No, no, it can't be...

Mr N was a healthy baby and toddler. He rarely fell ill. When he was 4 years old, he underwent a gastroscopy and ph-study which showed he had GERD (reflux disease). Apart from that and his Gilbert's disease, his health was never an issue to us.

Mr N age 5

When he was 5 years old, we were playing outside one day. I was chasing him and his little sister around the garden. I touched him, and it was his turn to chase me. I didn't run very fast, hoping he'll “catch” me. So when I heard his footsteps behind me slowed down, I stopped and turned around.

He was standing there, with a strange expression on his face. He was almost smiling. A kind of confused smile. His eyes were “funny”. I just knew in an instant that something's happening. Something strange. Something neither him, nor me could understand. I walked up to him, asking him what's wrong twice. Both times he said “I'm tired”. In a small, constricted voice. He tried to walk to me, but seemed unsteady on his feet. He missed me with about a meter, he couldn't walk in a straight line. I took him at the shoulders, and he collapsed onto the ground. Still conscious, just weak. I cradled him in my arms and spoke to him. He said he's fine. I looked into his eyes and his pupils were contracting sharply.

Next moment, he stood up and said he's fine, we must continue playing. I was like WHAT?? What just happened? Did I imagine the whole thing?? I told him to come inside and sit on the couch. I fed him a chocolate and gave him cooldrink. Thinking that maybe it was his bloodsugar or something? At that moment, my friend called. My voice was unsteady, so she asked why, what happened? I told her and she urged me to go to the dr.

I thought why? What do I tell them? That he fell? That's pretty normal for a 5-year old! He really was just fine now. Nothing wrong! After our conversation, I went to sit on my bed, away from the 2 children. And then I cried. It was just such a huge fright I experienced. Hubby came home from work, and when he saw me in tears, he assured me it's probably nothing. But I told him I still wanna make sure, so I phoned the pead's office for an appointment the next day.

At the pead the next morning, she said it's one of 3 things. Either epilepsy, or a vein in his neck that has some obstruction, or a blood thickening disorder. I was scared about the epilepsy, but she told me out of the 3 things, I must hope it's that. I was actually surprised how urgent and serious the pead took the whole thing. I mean, here was my son, apparently all healthy again. And it's not like he lost consciousness!

So off we went to draw some blood. It was traumatic to say the least. They needed so much blood, they had to poke both arms with needles. He screamed and screamed. It was his dad who calmed him down in the end. This all was on Thursday.

The weekend passed slowly. We knew something's up with our son, but we didn't know what. It was scary and confusing. I watched over him like a hawk. But nothing happened again. On Monday early morning, we were pushed in for an EEG. The brain therapyst was sitting at the computer. Mr N was linked to numerous wires that was connected to the computer. I sat to the side, watching what I could see of the graphs on the computer. Half-way through I saw the therapyst's shoulders slumped. And I knew.

After the test he told us that there is definitely epileptic activity, and we'll have to see the pediatric neurologist. We went to the pead, and she phoned the neurologist. He told the pead to send Mr N for a brain MRI in the meantime.

An MRI? Of my son??? Really? For epilepsy? Then it hit me! They were looking for a cause. Like a brain tumor. I felt feint. The next 3 days were pure torture. To know your son will be screened for a brain tumor. It was terrible. Just terrible.

The MRI was scheduled for the Thursday, 3 days after the EEG. We prepared Mr N really well. Showed him pictures of the scanner on the internet, and played the sound it makes to him. They said they're going to try for him without aneasthesia first.

He was a trooper! Lied so still, he didn't even twitch a toe. We sat waiting for the results for over an hour. My dad came along to look after Boeboe, who was just 2 years old. Once we got the results, we took it to the pead. She told us that it was clean!!! No cause for the seizures.

Two weeks later we got a cancellation appointment with the pediatric neurologist. He diagnosed Mr N with Juvenile Myoclonic Epilepsy. He was thorough and said nothing else is wrong with our little boy. He's doing well on all the tests. He's just a tad on the underweight side. Well, that we knew...:-) He was put on lamitrigine for the epileptic seizures. The medication is dangerous when taken at once in a high doses. You need to slowly adjust to the optimal dossage, in increments of 12.5 or 25mg. Mr N had to get to 100mg.

The first weeks were very, very difficult. The medication caused side effects which was horrible in a 5-year old. It caused him to bruise easily. His legs soon looked terrible, full of brown and blue bruises. It also caused constipation, which was already a problem with Mr N. After a few weeks, he got a rash from it, but fortunately this dissapeared after a few days. The worst side effects though, were the emotional upheaval, and the daily, awful headaches. The medication turned our level-headed, easygoing child into a cry-baby. It was so difficult. When do you discipline him, because he's crying over nothing? And when do you “excuse” him, because it's the medication talking? He, who usually only cried about once a week, was suddenly crying multiple times a day. It was so so sad.

Fortunately, most of the side-effects (except a little bit of emotional upheavel, and the headaches) tapered off after a few months. Though with each increment of the medication it would first worsen before getting better again.

Mr N is now 9, and has been on the medication for 4 years. It's going well. When he was 8, his EEG was clean, so the medication was halved to 50mg. This year his EEG was clean again, and the meds has been halved again, down to 25mg. If it's clean again next year, it will be stopped completely. We're hopeful, but scared. Happy and relieved, but cautious.

Mr N's Pregnancy and Birth VI

After numerous courses of a/b's, I was give a D&C at 6 weeks after birth. It was difficult, going to hospital, feeding the baby before, and again afterwards, knowing that the aneasthesia is probably still in my blood. The D&C showed that some placenta was retained. I always wondered if it wasn't that “extra” lob that the placenta developed and then discarded when it wasn't needed anymore.

The D&C didn't help. The infection was in the uterus already. So when baby was 2 months old, I had to put him on formula for a week. Expressing with each feed as well, and then throw the milk away. Because I was put on extremely strong antibiotics, which would be harmful for baby's kidneys. It wasn't an easy week. We were camping with the in-laws, so it was quite difficult handling bottle feeding and expressing, and a 2-month old baby, while living in a tent!

But it worked...:-) For the first time in almost 3 months, I felt healthy again. I was so grateful. One time during the infection I had to see my gynae's associate (my gynae went on holiday) and this associate told me that if I were her patient, she would've done a hysterectomy already. I was schocked. Yes, I'm ill. Yes, I have a very bad infection. But isn't a hysterectomy the very last resort? What about my future fertility? The fact that I want more children? Fortunately, I was NOT her patient, and my gynae was prepared to fight for my future children.

Through this all, my baby was the cutest thing. He was just thriving, turning into a really fat and friendly baby. Nobody could believe that such a small person like me, could have such a huge, fat baby. He was so beautiful, so friendly. He laughed for every face he saw.

And he was a dream-baby. Never cried, except for a brief stint with colic. He slept through from his 2^nd month, and fed and slept so well during the day. It was such a wonderful experience, to be parent to this amazing little being. I decided to never go back to work, but stay at home with him. I never regretted my decision.

Mr N's Pregnancy and Birth V

I hated the feeling of the epidural, so when life started to come back early the next morning, I was ecstatic. Baby was brought to me every 3 hours to nurse. He was hungry, fed well and slept the rest of the time. He was perfect. Fat cheecks, fat little body. Dark curly hair and some stork bites on his face.

Because of the botched epidural, they kept a close eye on me on the Tuesday (2^nd day). I wasn't allowed to stand up, and when headaches started, I was given the blood patch on early Wednesday morning. They took 50ml of my own blood (directly from my arm), and inject it into my back while it was still body temperature. Again, I had the radiated pain down from the injection site to my hips. Afterwards I had to lie very still for 2 hours and couldn't feed my baby. They gave him formula without my consent. I was livid! But what was done was done, and at least he didn't have to go hungry.

After another few hours, I was allowed to stand up, but it was extremely painful. The wound has started to heal with me in the lying position, so moving tore the skin apart again. It was very, very sore. I hated every minute of having a c-section wound.

Unfortunately, the blood patch didn't work. I still got extreme headaches the moment I lifted my head. As long as I lied horisontally, I was fine. The moment I stood up, the CSF would leak and I'd get migraines. Lots of caffeine was prescribed. So hubby brought Redbulls, which helped somewhat. I was released from hospital on the Thursday, and walking from the hospital room to the car was pure torture. The pounding in my head was unbearable. At least my baby was healthy and happy and the sweetest thing alive.

The next few days went by in a haze. On the Saturday I realised that the headaches isn't only while I stood up anymore, but also while I laid down. I took my temperature and it was slightly raised, so off we went to the gynae. I was told I had an infection in the uterus and given a/b's. Back to bed I went, where I stayed until the Wednesday. Except for feeding, my hubby and mom took care of my baby. I was a nil on the contract. It was awful.

On Monday, 1 week after his birth, the nurse came to our house to draw some blood from him. He was extremely yellow and they suspected jaundice.

Plaster is where they drew the blood

The test showed he didn't need the UV lights, but for months and months afterwards he was yellow. So around age 3 months his liver function was tested. It showed he had the same disease that me and his dad has. Gilbert's disease. A non-fatal liver disease.

On Wednesday, 9 days after birth and exactly one week after the blood patch, I stood up the morning to take a bath as usual. Half-way through I realised I didn't have a pounding headach any more! It was gone! The CSF leak had at long last healed itself. Thank goodness. Unfortunately, I felt ill. Very ill. So back to the gynae we went. The infection was worse, the a/b's didn't help. That started a long road for me.

To be continued...

Mr N's Pregnancy and Birth IV

The last weeks of the pregnancy, suddenly, was uneventful. Around 37 weeks I started dialating from the light contractions I had. At 39 weeks I was 2cm dialated and amniotic fluid started leaking. So I was given an induction at 9am. We went to breakfast, me and hubby. And phoned everyone we knew, telling them that I'm having contractions 10 minutes apart, and that the doctor said one way or another, our baby will be here that evening.

Hubby dropped me at home, while he went to work to wrap things up. Around 12:00 I phoned him. Contractions were 5 minutes apart and I felt it time to go to hospital. I wasn't allowed a homebirth, since I'm extremely small built. I'm having what they call a “trial-birth”. To see if I can have a normal delivery, even though I'm probably not big enough. So medical help must be on hand to intervene the moment it is necessary.

Hubby was stuck in traffic! By 12:30 he picked me up and off to the hospital we went. The porter wanted to push me in a wheelchair and I started laughing. I told him it's really not that sore...:-) After having contractions for 20 weeks every day, I was quite comfortable with labour contractions. I found it normal and not painful at all. Irritating, yes, but sooooo exciting!

So up we went to the labour ward, where I sat and waited for things to happen. Contractions were coming every 2 minutes, each lasting 90 seconds and they peaked on their little monitoring machine. It was as strong as it could get. I was 5cm dialated, when they advised me to get an epidural. It would speed things along, they said, and then it's ready if we do end up with a c-section. I agreed, though I really didn't need it for the pain. There was no pain yet. Though, my back did ache with every contraction, since baby was lying upside down. Instead of his back against my tummy, he was trying to come out with his back against my back. It complicated matters. He also turned face upwards, instead of downwards, which means more space is necessary for him to come out. And, I already only had limited space!

I got the epidural at 15:30, and instantly regretted it. The anaesthetyst was old. I mean, like ancient! He pushed the needle in too deeply, and the pain was unbearable. I screamed and cried and screamed again. The pain flowed from the point of the needle downwards into my hips. It was pain like nothing I ever experienced. Every nerve screamed from it.

Then he had to repeat the procedure. And again, the same pain. That was the start of the downward cycle. I loathed the feeling of my dead legs. I loathed the drip, the little tube coming out of my back, the monitor that was kept on my stomach. Control was taken away from me.

3 Hours later, nothing has happened. No dialation past 5 cm and the gynae said I'll need a c-sect. Baby's head was stuck at 4/5ths of the way out. He wasn't in distress, but she wanted to take him out before he gets to that point. I knew it was a major possibility, so I agreed to the c-sect. Being the small person I am, I've grown up knowing that I may not be able to have my babies normally.

I was pushed to the theatre, where they topped the epidural up and performed the c-section. The gynae lifted a big, fat, wet baby up, who promptly wee-ed back into my open stomach. I thought it hilarious! He cried and squirmed lustily, and the gynae yelled...”it's a boy”! He weighed 3.7kg. A big boy. His apgars were great.

So they wrapped him and brought him to me. I held him a while, then they took him to an incubater. They said it's hospital policy, all c-sect babies needed to spend 6 hours after birth in an incubator (in those days). I was young, naïve and thought I had no say in the matter. So I accepted it.

Hubby went along with our baby, to get his first injection (vitamin K). I was stiched up and wheeled to recovery, and then to my room.

To be continued...

Mr N's Pregnancy and Birth III

So off to the new gynae I went. She was extremely nice, calm and thorough. She said the placenta implanted low over the cervix, and the one corner has started to tear loose. It is bleeding, and it's going to keep on bleeding because she can see the blood pooling inside the uterus. All that I could do, was to take it extremely quiet. No heavy lifting, no long distance driving, preferably bed-rest. I asked about work, and she urged me to come to a compromise with them. Which I did. It was difficult, after I already took off almost 2 months earlier in the year for the endo-pain I experienced. But, again my bosses were really accomodating and sweet to me. I would work from home 3 days a week.

When I was 16 weeks along, I started having light contractions. It was a UTI (bladder infection) causing the uterus to become irritated. Around 19 weeks, the infection (after some failed antibiotic treatments) moved into the kidneys and contractions started in all earnesty. I was given medication to stop the contractions every time it begins. It was stressful. I had to time all contractions and decide when to take the medication. In the meantime, I was put on stronger a/b's. It wasn't easy, taking so many courses of antibiotics while you're pregnant. The good news was that around the same time, the endo pain at long last dissapeared! Whoohoo! The gynae did tell me the pregnancy would take care of that...:-) Endo goes into “remiscion” when you're pregnant.

The doctor noticed an extremely rare and interesting thing. Because the placenta was torn loose at one side, the baby's needs were cut off. So the placenta went and developed an extra “lob” on the other end. To supply the extra needs to baby. Wow, how intelligent was this?

Around 26 weeks, the placenta started to move out of the way of the cervix. That was exceptionally good news. The extra lob that developed on the other end of the placenta, started to dissapear. The gynae said she thinks it's being reabsorbed now that it's not needed any more.

By week 30, I was getting extermely ill with the kidney infection, and contractions were becoming harder to control with the medication. I was admitted to hospital where I was given a/b's through IV. This, finally, worked! The infection was cleared up, the contractions stopped.

I resigned my job. After everything we went through, we realised this baby is worth more than anything. We want him to be raised at home, not in a creche. At least for a year. We had enough savings, that if we cut down on expenses, I could stay at home for at least the first year. Oh, and I say “him”...fact is, we didn't know what we were having. The gynae saw at 13 weeks, but we said we do not want to know. But from the start, when we heard we were pregnant, I told hubby that it's a boy. I was very, very sure of it. I even chose the nursery colours as blue and yellow. It's not that I wanted a boy so much (I really always wanted a girl!). It's just that I had dreams about the baby, and he was always a “he” in those dreams. And when playing and talking to him, it just felt “right”. While thinking of the baby as a girl, felt “wrong”.

To be continued...

Mr N's Pregnancy and Birth II

So, after a few negative pregnancy tests and still no period (about 40-50 days), my mom heard of a doctor that specialises in Endo (on the radio!). I went to see him, and he said he wants to operate (a laparoscopy!), but not before I had 3 cycles, so that all the hormones of the treatment is out of my system. So he did a sonar to make sure I'm not pregnant. He noticed something that he said looks like adenomyosis. Great, another weird word. Another weird diagnosis. Awesome. Just what I wanted to hear.

He gave me medication to bring a period on. It was hormones, and was known to cause terrible defects to a fetus, so that's why he needed to make sure I wasn't pregnant. I took the medication for 10 days, but still, nothing. It did cause what I thought was side effects (it was listed in the pamphlet!). I felt very nauseous, tired and ran to the bathroom often. Things I used to love, suddenly put me off. And smells! I never knew smells could be so acute. I also had this strange, metallic taste in my mouth.

So back to the gynie I went, but first, the doctor send me for a blood test to again make sure I'm not pregnant. We were waiting in the reception room when the nurse called me to do some pre-checks before the doctor sees me. We stood in the corridor, and she looked at the chart. Then blurted out “Oh, you're the one that's pregnant”! I was stunned. I took the chart from her, I had to see it black on white. And yes, there it was. Positive. Wow wow wow wow. And then it hit me....but what about the medication I took? What defects did it cause my baby?

The doctor did a sonar and could see nothing. Literally nothing. No baby. My heart sank into my shoes. How could the bloodtest be so wrong? So he decided to do an internal sonar, and there it was. A tiny, tiny little sack. It was empty though. The doctor said it's probably very very early, he guess around 2 weeks (or 4 weeks if you count from the proverbial beginning of the cycle – which I didn't have!). He told me to come back in 2 weeks time.

Those 2 weeks were very very difficult. We told no one, too scared that it's going to be a blastocyst, where no baby develops inside the sack. But the moment the gynae did the sonar 2 weeks later, we saw it. A little living bean-shaped baby. The doctor assured us that he thinks it'll be fine. The medication was taken before it could hurt the baby. I was probably about 4 days pregnant, up to 14 days. So when he prescribed the medication, baby was still in the fallopian tube, busy travelling down to the uterus. Then it takes time for the placenta to develop. So most likely, none of the medication reached the baby. We were so relieved! Isn't it wonderful, that even though I took medication to force the endometrium to shed, it didn't work? Because a little miracle was taking place. The dr gave me progesterin suppositories to help sustain the pregnancy.

From week 6 to week 12, I battled with nausea and tiredness. But nothing could bring me down from the high I was on. Even the constant endo pain I was still experiencing daily, suddenly didn't matter. We told our collegues and bosses (me and hubby were working together at the same company) when I was 8 weeks old. After we saw the little heartbeat. Everyone was so happy for us.

At 12 weeks I told the gynae that I need to move to a gynae closer to us. I went to see him for the endo, but driving so far from home for a pregnancy is going to be difficult. So, I made an appointment for my 16^th week check-up with a new gynae, close to our house. It was a woman, and she came highly recommended.

When I was 13 weeks, I stood up one morning, and there was blood. I immediately burst into tears. This can't be. I can't be having a miscarriage NOW. Is it because the progesterin suppositories was stopped at 12 weeks? Did it sustain the pregnancy while it wasn't realy viable? But we saw the heart beat at 8 weeks! We saw it moving at 12 weeks. It was a baby, with hands and feet and a little tiny brain. I can't loose it now...

To be continued...

Mr N's Pregnancy and Birth I

I was probably around age 3 when I knew I wanted kids. So when I was 25 and have been married for 2 years, I went to the gynae, hoping that he'll declare me fit and healthy so that I can start a family. I walked out of his office devastated and in tears. The gynae told me that I most likely have something called “endometriosis” and that it causes women to be infertile.

Infertile. The word reverberated through my head the rest of the weekend and until the Wednesday when I had to go to hospital so that the gynae could do a laparoscopy (a small incision is made in the navel through which they take a look inside). And he found it. Endometriosis patches, as they call it. Endo, for short.

Endo is when small pieces of endometrium (the lining within the uterus) is found outside the uterus, in the abdomen. It also goes through hormonal stimulation, thus bleeding every 4 weeks. This causes inflammation and scarring, which causes damage to the organs to which they get stuck. Currently, there is no cure for endo. They also do not know what causes it. Though there's a few theories.

So when I was diagnosed with endo, I realised....it's not going to be an easy road to pregnancy. I was fortunate though, some people get awful endo patches on their fallopian tubes and ovaries. Mine was mostly on the bladder and uterus's outside. No wonder I had so many strange bladder symptoms no one could ever explain!

The gynae told me if I want children, he needed to do a laparotomy. I was like WHAT??? That's major surgery! They cut you open from side to side, and try to get rid of the endo patches. I told him to wait, stop the bus. So I went home and started to do some research. And I came to the conclusion that this gynae is very old fashioned. He should've tried to get rid of the endo patches while he was in there already with the laparoscopy. Not just close me up and book a laparotomy. Which was the way doctors used to do it. Long ago. It's rarely used today, since a laparoscopy could in most cases, work just as well.

So I changed gynies. The 2^nd one proposed medication. I agreed, it sounded like an easier road than a 6-week recovery after the laparotomy! If only I knew...

The medication is given in monthly injections, directly into the stomach. It was terrifying, but thank goodness for Emla patches! It's a local anaesthesia. Though, it still burned inside the stomach for hours afterwards. But the worst was to come,

Within weeks, I was in severe pain. They say it's a side effect of the medication. It first stimulates the endo patches, causing the pain of it to worsen tenfold. It should've tapered off after a few weeks. Unfortunately in my case, it didn't. It just got worse and worse with each week, and with each injection. After about a month, I was unable to work. I was unable to stand upright. It was awful. I tried every painkiller prescribed by the gynae, nothing worked.

The injections also put you in pseudo-menopause, in the hope that it will shrink the endo patches. Unfortunately, with menopause comes side-effects. I got headaches, hot flushes, mood swings and depression. Insomnia ensued, for which I had to take medication as well.

After the 2^nd injection, and being off work for weeks, the doctor gave me hormonal pills to try and curb the side effects. It helped a little bit and I could return to work on some days. Fortunately my bosses were most understanding. A month passed after the 3^rd injection, and the doctor advised us to start trying for pregnancy. It was mid April 2000. I haven't had a cycle for 4 months due to the hormones. He sent me for some bloodtests, but told us to go for the wrong test. He blamed me, but both me and hubby heard what he said. He's one of those doctors that sees patients from 7am until 7pm. I blame the fact that he was most likely tired when he made the mistake. But I didn't appreciate him telling me it was MY mistake. Not when hubby confirmed that it was the doctor's mistake.

He also told me to pick up weight. Yes. Uhm. I've been trying to do that for 25 years, dr! He said that nobody under 47kg will be able to fall pregnant. I was 43kg.

To be continued...

Hiya Everyone!

I’ve started this blog as a means to keep family and friends updated, as well as a place where I can gather my thoughts. I’m used to writing in English, and since some of my friends are English, I’m going to do this mostly in English. So excuse any spelling mistakes and grammatical errors! Well, this is still a work in progress, so give me time to expand, design and beautify the blog…:-)