growing - metaphorically and literally
Wow. Ok. Six months to the day since my last blog. I have given up apologising (even to myself) because as much as I would love to write more often, life at the moment just doesn't seem to allow that luxury! It's kind of insane to actually list all the things that have happened in my life in the last half year. Oh God. I hope this posting doesn't become a shopping list or one of those "End of Year Wrap Up" letters that people write when they can't be bothered to keep up to date with their friends on a regular basis. If it does, I apologise profusely now.
I'll also try and be as chronologically accurate as possible. If for no other reason, it will help clarify everything for myself and prevent me from writing an incomprehensible rambling of disconnected thoughts.
Ok, so not long after my last posting back in August 2009, my husband and I found ourselves in every parent's worst nightmare - rushing your baby to hospital. Liev was almost six months old, totally gorgeous and (we thought) totally healthy. One evening, we were up to our necks in packing boxes, frantically trying to finish packing up our apartment for the movers who were due to arrive at 7am the following morning. We thought we'd get Liev bathed and ready for bed nice and early so we'd have more time to get organised.
One moment I am holding my cherubic bundle of joy who was his regular smiley happy self and the next moment he is staring lifelessly at me, his body limp and the corners of his lips and nose turning blue. He was conscious, but it was if "the lights were on, but nobody was home."
I yelled for my husband to come and we both agreed something was horribly wrong with Liev, although we had NO idea what it possibly could be. Within 15 minutes we were at the emergency room of our nearest hospital. By the time we were on our way there, his colour was back to normal and he was able to acknowledge us, but he was incredibly tired and barely able to keep his eyes open. Slightly hysterical me didn't know if he was trying to sleep or falling into a coma.
I snapped my fingers at him and prodded him to keep him awake.
He was looked at immediately and the doctors started to run a series of tests - blood tests, heart tests, neurological tests. While all this was going on, Liev seemed to have returned to normal, so we were totally stumped as to what had happened to him at home. Had we imagined it? Or over-reacted?
The attending doctor told us that it was hospital policy to admit babies brought to the ER for 72 hours of observation. At that point, we could keep him there, or transfer him. Firstly, I was gutted we couldn't take him home, but then again, we were terrified it would happen again. We figured, we were already in a hospital (ok, not the BEST hospital in Jerusalem) but how bad could it be? It was just for observation, right? We decided to admit him.
For the next two days, my husband and I did shifts so one of us was always with Liev (I slept there). We also had to somehow move apartment. I have no idea how we did it, but we did. I think I was semi-conscious for most of it. I was running off a store of adrenaline I didn't even know I had. As soon as the boxes were in the new apartment and the food was shoved back in the refrigerator, I locked up and got back to the hospital to take over from Doron and settle in for our third (and we assumed) final night.
In the early hours of the morning, my son woke me with a strangled cry I had never heard before. I leaped out of bed and went to his cot. He was as rigid as a board and staring into space, unable to make eye contact with me. I picked him up and yelled for the nurses, whose apathy in coming to help me still makes my blood boil.
Once they realised the situation was serious, they took him from me and rushed him to the treatment room and called for the pediatrician. Liev was revived shortly after with some oxygen and then he fell into a deep sleep. The doctor arrived, looking none too pleased for having been woken up at 5am, and after a perfunctory look at Liev (although no medical history taken, or questions for me) decided to 'diagnose' Liev with dysentery. This - despite the fact he had never had a fever since being admitted, and didn't have diarrhoea or showed signs of dehydration - all classic symptoms of dysentery.
He prescribed antibiotics, which the nurse handed to me and told me to give him and well, that was it. I am obviously not a doctor, but I knew he was 100% wrong. Every cell in my body told me that. Meanwhile, Doron had arrived and we started to discuss what to do now. Not long after, Liev had another 'attack' - although this one was longer, and seemed more severe. More oxygen, and he was back with us - until he slumped into another coma-like sleep.
The doctor finally agreed to call an external pediatric neurologist and then it became deafeningly clear to us that Liev was in the wrong hospital. They had NO idea what was wrong with him, they didn't have the necessary specialists on staff and we were not about to let our baby become an 'experiment' for them to work with until they worked out what the hell was wrong with him. The most disturbing aspect of all of this is that some of the doctors, the nurses and even the doctor who performed the CT scan on him all told us in no uncertain terms to "get our baby the hell out of here and take him to one of the other hospitals where they could properly treat him". That's it, we thought. He's out of here. We told the doctors we wanted to transfer him.
We then found ourselves in a bureaucratic nightmare. The hospital refused to admit that they were unable to provide him with proper treatment and therefore would not pay to have him transferred by ambulance to another hospital, although they had no issue at all with discharging him. After speaking with a number of people, we determined the best hospital to take him to and decided to pay for the transfer ourselves, which also meant paying for a doctor privately to accompany him because the ambulance wouldn't take responsibility for a baby suffering regular seizures without a doctor on board.
It took about 7 hours, but finally we had him moved and despite the fact that Liev was still extremely sick (and we still didn't know what was wrong with him!) we were able to breathe considerably easier knowing we were in a good place that would take care of our baby properly.
Liev was in hospital another 3 days, during which time he was examined by several pediatric neurologists (including the head of the department), underwent a battery of tests and scans and finally diagnosed with infant seizures/childhood epilepsy. He was given an anti-seizure medication and the seizures completely stopped, almost immediately.
As devastating as it was to hear that Liev had epilepsy, we were given some encouraging news. His seizures (even the worst ones) were very mild on the epilepsy spectrum (he didn't fit, for example) and he only suffered a handful of them in a very short space of time, none of which had any lasting effect on his brain. The fact that a small amount of the drug they administered stopped the seizures almost instantly was also very encouraging as it told them his condition was mild and controllable. Although it's impossible to truly predict how his condition will develop and how long it will last, the doctors are reasonably confident that he is one of the majority of children who develop unexplained seizures in infancy who will just as suddenly and inexplicably grow out of them in early childhood. Well all I can say is, please God and Amen.
We were finally able to take Liev home almost a week after that traumatic first night he was rushed to hospital. He's been taking a daily dose of the anti-seizure medication ever since and so far, so good. He hasn't had another seizure. Tfu-tfu-tfu as us Yids say.
Yesterday, he finally underwent an MRI scan, the results of which we should have in a week or so when we go to see his neurologist. Hopefully, we'll also get a better idea of our path with him in the next 6 months or so.
So, if that experience wasn't stressful enough to deal with, I was also coping with being pregnant again - something we hadn't told anyone yet except our families. I was in my first trimester and I spent the week in hospital with Liev terrified the stress was going to cause me to miscarry. I didn't, thank God, and now I am developing a nice round belly and carrying a little sister for Liev who is due at the beginning of June.
Thinking our dramas were behind us as we settled into a routine in our new apartment and with Liev who was growing from strength to strength (he crawls, stands, babbles incessantly and waves hello to us which melts our hearts!) we were rocked with a new family drama. This time my father in Australia.
It started with a major heart attack that he suffered in December which resulted in an angioplasty procedure to place a stent in his artery which they discovered had a 90% blockage. Incredibly, my dad recovered well from his operation and was able to return home a week or so later. We thought that was the end of it until I received a text message from my brother a couple of weeks ago to say my dad was in hospital again, this time for an emergency operation to repair a ruptured bowel. A few days after his surgery (during which he suffered another heart attack) we received the devastating news that my father has cancer. At this stage, it's hard to know what the future holds. He's in a difficult situation because his severely weakened heart means that they can't operate for a few months to remove the tumour and even starting a course of chemotherapy has huge implications as the treatment will all but destroy his immune system - essential for his recovery from his heart attacks.
It's a delicate balancing act that his oncologist and cardiologist will have to navigate in the coming months. In the meantime, my dad has a remarkably positive outlook and attitude and I am so incredibly proud of him. It is unbearably hard to be on the other side of the world right now. I haven't seen my dad in 3 1/2 years - not since I left Australia to come to Israel at the end of 2006. Of course we talk regularly and skype each other with webcams, but it's not the same.
Going to Australia now to visit is not really an option as I am approaching my third trimester of pregnancy and that's hardly the time to start hopping on planes. Hopefully, we'll all be able to visit later in the year, with two babies in tow.
Reading back, I am kind of shocked at how dramatic this post is. It's a wonder I haven't become a total basketcase the last few months! Well, I am not a rock and there have certainly been more than a few occasions when it's all got too much for me and I've crumbled under the pressure. But I've also got through everything so far thanks to my amazing life partner, my husband Doron who has propped me up each and every single time I have felt like it's just all too much and my beautiful son who is the true light of my life and the precious cargo I am carrying in my belly at the moment whose persistent kicks remind me that she's around and part of the family already.
Once again, I have been made acutely aware of the fragility of life and how much we must truly bless what - and who - we have in our lives. When you finish reading this, please give your nearest and dearest a big hug and a kiss and tell them how much you love them.
Yours hormonally,
Me xx
I'll also try and be as chronologically accurate as possible. If for no other reason, it will help clarify everything for myself and prevent me from writing an incomprehensible rambling of disconnected thoughts.
Ok, so not long after my last posting back in August 2009, my husband and I found ourselves in every parent's worst nightmare - rushing your baby to hospital. Liev was almost six months old, totally gorgeous and (we thought) totally healthy. One evening, we were up to our necks in packing boxes, frantically trying to finish packing up our apartment for the movers who were due to arrive at 7am the following morning. We thought we'd get Liev bathed and ready for bed nice and early so we'd have more time to get organised.
One moment I am holding my cherubic bundle of joy who was his regular smiley happy self and the next moment he is staring lifelessly at me, his body limp and the corners of his lips and nose turning blue. He was conscious, but it was if "the lights were on, but nobody was home."
I yelled for my husband to come and we both agreed something was horribly wrong with Liev, although we had NO idea what it possibly could be. Within 15 minutes we were at the emergency room of our nearest hospital. By the time we were on our way there, his colour was back to normal and he was able to acknowledge us, but he was incredibly tired and barely able to keep his eyes open. Slightly hysterical me didn't know if he was trying to sleep or falling into a coma.
I snapped my fingers at him and prodded him to keep him awake.
He was looked at immediately and the doctors started to run a series of tests - blood tests, heart tests, neurological tests. While all this was going on, Liev seemed to have returned to normal, so we were totally stumped as to what had happened to him at home. Had we imagined it? Or over-reacted?
The attending doctor told us that it was hospital policy to admit babies brought to the ER for 72 hours of observation. At that point, we could keep him there, or transfer him. Firstly, I was gutted we couldn't take him home, but then again, we were terrified it would happen again. We figured, we were already in a hospital (ok, not the BEST hospital in Jerusalem) but how bad could it be? It was just for observation, right? We decided to admit him.
For the next two days, my husband and I did shifts so one of us was always with Liev (I slept there). We also had to somehow move apartment. I have no idea how we did it, but we did. I think I was semi-conscious for most of it. I was running off a store of adrenaline I didn't even know I had. As soon as the boxes were in the new apartment and the food was shoved back in the refrigerator, I locked up and got back to the hospital to take over from Doron and settle in for our third (and we assumed) final night.
In the early hours of the morning, my son woke me with a strangled cry I had never heard before. I leaped out of bed and went to his cot. He was as rigid as a board and staring into space, unable to make eye contact with me. I picked him up and yelled for the nurses, whose apathy in coming to help me still makes my blood boil.
Once they realised the situation was serious, they took him from me and rushed him to the treatment room and called for the pediatrician. Liev was revived shortly after with some oxygen and then he fell into a deep sleep. The doctor arrived, looking none too pleased for having been woken up at 5am, and after a perfunctory look at Liev (although no medical history taken, or questions for me) decided to 'diagnose' Liev with dysentery. This - despite the fact he had never had a fever since being admitted, and didn't have diarrhoea or showed signs of dehydration - all classic symptoms of dysentery.
He prescribed antibiotics, which the nurse handed to me and told me to give him and well, that was it. I am obviously not a doctor, but I knew he was 100% wrong. Every cell in my body told me that. Meanwhile, Doron had arrived and we started to discuss what to do now. Not long after, Liev had another 'attack' - although this one was longer, and seemed more severe. More oxygen, and he was back with us - until he slumped into another coma-like sleep.
The doctor finally agreed to call an external pediatric neurologist and then it became deafeningly clear to us that Liev was in the wrong hospital. They had NO idea what was wrong with him, they didn't have the necessary specialists on staff and we were not about to let our baby become an 'experiment' for them to work with until they worked out what the hell was wrong with him. The most disturbing aspect of all of this is that some of the doctors, the nurses and even the doctor who performed the CT scan on him all told us in no uncertain terms to "get our baby the hell out of here and take him to one of the other hospitals where they could properly treat him". That's it, we thought. He's out of here. We told the doctors we wanted to transfer him.
We then found ourselves in a bureaucratic nightmare. The hospital refused to admit that they were unable to provide him with proper treatment and therefore would not pay to have him transferred by ambulance to another hospital, although they had no issue at all with discharging him. After speaking with a number of people, we determined the best hospital to take him to and decided to pay for the transfer ourselves, which also meant paying for a doctor privately to accompany him because the ambulance wouldn't take responsibility for a baby suffering regular seizures without a doctor on board.
It took about 7 hours, but finally we had him moved and despite the fact that Liev was still extremely sick (and we still didn't know what was wrong with him!) we were able to breathe considerably easier knowing we were in a good place that would take care of our baby properly.
Liev was in hospital another 3 days, during which time he was examined by several pediatric neurologists (including the head of the department), underwent a battery of tests and scans and finally diagnosed with infant seizures/childhood epilepsy. He was given an anti-seizure medication and the seizures completely stopped, almost immediately.
As devastating as it was to hear that Liev had epilepsy, we were given some encouraging news. His seizures (even the worst ones) were very mild on the epilepsy spectrum (he didn't fit, for example) and he only suffered a handful of them in a very short space of time, none of which had any lasting effect on his brain. The fact that a small amount of the drug they administered stopped the seizures almost instantly was also very encouraging as it told them his condition was mild and controllable. Although it's impossible to truly predict how his condition will develop and how long it will last, the doctors are reasonably confident that he is one of the majority of children who develop unexplained seizures in infancy who will just as suddenly and inexplicably grow out of them in early childhood. Well all I can say is, please God and Amen.
We were finally able to take Liev home almost a week after that traumatic first night he was rushed to hospital. He's been taking a daily dose of the anti-seizure medication ever since and so far, so good. He hasn't had another seizure. Tfu-tfu-tfu as us Yids say.
Yesterday, he finally underwent an MRI scan, the results of which we should have in a week or so when we go to see his neurologist. Hopefully, we'll also get a better idea of our path with him in the next 6 months or so.
So, if that experience wasn't stressful enough to deal with, I was also coping with being pregnant again - something we hadn't told anyone yet except our families. I was in my first trimester and I spent the week in hospital with Liev terrified the stress was going to cause me to miscarry. I didn't, thank God, and now I am developing a nice round belly and carrying a little sister for Liev who is due at the beginning of June.
Thinking our dramas were behind us as we settled into a routine in our new apartment and with Liev who was growing from strength to strength (he crawls, stands, babbles incessantly and waves hello to us which melts our hearts!) we were rocked with a new family drama. This time my father in Australia.
It started with a major heart attack that he suffered in December which resulted in an angioplasty procedure to place a stent in his artery which they discovered had a 90% blockage. Incredibly, my dad recovered well from his operation and was able to return home a week or so later. We thought that was the end of it until I received a text message from my brother a couple of weeks ago to say my dad was in hospital again, this time for an emergency operation to repair a ruptured bowel. A few days after his surgery (during which he suffered another heart attack) we received the devastating news that my father has cancer. At this stage, it's hard to know what the future holds. He's in a difficult situation because his severely weakened heart means that they can't operate for a few months to remove the tumour and even starting a course of chemotherapy has huge implications as the treatment will all but destroy his immune system - essential for his recovery from his heart attacks.
It's a delicate balancing act that his oncologist and cardiologist will have to navigate in the coming months. In the meantime, my dad has a remarkably positive outlook and attitude and I am so incredibly proud of him. It is unbearably hard to be on the other side of the world right now. I haven't seen my dad in 3 1/2 years - not since I left Australia to come to Israel at the end of 2006. Of course we talk regularly and skype each other with webcams, but it's not the same.
Going to Australia now to visit is not really an option as I am approaching my third trimester of pregnancy and that's hardly the time to start hopping on planes. Hopefully, we'll all be able to visit later in the year, with two babies in tow.
Reading back, I am kind of shocked at how dramatic this post is. It's a wonder I haven't become a total basketcase the last few months! Well, I am not a rock and there have certainly been more than a few occasions when it's all got too much for me and I've crumbled under the pressure. But I've also got through everything so far thanks to my amazing life partner, my husband Doron who has propped me up each and every single time I have felt like it's just all too much and my beautiful son who is the true light of my life and the precious cargo I am carrying in my belly at the moment whose persistent kicks remind me that she's around and part of the family already.
Once again, I have been made acutely aware of the fragility of life and how much we must truly bless what - and who - we have in our lives. When you finish reading this, please give your nearest and dearest a big hug and a kiss and tell them how much you love them.
Yours hormonally,
Me xx
7:50 pm
WOW! Great writing. May G-d continue to bless you with strength and gratitude. What a nightmare...The Kabbalah teaches us that we're here to learn how to die properly.
It is vital to be joyous always and not to become depressed about anything in the world, regardless of what happens. If you are absolutely determined to let nothing worry you, in the end, you will be worthy of overcoming everything and attaining peace.- Breslev teaching...
I Love you all and pray for your health and happiness. The best medicine is a Happy heart- King Solomon top
5:14 am
Hi Solid Gold Dancing in the Holy Land... it's your long time reader here, who is just wondering if all is well, and if your latest bundle of joy arrived safely. Hope to hear from you. Also.. are you on twitter, facebook, etc. Best wishes from Oz. top
7:50 pm
Hi Paula,
Well, I finally got around to writing a new blog and yes, our bundle of joy did arrive safely :-)
I don't Twitter, but you can find me on Facebook (search for tanya strusberg)
All the best!
Tanya top