This morning, I had an ahah moment. I seem to see the pieces coming together. The real reason why I wanted to start blogiing was to share our experience with other people. Not that we are experts or anything but just to be an encouragement to others like us. You see we have been held back by fears of the unknown, but everyday as I read and have read many families share,I hear the nurge to share our story.
You see our beloved daughter Samara who's name means 'protected by God' was born normal and we were all very excited. We went home and even had our first family holiday in April of that year. When we came back,in May Samara had a throat infection and somehow our doctor could not be traced. We drove her to doctor's plaza and Alex perused through names of doctors and finally settled for one. When our turn reached, we went in, explained the baby's throat issue and how she had been vomitting. The doctor asked us to place her on the bed and she looked at her throat but seemingly had an interest around the chest. She asked whether the child had a murmur and we said not that we knew. That question threw me into a panic and she said that she could hear an abnormal heart beat and once we treat the throat infection then we can go see a cardiologist. We thanked her and the frightened us walked to the car in shock. We booked an appointment with our doctor and when we told him what the other doctor suggested he was equally shocked, tried to listen for the abnormality but couldnt hear anything. He was in denial because, she had been growing very well, no symptoms at all. He however said to rule out anything we needed to go visit a cardiologist. We booked an appointment for saturday and they fixed all this things on baby girls chest trying to get a print out of her heart beat. Well samara the active one couldnt settle down but somehow the echo helped and there were some results.
I shall never forget the expression on the doctor's face and the words that followed. Its like when you have done a test and you are so anxious about the results and hope that you have passed. The doctor confirmed our fears and said that yes there was a hole in the heart as requested to check...I almost passed out. We were too shocked to cry, we were there holding baby girl at the time 5 months and now there was a hole...what caused it? what does that mean? The questions just followed and our lives were never the same again.
The cardiologist explained that out of the holes in the heart, our baby girl had the best...ok its still a hole. She said that the hole is slightly big and would require a heart surgery to be closed. She continued to explain that no one can explain what causes ASD/holes in the heart (that really didn't help much). So she said the surgery would cost about Kshs 500,000 and would be best when baby girl is 2years just before joining kindergaten where they pick all sorts of germs and flues which would strain her heart... I don't quite remember much after that but I remember us crying and crying.
I held our baby girl at home and cried. I asked God how could this be? We attended all the antenatal clinics, we heard her heart beat, we prayed for her growth and organs everyday from when she was conceived, she scored highly at birth, she had grown so well and then a hole in the heart. I was frightened, I wondered whether she would die, I saw all the negatives. The second hardest part was to share the news with our families. How do we tell them what we barely understand, we scheduled meetings with them and broke the news to them. We cried together and fell back on the fact that there is a God who listens.
We spent many days in tears, all we wanted to do was hold her and hug her. I called to God when she was in my arms and confessed how frightened I was. Am not sure whether the fact that the operation would be done after 2 made things better? For me it was worse..why because it was like a cloud hanging over our heads, I wished it could be done sooner but 2 was the best time. So after this dark period, we moved on with our lives having changed and made a decision that we shall not view her any differently, she was the most beautiful girl in the whole world, our jewel and gift and that noone would stigmatise her. We were to see the doctor after 3 months I think.
We went for the review, always nervous and the doctor was abit concerned that she had noted some blueness.She asked us to return the next day and when we did she hardly took half hour and said teh baby was fine. She gave her some medicines and we went home. That particular drug cost us Kshs 4,500 and the ECHO cost Kshs 11,000. These appointments are costly but somehow the Lord provided. The drugs somehow did work well with samara and would really make her temparatures go down to a worrying degree and we stopped.We also made a decision to change the doctor and got another who was easy and assured us all was well. He suggested that we opt for surgery in India which was known for better experience and facilities. He said it would cost about USD 10,000. Where would we get all that money?
Well days went by, we adjusted to the news and loved our girl to pieces. She continued to make major milestones ahead of her agemates and people were totally amazed oblivious of the ASD. The only thing that we struggled with most was the weight gain issue. It saddened my heart that no matter how much she fed, clinic visits were always a disaapointment, her weight gain was slow but we knew why. Somehow God turned the tables and she has grown and we thank God.
You see our beloved daughter Samara who's name means 'protected by God' was born normal and we were all very excited. We went home and even had our first family holiday in April of that year. When we came back,in May Samara had a throat infection and somehow our doctor could not be traced. We drove her to doctor's plaza and Alex perused through names of doctors and finally settled for one. When our turn reached, we went in, explained the baby's throat issue and how she had been vomitting. The doctor asked us to place her on the bed and she looked at her throat but seemingly had an interest around the chest. She asked whether the child had a murmur and we said not that we knew. That question threw me into a panic and she said that she could hear an abnormal heart beat and once we treat the throat infection then we can go see a cardiologist. We thanked her and the frightened us walked to the car in shock. We booked an appointment with our doctor and when we told him what the other doctor suggested he was equally shocked, tried to listen for the abnormality but couldnt hear anything. He was in denial because, she had been growing very well, no symptoms at all. He however said to rule out anything we needed to go visit a cardiologist. We booked an appointment for saturday and they fixed all this things on baby girls chest trying to get a print out of her heart beat. Well samara the active one couldnt settle down but somehow the echo helped and there were some results.
I shall never forget the expression on the doctor's face and the words that followed. Its like when you have done a test and you are so anxious about the results and hope that you have passed. The doctor confirmed our fears and said that yes there was a hole in the heart as requested to check...I almost passed out. We were too shocked to cry, we were there holding baby girl at the time 5 months and now there was a hole...what caused it? what does that mean? The questions just followed and our lives were never the same again.
The cardiologist explained that out of the holes in the heart, our baby girl had the best...ok its still a hole. She said that the hole is slightly big and would require a heart surgery to be closed. She continued to explain that no one can explain what causes ASD/holes in the heart (that really didn't help much). So she said the surgery would cost about Kshs 500,000 and would be best when baby girl is 2years just before joining kindergaten where they pick all sorts of germs and flues which would strain her heart... I don't quite remember much after that but I remember us crying and crying.
I held our baby girl at home and cried. I asked God how could this be? We attended all the antenatal clinics, we heard her heart beat, we prayed for her growth and organs everyday from when she was conceived, she scored highly at birth, she had grown so well and then a hole in the heart. I was frightened, I wondered whether she would die, I saw all the negatives. The second hardest part was to share the news with our families. How do we tell them what we barely understand, we scheduled meetings with them and broke the news to them. We cried together and fell back on the fact that there is a God who listens.
We spent many days in tears, all we wanted to do was hold her and hug her. I called to God when she was in my arms and confessed how frightened I was. Am not sure whether the fact that the operation would be done after 2 made things better? For me it was worse..why because it was like a cloud hanging over our heads, I wished it could be done sooner but 2 was the best time. So after this dark period, we moved on with our lives having changed and made a decision that we shall not view her any differently, she was the most beautiful girl in the whole world, our jewel and gift and that noone would stigmatise her. We were to see the doctor after 3 months I think.
We went for the review, always nervous and the doctor was abit concerned that she had noted some blueness.She asked us to return the next day and when we did she hardly took half hour and said teh baby was fine. She gave her some medicines and we went home. That particular drug cost us Kshs 4,500 and the ECHO cost Kshs 11,000. These appointments are costly but somehow the Lord provided. The drugs somehow did work well with samara and would really make her temparatures go down to a worrying degree and we stopped.We also made a decision to change the doctor and got another who was easy and assured us all was well. He suggested that we opt for surgery in India which was known for better experience and facilities. He said it would cost about USD 10,000. Where would we get all that money?
Well days went by, we adjusted to the news and loved our girl to pieces. She continued to make major milestones ahead of her agemates and people were totally amazed oblivious of the ASD. The only thing that we struggled with most was the weight gain issue. It saddened my heart that no matter how much she fed, clinic visits were always a disaapointment, her weight gain was slow but we knew why. Somehow God turned the tables and she has grown and we thank God.
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