Jun 20, 2017

Tiny but Mighty -- Part Three

Jokingly I told J when we finally got home after two long weeks that we had just gotten home from our very first short term mission trip! The patience, endurance, hope and wisdom that was required during our stay was only accomplished by the power of God living within me. After about seven hours of waiting in casualties we were finally were given a spot in a room with two other babies and mommies. J was transferred to a bassinet, I was given a hard, straight back plastic chair to sit in and a small metal cabinet to store our things in. The next few hours were spent sharing J’s medical history with the sisters, doctors and students on duty. Thankfully there were several familiar faces I recognized which made our unique setup more easily understood and accepted. For better or worse I have spent enough time on hospital wards to understand my “style” of dealing with the sisters, students and doctors. I know what are my “must haves” are (my own kettle and coffee supply) and how to somewhat gracefully navigate the choppy waters of ward life pushing for J’s best amidst antiquated and poorly preformed policies and procedures. But every ward is different and the environment of care (or lack thereof) can change from shift to shift. Thanks to my fabulous team of Aunties our supplies and required items quickly made their way to the hospital and we began our stay.

During the Monday through Friday of a hospital stay your days are filled with sisters, administrators, students, doctors, specialist, cleaning staff and more students. The weekends are just as quiet as the weekdays are busy so we spent our first day on the ward getting to know our roommates and the current layout of the land. We spent our first week with two young mommies under the age of 22 and their ill infants. It was those first few hours on Sunday that I began to sense that our time on the ward was going to be more about the people around us than about J and myself. Throughout our weeks on the ward the Lord opened door after door for us to pray for and encourage those around use. For example, I probably answered dozens and dozens of baby care questions posed to me by these young moms. I was able to share my hope in Christ and the call that He placed on my life to care for littles like J.

During the days at the hospital I fed J every 3 hours, kangarooing him and enduring the unrelenting stiffness of my hard plastic chair. I spoke to sisters and students and saw our “head doctor” once a day. The students come by to work out a care plan and prepare J's file to be ready when they are quizzed about him by their attending physician(s). J was put on precautionary antibiotics after his chest x-ray showed the milky white shadows of his aspiration. They would pull him away into the “procedure room” to draw blood and do any procedure that was deemed too aggressive for mommies to watch. It was during his lumbar puncture (to test for meningitis) that I heard J actually cry for the first time. It is not my first, or even my 20th lumbar puncture I’ve witnessed but hearing J’s broke my heart into a million little pieces. J was quick to forgive and after a few minutes of snuggles he was his regular self once again. During the first week or so at night I was allowed to lay a blanket and sheet on the floor to sleep next to J. He continued to eat every 3 hours through the night which provided me the opportunity to wake up the mommies in our room to feed their littles, too.

Nights on the ward are difficult. Any baby without a mommy to care for them are left to the sisters to care for. These sisters, to the best of my observations, spend a bulk of the night sleeping at the nurse’s station while the babies cry and cry. After a few days another baby was brought into our room (there was often shuffling of beds and rooms depending on the needs of the day or night) who was without a mommy at night. He spent his first night with us screaming the whole night long. Our room was located directly across from the nurse’s station. The next night the same team was on duty and they decided to move this little one down to the end of the hall and brought in a baby with a mommy. I heard that little cry the whole night long again only slightly muffled by the distanced created by his move. We had another little man move into our room a few days later straight from another hospital’s NICU weighting less than J and looking way more fragile. He, too, spent his first night and day without his mommy. He was left unattended for hours at a time, no matter how loud he screamed. He was supposed to eat every 3 hours and he only ate that night twice after I chased down a sister to feed him. He pulled out two GT tubes and his oxygen cannula was never in his little tiny nose properly. In a desperate effort to keep J from contracting another illness or infection I never allowed myself to handle the other babies in our room, even when I could obviously see the root of their distress or discomfort. Like I said: a perfectly designed torture.

When we were first admitted onto the ward we were given an apnea mat for J to sleep on. It basically was a mat that monitored his breathing and an alarm would sound if he didn’t breathe for more than 20 seconds. After all we had been through it was a safeguard that gave me peace lying down at the foot of his bassinette for two hours or so at a time. A few days in the battery of the machine died and even though I asked every sister, student and doctor I saw that day no one could procure a battery for our dead apnea mat. It was that night that I faced the fear that J’s ordeal had been implanted in my heart head on. I am not anxious person by nature and that night I felt like it took every ounce of faith to lay myself on the floor, with J out of sight and no alarm to warn me if he stopped breathing. I cried and prayed that God would uproot the seeds of fear that were threatening to take root in my traumatized heart. As I prayed I felt the peace of God meet me as I forced myself to close my eyes and will myself to sleep and I did. Two days later Auntie Cindy was able to bring me another battery which helped me rest as well. However only a few days later a sister came to me and practically begged me to give up the monitor to a new admission who she was very worried about. Thankfully, because of the work God had begun a few days ago I was able to surrender the mat without fear… well without overwhelming fear.

J was scheduled for quite a few tests the first week we were there. He had a Cranial Sonar, which came back normal. He had a CT Scan, which came back normal. He was able take an EEG test and was able to see the Cardiac Clinic. Many babies with Down Syndrome have mild to serious heart conditions. Our doctors at the hospital wondered if his apneas were rooted in a probable heart defect. Happily, we discovered that J has two very small holes in his heart that do not require medication and that the cardiologist says are likely to close on their own as he grows! His blood work all came back within normal ranges and they were not able to grow anything on his cultures so after 5 days they stopped his antibiotics. He was visited by the dietician who was pleased with his growth since being admitted into our care and by an OT who was very impressed by his active little self and came by every day to see him more for enjoyment than actual “work”. The only test that proved insightful was the Milk Scan where we were able to identify that J has severe and silent (meaning he did not present with typical, outward symptoms) Acid Reflux. Our doctors concluded that his apnea was caused by his Acid Reflux which caused milk/vitamins to be breathed in during an episode. We started immediately on a daily medicine to help treat the symptoms of his Acid Reflux and a feeding regime that kept him upright feeds and after each feed for at least 20 minutes. The second week’s x-ray showed no more shadowing and we began the slow process of weaning J from his use of the oxygen. Our doctors promised that once J was off the oxygen and if he continued to gain weight we would be discharged and so we began to work and pray!

Just as we began to wind down our 9th day on ward I began to sense that something (or rather someone) was about to change things on the ward. The Head Matron of all the pediatric wards arrived around 4:00pm and began to dish out rebuke and reform in all sorts of problem areas on the ward. Her main complaints (as far as I could ascertain) was that mothers who were not breastfeeding were allowed to stay the night and that the mothers that did stay the night were sleeping on the floors. She claimed that it was unhygienic (which it wasn’t, just ask the cockroaches) and that it made the ward look untidy. She then went from room to room with the ward’s head sister and decided which mommies could stay and which would have to leave. Considering I am not even a mother, let alone a lactating mother I began to pray over and over, “Lord, hide me in the shadow of your wing”. As they came by the head sister pointed to me and said confidently, “This mommy is kangarooing so she will stay”. Out of 30 mothers, only 13 were allowed to stay the nights and only 3 of those 13 were able to stay on the ward the whole night and I was one of them. The only caveat was that the 3 mommies that were allowed to stay on the ward were only allowed to do so if they stayed sitting in their unrelentingly uncomfortable hard plastic chair. As the other mothers were led to another floor to sleep 3 mommies to a bed on another ward I cried half out of relief and half out of desperation. I didn’t know how I would manage without those hours lying prostrate on the floor. I sent out a few “pray for me right now” messages and set in for one of the longest and hardest nights I’ve had in a long time. Each room contained littles who screamed for their mommies. Sisters who were used to letting mommies do the feeding, reminding and soothing were left to care for a whole ward of unattended babies. I know babies went without feedings, meds and oxygen as the sisters bustled about for a few hours but still somehow managed to fit in lengthy naps while the crowd wailed around them. Women, in particular, are hard wired to have a biological response to a babies’ cries. Having to forcibly ignore cries from babies in the very room you sit while straining to listen for the cries own child is, wait for it, a special kind of torture...

Part Four coming soon as I can get to a spot to upload pics! Lots of love!

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