* Dedicated to Ayla *

So, we left only 2 days after Ayla's 1st birthday. Everyone I expected to come, came. I am still happy with how the birthday party had been. Poor Ayla, she had bloody diarrhea and she was squirming and whining throughout the 7 hours flight. And although I had prepared an appointment letter that clearly stated that I was with a sick baby, I forgot to show this letter to the custom officer and they had held us up and we came out the last from the airport (for bringing more than allowed cigarettes into the country). Ayla was suffering a lot during that long flight & long wait. I could cry thinking how much suffering I had put Ayla for that journey. I finally saw blood in her diaper around midday (1st day) and we took her down to see our GP and he said to go straight to the emergency section in Royal Children's Hospital. Ayla was poked many times because the nurses and doctors there weren't sure what's causing Ayla's bloody diarrhea. They had to squeeze Ayla's tummy to see if it was hard or not. If it was hard, she could have typhoid fever. You could tell Ayla didn't like what they were doing to her. Ayla was discharged home, the hospital noting that Ayla was going to see a cardiologist the day after and a sample of Ayla's stool was taken to determine the cause of her bloody diarrhea. The doctor in charge called the hospital's pediatrician to sum up what's happening to us. He said, Ayla was not having typhoid fever but they were not sure what's causing the bloody diarrhea and that's why they wanted us to come back to the hospital on Friday (it was Tuesday when we arrived). No medicine was given to Ayla because wrong medication could severe the diarrhea.

The next day, we took her to see Dr. TH. Goh, the cardiologist I had been corresponding with since I found out about Ayla's PDA. Ayla went thru a series of test: heart ECG and echocardiography (like ultrasound but for heart). She cried and cried because she had had a fever and she remembered people with the same uniform (white-doctor-collars) poked her the day before and she just wouldn't cooperate with the echo cardiographer. Dr. TH Goh later came in and had to do the rest of the test. However, he said we had to come back only when Ayla had recovered from her bloody diarrhea because they could not get the correct test results if Ayla kept crying like that. As crying causes heartbeats to be inconsistent. Dr. TH Goh told us to come back next Monday. That was a week delay from our original plan. Days passed and although Ayla's stool wasn't as bloody as the 1st day, it still sometime had a show. Friday came and we Ayla were finally discharged with an antibiotic prescription.

Instantly, we could say Ayla was better already after taking the antibiotic. The stool test result came back negative, meaning no bugs found in it. So, Dr. Kelly concluded that it was either bad gastroenteritis or there were some bad bacteria in Ayla's stomach. He even asked about Ayla's one week history and we concluded maybe someone had given Ayla something during her birthday party and that particular someone didn't wash his/her hands before giving food to Ayla! Thus the bacteria. I can't stand people who don’t care about hygiene being around babies! If you were not clean enough to yourself, at least keep your hands away from babies!

Monday, we took Ayla for another heart test and it came back good enough and Dr. Goh told us that Ayla would need a procedure. He told us maybe there was a small chance that Ayla would need a surgery because her PDA (http://tchin.org/resource_room/c_art_16.htm) was considered large. Throughout that week, we fought our way so that Dr. TH Goh could be the doctor who did Ayla's procedure. Unfortunately, it was against Royal Children's Hospital's regulation that a doctor who is already retired is considered non-employee and therefore Dr. TH Goh wasn't allowed to do a procedure on Ayla. I even went as far as calling the head of cardiology department in Royal Children's Hospital. Moreover, we had to wait for the device new shipment to come in before Ayla could go into a procedure. The stock they had was withdrawn because of an issue of hygiene (it was not sterilized enough). I don't know whether we should consider that week to be a waste. I always enjoy being with Ayla and I miss being with her like that (while we were in Melbourne) again. From the 1st of November, we had moved into my friend's house because we couldn't stay during the period of Melbourne Cup. They were fully booked out on the 6-7th November and my initial booking was only up to the 30th October. We thought, we should move into my friend's house from the 1st because we wanted Ayla to have enough time to adapt to moving into a new place and most importantly, to save any money left we had. We planned to move back into the hotel on the 8th which was the same day with Ayla's hospital admission.

Another doctor was appointed to do a procedure on Ayla, but he was going to Thailand for a convention for a week! We had to wait for him to come back. Finally, on the 6th November, we took Ayla for tests in hospital. She had to endure ECG, echocardiography, x-ray, blood tests and she cried and cried when the big hollow needle went into her hand's vein. The doctor and nurses explained that it is hard to draw blood out from babies' vein and they had put sedative cream on Ayla and that she was screaming and crying because we had to hold her down and NOT from the needle going in.

On the 8th, we woke up at 5am and we packed our last thing. Basically we took almost all our stuff into my friend's place and since my friend lives near our old Chadstone mall where I used to live while I was pregnant, the stuff grew. I bought plenty of stuff for Ayla and it was quite a packing on the 8th. Luckily, Ayla was very cooperative although she was fasting (or maybe she was too hungry to make a mess?). Before 7am, we were already at the hospital admission. At around 8am, a team of 2 anesthetists came into operation waiting room and asked some questions regarding Ayla's allergy and how we first found out she had a congenital heart disease. At around 8:45am a nurse came into the waiting room and said, "They are ready for Ayla" and we were brought to this waiting room with a a big operating theatre door and a couple of beds against the wall. One bed said "Ayla" and the nurse said, "You could leave all Ayla's stuff here because this bed is going to be with her all the time." and I was already really worrying. Lucky Ayla was too small to know what was going to happen, she walked around the room, exploring! A saw another boy, around 5-6 years old, he was crying and asking his father to take him home. He knows what was going to happen and his procedure was only going to take him down for like 15 minutes. Ayla was going to be down for up to 2,5 hours. Then, the 2 anesthetists came up and push Ayla's operating bed while I carried her. They took us into this tiny room with lots of operating equipment, from operating robe to masks and tubes and everything. They told me to put Ayla on the bed and one of the anesthetists was getting a sedative mask ready for Ayla. As if knowing I was going to leave her with someone else, Ayla cried, but fortunately, it sped up the sedative gas. It didn't take her 1 minute to go into sleep. Then they pushed my baby into the operation theatre. The other anesthetist who wasn't holding the sedative mask sent me out saying, "You don't need to come back before 2 maybe 2,5 hours. If anything happened and if we couldn't find you at the waiting room, we would call your mobile phone... She is going to be fine." And I felt relieved and we went down to McDonald to have breakfast and we went to Kmart about 10 minutes drive from the hospital. I know where Kmart around that area because I used to live around that area for 3 years before moving into the apartment behind CROWN.

We were back about 2,5 hours after and I met this couple and we made friends. Their baby was undergoing a 6-hour 1st cleft palate reconstruction operation (there are 3 operations in total before the baby turn 7 years old to fix a cleft palate and each takes 6-7 hours). Their baby was only 6 months old. After 3,5 hours, Mini (if I didn't get her name wrong) said, "You should go inside and ask what is happening with Ayla" and I went in (finally after Mini had nagged me for 1/2 hour to go ask) and a receptionist replied that Ayla was in a good hand and she had not come out yet. I went out and Mini was furious with me! She said, "How could you be satisfied with that answer? It's your baby and they promised you it was a 2,5 hours operation and this is almost 4 hours and she has not come out yet?!", then she took my hand and took me into the receptionist again and had me said, "I want someone to go into the operation theatre to find out what's happening with my baby because it was supposed to be a 2,5 hours procedure only." The reception called and then she replied that the doctor himself is coming out to talk to me. At this point, I was going to faint!!! Lucky it didn't take him long and he pushed a chair for me and Mini helped me to sit down and he said, "Ayla is fine now... It took us a great deal of work because a complication took place ..." and I was choked. Mini pressed my hand and said gently, "Listen ..." Prof Wilkinson continued, "We put in a device, a smaller one to close her duct. It was not stable and we weren't happy, so we took it out. Then we tried a bigger one and it sat nicely closing the duct but it was blocking the main aorta, so we took it out again. Then we went back trying another smaller piece and it went perfectly fine until blood pressure from the heart flushed it away into Ayla's right lung. At that point, it was trouble. We called surgeons because if we couldn't retrieve it from her lung (in maximum of an hour), we would have to operate on her... Fortunately, we were able to retrieve the device back (in less than an hour) and finally we tried on the bigger device again and it sits nicely with no significant blockage caused of it. So, we are finished with Ayla. We have closed the duct, but NOT without a lot of trouble..." And he let out a relieved sigh. "One thing though, we will need to send Ayla to ultrasound to see if there was any internal bleeding because we went back and forth in her vein and during retrieval of the device which went to her right lung, we might have punctured her vein around her tummy. She was anemic, too so she had blood transfusion prior to the procedure." I said my thank you and asked when I could she my baby and he replied maybe in about 15 minutes because the operation team was dressing Ayla's puncture wounds. So, I went back to the waiting room and saw Dennis returning from moving car park and told him what happened. Later in the ward, we were told not to use mobile phone because a lot of monitoring device would be disrupted by our mobile phone's signal.

Ayla had her ultrasound later in the afternoon and THANX GOD there was no so such thing as internal bleeding, but she was not allowed to go home since they still had to keep a close look on any side effects caused by the complication. The next day (9th November), Ayla had ECG test, echo test, another ultrasound test and had her first aspirin (to help prevent blood clot) and her IV drip taken out. And the final ultrasound showing Ayla to have no internal bleeding and the doctors and nurses prepared paper works for Ayla to be able to go home that evening. We only stepped into the hotel after 6pm on the 9th so our stuff stayed on the car while we were in the hospital.

On the 10th, Ayla had another echo and ECG test with Dr. TH Goh and he concluded, "Well, what you were set up to come to Australia, now the task is done. Mission accomplished. Despite any complication, however small the chance is, it could happen. Be grateful Ayla is now as good as normal baby, without any holes whatsoever in the heart anymore. So, now you all can go home." I like the way Dr. TH Goh put stuff like that. It was like a closure to me. The closure I had been waiting for. Now we have it. Now we're normal. I am glad it's all over. I pray and pray for those mothers who are not as lucky as me... For them to be given strength they need to fight the disease with their precious and strong babies. To understand that not everyone is given this privilege to understand how mighty and how omnipotent God is. Pray and pray and I hope their hopes will come true, too. To bring home a healthy baby. To be able to put in history and close the book on "Living with a baby with congenital heart disease".

Ayla gained 0,8 kg one week after the procedure.