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.
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
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.
The Diagnosis
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.
Creative PowerGod
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 re****ed, 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 indicate that Lucas genetics could align with a clinical diagnosis of NKH with one pathogenic and one variant gene.
The Truth
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 Culp – Lucas’ Mom
