Cecilia had already been one week in Bay one when her SATS started to drop below her low limit of 88 (SATS can only be as high as 100) but because they would pick up immediately they were not too concerned. The nurses said that it was quite normal for premature babies, so they would keep an eye on her
On the morning of the 11th August 2008, when I walked in the Bay Cecilia was not there. The first thing that I said was “Where is my baby?” As I started to panic and cry the nurse that was looking after Cecilia that morning walks in to tell me that Cecilia had to be moved back to Bay 8 (NICU) because her SATS were below 88 and she had a high temperature (for babies the range is 36.5º - 37.2º). She told me that it would be better for me to wait for all the blood tests and Lumber Puncture (also called spinal tap) were done before I could came in (usually there is eight isolates in NICU so the space is very limited and tight). Those were one of the longest 20 minutes I had ever had to wait. Also I had no idea of what a Lumber Puncture was so in those 20 minutes I asked my mother what it was and I started to cry again.
For those that do not know and hopefully do not have to experience this procedure, a needle is inserted in to the lower spine to collect a sample of Cerebrospinal fluid. This sample is obtained to detect or rule out suspected diseases or conditions. CSF testing looks for signs of possible infection by analysing the white blood cell count, glucose levels, protein, and bacteria or abnormal cells that can help identify specific diseases in the central nervous system. Most lumbar punctures are done to test for meningitis, but they also can determine if there is bleeding in the brain, detect certain conditions affecting the nervous system.
The patient will be positioned with the back curved out so the spaces between the vertebrae are as wide as possible. This allows the doctor to easily find the spaces between the lower lumbar bones (where the needle will be inserted). Older children may be asked to either sit on an exam table while leaning over with their head on a pillow or lie on their side. Infants and younger children are usually positioned on their sides with their knees under their chin. Cecilia was positioned on her side.
When I was finally able to enter the doctors explained to me that in a couple of hours they would be able to know if there was any indication of infection. If there were they would start with the antibiotics while they waited for the complete bacterial culture which takes 48 hours. They also told me not to worry that this was just part of their procedure to check for all possible diseases or infections, which is quite common for premature babies to catch a few infections while being in hospital.
Two hours later it was confirmed that Cecilia had an infection but they didn’t know where so they started with the antibiotics which should last for five days.
I felt devastated, so guilty. I just felt that this was my entire fault. She has only been experiencing pain since I gave birth to her. Why did this have to happen?
Cecilia was also back on CPAP, the drip and feeds had been stopped again.
I know had to call Manuel and I just didn’t know where to start. Also I didn’t want him to get upset at work but he had the right to know what was going on with her daughter.
I did call him and of course he was upset, especially because we could not be together to support each other.
Around lunch time I went back home to rest and come back during the afternoon with Manuel.
When we went in later that afternoon, Cecilia had been stable and her breathing had improved.
Two days later everything came clear for meningitis and for any brain infections. Infections levels were still high but they could not find out where the infection was. I wasn’t happy with this answer, I wanted to know where the infection was but once again they told me that this was very common.
After five days of antibiotics Cecilia was clear of infections. Now she just needed to get of the CPAP and recover some of the weight she had lost. Two days later Ceci’s SATS started to drop again. Another infection. Tests and antibiotics all over again for another five days.
On the 3rd of September 2008 Cecilia was finally moved out of Bay 8 to Bay 5.
On the 11th of September I was able to give Cecilia a proper bath. It was very exciting and emotional. On the 13th Manuel was able to bath her for the first time and also weighed her. Cecilia was now weighing 1.656kg so hopefully in a week she would be weighing 1.8kgs and they can try to bring her out of the isolate in to an open cot.
Wednesday, January 27, 2010
Sunday, January 17, 2010
The Biggining of our Life in Hospital, continued
After being half an hour in recovery I was then taken to the Ward. I remember feeling so many emotions, happiness, sadness, scared, worried, anxious, etc.
I wasn’t allowed to get up for the day so that meant I would not be able to see Cecilia until the next day. It was horrible, I was in a room with other three women and they were all with their babies. How unfair and painful. Every time I heard a baby cry I would feel so guilty. Also I felt I didn’t have a baby, I still felt pregnant.
It was hard to feel happy every time Manuel would come and tell me how Cecilia was doing and what she looked like. Everyone had been able to see her except for me. After carrying her for 30 weeks, that privilege of being the first one to touch her, look at her had been taken away from me.
But even though I didn’t have Cecilia with me I was suppose to get my milk supply up to speed. Luckily I seemed to have a good supply because as soon as I started messaging my breast colostrum was starting to come out.
Until you have a baby and especially premature, women don’t know how valuable colostrum is. It is like gold!!!! It protects your baby from illness and infection, aids the development of your baby’s eyesight, speech and intelligence. This gold was going to help Cecilia win some of the battles that she would have ahead of her.
Every drop was treated like a litre and we made sure with Manuel that we would catch every single drop.
The next day I was finally able to go and see Cecilia in a wheel chair. I was very nervous and scared. I had a heap of mixed feelings.
At the ward they handed me some booklets, brochures and forms regarding New Born Services and expressing. I tried to read as much as I could and absorbed as much information as I could but my mind and heart were in a different place.
After going down a very long corridor we finally reached the NICU (Neonatal Intensive Care Unit) section of New Born Services. When we got there I was told by Manuel that I had remove my watch and bracelets and ensure that I had my sleeves pulled up every time I would come in to see her. Also it was a must to clean your hands with this smelly and pink disinfectant.
As Manuel wheeled me in the room I did not understand the severity or how intense was the care that Cecilia was receiving.
When I finally got to see Cecilia I was overwhelmed with happiness but sadness at the same time. She looked so tiny and fragile in this little clear box (incubator) full of tubes and wires in and on her body. I felt so guilty that she had to go throw all of this.
Cecilia was not the only baby in NICU which gave me some comfort. I thought that if they were here Cecilia was going to be ok and this was just normal because she was early. Now I know it is not quite like that.
I felt very puzzled because I didn’t know what I was suppose to do and what was going to happen next with Cecilia, the only I knew was the following:
I wasn’t allowed to get up for the day so that meant I would not be able to see Cecilia until the next day. It was horrible, I was in a room with other three women and they were all with their babies. How unfair and painful. Every time I heard a baby cry I would feel so guilty. Also I felt I didn’t have a baby, I still felt pregnant.
It was hard to feel happy every time Manuel would come and tell me how Cecilia was doing and what she looked like. Everyone had been able to see her except for me. After carrying her for 30 weeks, that privilege of being the first one to touch her, look at her had been taken away from me.
But even though I didn’t have Cecilia with me I was suppose to get my milk supply up to speed. Luckily I seemed to have a good supply because as soon as I started messaging my breast colostrum was starting to come out.
Until you have a baby and especially premature, women don’t know how valuable colostrum is. It is like gold!!!! It protects your baby from illness and infection, aids the development of your baby’s eyesight, speech and intelligence. This gold was going to help Cecilia win some of the battles that she would have ahead of her.
Every drop was treated like a litre and we made sure with Manuel that we would catch every single drop.
The next day I was finally able to go and see Cecilia in a wheel chair. I was very nervous and scared. I had a heap of mixed feelings.
At the ward they handed me some booklets, brochures and forms regarding New Born Services and expressing. I tried to read as much as I could and absorbed as much information as I could but my mind and heart were in a different place.
After going down a very long corridor we finally reached the NICU (Neonatal Intensive Care Unit) section of New Born Services. When we got there I was told by Manuel that I had remove my watch and bracelets and ensure that I had my sleeves pulled up every time I would come in to see her. Also it was a must to clean your hands with this smelly and pink disinfectant.
As Manuel wheeled me in the room I did not understand the severity or how intense was the care that Cecilia was receiving.
When I finally got to see Cecilia I was overwhelmed with happiness but sadness at the same time. She looked so tiny and fragile in this little clear box (incubator) full of tubes and wires in and on her body. I felt so guilty that she had to go throw all of this.
Cecilia was not the only baby in NICU which gave me some comfort. I thought that if they were here Cecilia was going to be ok and this was just normal because she was early. Now I know it is not quite like that.
I felt very puzzled because I didn’t know what I was suppose to do and what was going to happen next with Cecilia, the only I knew was the following:
- She weighed 1.108kg and her length was 40.5cm
- Her head circumference was 27cm which apparently was too small
- She was born with her hands and fingers contracted
- Her left kidney was duplex and cystic
- Her ventricles and her heart were large
- She was on CPAP to help her breath
- They were giving her Fat through an IV
- She had a feeding tube, also called Nasogastric Tube (NGT) which they had to put it down through her mouth because her nostrils were too small.
They told me that Cecilia had only been intubated (a tube down her throat so she could breath) for 24 hours when she was born and then they were able to put her on CPAP (Continuos Positive Airway Pressure). Of course I did not understand all this medical jargon and my head was about to explode with so much information.
They were also feeding her 1ml of EBM (Expressed Breast Milk) every hour so they kept on stressing how important I kept up with my supply.
There was so much to take in but at the same time I wanted to know everything there was to know. I am a person that likes to read everything there is out there so I can be well informed. Of course there was no manual or course for this.
I was given a couple of booklets regarding ‘New Born Services’ and when it was time to go home, but these were a high overview.
I was so confused, I didn’t know if I was supposed to be there 24/7, do something, etc. It was so hard.
That day I was able to have my first cuddle with Cecilia. It was wonderful to feel her weight on my chest. I couldn’t stop crying. I couldn’t believe that Manuel and I had created this pressures little princess. She was beautiful in every way.
It was hard for Manuel to leave the hospital every night and go to an empty house; he just wanted stay there with us 24/7. I would have felt much better if he had been able to stay.
I had to at least stay four days in hospital because I had a caesarean so I was able to go and see her as many times as I wanted.
At night I would struggle to get up every 4 hours to express. Not having someone to get up to is very hard and sad.
Already I had to deal with all the post birth symptoms that all women go through, hormones all over the place, pain from surgery or natural birth, breast pain, issues with bawl movement plus I had to deal with everything that was going on with Cecilia and that I was not going to be able to take her home when I was going to be discharged.
Luckily Cecilia was doing well, her feeds had been increased gradually, she had passed urine, had bawl movements and she had opened her eyes.
Day four come up and I had to leave. I was able to hire a breast pump from New Born Services and I bought the pump set which I would need to sterilize at least every second use.
Leaving the hospital was one of the many hard things that I have had to do. Manuel picked me up and before we left we spent some time with Cecilia. As we drove away from the hospital my body started to ache and the pain in my heart was overwhelming. This was such an awful feeling. I felt I was abandoning my child. How was I going to live with myself?
Walking into the house without my precious princess was weird. I needed her so bad and I also knew that she needed me.
Of course my plan was to see her everyday but I was told not to drive for six weeks due to my surgery, therefore I was lucky to get my mother to drive me for 10 days.
The first thing that I did was put a plan together to be able to schedule my breast expressions around the travel and visiting time.
My first expression was a 6am and Mum would pick me up at 9am so I could get in to hospital before 10am which was my next expression, and spend at least half an hour before expressing catching up with everything that had happened in the morning.
To express I would have to go to the expressing room or sometimes the nurses would bring the pump next to Cecilia’s isolate (they would also bring a shade it you wanted more privacy, but I think that I only used once) so I could be with her while expressing. This is supposed to help with the stimulation which luckily I had no issues with. I had plenty of breast milk.
We would stay until 1pm so I could make it in time for my next expression at 2pm at home.
After expressing I would have some lunch and rest until my next expression which was due at 6pm.
Manuel would arrive from work at 5.15pm, we would have a quick dinner, I would express and we would leave again to go to the hospital. Usually we would arrive at 7pm and we would stay until 9pm – 10pm.
With Manuel we would take heaps of photos and videos. I also would let Manuel do all her cares (change nappy, clean her mouth, clean her isolate, etc) and have cuddles with her because I was able to do this in the morning.
The best was the Kangaroo Care. This consists of having a skin to skin cuddle with the baby in a comfy armchair. We could spend hours with her like this. Every time I had a Kangaroo cuddle I would feel so happy and that everything was ok.
Cecilia was progressing really well and she was of the CPAP after a week therefore they were going to move her to Bay 1 which is Special Care Nursery (right next to the exit door) This meant that Cecilia was no longer unwell; she just needed to grow, put on weight and eventually start to breast feed.
We were really excited and we were starting to plan that she would be ok to leave in another 5 – 7 weeks.
During that week we learned much more about how New Born Services work and what things we were allowed to do.
Wednesday, January 13, 2010
The Biggining of our Life in Hospital
At our first appointment at Monash Medical Centre I was seen by a Cardiologist, Obstetrician and a Midwife.
At this visit they told us that Cecilia was between 7 to 10 days less than expected gestation, that she had an abnormal cerebral ventricle measurements and a duplex left kidney. I was told to come back in three weeks, by then I would be 29 weeks.
At our next visit they confirmed the same findings plus they counselled us regarding the probability that our baby would have developmental delays due to an unknown syndrome. The Obstetrician also wanted me to have an MRI and then a follow up appointment with the Genetics Department.
Every visit was more bad news. I just didn’t know how I was going to handle all of this. My stress levels were about to explode. I desperately wanted to go back in time.
I started to think that I was being punished for not having that ‘maternal instinct’. We were living a night mare which with out me knowing it was just only the beginning.
On the 29th July I had an MRI done which could not be completed due to the machine not functioning properly, which was very frustrating because I had been sedated.
On my way out to the car park I had a few contractions which I though it was just “Braxton Hicks” because I was only 30 weeks. I got home and I had another one around 6pm. At 7.30pm I had another one and they continued to come every hour. By 3am they were every half an hour so I started to worry. I went into the toilet, sat down and starting to read the index of “What to expect when you are expecting” searching the symptoms that I was having. When I found that all my symptoms were very similar to going into an early labour I decided to call the hospital for advice. The nurse advised me to have a hot shower, some Panadol and a hot drink. If after all of that I could not go back to sleep I should call them again.
I called the hospital again at 5am and they advised to come to the hospital or wait until later in the morning to see my GP. I said that I would prefer to come in.
The contractions were a sharp pain but I thought that what I was feeling was not so much of a big deal and that if I went in to hospital they could do something to stop the contractions.
By the time I got to the hospital my contractions were 10 minutes apart. When the doctor checked I was already 3cms dilated and my cervix had opened. They then decided to do an ultrasound to check where Cecilia was positioned.
Cecilia was in breach but because she kept on moving around the doctors thought that there could be chance for her to move to the right position.
The pain wasn’t that bad; it started at the front and then moved to my back. Each contraction would last for a few seconds, so I was able to find a position to handle the pain. From my experience labour was the easiest part from the whole pregnancy.
One hour later doctors were asking me if I would agree to have a caesarean if Cecilia was in a position that they could not turn her. I kept on asking what was they best but they told me that only I could make that decision. I couldn’t believe that in this situation I was also suppose to know what decision to take. I had no pre natal classes or even thought about this possibility. Finally the surgeon said that if he had to give me his opinion he would go ahead with the caesarean. “Ok then, do the caesarean if you need to”, I said.
The doctor checked one more time and this time I was 9cms dilated but she could touch Cecilia’s feet. This meant emergency caesarean.
The next 20 minutes went really quick and also a lot went through my mind. Here I am lying on a surgical bed having a 30 week baby, most probably with heaps of complications plus I will need to recover from an abdominal procedure. How did this all happen?
Manuel was by my side holding my hand and at the same time alert to make sure he didn’t miss Cecilia’s birth. When she came out at 9.26am 30th July 2008, we were both crying. I only got to see a glance of her but Manuel was able to film her while they were weighing her and checking her lungs. Quickly they put her in a capsule and took her off to NICU (Neonatal Intensive Care Unit). Of course I didn’t know all of this. I had no idea what was happening or what was going to happen.
At this visit they told us that Cecilia was between 7 to 10 days less than expected gestation, that she had an abnormal cerebral ventricle measurements and a duplex left kidney. I was told to come back in three weeks, by then I would be 29 weeks.
At our next visit they confirmed the same findings plus they counselled us regarding the probability that our baby would have developmental delays due to an unknown syndrome. The Obstetrician also wanted me to have an MRI and then a follow up appointment with the Genetics Department.
Every visit was more bad news. I just didn’t know how I was going to handle all of this. My stress levels were about to explode. I desperately wanted to go back in time.
I started to think that I was being punished for not having that ‘maternal instinct’. We were living a night mare which with out me knowing it was just only the beginning.
On the 29th July I had an MRI done which could not be completed due to the machine not functioning properly, which was very frustrating because I had been sedated.
On my way out to the car park I had a few contractions which I though it was just “Braxton Hicks” because I was only 30 weeks. I got home and I had another one around 6pm. At 7.30pm I had another one and they continued to come every hour. By 3am they were every half an hour so I started to worry. I went into the toilet, sat down and starting to read the index of “What to expect when you are expecting” searching the symptoms that I was having. When I found that all my symptoms were very similar to going into an early labour I decided to call the hospital for advice. The nurse advised me to have a hot shower, some Panadol and a hot drink. If after all of that I could not go back to sleep I should call them again.
I called the hospital again at 5am and they advised to come to the hospital or wait until later in the morning to see my GP. I said that I would prefer to come in.
The contractions were a sharp pain but I thought that what I was feeling was not so much of a big deal and that if I went in to hospital they could do something to stop the contractions.
By the time I got to the hospital my contractions were 10 minutes apart. When the doctor checked I was already 3cms dilated and my cervix had opened. They then decided to do an ultrasound to check where Cecilia was positioned.
Cecilia was in breach but because she kept on moving around the doctors thought that there could be chance for her to move to the right position.
The pain wasn’t that bad; it started at the front and then moved to my back. Each contraction would last for a few seconds, so I was able to find a position to handle the pain. From my experience labour was the easiest part from the whole pregnancy.
One hour later doctors were asking me if I would agree to have a caesarean if Cecilia was in a position that they could not turn her. I kept on asking what was they best but they told me that only I could make that decision. I couldn’t believe that in this situation I was also suppose to know what decision to take. I had no pre natal classes or even thought about this possibility. Finally the surgeon said that if he had to give me his opinion he would go ahead with the caesarean. “Ok then, do the caesarean if you need to”, I said.
The doctor checked one more time and this time I was 9cms dilated but she could touch Cecilia’s feet. This meant emergency caesarean.
The next 20 minutes went really quick and also a lot went through my mind. Here I am lying on a surgical bed having a 30 week baby, most probably with heaps of complications plus I will need to recover from an abdominal procedure. How did this all happen?
Manuel was by my side holding my hand and at the same time alert to make sure he didn’t miss Cecilia’s birth. When she came out at 9.26am 30th July 2008, we were both crying. I only got to see a glance of her but Manuel was able to film her while they were weighing her and checking her lungs. Quickly they put her in a capsule and took her off to NICU (Neonatal Intensive Care Unit). Of course I didn’t know all of this. I had no idea what was happening or what was going to happen.
Tuesday, January 12, 2010
The Pregnancy
Due to my last period we believed that my due date was 28th September but when I had my first ultrasound it showed I was only 6 weeks pregnant and that I was due on 6th October 2008.
Everything seemed to be going well; I had no morning sickness, no crazy cravings, or heartburns. I just felt hungry all the time and ate anything that I could.
The truth is to be said, I didn’t enjoy being pregnant. I felt tired all the time, fat, restless, without energy, bloated, invaded, having to get up in the middle of night 5 times, not able to sleep properly, my body not being my body, the list is endless. I was really looking forward to giving birth; I wanted the months to fly. Now I know that not enjoying being pregnant has nothing to do on how much you love that little person inside you. Only I know how much I love Cecilia and that I have done everything in my power for her to be happy.
At my 12 weeks ultrasound everything appeared to be fine and they told me I was due on 4th October. So far I had three different dates!!
We were really excited when my 20 week ultrasound had come up. We really wanted to know the baby’s sex. It never would have crossed my mind that something could be wrong because up to now everything had been going smoothly.
When the sonologist started doing the scan she kept on asking me the due date. You could see how the expression on her face was changing. Finally she said that the baby was behind in weight and growth so she was going to call someone else to have a look. If only I knew that I was on a rollercoaster ride that was not going to end for a long time.
The second sonologist comes in and says the same thing that the baby was behind 2 weeks in growth and weight. I didn’t know what this meant, I didn’t know if it was a good or bad thing, I felt they had just dropped a bucked of cold water on top of me. When I started to cry the sonologist said to come back on the Monday so the Obstetrician/Gynaecologist could do another ultrasound and discuss the findings with us. So we had to wait the whole weekend to know or even understand what was going on. I felt that some one had just stabbed me in between my ribs; it was like a cold feeling all over my body. I had no idea how to cope with this feeling; this was not explained or covered in any of the books I had read. I kept on asking my self for answers and I couldn’t come up with anything. I felt that someone had taken my breath away. That weekend was my first time in hell.
Finally it was Monday and we want back to the clinic. The Obstetrician/Gynaecologist explained to us that when I had the 12 week ultrasound they had written the wrong due date on the report (29th September 2008) that is why the sonologists were so concerned. He did confirm that the growth was behind one week which could simply mean that it was a small baby but he also discovered that the left kidney was a duplex kidney therefore he believed that we should consider having amniocentesis done because even though our baby could simply be a small baby but the combination of all these three findings he was suspicious that the baby could have a syndrome even though the 1st Trimester Combined Screen risk assessment of Down syndrome results were reassuring.
Amniocentesis is done by inserting a large needle in to the mother’s belly through the placenta to extract a sample of the amniotic fluid. An ultrasound is done at the same time to ensure that the needle does not touch the baby. There is a 5% risk in having a miscarriage.
With the sample they can check for chromosomal abnormalities and determine the sex 100%.
We had to make the decision quickly because the results would take 10 days to come back with a complete answer and if I was to decide to terminate I had to do it before 22 weeks.
As you can imagine we had been hit again and this time we had to make a decision that could affect our baby.
We decided to have the test done and discussed what to do if the test did not come clear.
We were able to pay an extra fee to get some of the major chromosomal abnormalities which is called FISH analysis within 24 - 48 hours.
Two days later we received a call to advise us that the ‘FISH Analysis Result’ had come back and that we would need to come and pick it up because they could not give us the results over the phone.
The results had come back clear of ‘down syndrome’ and couple of other syndromes that I haven’t heard of in my life. It also told us that our baby was a girl and we had decided years ago that if it was a girl she would be called Cecilia.
You can’t imagine how happy I was, I felt that everything was going to be ok and there was nothing wrong with our baby. How wrong was I, if only I knew what I know now, I would have been more prepared.
The final results came back and they were clear for all the chromosomes they check but when the specialist did the ultrasound again he discovered that Cecilia had a borderline cerebral ventricular dilation and cardiomegaly with a small pericardial effusion on the right side. He advised us that he was suspicious of a non-chromosomal/syndromal anomaly therefore he was going to refer us to the Fetal Diagnostic Unit at Monash Medical Centre for a second opinion.
At this point I wasn’t sure what to think or feel. On one side all the tests were coming back with positive results, my GP was telling me that I had nothing to worry about because lots of people live their entire life with one kidney but the Obstetrician was sending us for a second opinion.
Why wasn’t everything going smoothly and easy? All my friends that had pregnancies or that were pregnant were fine, why this had to happen to me. I thought I had done all the right things. I don’t smoke, don’t do drugs, don’t drink, I exercise and try to have a healthy diet. I just felt the whole world had collapsed on top of my shoulders. My perfect world was breaking.
I was felling lost and there were no books or no one to guide me. I kept on asking my self why they don’t tell you about these things before you get pregnant. Why isn’t this part of the hospital visit or/and first pregnancy visits to the GP? Why do they talk to you in Medical language instead of plain English? How am I suppose to understand what ‘FISH analysis’, cardiomegaly with a small pericardial effusion on the right side, increased cardiothoracic ratio is suppose to mean?
I was lucky that one of the main things that I do in my job is retain information so I would try to remember the terminology they would used so I could do a Google search on the Internet, which it wasn’t always a good idea because I found way to much information and I didn’t know what was relevant to our case or not.
I can tell you that I was petrified, I no longer knew if I wanted to keep on going ahead with this pregnancy, if it was worth it or not. I was too scared to share my feelings with anyone because I thought they would judge me and think that I was a horrible person and didn’t disserve to be a mother.
For 22 days I had to carry all these contradicting feelings, work full time, keep my pregnancy going like everything was ok before I had my first appointment at Monash Medical Centre. I was back in hell for my second visit.
Everything seemed to be going well; I had no morning sickness, no crazy cravings, or heartburns. I just felt hungry all the time and ate anything that I could.
The truth is to be said, I didn’t enjoy being pregnant. I felt tired all the time, fat, restless, without energy, bloated, invaded, having to get up in the middle of night 5 times, not able to sleep properly, my body not being my body, the list is endless. I was really looking forward to giving birth; I wanted the months to fly. Now I know that not enjoying being pregnant has nothing to do on how much you love that little person inside you. Only I know how much I love Cecilia and that I have done everything in my power for her to be happy.
At my 12 weeks ultrasound everything appeared to be fine and they told me I was due on 4th October. So far I had three different dates!!
We were really excited when my 20 week ultrasound had come up. We really wanted to know the baby’s sex. It never would have crossed my mind that something could be wrong because up to now everything had been going smoothly.
When the sonologist started doing the scan she kept on asking me the due date. You could see how the expression on her face was changing. Finally she said that the baby was behind in weight and growth so she was going to call someone else to have a look. If only I knew that I was on a rollercoaster ride that was not going to end for a long time.
The second sonologist comes in and says the same thing that the baby was behind 2 weeks in growth and weight. I didn’t know what this meant, I didn’t know if it was a good or bad thing, I felt they had just dropped a bucked of cold water on top of me. When I started to cry the sonologist said to come back on the Monday so the Obstetrician/Gynaecologist could do another ultrasound and discuss the findings with us. So we had to wait the whole weekend to know or even understand what was going on. I felt that some one had just stabbed me in between my ribs; it was like a cold feeling all over my body. I had no idea how to cope with this feeling; this was not explained or covered in any of the books I had read. I kept on asking my self for answers and I couldn’t come up with anything. I felt that someone had taken my breath away. That weekend was my first time in hell.
Finally it was Monday and we want back to the clinic. The Obstetrician/Gynaecologist explained to us that when I had the 12 week ultrasound they had written the wrong due date on the report (29th September 2008) that is why the sonologists were so concerned. He did confirm that the growth was behind one week which could simply mean that it was a small baby but he also discovered that the left kidney was a duplex kidney therefore he believed that we should consider having amniocentesis done because even though our baby could simply be a small baby but the combination of all these three findings he was suspicious that the baby could have a syndrome even though the 1st Trimester Combined Screen risk assessment of Down syndrome results were reassuring.
Amniocentesis is done by inserting a large needle in to the mother’s belly through the placenta to extract a sample of the amniotic fluid. An ultrasound is done at the same time to ensure that the needle does not touch the baby. There is a 5% risk in having a miscarriage.
With the sample they can check for chromosomal abnormalities and determine the sex 100%.
We had to make the decision quickly because the results would take 10 days to come back with a complete answer and if I was to decide to terminate I had to do it before 22 weeks.
As you can imagine we had been hit again and this time we had to make a decision that could affect our baby.
We decided to have the test done and discussed what to do if the test did not come clear.
We were able to pay an extra fee to get some of the major chromosomal abnormalities which is called FISH analysis within 24 - 48 hours.
Two days later we received a call to advise us that the ‘FISH Analysis Result’ had come back and that we would need to come and pick it up because they could not give us the results over the phone.
The results had come back clear of ‘down syndrome’ and couple of other syndromes that I haven’t heard of in my life. It also told us that our baby was a girl and we had decided years ago that if it was a girl she would be called Cecilia.
You can’t imagine how happy I was, I felt that everything was going to be ok and there was nothing wrong with our baby. How wrong was I, if only I knew what I know now, I would have been more prepared.
The final results came back and they were clear for all the chromosomes they check but when the specialist did the ultrasound again he discovered that Cecilia had a borderline cerebral ventricular dilation and cardiomegaly with a small pericardial effusion on the right side. He advised us that he was suspicious of a non-chromosomal/syndromal anomaly therefore he was going to refer us to the Fetal Diagnostic Unit at Monash Medical Centre for a second opinion.
At this point I wasn’t sure what to think or feel. On one side all the tests were coming back with positive results, my GP was telling me that I had nothing to worry about because lots of people live their entire life with one kidney but the Obstetrician was sending us for a second opinion.
Why wasn’t everything going smoothly and easy? All my friends that had pregnancies or that were pregnant were fine, why this had to happen to me. I thought I had done all the right things. I don’t smoke, don’t do drugs, don’t drink, I exercise and try to have a healthy diet. I just felt the whole world had collapsed on top of my shoulders. My perfect world was breaking.
I was felling lost and there were no books or no one to guide me. I kept on asking my self why they don’t tell you about these things before you get pregnant. Why isn’t this part of the hospital visit or/and first pregnancy visits to the GP? Why do they talk to you in Medical language instead of plain English? How am I suppose to understand what ‘FISH analysis’, cardiomegaly with a small pericardial effusion on the right side, increased cardiothoracic ratio is suppose to mean?
I was lucky that one of the main things that I do in my job is retain information so I would try to remember the terminology they would used so I could do a Google search on the Internet, which it wasn’t always a good idea because I found way to much information and I didn’t know what was relevant to our case or not.
I can tell you that I was petrified, I no longer knew if I wanted to keep on going ahead with this pregnancy, if it was worth it or not. I was too scared to share my feelings with anyone because I thought they would judge me and think that I was a horrible person and didn’t disserve to be a mother.
For 22 days I had to carry all these contradicting feelings, work full time, keep my pregnancy going like everything was ok before I had my first appointment at Monash Medical Centre. I was back in hell for my second visit.
A little bit of history
I was born in Australia but left and come back several times. The first time I was seven lived three years in Uruguay, came back and live nearly three years in Australia and went back to Uruguay in 1990. I was 14 years old. All these trips were decisions made by my parents but that is another story and I think it would be a book on its own.
My husband, Manuel and I met on 22nd August 1998 in a night club in Montevideo, Uruguay. Since that night we have always been together. We knew that we were meant for one another.
Manuel is Cuban and he had been living in Uruguay since 1995.
Six months later we decided to get married and eventually migrate to Australia together.
On 13th August 2000 we arrived to Australia to start our brand new life and family.
The beginning wasn’t easy especially for Manuel, he had to learn English before even thinking of getting a job and I had to go back to school because my qualifications were not recognised here, but all of this did not matter because we knew that we needed to start from the bottom to be able to reach the top. Fortunately over the years we achieved a lot. We were able to save the deposit for a house; we had two good jobs, cars, etc. We were living our dream.
Even though I knew Manuel was the one and we had been married for nine years, getting pregnant was always a hard decision for me. Manuel always wanted to have children and I knew that he would be a great father, but I just really never felt that motherly desire to have children. Because I knew I would never make the decision of saying ‘yes I want to have a baby’, I decided to leave it up to faith, ‘que sera, sera’ (what would will be, will be) so I stoped taking the pill in July 2007.
On the 25th January 2008 we went away for a long weekend to relax and spend some time alone. During the weekend I was feeling hungrier than the usual and my period was 2 weeks late so I had a feeling that something was going on. When we came back on Sunday 27th January I called my sister to let her know what I was feeling. She told me that she thought I was pregnant and to go and buy a pregnancy test. As suspected I was pregnant. By the way my sister is a bit of a white witch.
So of I went to the GP to confirm my pregnancy and get a referral for a GP that specialises in obstetrics.
My husband, Manuel and I met on 22nd August 1998 in a night club in Montevideo, Uruguay. Since that night we have always been together. We knew that we were meant for one another.
Manuel is Cuban and he had been living in Uruguay since 1995.
Six months later we decided to get married and eventually migrate to Australia together.
On 13th August 2000 we arrived to Australia to start our brand new life and family.
The beginning wasn’t easy especially for Manuel, he had to learn English before even thinking of getting a job and I had to go back to school because my qualifications were not recognised here, but all of this did not matter because we knew that we needed to start from the bottom to be able to reach the top. Fortunately over the years we achieved a lot. We were able to save the deposit for a house; we had two good jobs, cars, etc. We were living our dream.
Even though I knew Manuel was the one and we had been married for nine years, getting pregnant was always a hard decision for me. Manuel always wanted to have children and I knew that he would be a great father, but I just really never felt that motherly desire to have children. Because I knew I would never make the decision of saying ‘yes I want to have a baby’, I decided to leave it up to faith, ‘que sera, sera’ (what would will be, will be) so I stoped taking the pill in July 2007.
On the 25th January 2008 we went away for a long weekend to relax and spend some time alone. During the weekend I was feeling hungrier than the usual and my period was 2 weeks late so I had a feeling that something was going on. When we came back on Sunday 27th January I called my sister to let her know what I was feeling. She told me that she thought I was pregnant and to go and buy a pregnancy test. As suspected I was pregnant. By the way my sister is a bit of a white witch.
So of I went to the GP to confirm my pregnancy and get a referral for a GP that specialises in obstetrics.
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