Holy Spirit surrounding us, and I began to pray in the spirit.
I prayed that God give me a translation of my prayer and as I’m praying I start repeating, Lucas is healed, Lucas is healed, Lucas is healed. I could feel the energy transferring through our bodies as I prayed and I knew that the Holy Spirit was moving through us. It was the rawest, most genuine spiritual experience I had ever felt. I knew it was real and I was at peace.
On Sunday, March 11 the geneticist, the nurse practitioner in the NICU and our appointed nurse took Brandon, his mom and dad, my mom and me into a boardroom in the back of the NICU. From what I remember she explained that she believed Lucas did, in fact, have a medical diagnosis of NKH and that it was most definitely the most severe form (based on his initial glycine levels). She let us know that he more than likely would not be able to hold his oxygen up on his own and that he would have several apneic events that would eventually lead to intubation, and ultimately a “quality of life decision” on our part. She explained that if Lucas were to make it out of the NICU, he would be severely and profoundly mentally retarded, never learn to eat on his own, walk, talk, etc. The nurses were obviously expecting a particular reaction out of us, as they had grabbed a big box of kleenex on the way into this room. To their surprise, the response they got was much different than expected.
Once I had heard enough, I slammed my fists on the table, exuberantly said, “We will not let him die!” “Are we done here? Can I go hold my baby now?”. I stood up, and with my family behind me, we left the room to visit with our newest addition. The rest of the day was spent reading God’s Creative Power to Lucas, and very specifically declaring The Truth over him.
Seeing the Favor
The next day, Monday, March 12th, we saw Lucas’ eyes for the first time since leaving our delivering hospital. It was only a couple of seconds, but they were opening. On Tuesday he opened them for 10-15 seconds, long enough for me to get a quick photo. He also whimpered, the first time we had heard him make a noise since just being born. On Wednesday, during skin-to-skin, he rooted around looking for food, again long enough for me to catch it on video. On Thursday, Lucas full-on cried, they took him off of the CPAP machine (that was forcing him to breathe), and by the end of the day, he no longer required any oxygen support. Friday he drank a full bottle for his daddy, and he even nursed (somewhat successfully) twice. Saturday they were confident that his medications could be taken orally and removed his I.V. One week after being told we weren’t going home with a baby, we had our first conversation with the PCH staff about being discharged.
The following week was all about Lucas passing all of their little tests and about Brandon and I learning CPR. They had to be sure Lucas could sit in his car seat for an hour and that he could tolerate all of his medications so that we would be confident in taking him home. On Friday, March 23, 2018, we were released from the NICU at PCH, and we finally left with our baby.
Since then the road has been bumpy, and there have been trials. We’ve had scary new diagnoses, minor procedures like tongue and lip tie corrections, extended hospital stays and even intimidating genetic testing results that did, in fact, indicate that Lucas genetics could align with a medical and clinical diagnosis of NKH with one pathogenic and one variant gene.
With all of that being said, I know what I know, and that is God told me the truth… Lucas is healed!
I don’t know what God’s timeline is, or what his exact plan is, but The Word says that we have been healed by the stripes of Jesus and that’s really all I need to know.
This is truly a condensed version of all of the favor we have received regarding Lucas. Really the list is never-ending, because every single day He shows up for us, sometimes big, like really BIG, and sometimes in just a sweet little Lucas smile, but He’s always here.
Thank you for reading this, it’s really been weighing heavily on me to be more open about Lucas and our journey. It’s so easy to feel sorry for someone or to pity them, but I don’t want pity; I want the world to know that Faith does move mountains and that trusting God and His word can change everything about who you are and how you experience your earthly life.
Chancee Womack Culp – Lucas’ Mom