The Story of Alexander (part 2)

** Photo's in the post may be upsetting to some**

Can you imagine a world where you spend in excess of 14 hours a day in a hospital, where you have to watch your child sleep in a crib that regulates their body temperature while machines help them breathe and monitor their every heartbeat. Where tubes feed them because you aren’t allowed to, where you can’t pick them up or hold them, where you can see their tears falling from their eyes but cannot hear the sound of their cries because they are intubated. Can you imagine having to leave your child every night, leave them to be cared for by someone else, a complete stranger to you, while you go and try to sleep in a room that is not your own, in a city you do not live in with no family around. And to top it all off, a husband who only wants to talk to you about the problems you are having in your relationship. There is no escape, there is no end in sight. You don’t know if your child will be okay or when you’ll be able to take them home or even if you’ll be able to take them home, you don’t know what is going to happen with your marriage, you feel like you don’t know anything. Can you imagine this world? I can. I can because this was my world. For almost three months this was my life.

Peter* and I had been having problems for a while by the time Alexander was born and living in a small room together only made things worse. I couldn’t handle the issues we were having and begged him to just let it go until we knew everything with Alexander would be okay. He wasn’t able to do that. Every single day he berated me about where our marriage was going, what I wanted and what he needed. The few days following the birth of Alexander were my only respite, he seemed to have let it go. However it only lasted a few days. I couldn’t believe it, our son was in hospital, fighting for his life and this was his priority?? It’s standard to see a counsellor when your child is in NICU, especially if it is expected they will have an extended stay. I loved our counsellor. Peter and I saw her together and attempted to speak with her about our problems but the sessions only ever ended in an argument, followed by Peter telling me off afterwards for saying certain things, or speaking when he wanted to talk. It was becoming more and more apparent just how controlling he was. During my pregnancy he would comment on things such as if I had a chocolate bar or nothing but breakfast cereal for dinner, because that was all I could stomach. It was subtle at first, almost said jokingly. Then it became more serious and towards the end he would be quite blunt in putting me down about what I would eat, what I would do and how I would do it. He controlled what I talked to people about (if I spoke about my work he hassled me later saying I was ‘showing off’ or that people didn’t want to hear my stories), he controlled who I saw and he controlled where I went and when. He had isolated me from my friends and family. My closest friend was amazing to me and so supportive, I talked to her about everything and Peter knew this. He started telling me that I wasn’t able to talk to her anymore or see her. I had let a lot of the other controlling issues slide, either because they were so subtle I didn’t notice them or because I didn’t have the energy to argue, but this one I wouldn’t allow. He started checking my phone to see how many times I had texted her or called her in a day. He even told me he suspected that after I had Alexander I was going to leave him for her. He was so time consuming and demanding and I was exhausted.

Alexander’s first few days of life were a blur. I remember sitting in the waiting room when he was having his first surgery, silently crying the whole time. I had been awake for 36 hours straight after going into labour at 9pm the night before. The nurses looking after Alexander were amazing, they would send me back to my room to rest when they thought I’d had enough, they made sure I had water with me all the time and sometimes they just sat with me and talked about Alexander and the strong personality he already had. I stayed in hospital for 3 days after Alexander’s birth, not because anything was wrong but literally because the nurses looking after me on the maternity ward forgot I was there. On the second day I was in my room resting while Alexander slept 4 floors below me in the NICU. A nurse came in after knocking on the door, she walked in and apologised for waking me. After a few seconds of looking around the room puzzled she said to me ‘where is your baby? You’re supposed to have him with you all the time.’ I burst into tears. Didn’t they have that information on my chart or something to stop hurtful questions like this? What I wouldn’t give to have him by my side at every moment. I told her quite bluntly he was in NICU. I gathered my things and walked out of the room without speaking another word to her. I never saw that nurse again.

Cuddles with Alexander in NICU1 - Day 5

I was sitting with Alexander late at night, watching the monitors, watching the machines helping him breathe. It may seem weird to some but I found the beeps of the monitor to be soothing, they were familiar to me, I understood them. They told me information I could interpret, the beeps reminded me of work, our machines sounded exactly the same. I could feel my eyes getting heavy as I sat in the chair next to Alexander’s bed. All of a sudden I heard the alarm tone – it was telling me Alexander wasn’t getting enough oxygen. He was intubated, the machine was supposed to be regulating this. I sat straight up as his nurse rushed over. I could see his lips starting to go blue as the machine’s alarms continued to sound. It was my instinct both as a mum and as a paramedic to do something, but I didn’t know what. Another nurse came to help and another took me by the hand and stood me back from the bed. Alexander was now a dusty pink all over, going purple. I could tell by the monitors he wasn’t getting any oxygen and his heart rate was dropping, it was slowing down. The nurse was suctioning Alexander’s tube, there must have been an obstruction. He had been producing a lot of mucous and this was causing a blockage in the tube. My whole world had stood still. His heart was getting slower and I knew the nurse holding my hand was concerned. His nurse was still suctioning the tube, the machine was beeping way too slow, I had tears streaming from my eyes and I was shaking. It was almost like my heart was trying to compensate for Alexander’s by beating that much faster. Then I heard the beeps speed up. The nurse had reattached the ventilator and Alexander was returning to a much healthier shade of pink. I will never forget those moments, watching helplessly as these amazing nurses worked quickly and calmly to keep my son alive.

Alexander Day 2 - Intubated and sleeping

The step down from NICU 1 (most critical babies) to NICU 2 (still very sick but not as critical, usually for babies that can breathe on their own) was a massive relief. The atmosphere in the pod room (the room which held up to 6 NICU beds) was much more relaxed. These babies were still critically ill but for the large portion they were travelling along well. One day I started talking to another mum who was in the room, Alysha. Her son Oscar was in the NICU after being born at 24 weeks. Alysha was amazing, I had seen her for a few days walking through the NICU, she always seemed so composed and in charge. Her little boy was a few weeks old at this stage. After having a chat with Alysha I realised she was even more amazing than I had thought. Oscar was her second child, her little girl Ruby was also born at 24 weeks and had spent 100 days in NICU. This was her second stint here. She spoke the NICU language fluently and knew more about CPAP and surfactant than most nurses would. We quickly became friends. I had someone to talk to, someone who brightened my day and someone I looked forward to seeing. I don’t think she will ever know just how much of an impact she had on me or just how much I relied on her friendship during this time. Peter didn’t like us being friends and would often make negative comments about her in order to try and stop me talking to her. It wasn’t going to work.

After two weeks of Alexander being in NICU, the hospital felt like a second home. I knew the walk from Ronald McDonald House to the hospital step by step and I knew the smell and sound of each corridor and lift through the hospital. The nurses started knowing me by name and I had settled into the hospital’s routine. My days were the same, day in and day out. Each day I would wake at 6am and pump breastmilk to store for Alexander. I would get ready, stop by the coffee shop on the way and be at the hospital by 7am. Each morning they had rounds where the doctors, nurses, pharmacists and anyone else involved in the baby’s progress and development would come around and talk about what had happened in the last 24 hours and what the plan for the next 24 hours was. After this was done I would sit with Alexander and read him stories, I would pump every 3-4 hours in order to maintain my supply, I didn’t have the luxury of feeding on demand. I would stay at the hospital until around 1pm, then I would head out and have lunch and go back to Ronald McDonald House for a nap.  I would gather more supplies and usually a prepacked meal for dinner, one that I had cooked in advance and frozen. I’d then head back to the hospital at 4pm and stay until around 10pm at night. I’d walk back to Ronald McDonald House, get myself organised for the next day, shower, pump again and go to bed. I’d wake during the night at around 2am to pump again, attempting to mimic the needs of a newborn. This was my routine. My day to day. This was my life.

The third week of NICU was a little scary. The cause of Alexander’s bowel obstruction was unknown.  The surgeons were unable to determine the cause during surgery and therefore further testing needed to be done. I was told that they were suspecting one of two conditions. The first was a condition called Hirschprung’s Disease.  This would have meant that at the point of the obstruction the nerves in Alexander’s intestines were not formed properly, and everything below that section would not work. Because of how high in Alexander’s intestine the obstruction was, this would have meant that Alexander would have had a very low quality of life and this condition would have ultimately been fatal. Alexander wouldn’t have been able to eat, ever. I couldn’t believe this was possible of my gorgeous little boy. The other option was that Alexander would have Cystic Fibrosis, a condition primarily affecting his lungs. This would have meant Alexander would have to endure daily physiotherapy and medication, he would be completely infertile and his life expectancy wouldn’t reach past forty years. Alexander had a 90% chance of having Cystic Fibrosis. At week 3 they were able to text for Hirschprung’s Disease but couldn’t test for Cystic Fibrosis until 4 weeks at the earliest. The test for Hirschprung’s was invasive and I stood with Alexander, soothing him as they took the sample they needed. The results wouldn’t be ready for days. These were the slowest days of my life. I floated through in a haze, too scared to think about things too much. The results came back and they were negative for Hirschprung’s Disease. I felt so relieved, but it was short lived. The surgeon who gave me the news followed the information with ‘I guess it is Cystic Fibrosis then’. My heart sank. I still couldn’t believe it. And I still had to wait.

Alexander's 'Bedroom' in NICU2

I had been having regular appointments with the counsellor, just on my own as the ones I had with Peter always ended up in more arguments. I had updated her on Alexander’s condition but I had said to her that I didn’t want to talk about the possibility of him having Cystic Fibrosis. If he did have it, I would deal with it then and if he didn’t have it then I didn’t want to stress about it now for no reason. She was accepting of this. The conversation turned to my marriage and she asked me if I was happy. My response was simple, I don’t think I had ever been happy, not really. She asked what support I had, I explained that I had two friends that I had talked to that Peter didn’t know about because it would have caused more problems. One was my closest friend who Peter had forbidden me from talking to, and the other was Steve. I had kept him up to date on Alexander’s progress as much as possible. He was so supportive and diplomatic when it came to Peter. His response to most things was that he was probably just finding it hard being a new dad and not knowing how to express it. My family was a source of support but I had kept from them how bad things were in my relationship with Peter that it almost seemed impossible to talk to them about it now. My mum knew things weren’t fantastic and she was trying her best to help. Mum spent as much time as she could at the hospital with me but she lived 3 hours away and getting to Brisbane was difficult for her. I knew she wanted to be closer to me, I needed her to be closer to me, but Peter wouldn’t allow it. He came across as being supportive of me in front of others but behind closed doors he would always comment on how it would be unfair if my mum stayed with me and he couldn’t have his mum that close or that I shouldn’t be relying on my mum so much and that I should be relying on him. In the end I gave up the argument.  My counsellor asked me, ‘Do you want to be married to Peter’. I thought about it… I honestly didn’t know. I knew I didn’t love him anymore, not really. But I felt guilty at the thought of not having this ‘perfect family’. She asked me to picture myself sitting on a beach, I was smiling, laughing and I was happy. She asked me who was there with me. I said Alexander. Just Alexander. She asked what I wanted from my marriage and I responded ‘I want out. I want it to be over’. It was all too much to process while my son lay in NICU and I was so far from home. I told her I was just going to get through however long it took to get home and then deal with it then. I didn’t want to discuss things with Peter, I just wanted to take each day as it came. As far as I was concerned we just needed to be roommates, there for support for our sick son, we just needed to get through.

The day of the Cystic Fibrosis test finally came. They had to collect a certain amount of sweat from Alexander’s skin and test the amount of chloride found it in. Those with Cystic Fibrosis have higher chloride levels, in a nutshell, their skin is saltier. The nurse that was looking after Alexander that day was brilliant. She had known I was getting very nervous about the test and sat with me for a while. She had been a NICU nurse for 15 years and had seen it all. She said to me ‘he just doesn’t look like a CF baby you know’. I had these little glimmers of hope but then would doubt myself – he had a 90% chance of CF and then there was what the surgeon had said… I was torn. ‘Have you licked him?’ she asked. Huh?!? Licked him? She explained that people with CF have very salty skin and you can taste it. I looked at her and she laughed – she said she was serious and that it was true. I have to admit – I was desperate for hope, for any sign that he didn’t have CF. So I did it. I licked my son’s forehead. He didn’t taste too salty. Maybe a little. But how salty is too salty? Then I burst out laughing. The nurse asked what was wrong. I had just realised Alexander had never had a bath. In the tiny entirety of his life, he had never had a bath. He had been wiped down occasionally but water and submersion posed a massive risk of infection of his PICC line and IV lines. The nurse had made me laugh for the first time in longer than I cared to remember. I had an overwhelming feeling that everything was going to be okay. The test was done and a few days later the results were back. The nurse who was there on the day of the test came to visit – I explained the results were back but the doctor had been busy and wasn’t able to come around to tell us until later that evening. She said to me ‘well that just won’t do, come with me’. She took me over to the computer and logged in to see Alexander’s results. There it was, right before my eyes. All the numbers on the screen took me a few seconds to process. He was clear. He didn’t have CF. It wasn’t even marginal, his numbers were convincingly below CF levels. I jumped for joy, hugged the nurse and cried tears of happiness.

More cuddles - I couldn't get enough

Now I just had a waiting game. It was determined that Alexander’s obstruction was just a congenital defect with no apparent cause. I was waiting for Alexander to be able to have his next surgery where they would reconnect his intestine – they had to wait until the swelling had gone down so each side of the intestine was closer in size (initially one size was 1cm in diameter and the other was 4cm, they explained it would be like trying to connect a small garden hose to a drain pipe). During this time Alexander was healthy, he was now able to have 3mls of milk every hour and was gaining weight from the TPN and lipids (IV food). Things were looking good and he was a happy little man.

Unfortunately things were just getting worse between Peter and I. I felt so trapped and so alone, I was fighting to get through each day and doing my best to avoid Peter. I had even gone home on a few occasions just to get away. Alexander was doing so well and I knew I wasn’t doing well staying there. I would go and spend the morning with Alexander, reading him stories and going through our usual morning routine. By this stage I had read 7 Roald Dahl books and we kept working our way through the collection. At 1pm I left the hospital and left town, heading home. It only took around an hour and a half to get there. I was so excited to be alone. I spent the night in my own house. I didn’t sleep in my bed, I was trying to distance myself from Peter as much as I could and that bed was our bed. I slept on the lounge and had the best night sleep since before Alexander was born. I called the hospital every few hours and spoke with Alexander’s nurse, they knew I had gone home for the night, in fact one of his nurses was the one to suggest it. At first I thought I could never do it. After telling the counsellor what the nurse had suggested she made me see it was a good idea. She had also told me that Peter had made an appointment with her and while she couldn’t discuss with me the specifics of their discussion she felt she needed to warn me of a few things. He had confronted her, trying to get her to say that I had post-partum depression. My counsellor and I had discussed this and she was adamant that I didn’t have PPD. She said Peter was trying to use it as an excuse as to why our relationship was failing. She also said she was very concerned for me as it was becoming clearer to her just how controlling Peter was getting, he had requested she advise him of every counselling session I had with her and had tried to find out what we had been discussing. She was highly concerned and knew I needed a break away. After she had told me this I too realised that a break was exactly what I needed, for myself and my ability to stay strong for Alexander.

I returned before lunch the next day, I had missed rounds that morning but had spoken to Alexander’s nurse straight after and she kept me up to date. When I arrived back at the hospital Alexander’s nurse had said that there was talk about possibly having Alexander’s next surgery soon. All of a sudden I became nervous and excited all at once. This meant things were moving forward but I felt guilty for being excited about my son having surgery and I was so nervous about the complications that can happen with it. Alexander’s surgical team came around a little later and assessed him and spoke with me. They said that they were happy with the way things were progressing and at this stage they were scheduling his surgery for one week’s time. They were confident that they would be able to re-join his intestine with limited issues. There it was – that beautiful bright beam, this was the first time I had seen some light at the end of a very long, very dark tunnel. I knew I had a block of time to get through. A week. A week seemed easy in comparison to what I had been through. I should have known though, nothing in NICU is easy.

Looking down at this perfect little man made very second worth it.

…

Thank you for your patience as I tell The Story of Alexander. I was not prepared for the height of emotion I would feel as I retold his story, I find myself wanting to tell every detail and there are so many. So this is Part 2 and like this one, Part 3 will come in time. I cannot thank you enough for your response to his story so far, your love and support has been amazing. I hope you continue to enjoy his story as much as I am enjoying writing it.

*Name changed for privacy.