Alexis

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Alexis was born on the 20th December 2009, 9 days past her due date after a very normal and uneventful pregnancy. I went to hospital to be induced and while I was hooked up to the CTG, we realised she was not moving much. We watched shocked as her heart rate fell from around 150bpm to just 49bpm and stayed there. The terror we felt as it just kept going down, down, down will never leave me, I thought then and there that we had lost her.

Alexis was born very shortly after via emergency caesarean. We heard no cry when she was born and she was worked on straight away. She was breathing but was having great difficulty and needed to be intubated. The first time I saw her was for just a moment as she was wheeled past me. The NETS team were called and took hours to stabilise her to be well enough for transport. When she was stable, she was brought in to me in her oxygenated travel cot, and one of the doctors started to tell me what would happen and what was wrong with her. She had passed meconium and had aspirated much of it and it seems she had been for a while. Her lungs were full of tarry, sticky meconium and she was struggling to breathe. She was intubated and on 100% oxygen. The doctor said to me "she is very, very sick". I could see she was struggling. My world just came crashing down. They didn't tell me if she would survive and I was too scared to ask.

Once she arrived at PMH, she was put into an induced coma so she could receive cooling treatment to alleviate any damage to her brain that may have occurred from lack of oxygen. She was cooled for 3 days. She was almost translucent and the only movement was from a ventilator which was giving her 400 breaths per minute. Her body was shaking and seemed lifeless. She started having seizures within a few hours. Alexis was born Sunday night and on Wednesday morning I got a call from a nurse at NICU (I was still recovering at my birth hospital and had not seen her since the night she was born) she said Alexis had taken a turn for the worse. We got to the hospital as soon as we could and the sight I was confronted with I will never forget. Our beautiful baby girl was attached to so many wires, machines and monitors, all vital in keeping her alive. I think I realised then how very, very sick she was. Before this day, I just expected to be told she was on the mend and would be home with us shortly. And so our NICU journey began.

Any-one who has had a sick and/or premature baby will know the absolute agony and the overwhelming joys that time spent in NICU brings. Alexis was ventilated/on oxygen for 4 weeks. To begin with, she was on the HFO Ventilator which was giving her 400 breaths per minute, so her chest was continuously wobbling. She moved on to a conventional ventilator when she got an infection (after a week) which gives 60 breaths per minute, so her chest moved in a much more natural rhythm. She was put onto CPAP after 3 weeks and while the doctors thought she would need to be on that for a week or more, she was off and onto Low Flow oxygen after only a couple of days. There were so many highs and lows.

On Christmas Eve she opened her eyes for the first time since she was born and it was the most wonderful Christmas present for us. But a few days after Christmas she got an infection and we finally had "the talk". We were told that Alexis' condition was extremely serious and she was starting to go backwards. The doctor said they were backed against a wall and if she continued to decline there was not much they would be able to do. I think this talk finally hit home with us. After a week we thought she would be getting better, not worse! We left the hospital for a short while and when we came back, Alexis looked terrible. She was almost grey and surrounded by doctors and nurses. That day we were sure we had lost her. A change of antibiotics, putting her on the conventional ventilator and a myriad of other 'tweaks' to her medications saw her slowly recover. I wish that I could express all the emotions that we felt and explain all the medical procedures that were done to her day in and day out but to do that would fill 100 pages. My baby was bruised all over from the cannulas they had to keep replacing and swollen with fluid from her inability to move due to the sedation and muscle relaxants she was given. She would try and pull the tube from her nose and would tug on her central line, so her arms had to be pinned down. She even pulled her catheter out. At times she would look at us with her huge eyes and just look so sad. A few times she would cry but because she was intubated, no sound would come out. It would break my heart and I would wish that she was still sedated. We saw her bagged a few times and turn blue before our eyes, but our darling girl fought hard. Slowly, slowly machines would be taken away, medications would be weaned and we would see improvements. As so many people say, it really is 2 steps forward, 1 step back.

By early/mid-January we felt confident that she would be ok and we could start to relax and enjoy our baby, even if she was still attached to monitors and tubes. I got my first cuddle when she was 13 days old. When she was stable, she had an MRI to determine whether the lack of oxygen had caused any brain damage. The MRI showed some damage to the temporal/occipital lobe. We have regular developmental assessments to make sure she is progressing normally. At almost 20 months, Alexis has a slight speech delay but we are so lucky to have avoided more. The damage could easily have been in another part of her brain where the outcome could have been devastating. Her final diagnosis was Severe Meconium Aspiration Syndrome, Hypoxic Ischemic Encephalopathy and PPHN (Persistent Pulmonary Hypertension of the Newborn). Once we were sure she was going to survive, some of the nurses told us how frightened they were that she wouldn't make it. She looked like such a big, healthy baby but we were told she was the sickest baby in the NICU. Spending time in NICU is extremely difficult and so very challenging. Especially when you see babies come and go while your little one doesn't seem to be showing any improvement. We thought we would never leave. The time went quickly but the days seemed endless. The constant stress and fear is all too consuming and you wonder if things will ever be normal again. The only thing to do was to take one day at a time. We would have good days and bad days (and very bad days) but we got there in the end. Babies are such incredible things, and their ability to heal is truly astounding.

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