Full Circle

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It’s been a tough two weeks so as I sit here in a house full of sleeping boys, including the Dad, I am kept company with a local radio station and a big glass of white wine. I feel somewhat….relaxed. I should plop myself on the couch and watch some mindless TV but this is a post I have been meaning to write all week and I feel it’s an important one for me.

As a newbie blogger, and a late starter, I haven’t yet covered all the history and the new developments have come faster than I could share this history in the past two weeks

Hope and Faith are two terms used loosely amongst the general public but they mean something totally different to a parent of a child with health and/or neurological issues. Both Hope and Faith are incredibly heavy words for me.

The Champ had been discharged from NICU at 3 weeks old to the day, which just so happened to have been his due date. A week later he had his follow up appointments with the neonatologist and the neurologist. Then he had his six week check-up with the paed, Dr Doo, and the neurologist. All of these appointments were uneventful. We were advised to return to see the neurologist when he was three months old. The little guy was so happy and devastatingly handsome. When we returned we were feeling positive.

The neuro had told us that in the instance of neo-natal meningitis, he would likely see us until the Champ turned 6 but we had somehow convinced ourselves, I suppose we had hope, that we were going to be able to stop the Epilim because he was fine. He was over it, the meningitis was gone right?

The neuro was pretty impressed with him although he did remark that he was still a little small. He checked that I was still breastfeeding which I continued to do so until he was 14 months old. We went over all the usual questions, I told him how I had been doing infant massage and how he loved it but that I thought he may have a little reflux as he didn’t like to lie flat on his back. He asked me to put him on the bed to be examined and I was almost excited as this was his moment to shine. The doctor proceeded to check his reflexes and then grabbed the Champ’s now favourite play-thing, the Babinsky hammer. The Champ reached out to grab it with his right hand.

Then all of my Hope and Faith fell to pieces The air around me became thick, the entire world went still and the remainder of the air in my chest seemed to be sucked out as though I was in a vacuum. He wasn’t even attempting to reach for the hammer with his left hand, he only scratched the bed next to him. How had I not noticed? Or had I? Had he not been picking his change mat when I did his massage?

After a few more tests we were told to begin physio and/or occupational therapy as he was presenting with ‘left-sided weakness’. I walked out of that appointment feeling as though I had been kicked in my stomach. We began neurodevelopmental physiotherapy the following week. Our physiotherapist is amazing, very down-to-earth but tough. We began visiting her weekly and she worked our little guy hard but he was, and still is incredibly tolerant and most importantly, he is very responsive to therapy. However, at one appointment, at 5 months old, he wasn’t tolerating any of the exercises which required him to lie flat. I remarked that he had a bit of reflux and that was likely the cause. She eventually asked us to please visit the paediatrician as she didn’t believe this was reflux but that he was in fact having mini/silent seizures.

We saw Dr Doo the very next day and he agreed that these were in fact seizures so he increased the Epilim dose. I was okay with this, I mean we knew he had epilepsy. But Dr Doo voiced concern about how “quiet” the Champ was, he asked a series of questions and I admitted that I was a little concerned that he wasn’t babbling. He also frowned a lot which we had found very cute but we learned this was usually a sign of them trying to concentrate intensely on you when you speak. Dr Doo then ordered an ABR (auditory brainstem response) test which measures the brain’s response to sound. We knew his cochlear was fine, this had been tested regularly as meningitis can cause the cochlear to calcify up to a year later. There are cochlear implants for this but what were we going to do if his BRAIN wasn’t receiving the signal? What if he couldn’t process the sound?

We had to wait over a month for the ABR and we were also due a follow-up MRI (there were radial lines on his previous scan which the radiologist couldn’t identify) so in the interim we were appointed a parent advisor by a local charity supporting families of deaf children. We were learning sign language, we were researching schools for the deaf…Cue the darkest days of my life! I have never felt as hopeless, so powerless and so afraid as I did when I thought my child was deaf.

In short, what had happened was, or so they think…the Champ had been having maybe hundreds of silent seizures a day and his brain was “fried”. The audiologist described it as pouring a whole heap of flour into a sieve. There is so much going on in there that sound is unable to be processed correctly if at all. the Champ passed his ABR with flying colours and even though he was sedated, he jumped when the first tone was emitted. Over the next few weeks he began to start the way a newborn baby would every time someone closed a door.

It’s exactly a year since we did the ABR and although a lot has happened…we have been given the diagnosis which we jokingly refer as “The G80” – Spastic Quadriplegic Cerebral Palsy. We call it “The G80” because that’s the diagnostic or ICD10 code but it also sounds like the type of weapon a superhero might use 🙂 We collectively had 14 hospital admissions, not counting emergency room visits, in under 12 months for everything ranging from RSV pneumonia, continuous EEG monitoring, emergency appendectomies, perforated eardrums and 3 bilateral grommet operations between two children and of course one vasectomy. But, the last few months, we had begun to settle into our “new normal” when we found ourselves back where we started. How had we come full circle?

Things like Faith and Hope are replaced with Cautious Optimism. Do I have high hopes for my child’s future? Of course I do. Do I hope he will lead a ‘normal’ life? Well, what is normal (besides my new most hated word)? But I hope (and pray) that life will not be a constant struggle for him, that he will not be judged by the way he walks, the way he talks. I have hope that both my children have “easy” lives. But hope in the romantic, the almost biblical sense is something that is too hard for me to cling to because there is this massive elephant in the room named Reality.

And as for Faith, faith is my default setting. It’s not a decision I make every day, I do not wake up and remind myself to have faith in my child or in G-d. Faith is something born into moms like me, your responsibility as a parent…but faith is also the belief we have for the future we can’t imagine any other way. We cannot imagine our children as anything other than whole, healthy, happy and perfect so that is what we cling to even when that elephant is breathing down your neck.

The Champ has mild CP, you wouldn’t notice unless it was pointed out to you. However, it is certainly becoming more apparent the older he gets. He was recently referred to a speech therapist which was a relief for me as I had been a little concerned about his speech. My husband was on leave from work so we booked his physio appointment and his speech and language assessment for the same week. The physio indicated that he is at a risk of scoliosis due to his weakness in his trunk which is now causing his shoulder to droop. Scoliosis; another one of those words you hear but never imagine might apply to your life.

I wasn’t too worried about the Speech and Language. I thought we were going to be firmly instructed to talk, read and sing more. Maybe we had just been so focused on his physical development that we had neglected talking to him? Maybe it had to do with the fact that he is a second child and hasn’t had the same one-on-one attention his brother had? I never expected to hear what I heard.

We were told what we already knew, that he understood us well, in fact she gauged his receptive language ability at the level of a 12 to 15 month old which is better than we expected since we were told to expect up to a 6 month delay due to his “deafness”. But, we were not prepared to be told that although this was not something the therapist would ordinarily recommend, we would need to start teaching him sign language. He has been diagnosed with an expressive language disorder. His oral motor skills are fine in terms of his muscle tone and his feeding is good, he can suck through a straw. It would appear that he has trouble with oral motor planning, a neurological issue. He requires a supportive method of communication for now. So here we are, back where we were a year ago, learning sign language, ordering flash cards and sign dictionaries, providing all of our family with basic signs and information and once again I feel we’re being expected to adjust to another new normal.

So here we are; we have come Full Circle….

8 Days

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The Champ had been admitted to the general children’s ward for his four days of Rocephin (antibiotic) shot. He was exactly a week old. I was a little relieved I must admit, and I felt quite a bit more relaxed than I had done. As I have mentioned, he slept through from birth, obviously that was a bad sign, but our first night in hospital, he was restless. When he was awake, I attempted to breastfeed him and he would lash and then thrash his head but I persevered, recording the time of each attempt, which side I fed from and for how long he fed. At first light, I had put him in the bassinette next to me and he began to “niggle”. I was exhausted, I was frustrated. He hadn’t really cried, just complained. I figured, in my sleep deprived state that maybe I had been doing something wrong. Perhaps he had not had a chance to get hungry enough to have a decent feed, perhaps my milk had dried a bit and my breasts hadn’t had a chance to replenish their supply and that’s why he thrashed. It did somehow remind me of Jojo’s growth spurts. I lay in my makeshift bed, a steel cot with its side down, thin leather mattress covered in a waterproof linen-saver and the type of sheets you only get in a hospital. My sheets kept slipping and the cot was just a little too short, even for my small frame. I looked at him in his clear plastic bassinette and said outload, “you can actually just cry, I’m not feeding you until you cry!” I continued to lie there staring at the pile of blankets he was under wriggle. Then, the movements didn’t quite seem natural and I instantly felt bad, was he shivering? He must be cold. Instantly, I lifted him out of his bed and placed him where he belonged, on my chest. He seemed to be chewing his sleeve, I thought that was odd, and upon checking I found he wasn’t, in fact he was just twisting his little wrist. Oh well, nothing to worry about right?

He settled somewhat, or I fell asleep, I can’t remember.

Dr Doo (our magical paediatrician) arrived on his morning rounds and came in for a chat. The little guy was still tucked under my chin. I was feeling positive and we joked how he was up all night getting boob and charming the nurses. I peeled him off my chest as we spoke and as Dr Doo looked him over, his little eyes flickered from side to side. Nothing major, he had been doing it a while, but babies do weird things right? But as it happened, I said, “Oh and he keeps doing this thing with his eyes.” Dr Doo is a small round man, soft spoken and reminds me of an Enid Blyton character. He said to me, in what I can only describe as being a calm but hurried voice, “He is having a little convulsion.” I had absolutely no idea what had just hit me, but it felt much like a brick wall, all the air was sucked out of my lungs and my blood ran ice cold as Dr Doo and a couple of nurses took my baby out of my arms and into a treatment room down the hall. In hindsight I should have gone with them, and since then there has not been a moment I have not been there at my child’s side. But I was stunned, I just sat there, still.

I heard my baby scream from where I sat, unable to move. Eventually, I stood in the doorway, not even knowing which room they had taken him into but I could hear him cry. What was the correct protocol here? Was I supposed to leave him? Was I supposed to go there? Did I want to know, did I want to see what they were doing? All I could do was pick up my phone and call his daddy. I cried hysterically as I told him was that The Champ was having convulsions and they had taken him away from me and he was screaming, he had better get there fast. We live only 3km from the hospital so before I knew it The Champ was in my arms and his dad was there. He had just had a lumbar puncture and a few blood tests. My tiny, fragile little boy had had a needle stuck into his spine. The events which followed are a blur, I remember my mom arriving in the coffee shop in the hospital lobby while my husband went down to talk to her and I remember Dr Doo arranging for a bed at another hospital, the hospital he had been born in. Everyone was calm considering and this is where I began to discover how unnervingly cool headed I become in crisis situations.

Dr Doo had informed us that there was a bed open for us at the next hospital, that The Champ needed to be in a “higher care facility” – he has a way of making everything seem ok. He never told me my child needed to be in an isolated NICU/PICU, he also never told me that we didn’t have time to wait for an ambulance, that he couldn’t be left without a medical professional nearby. He told me that he was going that way anyway and he would happily give us a ride and my husband could meet us there. As I followed him down to his car my only concern was whether he needed his safety seat and I told my little baby boy, whose brother is car-crazy, that he would in fact be having[ his very first ride in a 4×4 and he was awfully lucky. I was totally separated from the fact that this was serious and Dr Doo must have thought I was insane as I made idle chat with him on the drive to the hospital.

My parents and husband met us there, my parents seated outside the door and the world closed in on me the moment I handed my child over to an NICU nurse. As they prepared to undress him for his incubator I felt fear strike through my heart like a boiling hot rod when I heard my husband say to her, “Just cut his clothes off, we don’t care, you are wasting time.” He had clearly had a very different drive to the hospital, what I would later recognize as a totally different perspective, a whole other experience to what I had.

Within moments, my child lay naked, besides his over-sized nappy, in a clear plastic box, hooked up to machinery with what seemed like hundreds of little wires attached to him. And then I saw what I hadn’t noticed before, or what I hadn’t identified…my tiny little baby was having seizure after seizure and he wasn’t even awake. The movements were slow, rhythmic and exaggerated, not anything like what you see in an adult. He had been experiencing this for at least 24 hours and I hadn’t thought anything of it. My brain accessed information I had gathered during my lifetime regarding seizures, information I hadn’t known was there and I asked the nurse if she was timing them or if I should be. She responded by telling me that there was no need to count or time the events, it was irrelevant, we needed to focus on his stats. He was eventually moved into the isolation ward after the ultrasound machine had been wheeled in an used to check for bleeds (there were none) , he was 8 days old and this was the start of 8 days of the continuous, back-to-back seizures my baby endured, 8 days he never woke up, 8 days I hardly held him, 8 days I stood there watching him, totally helpless. We received the LP results via text message after I had messaged Dr Doo. I know that seems harsh but I had sent him a message pleading for an answer. I received the response, one word, as I sat with my mom while my husband was with him. It read, “Meningitis.” I knew nothing about meningitis other than if I was ever sick as I child I had to bend my neck for the doctor. But I knew it was bad when my mom let out a little yelp before beginning to sob.

When Dr Doo arrived and I was just standing there. He told me it was very important that I go and express some milk, that my “little soul” as he calls him, would need the milk. I didn’t hesitate and was quickly directed to a couch behind a curtain with a hospital grade electric breast pump. Finally, I could do something useful, even if it was only 25mls. Who knew that expressing in that horrible little booth would become my “me time”, my time away from him, my 30 minute break from this hell. 

He was moved the same day into a dark room within a room, full security access and a whole series of disinfectants…one before entering, one after entering and again before entering his room and then lastly once we were in. Time had been standing still, us caught in some kind of cruel twilight zone, we were standing there alongside the incubator when my husband told me I was actually beginning to smell and I best go home for a bath and to pack a bag. Did I know I was beginning to smell? Probably. Did I care? Not one bit. How could I walk away from my child now? But after much protesting, I went home for the most incredibly quiet and strange bath. And thus began my life of living between home and a hospital.

A Mother Knows

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You never love one child more than the other but it’s untrue that you love your children the same. From the moment my older son, Jojo, was born until today, I am in awe of him. The photos of us in the hospital following his birth show me holding him in front of me; examining him, his fingers, his toes, his little wrinkly thighs. Even now, I am absolutely dumbfounded that he is part me.

The Champ is different. The moment he was handed to me following his birth, instead of studying him, I just pulled him close and held him, I held him so tight, so close that at times I felt I may absorb him. The four days spent in the maternity ward following Jojo’s birth were spent staring, touching and talking about him. The four days spent with the Champ, he barely left my chest, he and I just lay there, together, as one. This is something that has not changed. Our bond is physical, it is spiritual.

Jojo and I have an intellectual and emotional bond, we have always had a lot of chatter between us, even as a 7 week old, he was always vocal…I would talk, he would coo. He is emotional, sensitive and highly intelligent…his mind a treasure trove which I have spent his life attempting to rummage through for new discoveries. He is the kind of child that at 3 will recall his own birth in detail he had no way of knowing. He was text book, he breastfed without a hassle, he grew quickly and well and he never had a problem letting us know if he was hungry or tired. He was an easy to read baby.

The Champ was a different story…

He was born at 18:40, breastfed easily at 20:00 and then did what new born babies are NOT supposed to do, he slept through the night. Standard practice following a C-section states that on the first night following a C-section, babies room in the nursery but I had insisted he room with me. I guess mom’s are still drugged up and cannot be counted on to wake for their babies. It was about 1am, 5 hours after my slightly pre-term, less than 3kg baby had fed, when I called the nurse. My baby hadn’t fed. Was I so awful to have insisted he room with me, had I missed his cries for sustenance? The nurse was calm, she explained how some ceasar babies and especially the smaller ones, needed to be encouraged to feed and with a ‘never fear’ tone, she attempted to demonstrate how removing clothes and tickling him under the feet would irritate him enough. The Champ never woke up. She said to give him another hour but he never fed until about 5am. That was over 8 hours.

He fed okay the following day, mostly we just snuggled and slept together, we entered a space that has, in the course of his life, become just for us, our own alternate universe, my sanctuary. He never complained, he wasn’t desperate for milk but he would take it, he never struggled with wind. That night, he bunked with me again, he shared my bed, against the wishes of the nurses but I firmly reminded them that he was MY baby before settling in for the night. My heart skipped two beats when I felt the morning sun stream through the curtains and I realized he had not fed in the night. When the paediatrician came around that day I asked him “Is something wrong, or is he just easy?” He never seemed worried, I trusted him, he had been at Jojo’s delivery and of course, he was THE best. Even so, that night, I began syringe-feeding him formula in an attempt to top him up, something told me he wasn’t getting enough. I had done the same for Jojo and he was fine, I had managed to successfully breastfeed him for 4.5 months so wasn’t worried about that.

I took him home on the Wednesday, arriving home to a nursery filled with gift bags that were yet to be unpacked following my botched baby shower. He arrived 3 weeks earlier than his planned C-section date and I never had anything small enough to fit him. We took him to a little mall, close to home, bought a few “tiny baby” sets, shared a slice of cake and headed home. He was so good, so easy, so quiet.

Then it all began. Jojo wasn’t feeling well, and neither was my husband (still thinking up a suitable pseudonym). My mom had called to say she wasn’t going to come and see us as she also wasn’t feeling too great. When I quarantined The Champ and myself, banished my husband to Jojo’s room, my grandmother came around to help me with the new baby.

It was the middle of winter and my gran remarked on how blue the Champ’s hands were and insisted we put some mittens on him, the ones we had were too big. She was right, I hadn’t noticed. The Friday night he had begun to refuse the breast almost completely so we ended up in a late-night pharmacy with a newborn baby asking for formula for him and a painkiller containing codeine for my husband who has been diagnosed with tracheitis. I remember remarking how bad we must’ve looked buying drugs and formula, as though we were going to get high with a newborn baby in tow,

That night I syringe fed him and I could feel my milk coming in, I was in agony. We had a family meeting and decided it must’ve been the cauliflower I had eaten that had turned him off my milk. He wasn’t fussy, he just didn’t want breast. We were going to do the formula for the night and try again the next day. He slept through the night but by the morning was inconsolable. I was in the bath attempting to hot press and manually express breasts which had become square they were so engorged while my grandmother and a friend were attempting to warm a bottle of expressed milk in a jug of hot water…collectively we all had forgotten how this was done. Things were becoming tense as my husband sat curled up on the couch shivering with a fever, the sickest I have ever seen him. This was nightmarish, but we persevered.

Early that evening, Jojo was in bed, my husband asleep on a mattress next to him, my grandmother urged me to call the paediatrician. I told her I didn’t want to worry him on a Saturday but she reasoned, rather at 7pm than in the middle of the night. So I called him. He told me to take him to the emergency room and he would assist the doctor on call telephonically, as neonates were not so easy to diagnose, their stats were different. I woke my husband, telling him we had to talk about The Champ. He sensed something was wrong and got up immediately. I told him we were taking him to the hospital and my gran would stay with Jojo. It couldn’t have been 2 minutes before we were in the car and on our way. This was an exercise we would later dub Saturday Night Fever.   

The doctor on call was happy with him, he told us he wasn’t running a fever and didn’t appear to be jaundiced, he seemed responsive. I have since learnt that a sick baby will always act well when you take them to see a doctor. The paed who was on the line, asked us to return to the hospital the following morning when he was due to do his rounds so he could take a look himself. We were then sent home.

We were back at the hospital the following morning, early of course, so we sat in the coffee shop while we waited. The paed arrived, and we stood to follow him and he did what has forever earned our loyalty. He told us to sit down while he ordered himself a coffee. While the three of us sipped what would become all to familiar bitter hospital coffee from cardboard cups he looked me in the eye and asked me what was worrying me. I didn’t really have an answer for him, there was nothing I could put my finger on but he sat quietly, listening intently as I fumbled my words feeling a little neurotic. The longer he remained quiet, the more I began to piece it together (obviously a tried and tested technique of his). When I was finished he calmly told us to follow him to the triage room where he would just check him and as we walked he called the lab from his phone and asked them to meet him there with a kit. He checked out our little baby, chatted to us while he prepared to draw the first of many bloods. He said he wasn’t too worried but would call us at home as soon as he had the results.

My mom, my husband and my gran were sitting around when I got the call. The Champ’s white blood cell count was “rather high” and his jaundice levels were much higher than “one might expect by his appearance”. I was told by the paed, who I will now call Dr Doo, that babies get these infections sometimes and because he was little and not feeding it may be difficult to administer oral antibiotics so I would need to bring him in for four days of Rocephin shots. When I became emotional, Dr Doo was kind and reassuring. Although I was crying when I broke the news to my family, I was relieved that something was going to be done, that I wasn’t crazy, that my child was actually sick. When you have a child with any kind of health problem, you tend to have a mixed feeling when it comes to diagnosis, your heart breaks but you are grateful that someone other than you knows there is a problem and you can begin to work to solve it.

I discuss this, our first trip back to hospital, in another post  https://sheetsoflightning.wordpress.com/saturday-night-fever/ 

P.S. I am a novice blogger, please excuse my lack of know-how when it comes to linking my various posts and other technical points…

Tainted Birth

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Many of my what-should-be-special moments since conceiving the Champ have been somewhat tainted:

After spending a night in the labour ward, after my husband and I heard upwards of three babies being born before the pethadine and sleeping pill took its effect…I experienced what I am sure very few soon-to-be moms experience, I went home, baby still tucked inside. To be truthful, I do not remember being collected, I don’t remember leaving and I don’t remember arriving home. You can read about our night in the labour ward here: https://sheetsoflightning.wordpress.com/saturday-night-fever/

My baby shower had been scheduled for that day, a Sunday. Of course, given the circumstances, I had been informed of the arrangements. I got myself ready, put on a silky black blouse, did my hair but I didn’t feel right. I didn’t want to socialize and I certainly didn’t want to be the centre of attention.

Mildly put, it was a horrible occasion.

I was still groggy from a combination of drugs, sleep deprivation and disappointment. I began having contractions again while I went through the motions of opening gifts and feigning interest and delight. We had moved into the same street as my parents so some of my guests naturally wanted to see the nursery.

A few of us carried some gifts up the road and left them in the nursery. Upon returning to my parents’ house, to the remaining guests, husband and toddler now in tow, without hesitation of discussion, I announced we would be going to the hospital. I thanked everyone for coming, left my son with my mom with not so much as a clean shirt and we left. I did, however, remember to grab a chocolate pudding on the way out.

The drive to the hospital was awful, there was no buzzing of nerves and giddiness. I remember just thinking, I want this baby out now but I did have a very uneasy feeling. Nothing about this experience felt right. Anyway, after arguing with my husband about the chocolate pudding which he suggested I shouldn’t have in the event I may need an emergency C-section, I told him that after everything, I damn well DESERVED this chocolate pudding.

I arrived at the labour ward, all the same nurses were on duty as the previous night, I had arrived there just 24 hours earlier. With not a word, I was ushered to a different room and informed I would need an emergency C-section and the paperwork commenced. The air was frantic as hospital staff spoke over my head discussing how far the anaesthetist was and how long it might take the gynaecologist and the paediatrician to arrive, and who was going to assist. We were in a private hospital, private healthcare, although this meant you always had doctors you knew well at your side, you do at times need to wait for them to get to you. Just our luck there had been a marathon that day and although the race was over, no one was sure of which roads would be open and how soon the team could begin. And as this was all swirling around me, someone zoned in and asked, “When last did you eat?” As I hummed and hawed, my husband glared at me before telling them I had eaten a pudding in the car.

Not serious, I had to down a vile potion in little brown bottle to ensure I wouldn’t vomit. It was 6pm when we were told that everyone was ready for me. My anaethestist, a petite women wearing tight jeans and a leather jacket came and discussed the epidural with me before I was wheeled into theatre. She already in her scrubs to meet me when I arrived in the deserted theatre. Voices echoing, bouncing off the cold metallic surfaces, we chatted with her casually about her line of work and how her life was as an anaesthetist, I hear all about the structuring of shifts in the partnership, all the while being prepared, scrubbed down, catheter inserted and all the other gory bits. The gynae waltzed in, greeted me and began.

I had seen the gynae only a week prior and he had felt my belly and given me a weight estimate, so as he rummaged inside me to get a grip of my little boy, he asked me, “So how much did I tell you he would weigh?” I told him 2.6kg. As he lifted my second son up above the screen, I saw the longest legs in all my life and the doctor introduced him to me; words we will never forget…”This is one lean, mean machine.” That was a very special moment and one we have remembered, they knew he was tough the moment they delivered him.

The Champ was handed to the paediatrician, a man who was to become a very significant part of our lives, a man who has earned his own post, before he was wrapped and handed to us. The Champ had arrived. I was exhausted!