The Longest Day
It has been a while since my last post Final Preparations and False Alarms So much has happened between now and then. Our beautiful little X Man, Xavier David, came into our lives at 8.38am on 5th July and grew his angel wings at 1.57am 6th July. This is my recollection of the events of that very long day...
Two days after my last post I got home from work just after 8pm and Mum was hurting and also believed that her waters may have broken. A quick call to Nanny P and Poppy G to come and look after Mr Two and we were off to the hospital.
The midwives started monitoring Mum and just like our last false alarm there were signs of contractions but no other obvious signs of labor (waters were still intact). It was decided that Mum would be admitted. Through the night Mum continued to be in pain. This was confusing me as the times Mum was in pain were not matching up with the times the monitors shows contractions or Xavier moving. At this stage the midwives were not overly concerned and happy to keep monitoring.
Around 7ish the following morning I noticed that the monitor for Xavier's heart rate had started showing erratic readings. I put this down to Mum shuffling around in bed and the monitor having moved so I didn't think twice about this. Because we had come straight to the hospital after I finished work I had not had anything to eat since lunch time the previous day, so just before 8am I went out to get a bite to eat from the cafe, which opened at 8am.
After I had finished eating, I went back to find a doctor and a number of midwifes/nurses in with Mum. The doctor explained that Xavier's heart rate was erratic and that they were concerned and believed that they needed to progress the labor by breaking Mum's waters. When the doctor went to do this she discovered that Xaviers head was not as low as she would have hoped. Because of this there was a risk that the umbilical cord could drop below Xaviers head and if this happened then this would mean they would need to perform an emergency C Section. So the doctor and midwives/nurses made all the necessary arrangements to ensure if this happened everyone was ready. The doctor then proceeded to break the waters and when she did, there was an almighty gush of blood. Now, if you ever want a definition of a well oiled machine, what happened next would definitely suffice. As quick as a flash the operating theater was told they were on their way and before I knew it I was left alone in the room. Scared the bejeezus out of me. For the next 10 or so minutes I am pretty sure I paced a grove in the flooring in that room while I waited for some news. Finally a midwife/nurse came and got me and I was taken to the recovery room where Mum would end up.
Around 9am a midwife came and got me to go and see Xavier. They had Xavier on the trolley and were providing some respiration assistance because he was struggling to breathe on his own. They took the respirator away long enough for me to get this photo of him.
 |
| Xavier David |
Not long after Mum was brought in I was summoned back to Xavier, who had been taken to the Pediatric Intensive Care Unit (PICU). On the way I was told that there was an issue in getting a tube down Xavier's throat which was required in order to prepare him for his heart surgery and that they were going to have to take him to surgery to investigate what was causing the blockage. When we arrived at the PICU there were around a dozen doctors, nurses and midwives all attending to Xavier in one way or another. As soon as I stepped into the room I was immediately approached by a doctor who explained that a tube that was required to be inserted in Xaviers throat was not proceeding past his voice box and that in order to identify why they would need to take him to surgery. I was also advised that depending on their findings they may need to perform a Tracheotomy in order to assist him to breathe and asked for my consent to do this, which I gave.
The next question threw me for a massive six... I was asked what I would like them to do if it was required for Xavier to be resuscitated. Whoa! What a question! How can you possibly be asked to make a decision like that? My first thought was that I wanted to speak with Mum and together make a decision, but with Mum being out of action after surgery and time not being on our side I had no choice but to make a decision and to hope and pray that Mum would be happy with the decision I made. It was a tough decision, but I let them know that if resuscitation would result in no quality of life for Xavier to let him pass, but if there was even a slight chance that there would be no last side effects then to please do what they could to save him. Mum later backed me all the way on this decision.
Now, if that wasn't enough, once that doctor had finished with me I was then introduced to the cardiac surgeon. He proceeded to then tell me that if the tube could not be inserted, or if Xavier needed to have the Tracheotomy that this would probably mean that the risk factor for heart surgery would become so high that it would be unlikely that they would be able to proceed with his heart operations and that if that was the case then Xavier's only option then would be palliative care. Bloody hell!
Anyway, after they had finished all their scans and everything else they needed to do to prepare him for theater, and after I had signed all the consent forms, we all walked Xavier around to the Children's hospital where he was to go into surgery. I got to say goodbye to him and then I was taken back to Mum. I then had to break the news to Mum, but again because she was so soon out of surgery I could tell that it just wasn't registering with her.
Shortly after my return to Mum we were taken up to our room to await news about Xavier. It was about 2pm when our Doctor came to see us. He told us that they had discovered that there was a massive abnormality with Xavier's respiratory system which alone would have been a massive challenge to attempt to repair, if at all. Coupled with his HLHS, it was just too much and there was no surgical options left available to us. We were going to have to say goodbye to our beautiful boy.
My immediate concern was that I wanted Mum to meet Xavier and be able to hold him and spend as much time as she could with him. The midwives put this concern to rest immediately and advised us that they could wheel Mum down to Xavier on her bed and that we could spend as much time as needed with him.
Knowing that we were going to have to say goodbye, we wanted Xaviers grandparents to have the opportunity to meet him also. By this time the grandparents had got together. A few phone calls later and I had arranged for a friend to look after Mr Two and had called and spoken to Poppy G and Grandma H to let them know what was happening and to ask them to come in to the hospital.
Mum also called Uncle S who lives in Canada to let him know. I called Aunty K who lived in Sydney and filled her in also.
After we had made these calls Mum was wheeled down to Xavier with me in tow. Once there they maneuvered Mum's bed in among all the equipment that Xavier was connected up to and finally Mum was able to meet and hold Xavier. A while later I was also able to get to hold our little man.
Xavier was and always will be so beautiful. It hurts so much to have seen how perfect he was on the outside and yet there was so much wrong internally.
A short while later the Grandparents arrived and they too were able to meet Xavier.
Whilst we were spending time with Xavier there were a number of things happening. One of the nurses had a camera which we later learned was a special camera which had been donated to the hospital by Heartfelt. Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses. At the same time, it was organised for a Heartfelt volunteer to come and take some professional photo's of Xavier for us.
We were also asked if we wanted to have Xavier baptised. Before Xavier was born we had discussed about having Xavier blessed prior to his first operation, so when this came up we were able to immediately say that yes we would like him baptised. Mr Two is baptised Anglican so the hospital tried to organise for an Anglican minister to attend and perform the baptism. Unfortunately there was no Anglican minister available. As I am Catholic the hospital tried for a Catholic priest and we were fortunate to have a priest come and baptise Xavier.
A couple of hours later the volunteer from Heartfelt, Amy, arrived. She had travelled 1.5 hours just to be with us. This is a small indication of the lengths Heartfelt will go to to provide their service. Amy took some amazing photos that Mum & I will treasure for the rest of our lives.
Around 6pm'ish and we started discussing preparations for us to say our final goodbyes to Xavier and to prepare to take him off the machines that had been keeping him alive. For Mum it was too much for her to watch Xavier go. Mum had said her goodbyes and wanted to remember Xavier for the time that she had with him, so Mum decided that she would return to her room. I wanted to stay with Xavier. I wanted him to know he was not alone while he went to sleep.
After Mum and the Grandparents left to return to Mum's room I held Xavier while the midwives/nurses removed all the equipment Xavier was connected to, apart from his pain relief. I held him and spoke to him and told him how much I loved him. I told him how much his Mummy loved him and how much his big brother loved him. I apologised to him for not being able to help him and I let him know that he will forever be in our hearts.
A few minutes later the midwife who was with me explained that Xavier had not made much of an effort to breath on his own, which was evident to me as well. She checked for a heartbeat and was still able to detect it at that time. I spoke to Xavier for a bit longer before she again checked, and this time she was not able to detect a heartbeat. I said my final goodbyes to Xavier before leaving to go back to be with Mum.
I arrived back to Mum and let her know that Xavier had gone to heaven.
We said out goodbyes to the Grandparents and settled down to contemplate what had just happened. Not long after the Grandparents had left the midwife who had been with Xavier and I came up to the room with a doctor. The doctor had been called to officially pronounce Xavier had passed, however, when he checked for a heartbeat he was still able to detect it. They aplogised to us and asked us what we would like to do. We could have gone down to where Xavier was to be with him or we could have had Xavier brought up to us to be with us. For mum it was all too much. For me, I had already said goodbye to Xavier twice that day, I was at peace and I couldn't go through saying goodbye to him again. I knew that Mum needed me and I needed to stay with Mum to look after her.
After the doctors had left Mum and I talked for a while. We cried and held each other. We were both physically and emotionally exhausted and before long we both drifted off to a semi-sort-of-sleep.
Just before 2am I woke to hear Mum crying. Unlike her earlier cries this was a deep, sorrowful mourning cry. I went and comforted Mum and held her tight and let her know I was there.
At about 2.30am a midwife and the duty nurse came in to see us. They let us know that Xavier had passed peacefully at 1.57am. Mum knew, she just knew, and this was why she had been so upset right at that time.
Today it is 4 months since Xavier was born. Every day I think of him and every day I am reminded of him in some way or other. The days are getting easier slowly but the ache in my heart is constantly there.
It has taken me 4 months to be able to write this post. Not a word has been typed without a tear in my eye. There is still so much more that I want to say, but that will come with future posts.
For Now, I just want to let Xavier know that his Mummy, Daddy, Brother, Grandparents, Aunty and Uncle, and everyone else who shared in his journey, love him and will remember him always.
I love you Xavier, my Son xxx
My immediate concern was that I wanted Mum to meet Xavier and be able to hold him and spend as much time as she could with him. The midwives put this concern to rest immediately and advised us that they could wheel Mum down to Xavier on her bed and that we could spend as much time as needed with him.
Knowing that we were going to have to say goodbye, we wanted Xaviers grandparents to have the opportunity to meet him also. By this time the grandparents had got together. A few phone calls later and I had arranged for a friend to look after Mr Two and had called and spoken to Poppy G and Grandma H to let them know what was happening and to ask them to come in to the hospital.
Mum also called Uncle S who lives in Canada to let him know. I called Aunty K who lived in Sydney and filled her in also.
After we had made these calls Mum was wheeled down to Xavier with me in tow. Once there they maneuvered Mum's bed in among all the equipment that Xavier was connected up to and finally Mum was able to meet and hold Xavier. A while later I was also able to get to hold our little man.
Xavier was and always will be so beautiful. It hurts so much to have seen how perfect he was on the outside and yet there was so much wrong internally.
A short while later the Grandparents arrived and they too were able to meet Xavier.
Whilst we were spending time with Xavier there were a number of things happening. One of the nurses had a camera which we later learned was a special camera which had been donated to the hospital by Heartfelt. Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature births, or have children with serious and terminal illnesses. At the same time, it was organised for a Heartfelt volunteer to come and take some professional photo's of Xavier for us.
We were also asked if we wanted to have Xavier baptised. Before Xavier was born we had discussed about having Xavier blessed prior to his first operation, so when this came up we were able to immediately say that yes we would like him baptised. Mr Two is baptised Anglican so the hospital tried to organise for an Anglican minister to attend and perform the baptism. Unfortunately there was no Anglican minister available. As I am Catholic the hospital tried for a Catholic priest and we were fortunate to have a priest come and baptise Xavier.
A couple of hours later the volunteer from Heartfelt, Amy, arrived. She had travelled 1.5 hours just to be with us. This is a small indication of the lengths Heartfelt will go to to provide their service. Amy took some amazing photos that Mum & I will treasure for the rest of our lives.
Around 6pm'ish and we started discussing preparations for us to say our final goodbyes to Xavier and to prepare to take him off the machines that had been keeping him alive. For Mum it was too much for her to watch Xavier go. Mum had said her goodbyes and wanted to remember Xavier for the time that she had with him, so Mum decided that she would return to her room. I wanted to stay with Xavier. I wanted him to know he was not alone while he went to sleep.
After Mum and the Grandparents left to return to Mum's room I held Xavier while the midwives/nurses removed all the equipment Xavier was connected to, apart from his pain relief. I held him and spoke to him and told him how much I loved him. I told him how much his Mummy loved him and how much his big brother loved him. I apologised to him for not being able to help him and I let him know that he will forever be in our hearts.
A few minutes later the midwife who was with me explained that Xavier had not made much of an effort to breath on his own, which was evident to me as well. She checked for a heartbeat and was still able to detect it at that time. I spoke to Xavier for a bit longer before she again checked, and this time she was not able to detect a heartbeat. I said my final goodbyes to Xavier before leaving to go back to be with Mum.
I arrived back to Mum and let her know that Xavier had gone to heaven.
We said out goodbyes to the Grandparents and settled down to contemplate what had just happened. Not long after the Grandparents had left the midwife who had been with Xavier and I came up to the room with a doctor. The doctor had been called to officially pronounce Xavier had passed, however, when he checked for a heartbeat he was still able to detect it. They aplogised to us and asked us what we would like to do. We could have gone down to where Xavier was to be with him or we could have had Xavier brought up to us to be with us. For mum it was all too much. For me, I had already said goodbye to Xavier twice that day, I was at peace and I couldn't go through saying goodbye to him again. I knew that Mum needed me and I needed to stay with Mum to look after her.
After the doctors had left Mum and I talked for a while. We cried and held each other. We were both physically and emotionally exhausted and before long we both drifted off to a semi-sort-of-sleep.
Just before 2am I woke to hear Mum crying. Unlike her earlier cries this was a deep, sorrowful mourning cry. I went and comforted Mum and held her tight and let her know I was there.
At about 2.30am a midwife and the duty nurse came in to see us. They let us know that Xavier had passed peacefully at 1.57am. Mum knew, she just knew, and this was why she had been so upset right at that time.
Today it is 4 months since Xavier was born. Every day I think of him and every day I am reminded of him in some way or other. The days are getting easier slowly but the ache in my heart is constantly there.
It has taken me 4 months to be able to write this post. Not a word has been typed without a tear in my eye. There is still so much more that I want to say, but that will come with future posts.
For Now, I just want to let Xavier know that his Mummy, Daddy, Brother, Grandparents, Aunty and Uncle, and everyone else who shared in his journey, love him and will remember him always.
I love you Xavier, my Son xxx
