Mum Life

Hi, Im Janelle. Owner and Mama behind MLJ. My blog is a space for me to share a personal side of my life. From Business to Mama tips, to amazing stories I feel to share. I hope you enjoy this little space as much as I do. 

xx Janelle 

A Mothers Hope: PART EIGHT - Hope is on its way

Posted by Susie Bartlett on

PART EIGHT
They say when you are walking through hell, not to stop.... Just keep walking! I was walking, but I was growing tired.
.
Matthew 11:28  Come to Me, all who are weary and heavy-laden, and I will give you rest.
.
Janelle was now six months old and we lived day by day, hour by hour, minute by minute. We had jumped so many hurdles, climbed a multitude of mountains and managed to overcome everything thrown at us. But with every new morning you didn't know what the day would bring, would it be a valley or a summit? Patients came and went, parents would pass the time chatting then leave, we always seemed to be left behind still living at the hospital. I tried to remain positive by thinking there was always someone on that children's ward who was worse off then we were and I would try to pray for other children as well as my own.
One day a mother arrived and her baby was in the cot opposite. I quietly assessed her darling, little, sleeping angel from the other side of the room and decided they were worse off than us. He was about four months old and his head was shaped like a light bulb, almost alien-like due to fluid swelling his brain. How awful for that mother as his life was obviously threatened too. I heard the nurses discussing other heart and organ conditions that just couldn't be cured. I basically was sad for how he looked and the prognosis for his life. He was much worse off than us and we were blessed. Later that day his mum and I got talking and too my surprise she confessed to sitting there thinking the opposite! How we were much worse off than them. She had come to this conclusion due to the fact that she could hide his disfigurement with a hat, but I could not hide Janelle's face. We decided we were both blessed because our babies were gorgeous. Parents are very vulnerable in the isolated world called hospital, and sometimes the stress can do strange things to people.
With the Alpha Interferon on a flight of hope to Australia, my anticipation was growing to see the end of this horrible journey I was on. In the corridor outside my room was a pay phone and occasionally I would call a friend to share the latest news, catch up on town news and basically feel less lonely for a little while. Visitors were rare but my parents were making the trip in to spend some time with us. My mother had just gone through cancer of the thyroid recently, so it was lovely to get to see them. After their arrival we went to the downstairs cafeteria for lunch together, I took Janelle with me so they could spend time with their granddaughter. While we were eating a woman approached us and asked about Janelle's condition, questioning if they were Hemangiomas. She went on to say her young son was in the hospital and had Hemangiomas in his stomach area. She told us how her Doctors were getting a drug from America called Alpha Interferon and that it was experimental. To say I was blown away is definitely an understatement, why didn't my doctors know there was another child with the same condition as my daughters in the hospital. Why didn't they tell me that he was also about to try this experimental drug. My doctors should have been talking to their doctors! After some discussion we exchanged ward and room numbers, and the lady returned to her table. Wow, I had finally found someone who could relate to what we were going through. I walked up to the counter to take our plates back and noticed that the women approached my parents and chatted for a few more minutes. When I returned to the ward after mum and dad had left, I called by to visit the lady once again, however she or her child wasn't there. Thinking that I got the ward number incorrect I went downstairs to the foyer and asked them to search the hospital for this little boy.... there was no record of another child with Hemangiomas. Back on the ward I told the nurses and they investigated a bit themselves and came up with nothing, so security was alerted. The concern now was that Janelle was in risk of danger and a security guard was placed on the ward. The next day the mystery was solved and the matron came and told me this woman was actually on my ward and had been planning on taking Janelle! Her baby was severely disabled from a near drowning and she had overheard all Janelle's medical information while I was talking on the pay phone. Later my parents told me she had asked what Janelle was like with strangers and if she was a happy baby.
Praise God there was a flight on its way with my hope of a cure on board.... because there wasn't much more I could take.

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A Mothers Hope: PART EIGHT - Hope is on its way

Posted by Susie Bartlett on

PART EIGHT
They say when you are walking through hell, not to stop.... Just keep walking! I was walking, but I was growing tired.
.
Matthew 11:28  Come to Me, all who are weary and heavy-laden, and I will give you rest.
.
Janelle was now six months old and we lived day by day, hour by hour, minute by minute. We had jumped so many hurdles, climbed a multitude of mountains and managed to overcome everything thrown at us. But with every new morning you didn't know what the day would bring, would it be a valley or a summit? Patients came and went, parents would pass the time chatting then leave, we always seemed to be left behind still living at the hospital. I tried to remain positive by thinking there was always someone on that children's ward who was worse off then we were and I would try to pray for other children as well as my own.
One day a mother arrived and her baby was in the cot opposite. I quietly assessed her darling, little, sleeping angel from the other side of the room and decided they were worse off than us. He was about four months old and his head was shaped like a light bulb, almost alien-like due to fluid swelling his brain. How awful for that mother as his life was obviously threatened too. I heard the nurses discussing other heart and organ conditions that just couldn't be cured. I basically was sad for how he looked and the prognosis for his life. He was much worse off than us and we were blessed. Later that day his mum and I got talking and too my surprise she confessed to sitting there thinking the opposite! How we were much worse off than them. She had come to this conclusion due to the fact that she could hide his disfigurement with a hat, but I could not hide Janelle's face. We decided we were both blessed because our babies were gorgeous. Parents are very vulnerable in the isolated world called hospital, and sometimes the stress can do strange things to people.
With the Alpha Interferon on a flight of hope to Australia, my anticipation was growing to see the end of this horrible journey I was on. In the corridor outside my room was a pay phone and occasionally I would call a friend to share the latest news, catch up on town news and basically feel less lonely for a little while. Visitors were rare but my parents were making the trip in to spend some time with us. My mother had just gone through cancer of the thyroid recently, so it was lovely to get to see them. After their arrival we went to the downstairs cafeteria for lunch together, I took Janelle with me so they could spend time with their granddaughter. While we were eating a woman approached us and asked about Janelle's condition, questioning if they were Hemangiomas. She went on to say her young son was in the hospital and had Hemangiomas in his stomach area. She told us how her Doctors were getting a drug from America called Alpha Interferon and that it was experimental. To say I was blown away is definitely an understatement, why didn't my doctors know there was another child with the same condition as my daughters in the hospital. Why didn't they tell me that he was also about to try this experimental drug. My doctors should have been talking to their doctors! After some discussion we exchanged ward and room numbers, and the lady returned to her table. Wow, I had finally found someone who could relate to what we were going through. I walked up to the counter to take our plates back and noticed that the women approached my parents and chatted for a few more minutes. When I returned to the ward after mum and dad had left, I called by to visit the lady once again, however she or her child wasn't there. Thinking that I got the ward number incorrect I went downstairs to the foyer and asked them to search the hospital for this little boy.... there was no record of another child with Hemangiomas. Back on the ward I told the nurses and they investigated a bit themselves and came up with nothing, so security was alerted. The concern now was that Janelle was in risk of danger and a security guard was placed on the ward. The next day the mystery was solved and the matron came and told me this woman was actually on my ward and had been planning on taking Janelle! Her baby was severely disabled from a near drowning and she had overheard all Janelle's medical information while I was talking on the pay phone. Later my parents told me she had asked what Janelle was like with strangers and if she was a happy baby.
Praise God there was a flight on its way with my hope of a cure on board.... because there wasn't much more I could take.

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A Mothers Hope: Part SEVEN - Searching for Hope

Posted by Susie Bartlett on

So just how far does a person go to find a solution? Is the ends of the world ever too far? 
.
Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
.
As a mother trying to save her baby's life, I was willing to go to the ends of the earth for a cure....and I did. After doing some research ourselves, we started to call overseas doctors. One doctor in London wasn't much help stating that there wasn't much that hadn't already been done and to let her go blind or even worse, pass away. So I called a doctor in the US where I had read that sometimes they can remove Hemangiomas, by one doctor cutting and the other doctor would immediately laser the blood vessels closed to avoid haemorrhaging. Dr Wayner and Dr Sun were very helpful and extremely interested in Janelle's case, they were world leaders in the treatment of massive Hemangioma. Dr Wayner asked for all the case history to be sent to them and they would consult with others to see what could be done. I went to the hospital and signed release paper to access her history, arranged a courier and sent it all with a prayer.....then I waited. We had looked into flights to Arkansas, talked about staying with Dr Wayner and his wife and what length of time I would be overseas... but it wasn't to be. Not long after Dr Wayner called me with the devastating news that it was just too late. The swelling that would come after the operation would put too much pressure on her eyes and she would definitely go blind, a risk they weren't willing to take.
He did however discuss an experimental drug they were trying in the US called Alpha Interferon, which had the possibility to shrink the Hemangiomas. It had been used for patients with leukaemia but only five children had tried it for birthmarks and one had died. Janelle would be the sixth in the world, youngest ever to try it and of course first in Australia. It was basically our last resort. We needed to get government approval just to bring it in the country and at $100 a dose we needed the government to pay for it. Janelle would start her treatment at two doses a day, then one dose for about six to nine months, if it was successful. You do the maths, that's a lot of money for parents with three little children and only one income. So our doctors agreed to apply to get it and we thought we had a good chance, as Janelle passed all their criteria. She had to be life threatened, not have any other options, not have the drug available in Australia and have it show some sort of success in the past. It would take a couple of weeks to get an answer and but we didn't know if we had that long.
One day during that time, I was carrying Janelle in the hospital hall and when I looked down she was asleep and all her Hemangioma's had shrunk; her face appeared normal. I stood there yelling for the doctors who came running. My mind hoped that this was the miracle that we had been praying for and God had shrunk these birthmarks. However as the doctors took her limp body from my arms it was actually because she had no blood pressure, so the swelling had receded. The doctor was checking for a heart beat and about to press the code red button, a red light that appeared in the hall when a child had passed and needed CPR. Then right before our eyes, the swelling grew back the way it was and Janelle came back to us and woke up. This happened twice and the doctors had no explanation for me at the time, but in my heart I was preparing myself to say goodbye to my little girl.
Within a short period of time the government responded to say that Janelle was approved and we could have the drug sent to Australia. At last a tiny glimmer of hope! We signed papers to say we were aware that Alpha Interferon was an experimental drug and in the event of Janelle's death, we would not sue the government or the hospital. It was tough signing those papers but I had a strange peace about this decision and after all.... it was our only decision left.
 
 
READ PART 8 - Hope is on its way NOW

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A Mothers Hope: Part SEVEN - Searching for Hope

Posted by Susie Bartlett on

So just how far does a person go to find a solution? Is the ends of the world ever too far? 
.
Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
.
As a mother trying to save her baby's life, I was willing to go to the ends of the earth for a cure....and I did. After doing some research ourselves, we started to call overseas doctors. One doctor in London wasn't much help stating that there wasn't much that hadn't already been done and to let her go blind or even worse, pass away. So I called a doctor in the US where I had read that sometimes they can remove Hemangiomas, by one doctor cutting and the other doctor would immediately laser the blood vessels closed to avoid haemorrhaging. Dr Wayner and Dr Sun were very helpful and extremely interested in Janelle's case, they were world leaders in the treatment of massive Hemangioma. Dr Wayner asked for all the case history to be sent to them and they would consult with others to see what could be done. I went to the hospital and signed release paper to access her history, arranged a courier and sent it all with a prayer.....then I waited. We had looked into flights to Arkansas, talked about staying with Dr Wayner and his wife and what length of time I would be overseas... but it wasn't to be. Not long after Dr Wayner called me with the devastating news that it was just too late. The swelling that would come after the operation would put too much pressure on her eyes and she would definitely go blind, a risk they weren't willing to take.
He did however discuss an experimental drug they were trying in the US called Alpha Interferon, which had the possibility to shrink the Hemangiomas. It had been used for patients with leukaemia but only five children had tried it for birthmarks and one had died. Janelle would be the sixth in the world, youngest ever to try it and of course first in Australia. It was basically our last resort. We needed to get government approval just to bring it in the country and at $100 a dose we needed the government to pay for it. Janelle would start her treatment at two doses a day, then one dose for about six to nine months, if it was successful. You do the maths, that's a lot of money for parents with three little children and only one income. So our doctors agreed to apply to get it and we thought we had a good chance, as Janelle passed all their criteria. She had to be life threatened, not have any other options, not have the drug available in Australia and have it show some sort of success in the past. It would take a couple of weeks to get an answer and but we didn't know if we had that long.
One day during that time, I was carrying Janelle in the hospital hall and when I looked down she was asleep and all her Hemangioma's had shrunk; her face appeared normal. I stood there yelling for the doctors who came running. My mind hoped that this was the miracle that we had been praying for and God had shrunk these birthmarks. However as the doctors took her limp body from my arms it was actually because she had no blood pressure, so the swelling had receded. The doctor was checking for a heart beat and about to press the code red button, a red light that appeared in the hall when a child had passed and needed CPR. Then right before our eyes, the swelling grew back the way it was and Janelle came back to us and woke up. This happened twice and the doctors had no explanation for me at the time, but in my heart I was preparing myself to say goodbye to my little girl.
Within a short period of time the government responded to say that Janelle was approved and we could have the drug sent to Australia. At last a tiny glimmer of hope! We signed papers to say we were aware that Alpha Interferon was an experimental drug and in the event of Janelle's death, we would not sue the government or the hospital. It was tough signing those papers but I had a strange peace about this decision and after all.... it was our only decision left.
 
 
READ PART 8 - Hope is on its way NOW

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A Mothers Hope: Part SIX - Clinging to Hope.

Posted by Susie Bartlett on

Part SIX
There is a saying that says that sometimes you have to hit rock bottom, then the only way out is up! I thought we were at the bottom... but we weren't there yet.
.
John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
.
By the time Janelle was approaching five months old, things were deteriorating rapidly. We had strike 1 with the oral steroids, strike 2 with the intravenous steroids and yet nothing was slowly down the growth of the Hemangiomas. Basically we were running out of options. Our congregation at our church had been praying all these months and they decided to spend a day fasting to really cry out to God for Janelle's healing. That night we gathered together for prayer and I was able to take Janelle to be prayed for. I remember an elder in the church praying and mentioning 'having to hit rock bottom'. My immediate thought was that we were at rock bottom and God was going to now give us a miracle! The elder then went onto pray that we weren't there yet.... sadly he was right and again God was preparing me for battle.
Every week we were either in the hospital or visiting doctors. Appointments with the eye clinic on one floor, the haematology clinic on another floor, respiratory doctors, paediatricians, plastic surgeons, nutritionists, physiotherapists; the list went on. The nurses got to know us really well and loved Janelle, even the hospital staff fell for her. I was growing in knowledge about her condition and had become concerned about the possibility of the birthmark behind her eye growing back into her brain. So I asked the doctors about this. One said it was impossible because a plate of skull protected it and the other said it was a 'one in a million' chance and not to worry about it. In the meantime they had decided to try and inject steroids directly behind the eye, to try and attack the multiplying vessels. They prepared her for surgery and took a Catscan beforehand. So there I was, sitting in the waiting room alone, anxiously looking for the doctor to come out and tell me it was a success. However he came out sooner than expected, still dressed in his operating greens, that funny hat shaped like a shower cap and those little green slippers, he obviously had come directly to find me. He then told me they had canceled the procedure. Another strike! The Catscan taken beforehand had shown a shadow in the brain cavity and they were now concerned this was the birthmark behind the eye. Janelle was now life threatened and could pass away at any given time.
If they injected the steroids behind the eye, that tiny needle prick could cause haemorrhaging and she would never make it out of theatre. Maybe this was rock bottom?
Later that day Janelle's daddy came into visit on his own, I told him the news. He cried so hard I had to pull the curtains around us for privacy as we were always in a shared ward. That evening, when the doctor came to speak to us and answer all our questions, he went to great lengths to reassure us that our darling baby was in the best possible hands she could be in and they were doing everything to care for her. It was ironic though, because while he was still talking to us out in the hallway, a nurse approached and regretfully said she had accidentally just given Janelle the medicine intended for the baby in the opposite cot! Sometimes the timing of situations during trials is just ridiculous! Thankfully the medicine had no adverse effect on Janelle and again we were back to the drawing board, looking for a cure and running out of time.
.
We decided to bring Janelle's christening forward as we didn't know how much time we had left with her..... it was a lovely day with mixed emotions and Janelle looked beautiful in her white dress and bonnet.

Read more

A Mothers Hope: Part SIX - Clinging to Hope.

Posted by Susie Bartlett on

Part SIX
There is a saying that says that sometimes you have to hit rock bottom, then the only way out is up! I thought we were at the bottom... but we weren't there yet.
.
John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
.
By the time Janelle was approaching five months old, things were deteriorating rapidly. We had strike 1 with the oral steroids, strike 2 with the intravenous steroids and yet nothing was slowly down the growth of the Hemangiomas. Basically we were running out of options. Our congregation at our church had been praying all these months and they decided to spend a day fasting to really cry out to God for Janelle's healing. That night we gathered together for prayer and I was able to take Janelle to be prayed for. I remember an elder in the church praying and mentioning 'having to hit rock bottom'. My immediate thought was that we were at rock bottom and God was going to now give us a miracle! The elder then went onto pray that we weren't there yet.... sadly he was right and again God was preparing me for battle.
Every week we were either in the hospital or visiting doctors. Appointments with the eye clinic on one floor, the haematology clinic on another floor, respiratory doctors, paediatricians, plastic surgeons, nutritionists, physiotherapists; the list went on. The nurses got to know us really well and loved Janelle, even the hospital staff fell for her. I was growing in knowledge about her condition and had become concerned about the possibility of the birthmark behind her eye growing back into her brain. So I asked the doctors about this. One said it was impossible because a plate of skull protected it and the other said it was a 'one in a million' chance and not to worry about it. In the meantime they had decided to try and inject steroids directly behind the eye, to try and attack the multiplying vessels. They prepared her for surgery and took a Catscan beforehand. So there I was, sitting in the waiting room alone, anxiously looking for the doctor to come out and tell me it was a success. However he came out sooner than expected, still dressed in his operating greens, that funny hat shaped like a shower cap and those little green slippers, he obviously had come directly to find me. He then told me they had canceled the procedure. Another strike! The Catscan taken beforehand had shown a shadow in the brain cavity and they were now concerned this was the birthmark behind the eye. Janelle was now life threatened and could pass away at any given time.
If they injected the steroids behind the eye, that tiny needle prick could cause haemorrhaging and she would never make it out of theatre. Maybe this was rock bottom?
Later that day Janelle's daddy came into visit on his own, I told him the news. He cried so hard I had to pull the curtains around us for privacy as we were always in a shared ward. That evening, when the doctor came to speak to us and answer all our questions, he went to great lengths to reassure us that our darling baby was in the best possible hands she could be in and they were doing everything to care for her. It was ironic though, because while he was still talking to us out in the hallway, a nurse approached and regretfully said she had accidentally just given Janelle the medicine intended for the baby in the opposite cot! Sometimes the timing of situations during trials is just ridiculous! Thankfully the medicine had no adverse effect on Janelle and again we were back to the drawing board, looking for a cure and running out of time.
.
We decided to bring Janelle's christening forward as we didn't know how much time we had left with her..... it was a lovely day with mixed emotions and Janelle looked beautiful in her white dress and bonnet.

Read more


A Mothers Hope: Part 5 - Standing firm on HOPE

Posted by Susie Bartlett on

PART FIVE
.
Confidence is hard to grasp and hang onto, when those you put your confidence in, are all searching in the dark.
.
Proverbs 3:5-6 Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your path.
.
By four months old Janelle's condition was deteriorating and the oral steroids had failed. The next step was to inject steroids intravenously. This meant being admitted to hospital, having the steroids administered through a drip, being very closely monitored for 24 hours, then getting sent home because her immunity was compromised and the risk of catching something in hospital was too high. We then had to stay housebound for six days, had a couple of days of freedom, then back to the hospital to repeat the process. Again it was trial and error with risks and side effects involved. Unfortunately after about four rounds, it didn't change anything, the aggressive condition grew and it was now termed 'Massive Hemangioma'.
During this time we had an unscheduled emergency trip to casualty one night. Blood tests, catscans, photos and measurements were constantly taken to monitor growth or possible regression, so while cooking dinner one Friday night, I got a call from the hospital. They had received some blood test results back and it was showing that Janelle had developed Galactosemia. This is a rare genetic, metabolic disorder that affects an individual's ability to metabolise the sugar galactose properly. I was told to put Janelle in the car immediately and drive directly to the hospital or else she could be brain, kidney or liver damaged within hours.... I left straight away and contacted our Pastors, John and Jocie, to pray. I was also praying most of the trip, and was determined to get there as quick as possible. However I came across police, breathalyser testing, and there was a queue of about ten cars. I didn't hesitate when I bypassed the line, drove straight up to the officer and told him I had a sick child in the backseat. He only had to take a glance back there and told me to drive safe and be on my way. At the hospital we were rushed into casualty where we met the doctors who told me the tests were positive for Galactosemia, however they would take blood again for further testing....it would be midnight before the results would come back. I can honestly say those four hours were consumed with the most powerful prayer time that I have ever had. I stood firm, declaring my baby had enough to deal with and she would not have this disease. On and on I prayed out loud, I don't know what the people in the next cubicle thought, but I didn't care. I had had enough and I wasn't taking it anymore! Midnight came around and so did the doctors, with the wonderful news that she was clear and could go home. They had no explanation for it, what had shown to be there was now gone. It was an amazing victory in a valley full of tribulations.
.
By this stage Janelle's eye was pushed quite a distance from her face, kind of like half a tennis ball was under her skin. This made it impossible for her to shut her eye. During the night I had to set the alarm to put drops in her eyes to prevent it from drying out. More than once, on the rare occasion that I was home, I would promise my other two children that in the morning mummy would take them to the park and we would have a day of fun together. However Janelle's eye or breathing would deteriorate during the night and by morning when the children awoke, Janelle and I would be gone back to the hospital. It broke my heart. One time the ambulance was called because Janelle started vomiting up blood, there was always a risk that at any given time the birthmarks would rupture and she would haemorrhage. Just one more thing to worry about and add to the list of concerns a mile long. Would this nightmare ever end?
 
 

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A Mothers Hope: Part 5 - Standing firm on HOPE

Posted by Susie Bartlett on

PART FIVE
.
Confidence is hard to grasp and hang onto, when those you put your confidence in, are all searching in the dark.
.
Proverbs 3:5-6 Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your path.
.
By four months old Janelle's condition was deteriorating and the oral steroids had failed. The next step was to inject steroids intravenously. This meant being admitted to hospital, having the steroids administered through a drip, being very closely monitored for 24 hours, then getting sent home because her immunity was compromised and the risk of catching something in hospital was too high. We then had to stay housebound for six days, had a couple of days of freedom, then back to the hospital to repeat the process. Again it was trial and error with risks and side effects involved. Unfortunately after about four rounds, it didn't change anything, the aggressive condition grew and it was now termed 'Massive Hemangioma'.
During this time we had an unscheduled emergency trip to casualty one night. Blood tests, catscans, photos and measurements were constantly taken to monitor growth or possible regression, so while cooking dinner one Friday night, I got a call from the hospital. They had received some blood test results back and it was showing that Janelle had developed Galactosemia. This is a rare genetic, metabolic disorder that affects an individual's ability to metabolise the sugar galactose properly. I was told to put Janelle in the car immediately and drive directly to the hospital or else she could be brain, kidney or liver damaged within hours.... I left straight away and contacted our Pastors, John and Jocie, to pray. I was also praying most of the trip, and was determined to get there as quick as possible. However I came across police, breathalyser testing, and there was a queue of about ten cars. I didn't hesitate when I bypassed the line, drove straight up to the officer and told him I had a sick child in the backseat. He only had to take a glance back there and told me to drive safe and be on my way. At the hospital we were rushed into casualty where we met the doctors who told me the tests were positive for Galactosemia, however they would take blood again for further testing....it would be midnight before the results would come back. I can honestly say those four hours were consumed with the most powerful prayer time that I have ever had. I stood firm, declaring my baby had enough to deal with and she would not have this disease. On and on I prayed out loud, I don't know what the people in the next cubicle thought, but I didn't care. I had had enough and I wasn't taking it anymore! Midnight came around and so did the doctors, with the wonderful news that she was clear and could go home. They had no explanation for it, what had shown to be there was now gone. It was an amazing victory in a valley full of tribulations.
.
By this stage Janelle's eye was pushed quite a distance from her face, kind of like half a tennis ball was under her skin. This made it impossible for her to shut her eye. During the night I had to set the alarm to put drops in her eyes to prevent it from drying out. More than once, on the rare occasion that I was home, I would promise my other two children that in the morning mummy would take them to the park and we would have a day of fun together. However Janelle's eye or breathing would deteriorate during the night and by morning when the children awoke, Janelle and I would be gone back to the hospital. It broke my heart. One time the ambulance was called because Janelle started vomiting up blood, there was always a risk that at any given time the birthmarks would rupture and she would haemorrhage. Just one more thing to worry about and add to the list of concerns a mile long. Would this nightmare ever end?
 
 

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A Mothers Hope: Part FOUR - Hope on the fifth floor.

Posted by Susie Bartlett on

Beauty is in the eyes of the beholder, and even as the Hemangiomas grew, to me Janelle was absolutely gorgeous.... But others weren't so kind.
.
Song of Solomans 4:7 - You are altogether beautiful, my darling, there is no flaw in you.
.
Over the next months Janelle's features did change drastically. Her eye started protruding, along with the surrounding skin. Her cheek also got fuller on the right side, therefore drooping that side of her mouth. The external birthmark on her nose became raised and bright red and her breathing got heavier. Our church congregation would see her when we weren't in the hospital and they were praying for her all the time, but it seemed like the harder they prayed the worse she got. I was isolated in the hospital as mobile phones weren't around and it was over an hours travel for friends to visit. I often had to make decisions on my own on what to do, so I just followed what the doctors said - after all they were the experts.
The length of time we stayed in the hospital was getting longer and I missed my other children.... they also wanted and needed their mummy. Their dad would drop Janelle's older brother Ben off at prep and her sister Katie at daycare. He would then go to work and pick them up later that day. Every few days they all made the trip to come and see us. I recall one day standing on the hospital flight of stairs, between the floors, and looking out the window. Down below was the city with hundreds of people going about their business, unaware of the families going through torment within the walls of this old building.  I felt like no one cared, like we were living in a different world.
We now had a entourage of doctors and specialists that would visit Janelle. Our two main ones were Dr Kemp, Janelle's paediatrician, and Dr Elder, her eye doctor. Funny how I can still remember their names, all these years later. We also had doctors come from other hospitals to see this rare baby with the birthmarks. One day, there must have been eight doctors circling Janelle's little cot, she loved the attention! I would sleep in that cot every night. The nurses would put Janelle in a medium size one so I could fit too, if I wanted to stretch my legs out, I had to bend at the hips.
The first approach of attack on Janelle's Hemangiomas was oral steroids, however this caused terrible ulcers in her throat and mouth. These were extremely painful and before feeding Janelle, I had to put numbing gel in the back of her throat with a big, long cotton bud. However the ulcers got worse and her crying was constant. I would walk, and walk, and walk Janelle at night in the corridor, trying to comfort her, I was so tired and felt hopeless not being able to soothe my baby. Watching the clock became a habit, as I was praying the time would past quickly so the nurses could give her the next lot of painkillers. Soon after that, they stopped the oral steroids. Janelle also wasn't coping with the lactose in my breast milk, so at 3 months old they recommend I bottle feed her.... to say I was devastated was an understatement, I loved breastfeeding. It was just another blow to an already terrible situation.
When we did get to go home people were starting to stare at my baby, even going to the supermarket was never pleasant. Some would make comments, jokes or just steer their children away. Unbeknown to me, word was getting around Ben's school that I bashed her. One time, an older lady approached us to look at Janelle in her pram, and asked what was wrong with her. After me going to all the trouble of explaining her medical condition, she went on to say that she thought my boyfriend had bashed her.... she didn't even credit me with being married. I faced a lot of that over the early years of Janelle's life, but God always gave me the tolerance to never snap back at people. I understood that they were shocked to see a baby so disfigured and spoke before they had time to think, I can't blame them for that. I found it fascinating though that Janelle's brother and sister never saw that she was different, they had always known her like that, so it was normal for them.
The worst blow about Janelle's appearance came from someone who should have known better, a relieving doctor. While visiting in the hospital on his rounds, and after discussing her condition with me, his comment was, 'you think she looks ugly now, wait until she is older!' He had an English accent, so thinking I had misheard him, I asked him to repeat himself, and word for word he said it again! In what must have been micro seconds, three things went through my mind. First, I wondered if I could punch his face from across the cot. Then I thought I might start screaming and put on such a scene, that everyone would come running. But finally I decided to tell him that the top doctors in the country had assured me that with cosmetic help, she would look fine. However, I later reported him to my doctor, who was very mad and promised he wouldn't get away with upsetting me. Looking back now by this stage I was getting depressed and little things like that were not helping.... in fact nothing was helping. Living on the fifth floor of the hospital was not the most uplifting place to be and each day was a struggle to not suffocate in the grief that floated in and out of each ward.  Yet God had me in His arms, it was the Lord who held me together.
Read part 5 here 
 

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A Mothers Hope: Part FOUR - Hope on the fifth floor.

Posted by Susie Bartlett on

Beauty is in the eyes of the beholder, and even as the Hemangiomas grew, to me Janelle was absolutely gorgeous.... But others weren't so kind.
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Song of Solomans 4:7 - You are altogether beautiful, my darling, there is no flaw in you.
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Over the next months Janelle's features did change drastically. Her eye started protruding, along with the surrounding skin. Her cheek also got fuller on the right side, therefore drooping that side of her mouth. The external birthmark on her nose became raised and bright red and her breathing got heavier. Our church congregation would see her when we weren't in the hospital and they were praying for her all the time, but it seemed like the harder they prayed the worse she got. I was isolated in the hospital as mobile phones weren't around and it was over an hours travel for friends to visit. I often had to make decisions on my own on what to do, so I just followed what the doctors said - after all they were the experts.
The length of time we stayed in the hospital was getting longer and I missed my other children.... they also wanted and needed their mummy. Their dad would drop Janelle's older brother Ben off at prep and her sister Katie at daycare. He would then go to work and pick them up later that day. Every few days they all made the trip to come and see us. I recall one day standing on the hospital flight of stairs, between the floors, and looking out the window. Down below was the city with hundreds of people going about their business, unaware of the families going through torment within the walls of this old building.  I felt like no one cared, like we were living in a different world.
We now had a entourage of doctors and specialists that would visit Janelle. Our two main ones were Dr Kemp, Janelle's paediatrician, and Dr Elder, her eye doctor. Funny how I can still remember their names, all these years later. We also had doctors come from other hospitals to see this rare baby with the birthmarks. One day, there must have been eight doctors circling Janelle's little cot, she loved the attention! I would sleep in that cot every night. The nurses would put Janelle in a medium size one so I could fit too, if I wanted to stretch my legs out, I had to bend at the hips.
The first approach of attack on Janelle's Hemangiomas was oral steroids, however this caused terrible ulcers in her throat and mouth. These were extremely painful and before feeding Janelle, I had to put numbing gel in the back of her throat with a big, long cotton bud. However the ulcers got worse and her crying was constant. I would walk, and walk, and walk Janelle at night in the corridor, trying to comfort her, I was so tired and felt hopeless not being able to soothe my baby. Watching the clock became a habit, as I was praying the time would past quickly so the nurses could give her the next lot of painkillers. Soon after that, they stopped the oral steroids. Janelle also wasn't coping with the lactose in my breast milk, so at 3 months old they recommend I bottle feed her.... to say I was devastated was an understatement, I loved breastfeeding. It was just another blow to an already terrible situation.
When we did get to go home people were starting to stare at my baby, even going to the supermarket was never pleasant. Some would make comments, jokes or just steer their children away. Unbeknown to me, word was getting around Ben's school that I bashed her. One time, an older lady approached us to look at Janelle in her pram, and asked what was wrong with her. After me going to all the trouble of explaining her medical condition, she went on to say that she thought my boyfriend had bashed her.... she didn't even credit me with being married. I faced a lot of that over the early years of Janelle's life, but God always gave me the tolerance to never snap back at people. I understood that they were shocked to see a baby so disfigured and spoke before they had time to think, I can't blame them for that. I found it fascinating though that Janelle's brother and sister never saw that she was different, they had always known her like that, so it was normal for them.
The worst blow about Janelle's appearance came from someone who should have known better, a relieving doctor. While visiting in the hospital on his rounds, and after discussing her condition with me, his comment was, 'you think she looks ugly now, wait until she is older!' He had an English accent, so thinking I had misheard him, I asked him to repeat himself, and word for word he said it again! In what must have been micro seconds, three things went through my mind. First, I wondered if I could punch his face from across the cot. Then I thought I might start screaming and put on such a scene, that everyone would come running. But finally I decided to tell him that the top doctors in the country had assured me that with cosmetic help, she would look fine. However, I later reported him to my doctor, who was very mad and promised he wouldn't get away with upsetting me. Looking back now by this stage I was getting depressed and little things like that were not helping.... in fact nothing was helping. Living on the fifth floor of the hospital was not the most uplifting place to be and each day was a struggle to not suffocate in the grief that floated in and out of each ward.  Yet God had me in His arms, it was the Lord who held me together.
Read part 5 here 
 

Read more