Sunday, August 11, 2013

TRUSTING MY INSTINCTS



I'm a bit nervous to share this but I've had a few questions about my bio. Particularly the children's illnesses. So I thought I'd write a couple of pieces about what it was like for me at that time. This is the first one about my first child.

I had my son when I was twenty-five. Like most mothers I prepared for the birth of my child as best I could. I read the books and set up my nursery. I lovingly handpainted an alphabet, V is for Vegemite, to go above his cot. It's a good thing to prepare but I guess, sometimes, all the reading in the world can't prepare you for some of the things that get thrown at you.

The birth was long but it was my first child, it was expected and it was unextraordinary, in medical terms. My son was a whopping 9 pounds or 4 kilos at birth. He came out looking like a two month old, with a shock of red hair and big blue eyes. We didn't realize at the time how very essential it was that he was so big. We were just happy he was healthy and extremely confused about his hair colour.

Given the hair and the pale-as-a-cloud skin, we gave him a good Scottish name and set about learning to be parents.

Breast-feeding was a real struggle. For me, it didn't come naturally, it certainly wasn't easy and I had midwives, doctors and relatives all telling me how to do it and do it differently. I cried through every feed and my nipples looked like something out of a horror story. I felt unsure of myself, like I was failing my baby. No matter what I did, how much he fed and how much milk I produced he gained very little weight in the first couple of weeks.

When my husband went back to work when our son was two weeks old I thought I'd be ok. I'd just soldier through, feed him in a quiet chair and it would be peaceful and dreamy. It could only improve. But I still cried at every feed and I would count the hours to when my husband would be home.

There are so many stresses that come with first time motherhood. You doubt everything you do. you worry if they're not sleeping enough or too much, are they gaining weight, have they pooed and wee-ed enough in the last 24 hours, are they vomiting too much milk? But you're not sure. And at twenty-five, with no other mothers to talk to I doubted my instincts. The instincts that were telling me my son was shrinking before my eyes and there was something wrong.

So I did the sensible thing and sought the help of health professionals. I first went to a CYH nurse. She weighed him, shook her head and asked me some questions about how I fed him. She asked me to show her which I shyly obliged only to have her embarrassingly grab my breast and roughly shove it in the baby's mouth. Apparently I wasn't latching successfully.

"He vomits alot" I said. I didn't know if this was normal, it didn't feel normal.
But all she said was "Try feeding him less but more often."
I nodded feeling like this was hopeless. That he was losing weight because of me. I tried what she suggested but all that happened was he vomited smaller amounts more often.

At three weeks, our baby was sleeping in a cot at the end of the bed. In the middle of the night, both my husband and I were splashed in the face with milk as our son had projectile vomited a good six feet from where he lay. We cleaned it up and put him back to bed. In the morning his sheets were soaked and a black liquid was dried up on the sheet around his face.

I scooped up the sheet, the baby and took him straight to the doctor.

I'm not a panicky person but this scared me, it looked like dried blood or bile. How could his stomach be so empty that he would throw up bile?

My son now looked thinner but not as small as some babies but he started higher up on the scale. The doctor waved off the bile soaked sheet, the 500gm weight loss and told me he was 'just a chucky baby' and 'not to worry.'

I nodded and left with tears in my eyes. I was exasperated, exhausted. My baby always seemed starving, he cried so much and everyone was telling me to just put up with it. I wasn't sure I could and that frightened me even more. Where do you go when the professionals are telling you to just get over it? I shudder now at what might have happened if I had listened to them. My heart does this horrible, sharp stabbing thing and then it stops all together. Because I know what would have happened. My son would be dead.

At four weeks old my son started vomiting constantly. I'd feed him and he would bring pure milk straight back up. His skin was yellowish, he had spots all over his face, his eyes were sunken and still I was told by another nurse that he was just a 'chucky baby' and to 'keep feeding him.' I did as I was told. I fed him. He damaged my nipples from the starved way of feeding he was doing. Our house became a mess of me hysterically crying because I couldn't help him and him getting quiter and crying less because he simply didn't have the energy.

We tried feeding him and holding him bolt upright to keep it in. We dared not try and burp him because that was just asking for it to come back up. Nothing worked. My maternal instincts were screaming at me that something was very wrong but it was Mother's Day, the doctors and nurses had told me he was fine. So we did what we were supposed to do and fulfilled  our family obligations. All the while feeling like we'd been turned inside out. When people asked me how it was going, it was all I could do to even smile weakly. I wanted to say, 'everything sux! This is not all what I thought it would be.' And something kept pulsing in the background, a fear and strangling thought that maybe the doctors and nurses were wrong.

But I got through my first Mother's Day, crying in the car, feeding him only to be soaked in vomit 2 minutes later.

When we got home at 7pm, I changed out of my clothes which were damp and sticky from milk and sat on my bed. We laid our son on the covers and looked at him. His eyes were still bright but everything else looked so wrong that I thought I might be sick myself. I tried to count how many times he's vomited that day and I couldn't remember.

I grabbed the phone, seeking out one more professional for advice. I called the CYH hotline and told them straight up: My son hasn't stopped vomiting in two straight days, no he doesn't have a temp, yes he has lost weight. The operator took less than two seconds to respond to me.

"If you're really worried, listen to your instincts. Take him straight to hospital."

My breath left me. Because I knew what to do. I'd probably known what to do all along but I'd let others guide me because I was a first time mum. I was scared and unsure.

We grabbed a nappy bag and drove him straight to the Women's and Children's hospital that night.

*****

The doctor in emergency asked me three questions and pronounced, very surely, that my son had Pyloric Stenosis. When he told me my son was dehydrated and malnutritioned I felt like the words were swirling around my head like a tornado. They weighed him and he was only three kilos. He had lost a kilo off his birth weight. All that kept playing through my head was This is your fault, this is your fault.

The next 24 hours played out like a weird dream. They confirmed his diagnosis with an ultrasound that showed that the bottom of his stomach was completely closed over. No food had gotten through for at least two days. My son was literally starving to death. They needed to put an IV in his hand but because he was so dehydrated and tiny they couldn't find a vein. The doctor led me to a examination room and told me they would have to cut back his skin with a scalpel to access a vein. He told me I could leave because it would be very distressing to watch. I said: 'I'm not going anywhere.'

I watched them scratch away at his tiny hand. I didn't cry, I was too shocked. I felt like I needed to hold it in for now. Whatever was coming next could be worse. I had to wait before I let it all out. 

At midnight I walked rigidly to the ward. I was told he would need surgery. 

The next morning I was woken by a nurse with papers to sign. 

An anaethetist came after that. He sat me down and told me that because my son was very small and because he was dehydrated and malnutritioned there was a much higher liklihood that he would not survive the surgery. But he definitely wouldn't survive if he didn't have the surgery. I nodded, held my breath and signed the papers. I quietly excsued myself and left the room. 

Once I was alone in my parents single room I sat down on the sagging spring bed and cried. I cried until I had nothing left. I couldn't grasp how this had all happened so fast. I had only known my son for four weeks and now they were telling me that might be all I would get. It wasn't enough.


*****



My son had the surgery and he survived. The day after his surgery he had a massive haematoma that punched through every layer of stitches and had to return to surgery. The surgeon said it had never happened before in all the years he'd been doing this surgery. This was probably the least comforting thing he could have said. Again the anaethetist sat us down and told my husband and I that the risk was even higher this time but again, he would not survive without the surgery. We signed and followed our tiny son, lost in the giant hospital bed all the way up to the opertaing theatre. There we said another goodbye. I wasn't sure we could take it but of course we did. We had to. 

It was one of the very rare times my husband has ever cried. We stood in the hallway, arms loosely around each other and bawled not really caring who saw us. A doctor came up and asked us if we were ok. Sniffling and shuffling he led us back to the ward to wait. 

When our son returned, sticthed back up and still alive, relief didn't even cover it. He looked so tiny, tubes in his arm, monitors attached to his chest and a feeding tube in his nose. But when I looked him all I saw was a fighter. 

It was a fight to get his weight up. Feeding was still really hard for me but I'm so glad I stuck with it. He became strong and fat. By four months you would never have known that feeding had been a probem and that he had ever been sick but for the two inch scar running across his stomach. 

We battled through that first year, fighting together, sometimes fighting against each other but we got through it. And I learned that health professionals can be wrong and there is no substitute for a mother's instinct. It's there, even if we don't always listen to it, it knows us and it knows our children like they were with us from the very beginning. Always seek help but if you truly feel something is not right with your child, believe yourself.

* Pyloric stenosis is a common congenital condition that occurs in roughly 3-5 in 1000 babies.
It is most common in first born sons.
It presents as projectile vomiting, dehydration and weight loss from 2-4 weeks old.
The only way to correct the condition is with a pyloromyotomy.
http://en.wikipedia.org/wiki/Pyloric_stenosis

* Although misdiagnosed by three separate health professionals, once my son presented at the Women's and Children's hospital in Adelaide, he was swiftly diagnosed and exceptionally cared for by their doctors and nurses. I am eternally grateful for their quick action which saved my son's life.
http://www.wch.sa.gov.au/