Tiny but Mighty -- Part Four

By this time, I was beginning to look worse for the wear and was so tired that I literally fell asleep sitting in my uncompromisingly rigidly hard plastic chair with a cup of coffee in hand! My fantastic support team at Refilwe worked it out that I would be able to go for a few hours each day to a nearby hotel to take a shower and lay down flat for a nap. It made all the difference in the world. I am not sure if I would have made it without that kindness. We were attempting to wean J off the oxygen and had managed to get him to the lowest setting available, “really just bubbles” said one doctor. The problem was that the “weaning” process began to look like this: take him off the oxygen, bring around the only semi-working SATS machine on the ward to check his blood oxygen saturation level, get one bad number and then put him right back on the oxygen only to be forgotten for the rest of the day. After a few disheartening days like that, I asked Auntie Cindy to bring our own SATS machine to the hospital so I could monitor him more closely myself. I clipped J’s little big toe into the machine, removed his oxygen and then would watch. If he dipped too low, on the oxygen would go back on and I would give him some time to recover then we would start the whole process again. Slowly but surely he was able to go for longer and longer without oxygen. We spent the weekend working up to a whole 24 hours without oxygen and then on Monday morning we were able to start the 10-hour process of being discharged!

As I began to pack things up and say goodbyes on the ward I was able to see, in part, some of the reason why J and I were allowed our stay on the ward. We had made friends and allies; we had been able to encourage and speak hope to hurting and frightened mommies. We were able to share hard truths and open conversations with sisters, doctors and administrators on the ward where observations and concerns were carefully shared. We made friends with another precious little on the ward with Down’s and were able to leave her with a smile and a quilt made with love all the way from California. We shared our story with so many and God’s goodness towards J was recognized by everyone we were able to share with. And the story of God’s love, goodness, provision and favor for J (and his family here at El Roi) has just begun! He is thriving being at home and has captured all of our hearts. I have to sneak in early to his room in the mornings to catch his first smiles before another Auntie beats me to it! I can’t wait to see all the God has in store for this extra special, tiny but mighty, ridiculously loved and wanted, little sunshine of my life. 

I will share more about his current wonderfulness in posts to come but in general he is rocking it!!! As of today he weighs over 5kg and just moved to drinking 150 mLs every four hours. Thanks for all the prayers and kind words about our sweet boy. Love you all! 

And J? You were made for amazing things, my boy, I can’t wait to see what they are!!!

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 20^th 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 9^th 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!

Tiny but Mighty -- Part Two

On his 10th day with us J and I headed to a nearby mall to have coffee with a friend and do some shopping. It was a Saturday and before our friend arrived J and I quickly ran to a shop to pick up shoes for his eldest brother in the house. I had a pair of sandals in my hand when J made a noise I had not heard him make before. It sounded like a weird burp/hiccup which I now understand was an attack of his severe acid reflux causing the vitamins he had had at home to come back up, uninvited, into his throat. Instead of being able to swallow it back down J breathed in the fluid and stopped breathing. I began to count, fully expecting to hear an intake at “five” but by the time I reached “ten” I began to worry. I quickly pulled him from the wrap and moved him about and he drew a sharp breath in and then began to breathe normally. I was concerned but he was acting normally so we went on to our coffee date.  At brunch J was sleepy and not super interested in eating (which happened from time to time) so I put him back in the wrap and we headed to the grocery store, our last stop for the day. Here in South Africa it is common to have to pay for parking at shopping centers and malls. When you enter the lot you receive a ticket and then on the way out you pay for your parking at a machine near the entrance. I always, ALWAYS, put the Parking ticket in the very same place in my wallet but when it came time for us to leave the mall I could not find my ticket. I began to grumble internally at my “ baby brain” and made my way to the nearest information desk. It took about 15 minutes to get everything sorted by the time we got to the car I was hot and harried. I quickly unloaded our groceries and then went to put J into his car seat. When I pulled him from the wrap he was floppy and not breathing! I immediately ripped off his clothes and began saying his name and doing my best to rouse him. I laid him flat in one arm and used my knuckles to rub his chest along his sternum and he finally drew in a sharp breath. By this time, I was properly scared and drove the 15 minutes home listening for every breath and asking God for wisdom. It was only later that I began to realize the Grace that protected us that afternoon. Had I not “lost” my parking ticket there is a very good chance that I would have arrived at home only to find a dead baby strapped securely into the car seat behind me.

Once we were home I began watching him like a hawk and giving him 30 minutes to either take a turn for the better or we were going to head to the hospital. Unfortunately, our babies do not have the luxury of Private Health Care and all our emergency medical needs are met by a government hospital that is about 45 minutes away from our home. It is a training hospital where there are well trained (and being trained) doctors and specialists but the moment to moment care provided by the Sisters on duty is patchy and sometimes downright scary. Due to this truth I rarely take a baby to the emergency room unless I am confident that the baby needs to be admitted. After being home for another 20 minutes or so and attempting a feed J stopped breathing again. I stopped counting after reaching “45” so I could lay this floppy, treasured baby down in my arms to start CPR. I could feel his tiny heart beating sporadically as I covered his mouth and nose with mouth and gave 2 short puffs. I waited and then blew another set of short puffs and by the grace of God J finally drew in a ragged breath. “Three strikes you are out” I said to myself and rushed into the house to hand him to Auntie Karabelo (our only Auntie medically trained who just “happened” to be on duty that day) so I could call Sister Didi (our clinic Sister who lives on site) to come and check J and frantically pack a bag for the hospital.

By the time I got the bag packed for J and grabbed a few things for myself Sister Didi had woken herself up from a nap (precious sweetheart that she is) and was listening to his chest with her stethoscope. She confirmed that an immediate trip to the emergency room was required, she waked us to the car and quickly prayed for us as Auntie Karabelo settled into the backseat with J in her arms. I jumped behind the wheel and began the longest trip to the hospital in all my days. The car was quiet at both of J’s Aunties hung on each of his nasally breaths. I prayed and tried to concentrate on driving speedily but working hard to not cross over into the realm of unsafe driving. It is a desperate kind of regret that grips your heart as you speed by much closer private hospitals as you rush towards the best option you have to offer your baby. After a terse 40-ish minute drive I dropped off Karabelo and J at the entrance to casualties and proceed to park the car. Thanking our good God the entire way; for traveling mercies and that J had made it to the hospital without having another apnea on the way.

Getting a baby admitted into a public hospital is a dicey and difficult process to navigate and even as I approached casualties I began to pray for mercy and favor that our little man would actually be admitted to receive the care he needed. Once you open a file you then are instructed to either wait in a room or in the general waiting area until you can be seen by the team of students and doctors assigned to your child’s case. Sisters will come and go but for the most part you sit alone with your sick baby waiting to be seen. When J first arrived his vitals all registered within a normal range, so they let him lie under a warmer but did not attach him to any oxygen or a SATS machine to monitor his vitals. Needless to say I spent my watching him intently and praying that the Lord would allow the doctors to see what they needed to see. After 2 hours or so the student doctor finally arrived to get J’s story and to fill in the details of his file. As I am sharing his medical history and describing the events of the day I look over to see him not breathing and turning grey. “Just like this” I say and the as the doctor goes to rouse him J pulls in a breath and begins to breathe normally. She quickly grabs the oxygen tube from the wall, attaches a new nasal cannula to the tube and puts our little man on the much appreciated oxygen to help him breathe easier. She then confirmed what I knew: that our J needed to be admitted to the hospital immediately. We heard later that week that another baby home in the area had brought in an infant to that very same hospital a few days before we brought J in. He had had breathing problems at home but by the time he got to the hospital his vitals were normal. They sent him home with the diagnosis of a chest infection and a prescription for antibiotics. Tragically that little man died at the home just two days later. I praise the Lord that He allowed J to have one last apnea in front of the right person so that we could be admitted. In all the time at the hospital in the coming days J never had another apnea! But we spent two long weeks getting to bottom of and recovering from his breathing trauma we encountered that day.

I don’t think that words can adequately describe the experience of having your baby admitted to a ward of any hospital, let alone a public one; it is a mother’s perfectly designed torture. At least that is how I feel. Saying that, I logically know how blessed we are to even have legitimate hospital in our area to take our babies to. I know that millions of mothers and babies don’t even have access to a clinic, let alone a hospital where we received CT and Milk Scans, visited a Cardiac Clinic, received a Cranial Sonar and had numerous blood tests and results taken. All that being said our time on the ward was torture: heart breaking, demoralizing, physically and emotionally demanding, monotonous torture...

Part Three coming soon! Thanks for checking in! Lots of love!

Tiny but Mighty -- Part One

Hello from South Africa! I wanted to say hello and update you on one of the best and all consuming parts of my 2017 thus far. It is a long and special story so it will be coming to you in four parts! This story begins in the beginning of January and you will soon know one of the reasons why this is my very first blog of 2017. Without further ado... 

Ever since my journey began in South Africa I have hoped and prayed to be able to care for a baby with Down Syndrome. Don’t ask me why, I won’t be able to give you a concrete answer. Maybe it is the random photography blog I have followed for years, a precious woman who has a little girl with Down’s. Maybe it roots back to the week I spent with a cabin full of fantastic boys with special needs one summer at Camp Barnabas. We had a tall, handsome, funny, typical-to-cool-for-school 16-year-old with Down’s who had me in stitches every day. The most likely conclusion is that long before I met Baby J, God had put him in my heart. A cloudy, hopeful foreshadowing of lessons, love and joy just on the horizon.

There have been a few babies with Down’s that have been in our network and we were a placement considered for a little girl with Down’s a year or two ago but it never sorted out in our favor. More often than not, when a baby is ready for placement, the Social Worker in charge of the baby’s case will contact our adoption agency and then the adoption agency will contact us to fetch the baby when it is ready for discharge. So it was a change of pace when I got a call from the head Social Worker at local hospital. We had met a handful of times and we, both being believers, had struck up a friendship but this was the first time she’d ever contacted me about a case… well, two cases in fact. Long story short, she had two babies that she wanted to come to our house. I spoke to our Social Workers at Abba and there as quite a bit of back and forth about which baby I would take, when I would get them and until the Tuesday they were ready for discharge I didn’t know if we were bringing home one or two babies. Cindy, our other House Mother, and I had the privilege of starting the day dropping off two precious people with their Forever Families then we made our way to the hospital to pick up our two new littles. When we got there, the social worker was busy coping the babies’ files; first a little baby girl C and then J’s. She left to copy J’s file but then suddenly returned, her face ashen. She began to point to a line on his discharge summary and was busy exclaiming, “I didn’t know! I really didn’t know!” I drew my eyes to the line she was pointing to and it read “Patient exhibits definite markers of Down Syndrome. Genetic testing was preformed and Trisomy 21 has been confirmed.” Thankfully this lovely lady knows me because what I did next was not only completely unprofessional, it was a little bit embarrassing: I put my fist in the air and yelled “Yes! I’ve always wanted a baby with Down’s!” I am pretty sure she thought I was joking until Cindy and I confirmed my desire twice over. Then she began to cry because she thought I would be unwilling to take him once I learned of his disability.

After filing out some paperwork Cindy and I made our way to the Preemie Ward where both our new babies were waiting for us. We entered the toasty room lined with sterile and cold bassinets and began to look for signs indicating which ones were “ours”.  We met C first, a healthy and chunky little princess with the thickets brown curls you have ever seen. Cindy began to dress her and I stepped to the side looking for our J. My first clue as to J’s size should have been when we first arrived on the ward. When the staff was told that we were there to pick up the abandoned babies on the ward, the sister exclaimed, “Even the small one?!” Small didn’t even cover it… J was 7 weeks old and minute! He was found just after birth at 1,1kg and had been slowly growing in hospital for the last 7 weeks and still only weighed 1,7kg when we brought him home. I could barely hold in my excitement as the Sister finally rolled his bassinet towards me and I was able to lay eyes on him for the very first time. My heart exploded, broke, melted and beamed with joy all within a fraction of second. I couldn’t wait to get him into my arms. I slowly began to unwrap him and dress him in the HUGE clothes we brought for him. We had brought a 0 – 3 month yellow snuggly and white vest that he practically swam in. I wrapped him securely in a swaddling blanket and covered him with another and just brought his face close to mine so I could breathe him in. I couldn’t wait to get him home and get to hold him close to my heart! We said goodbye to the nursing staff on the ward, popped by the social worker’s office to show off the treasures we were able to take home. We had to make a stop at the courthouse to have both J and C legally placed into my custody and then we started home. 

We finally made it home to show off the beautiful babies to the rest of the Aunties and officially admit them into our home (think tons of paperwork and pictures). We prayed together as a team, welcoming these precious littles into our home; asking for blessing, provision and the Forever Families to come. I marveled over the tininess of J as I bathed him, measured and weighed him, taking note of the 7 weeks and the marks they left on his little body. I had heard many times how babies with Down Syndrome have low toned muscles and so I imagined a floppy, lazy baby who was a little lump that had to be motivated to move. Silly Auntie! J couldn’t stop moving! He stretched his arms and legs out as wide as can be… splits and back bends and he even was rolling over! From the very beginning he was a squirrely little man; busy and squirmy in a way that required both hands! He was alert and sweet and didn’t cry once in the first week we had him! No joke! He would grunt and snort and sometimes let out a short yell if he was really bothered but never cried. When he was hungry he made these little snorting sounds that sounded exactly like a baby duckling. Every new sound, every new move, every new expression I feel harder and faster into deep, deep love with our new darling.

From time to time in the chaos of living and loving all these little people somehow a song gets attached to a baby. I was listening to the musical “Waitress” when baby girl A arrived, so naturally “Everything Changes” became her song. Baby boy G chose his song, when he was just 2 weeks old we were hanging in my office and I clicked on the first “kid” song I have in my iTunes and Alison Krauss’ version of “Baby Mine” from Dumbo began to play. I kid you not, G started “singing” along and suddenly that was his song. When I was weathering one of our difficult first weeks with J one song kept coming to mind: Stevie Wonder’s “You Are the Sunshine of My Life”. I finally had to download it just so I could pacify the musical earworm crawling around my cranium. The first verse sings, “I feel like this is the beginning/Though I've loved you for a million years” and when I heard it I knew that it was going to be J’s song.

J and I spent our first days together to skin-to-skin doing “kangaroo care” to help him grow, stay warm, regulate his heartrate and to let me keep a very close eye on his breathing. Like most premature babies, J had a difficult time regulating his breathing. Preemies are notorious for forgetting to breathe! A fright, a sneeze, too hot, too cold, a burp – any of these small inconveniences can cause a preemie to stop breathing. J was just the same and I had a habit of starting to count whenever he had a lag in breathing and typically by the time I got to “five” he would have a sharp intake of breath and go on like nothing major had occurred. Holding him close and wearing him in the sling allowed me to monitor his breathing 24 hours a day. Due to our “kangaroo care” J spent a good amount of his first days with us attending important meetings, joining me to the shops, taking his friends in the house to visit our OTs and even dropped off a few friends at the airport. The first nine days were a dream; a bleary-eyed, blissful dream and then day 10 arrived and my world turned upside down....

I will try and get the next part up in the next week or so! Love you all! Until next time!