Friday, July 24, 2015

July 24 - Dear Nicholas Sparks (Guest Blogger Jo Cowan)

Dear Mr. Sparks,

This is the story of Finn Solomon Cowan, our beautiful son. My husband Neil and I decided in the spring of 1999 that we wanted a baby, and so I took my folic acid, ate healthily, exercised moderately and did all the things I was supposed to do. That's why it seemed SO unfair when, at the 20-week scan, we were given the terrible news that our baby had a left-sided diaphragmatic hernia. Like most people, we were just debating whether or not to find out the sex of the baby, when we were hit with this bombshell. I can never find the words to describe how dreadful it is to be carrying a longed-for baby that has only been given a 50% chance of survival. One of the worst things was that everyone, obviously, could tell that I was pregnant and used to ask when it was due, whether it was a boy or a girl, what we were going to call it and so on. It was so difficult to answer. All my friends and work colleagues knew how serious the situation was, but to casual acquaintances all I could do was to answer quickly, not tell them the real truth, and change the subject.

We had a number of scans at Liverpool Women's Hospital, and an amniocentesis to find out if there were any related chromosomal problems. Three very long weeks of waiting. Fortunately there were no other problems, and in the meantime we read up on CDH and tried to keep as well and positive as possible. We were offered the possibility of a termination, and whilst I considered it, Neil didn't, so we just had the rest of the pregnancy to wait and wait and wait. In a way I wished I hadn't known about the problems, so that I could have enjoyed the pregnancy properly. It also spoiled my second pregnancy, because I was so afraid it would happen again. However I do know that the lady who did the original scan saved my baby's life because I am certain that if I had just delivered normally then he would have died because they would not have been aware that there were any problems. So I had to know about the problems because the medical staff had to know. Waking up every day knowing that all I could think about was my precious baby, yet I had to go to work and be professional and normal and try and be positive. I was realistic about the 50% diagnosis. Neil and I could talk about what would happen if our baby died. No one else was able to talk about it with us. It was too hard for them. I can't blame them. Almost all of our friends and family were supportive, but I found false positivity the hardest to deal with ("It'll all work out in the end!!" "Cheer up!") There was a very good chance that it wouldn't work out, and I wanted people to be realistic. I couldn't support any of our families through their distress, I had to be selfish and do it my own way. For instance, both my mum and mother-in-law wanted to buy baby clothes and equipment; it was their way of coping, to pretend that everything was normal and carry on, but I just couldn't deal with that, so I had to refuse. Similarly I couldn't deal with antenatal classes and so we had a couple of hours alone with an antenatal teacher, instead of going in a big group like everyone else.

I was induced two weeks early, so that all the medical staff could be available for the birth. The baby "Finn" was lovely, with black hair and dark blue eyes. We were able to have a quick look at him before he was taken away to be stabilised. He seemed very alert, looking around at everything. Later on we were able to go and see him. He was covered in wires and machinery. To me, he wasn't real. I didn't feel any connection to him. I knew I should, but it was like looking at someone else's baby. I tried hard to feel any emotion, especially when I was trying to produce some breastmilk, as the nurses advised me to look at his photo, but I just couldn't feel any connection to him at all.

The day after his birth, he was transferred to Alder Hey Hospital in Liverpool. He went in an ambulance, and we were told there wasn't really room for us to go with him. To this day I don't know why we didn't insist. When we got there, he had obviously been very unstable in the ambulance and the staff seemed very panicky. One re-iterated the chances of his survival at 50%. I thought he was saying that he thought things were going to be OK, but now I can see that he was probably trying to prepare us for the worst. I think I was on a hormone-induced high from the birth. I felt really out of it and wasn't really aware of how serious things were.

Finn was now on an oscillating ventilator, more "heavy duty" than conventional ventilation. He had two nurses looking after him, just him, day and night. Again, at the time I just thought, "Oh, that's nice!" but now I can see that it was because he was so ill. This was two or three days before Christmas, my emotions were all over the place. We spent every minute with him. (We were staying in Ronald McDonald House, next door to the hospital, so that we could be close by. I am so glad we didn't have to travel home and back every day. I am also so grateful that we didn't have any other children to look after.)

Eventually the doctors were able to stabilise him, he went back onto conventional ventilation on Christmas Day, and then on Boxing Day he had his operation. I had to sign the consent form, and it was so hard to do. As he was wheeled away, he was clutching my finger in that really strong way that babies have, and I had to pull him off so that he could go. I just remember crying and crying and wondering would he be back to us, would he be OK.

The operation lasted just over two hours. Neil and I were in the waiting room when the surgeon came in. I just had to look at his face to find out how the operation had gone. He had the biggest smile I had ever seen; he was genuinely delighted for us. Things had gone well and we were able to see Finn soon afterwards. His scar was small and neat and he seemed settled.

The next few days were good. He was of course kept ventilated, sedated and paralysed, but once or twice he opened his eyes and looked around. The play therapist had stuck some black-and-white pictures onto his incubator and he seemed to be really interested in those. However, we still didn't know if he was going to survive. I learned not to ask that big question, because no one could answer it, but to concentrate on the smaller issues like how much nutrition he was having, and what each machine or test was for. Apart from quick meal breaks, we spent every minute with him. We got to know the nurses pretty well. Almost without exception, they and the doctors and the rest of the staff were amazing, caring, supportive, helpful, informative, realistic, dedicated. How do you even begin to say thank you?

One evening we came back from dinner into Intensive Care and they wouldn't let us see him. There were curtains round his incubator, and lots of staff. We just sat and waited and waited and waited. Eventually they came out and took us over to him. He had suffered a pulmonary hypertensive crisis and looked terrible. I thought he was dead. He was white and still. He had to go back onto nitric oxide, a special gas which had helped him in the early days. It was such a setback, such a kick in the teeth, I felt floored by it, and unable to cope. I wasn't even able to phone my friends and family.

That, I think, was the worst day ever. I had been gradually allowing myself to hope that he would be OK, but now it felt like we were back to square one.

But he was strong, and gradually his blood gases improved and he needed less ventilator support. Finn began to open his eyes more as his medication was reduced, and he began to seem more like a real baby. I began to feel comfortable doing his "cares" changing his nappy, putting Vaseline on his lips, cleaning his eyes and nose.

At first I wasn't able to do those things for him because I thought the nurses were trying to get me to do it so that if he died, I would be able to know that I had looked after him. I thought it was one more indication that he wouldn't make it.

We celebrated New Year's Eve 1999 / 2000 the new millennium at his bedside, with fizzy grape juice from the nurses. It was so weird to know that the rest of the world was partying, while we were with our sick son in Intensive Care. But it felt right we were celebrating his life and the fact that he was with us, not looking forward to the future. One hour at a time that's what the doctors used to say to us.

Over the next few days he began to improve. He got very cross with his tubes, and tried on several occasions to pull them out! His ventilation was reduced to C-PAP and he tolerated more and more breastmilk (which I had been storing in the freezer at Ronald Macdonald House, along with the other residents' frozen pizzas!) One day, January the 9th, the doctors took his breathing tube out. It was so strange and lovely to be able to see his nose. Also had my first cuddle with him. He was 3 weeks old. From then on he began to grow stronger and stronger and he was moved out of intensive care to the neonatal ward, a less high-tech environment where we grew to know him as a baby rather than a collection of tubes and wires. I used to sit and cuddle him for hours, totally falling in love with him, and he learned to breastfeed. At last, 5 weeks after he was born, we took Finn home.

Although he is now a strong, happy, healthy 5 year old, in many ways the first year at home was just as scary as our time in hospital. I am going to write about that in the next edition.

Our son Finn survived a left-sided CDH and came home at 5 weeks old. We then breathed a sigh of relief and got on with the process of caring for a tiny baby who was often sick and had to take 4 different sorts of drugs to help his reflux. He was seen by specialists often for his breathing and his development. He had major problems putting weight on and is still only on the 2nd percentile – which means that 98% of kids his age are heavier than him. Weighing him seemed to be the only way that anyone medical could assess whether or not he was doing OK. I was breastfeeding him and I was told than my milk was "inadequate" (I'll never forget it) and that I should stop and put him on formula. It wasn't something I wanted to do, to say the least, but I had to give it a chance so that he could put on weight. However it didn't make any difference. He was on all sorts of special high-calorie milks, including Infatrini, and Maxijoule, but he still was sick every day or every other day and hardly put on any weight at all.

He ended up in hospital 5 times in that first year, with chest infections, which required oxygen, antibiotics, X rays and so on. He caught rotavirus (sickness and diarrhoea) from one stay. He was so skinny he had no reserves to draw on and a simple bug would bring him way down; a cold would go to his chest and he would be hospitalised again. At 18 months he had what was diagnosed as an asthma attack, and was really poorly, needing intravenous steroids. From then on he had an inhaler morning and night for 2 years. I have lost count of how many times we drove frantically up to the hospital in the middle of the night.

In spite of all this, Finn was a gorgeous baby boy who would "talk" to me all day and watch everything that was going on and take it all in. I always believed that he was "normal" mentally. However, I was beginning to notice that he wasn't developing as fast as other babies his age were. It was so hard to admit to myself. He didn't hold his head up, he hated being on his front, he was skinny and floppy and, at 8 months, couldn't sit. He hated solid food with "lumps" in and had to have everything pureed for ages until he was 2 or so.

He was referred for physiotherapy and went every week to a special school to swim in their pool, and then do exercises in a group afterwards. I HATED the thought that I was going to have a disabled child. I used to think about wheelchairs and special schools and just feel, "I don't want to be different. I don't want my baby to be different." I had worked with special needs kids in the past (I am a teacher) and loved it but I didn't want to be the mother of a child with special needs. My brother's son was younger than Finn, but could do more, as could my friends' children. It was so difficult to realise.

Gradually we took him off the drugs one by one, with the doctors' support. He began to get stronger, and one memorable day he sat for 8 seconds unaided. We took a whole roll of film that day! Looking back at it, he looks strong and healthy and bright. We loved him so much. He began to be less fussy with his food, although it was a long process. His first tooth came through and I started to worry less about him. He filled out and even started to look a bit chubby!

His physical development caught up quickly and he took his first steps at 10 and a half months, walking everywhere by 13 months. When I think about it, I don't know what started him getting so much better. Did he just grow out of being so ill, did I relax, did coming off the drugs that were supposed to be helping him do it what was it? I'll never know. But he was so great! He had a lovely laugh; he loved to be tickled, he loved feeding the ducks, he loved trains and cars and buses, and chocolate and biscuits and making a mess.

Around his first birthday we decided we wanted another baby. It took a lot of talking about; we couldn't have gone through everything we had been through again, this time with a toddler to look after too. I saw our GP and he referred us to a genetic counsellor who told us that, given our family history, the chances of having a baby with CDH again were only 2%. That still sounded quite high to us "1 in 50" but we crossed our fingers and started trying anyway.

Louis was born when Finn was 2 years old. He was a beautiful baby too- except everything went so well for him. He put on weight (in fact he was really chubby!), he fed beautifully, (my milk proved more than adequate this time and I fed him till he was 1!) he developed at the right pace - I was so pleased that I could do it all properly, I felt so much like I had something to prove and that I was succeeding this time where I had failed with Finn.

Finn was a difficult toddler (but then, so was Louis and just about every other 2 year old I have ever known!) but he turned into a wonderful child. He's now 5 and a half, loves school, hates fruit, loves watching videos. He does Tae Kwon-Do and has just learned to swim without armbands. He needs an inhaler when he has a cold, but is in general pretty robust and healthy and strong. He is skinny still, but he hasn't noticed that fact yet. His chest has some recession still and he has a "bulge" below his scar which balloons when he coughs or laughs (does anyone else have this?), but again he doesn't yet know that he looks slightly different. He knows his medical history and loves telling everyone about his operation and his "poorly tummy."

Finn is our little star, along with his brother, and we are delighted to have our two special boys.

Finn's mom, Jo Cowan (Great Britain)

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