12 Nov 2009
Today I went to the hospital to see my baby nephew "Kareem" who was born the day before while I was travelling. The doctor was examining
him and I heard his mum crying: he is Down’ isn’t he? Her voice was full of
mixture of knowledge (she is a paediatrician) and false hope. The kind doctor
said yes but we will do further tests. He left and I held the baby while mum
was on the telephone to give the "sad" news to the baby’s dad who is working in
another country.
Holding the babe was an amazing moment for me. I
could feel floods of love pouring from every cell in me towards the baby. I
nicknamed him Boos (kisses) feeling that I want to cover him with kisses except
that he was too pure to kiss more than his tiny feet.
Since that moment I am still struggling to believe
that there is possibly more love (at least his parents) that exceeds the
feeling I have for him.
Dec 2009
Bebs (I keep inventing more derivatives from the original nick name I gave him!) is home but he is not growing very well and we
are worried. His mum spends 2 hours a day pumping breast milk in bottles to
save him the trouble of breast feeding as he is finding it difficult and we are
worried that he would be advised to go for bottle feeding.
Dec 2009
Bebs had a heart echo. His 4 heart chambers are almost one -basically they are not separated as in normal heart and he is lacking one valve. Therefore his body and brain are not
getting enough oxygenated blood and that is part of his lack of growth. We
start the saga of fixing a date for his heart surgery. Every time the hospital
gives us a date, mum and baby go to stay a day or two to prepare for op. Then
Bebs gets a fever and op date gets cancelled.
May 2010
Now we are in May 2010 when another saga started. Our local hospital stopped performing open heart surgery for babies and we were referred to Southampton hospital (two hours away from us). So we had to have a more complicated arrangements: I took time off work in order to accompany mum and baby to the Southampton hospital while his brother Shadi stayed with our other sister.
At Southampton, Bebs got a date for the operation but in that morning he developed a fever. More blood tests from his tiny veins revealed no infection. Then they decided to test his urine by taking a sample through inserting a needle in his tummy to go straight to his bladder. That was really a horrible procedure which resulted in nothing- no urine came out to be tested.
His mum tried hard to convince the surgeons that Bebs had no infection but his slightly high temperature was due to dehydration that needed fluids and that the baby was ready for the operation but none would listen. She cried her heart out as she became really worried about his health with his heart condition stopping him growing.
At Southampton, Bebs got a date for the operation but in that morning he developed a fever. More blood tests from his tiny veins revealed no infection. Then they decided to test his urine by taking a sample through inserting a needle in his tummy to go straight to his bladder. That was really a horrible procedure which resulted in nothing- no urine came out to be tested.
His mum tried hard to convince the surgeons that Bebs had no infection but his slightly high temperature was due to dehydration that needed fluids and that the baby was ready for the operation but none would listen. She cried her heart out as she became really worried about his health with his heart condition stopping him growing.
On top of all that he had some sensitivity to formula milk which was not detected early despite mum's concerns. He was fed through a nasal tube even when he was home. but that is another story!
Finally the day came and he had his operation. His dad flew to England and he was with his baby immediately after the operation.
At last he came out of the operating theatre and we were told that he was fine!
OMG at last his hear started to pump enough blood with oxygen to his body and to his brain so we could hope that he starts to catch up on mental and physical development.
Finally the day came and he had his operation. His dad flew to England and he was with his baby immediately after the operation.
At last he came out of the operating theatre and we were told that he was fine!
OMG at last his hear started to pump enough blood with oxygen to his body and to his brain so we could hope that he starts to catch up on mental and physical development.
After the hear operation in his car seat ready to go home-at last!
