Saturday, October 24, 2015

October 24 - Dear Nicholas Sparks (Guest Blogger Caroline Gould)

Nadia Helen Gould was born at 2.45pm on the 10 September 1999 at 33.5 weeks. She weighed 2.470kg and was 46cm in length. During the pregnancy Jon and I needed and were constantly given Hope, so that is what we named her: Nadia.

I had an amnio at 17 weeks and, as the obs. did a full fetal at that time, nearly didn't return for another. I had an easy pregnancy with my first child and had just the one scan at 19 weeks, so I didn't really see the need. But I loved to see my babies on the screen so returned just for the sake of it at 21 weeks!! Little did I know that I was to see Nadia on the screen every week for the next 11 weeks.

The scan at 21 weeks revealed what the obs. was sure was a hole in the diaphragm and told me the smallest bit about CDH and that these things often righted themselves. On returning the next week there was a bigger shadow and the group looking at the pictures were beginning to question what they were seeing. By the third week the shadow was even bigger and they started to talk about a cyst on the lung. By 25 weeks this "cyst" was so large it was advised that it be drained immediately and then a shunt put in as a permanent drain. This way the lung (left) would be able to grow. By now I was under the care of a superb obst. (Jan Dickinson) at King Edwards Hospital for Women in Perth. Jan saved Nadia's life. She drained the "cyst" - a ghastly experience that meant piercing through the uterus and into Nadia's, chest and drawing the fluid out. (I had two courses of steroids to help the lungs a little in case the procedure bought on labour.) On the screen Nadia's heart, which was pushed far over to the right, moved back into place and her left lung began to look a little more like a lung. I was told that the "cyst" would probably fill up again over 4 or 5 days and therefore a shunt would need to be inserted for drainage. Returning 5 days later the cyst had not filled up at all. We were told that the vessels around her heart were looking much less stressed and they confessed that Nadia would not have survived passed 26 weeks without the drain as the heart was under too much strain.

It was decided that I should be scanned weekly to view the "cyst". Over the course of the next 8 weeks or so the "cyst" filled up slowly with fluid. Meanwhile they were very unsure of all the other shadows that they could see and found it very difficult to work out where the stomach and other organs really lay. Looking back I wondered how many pre-diagnosed cases of CHD they had actually seen because CDH was never really mentioned by the team at Kind Edwards.

At 32 weeks it was decided that another drain was required. This time Nadia would not have a bar of any needles going anywhere near her!! Initially they wanted to paralyse her to keep her still during the drain but they never got near her and I passed out due to the drug they gave me to stop the uterus contracting. I started to contract anyway (!) and ended up in the hospital for the night but luckily the contractions stopped. Another attempt at a drain was scheduled for the following Friday.

Meanwhile I was growing bigger and bigger. I was HUGE with fluid and the following Thursday evening, after a rather strange day involving a great deal of rushing around preparing for Nadia's arrival (!) my waters broke. (Nadia really did not want any more invasion of her space!!) Contractions were few and far between but I was kept in over night and Jan and the paeds were booked to see me in the morning. The scan showed that there were still gallons of fluid in me and that there was no way Nadia could get her head down for a natural birth. So a C-section was scheduled for 2pm that afternoon. The operating room was packed full of doctors and paeds - Nadia had 5 waiting just for her!!

With my waters lapping the boots of the doctors, Nadia let out a hearty squawk. She was handed immediately to the paeds who immediately intubated her. They wrapped her 43and held her up to me. I saw her nose and eyes and then she was gone. And this was the hardest part of all. I was now powerless to help her. I had to immediately focus on the c-section recovery. Jon was able to follow Nadia and he was impressed with the number of doctors assessing her. She had 3 x-rays over a course of 1/2 an hour. By the third it was clear. A large hole in the diaphragm (left side) with her stomach, spleen, intestine/bowel and a small corner of liver sitting neatly in the left lung area. She was breathing with a little help from the ventilator and did not need oxygen.

They decided to immediately move Nadia to Princess Margaret Hospital for Children and the repair was scheduled for the next morning. Jon went with Nadia, following her ambulance on the short journey. Jan came and explained to me about the fluid, all the scans etc: because the stomach and gut were squashed into the lung cavity, there was not enough room for Nadia to swallow fluid, pass through the stomach and the gut and out again. So it kept building up in her stomach (what they thought was the cyst) and in me.

I was able to telephone directly through to Nadia's nurses and did so every hour or so. She had her operation the next morning and Jon was there to talk to the doctors. The operation took 1 1/2 hours and the surgeon (Mr Gordon Barron-Hay) declared it was a satisfying job. Jon and Nadia's doctor phoned me to say that she was strong and her vitals were good and she needed no help with oxygen. I spent the day ensuring I would be free from the epidural by the evening so that I could visit Nadia the next day. I longed for her and if it wasn't for the wonderful nurses - especially the night nurse who came and talked to me regularly, I would have gone mad. Jon came to collect me the next (Sunday) morning and at last, there was my wee girl. I was fully prepared for the sight of her and focused wholly on talking to her hoping she would recognize the old nag that had been spurring her on all those weeks. She was heavily dosed on morphine but I was able nuzzle my face right up to hers. It was wonderful. Returning back to my hospital that evening was awful. I sat on my bed, desolate, wondering what on earth I was doing there. There were no rooms available in the neo-natal ward for me so I couldn't stay with Nadia. But I was desperate to get out of my hospital and be with my family so I called for the doctor on duty and requested that I be discharged. She agreed I could be discharged the next morning.

For the next week I set off to the hospital every morning and stayed until late evening. Expressing my milk every 3 hours, and taking care of Nadia. Deep down I was as scared as, but remained focused on the fact that Nadia seemed to be kicking all the hurdles to touch. There was joy in her first bowel movement, joy as the morphine doses came down, joy as she was able to tolerate more and more breast milk - through a nose tube. The ultimate was day 5 when the doctors took her off the ventilator. I sat there all afternoon watching every breath she took. Day 6 she went onto the breast for the first time - very hard and tiring for her, wonderful for me. By day10 she was moved into the nursery attached to the neo-natal ward and I was moved into the hospital. I was now responsible for all her care, except her obs.

She gradually weaned off the nasal tube and onto the breast and began to put on weight.

Day 14 Nadia came home.

Nadia had emergency surgery to relieve bowel blockages at 6 weeks old. She was home within 5 days. She has suffered reflux and has remained small for her age. Her diaphragm took a while to regenerate of its own accord and her x-rays continue to pull the punters.

But she is now a robust and healthy 2 year old, talking like a 12 year old with the attitude of a 16year old!!

Nadia's mom, Caroline Gould (Australia)

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