Wednesday, August 19, 2015

August 19 - Dear Nicholas Sparks (Guest Blogger Danielle Kessner)

Dear Mr. Sparks,

I had a text book first pregnancy, that is almost everything in the text book I had! Morning sickness (and afternoon, evening and night!), heartburn, "hormone" headaches, stretch marks, "pregnancy" itch, etc. etc. etc. I found a great OB/GYN who was very understanding and easy to talk to which helped me get through a very physically uncomfortable pregnancy.

At 18 weeks I had a routine ultrasound. It was such a happy occasion, everything was fine with the baby and we were amazed that modern technology could allow us these first glimpses of our baby.

Ten days overdue, knowing I was carrying a big baby and still no sign of labour, I went to my OB/GYN's for a check-up prepared to get down on my hands and knees and beg to be induced. I walked into her office and before I could open my mouth she said "Well, I've booked you in for an induction tomorrow." I was so happy, finally this huge baby would be out and I could hold it for the first time.

That night I went to hospital and gel was placed on my cervix to try and get something happening. I had very mild contractions all night and didn't get much sleep. My waters were broken at 8:00am the next morning and then things started happening. From about 10:00am I had really close and very painful contractions. By 6:30pm I was ready to push. I pushed and pushed but this baby was not willing to come into the world. The head would crown and then retreat, over and over. After 2 hours it was decided the baby would need to be delivered by forceps. By this stage I didn't care, as long as they got it out! I was moved out of the birthing room down to the delivery room. My OB/GYN arrived. I also had the resident doctor and midwife in attendance and Julian (my partner) and my mum as support people.

At 8:51pm on May 21st 1992 after 13 long and painful hours of labour and a large episiotomy my baby was finally born (without forceps after all!). I delivered while on a birthing stool and as I slumped back against Julian in relief a sob of joy escaped from him. My OB/GYN asked me to tell everyone what the baby was a couple of times but I felt unable to move or even look down. Finally she said in a demanding tone "Danielle, look down. What is it?" I sat up, looked down and saw my baby for the first time. "It's a girl" I told everyone, my pain and tiredness completely forgotten. I held her in my arms and said to mum "She looks like I did in my baby photo's." and she agreed. I was told that they had to take her over to the "trolley" and get her cleared out as she seemed to be a bit clogged up. As my placenta was being delivered I asked how come she hadn't cried or made any noise yet and what was going on. I was given "reassuring" smiles while aspiration of her airways was carried out. That noise will live inside my head forever. I knew something was wrong but I wasn't too concerned at this stage. Julian told me later he knew something was seriously wrong from the start. I got onto the bed to be stitched and was told that they were taking her to the nursery and would call in the pediatrician "just to be safe". They gave me Alyssa for a quick cuddle before taking her away. I said hi and told her I was her mummy. We were looking into each others eyes and all I could see were her beautiful blue eyes, I didn't even notice she was turning blue. The midwife turned around, let out a gasp, said "This baby needs oxygen" and she was rushed off to the nursery. Julian went with her and mum left to tell our other family members what was going on. Julian's family were in the waiting room and had been for a while and my dad and a brother were at home, an hour's drive away.

The resident stitched me, covered me with a thermal blanket and left to find out what was going on. I was all alone in more ways than one. At about 10:00pm Julian returned and told me that the Pediatrician had arrived and ordered a chest x-ray. They had trouble contacting the on call radiologist but he had arrived and the x-ray was being taken.

It must have been another half hour before anyone else came in. It was the resident who had been given the nasty job. She said to us "You have a very sick little girl." She briefly explained what the x-ray had revealed and said the pediatrician would be around once Alyssa was stablised to give more details. She told us she would have to be transferred to the Children's Hospital (Over two hour drive away). Julian asked what her chances were. "Not good." we were told. It was the first time we had ever heard of the congenital defect, Diaphragmatic Hernia. All through this I kept thinking that I should be crying, my baby was very sick and would most likely die. But I didn't cry, I couldn't, even though I tried. I was completely numb, inside and out. I could not understand what CDH was or how our baby could possibly have it. What on earth was going on?

A few moments later my mum came in and wanted to know what was happening. We told her what we knew and she practically ran out of the room. She looked very upset and I think she didn't want to upset us.

My OB/GYN came to see us at some stage and was so angry that it had not been picked up on ultrasound. She said that she would call the radiologist first thing and have them go back over the films. I remembered the happy day of the ultrasound and wished that it hadn't been so happy and that the CDH had been discovered. At least we would have been able to deliver her close to the Children's Hospital.

It was 11:00pm before the pediatrician came around. He explained what a diaphragmatic hernia was and that she needed to be transferred. The only thing to save her would be an operation to correct the abnormality. He said he had been in contact with a pediatrician from the Children's Hospital and was told to keep on with the treatment he had implemented until the ambulance arrived.

I had a shower and was taken by wheel chair around to the nursery. As we rounded the corner we saw our families in the waiting room. It looked like they were holding their breath waiting to see how we were reacting. I gave them all a great big smile and could see their immediate relief. I had already decided that Alyssa was alive and I would think positively. If she died then I would deal with that situation as it happened.

Alyssa was receiving hand ventilation as the doctor felt it the most gentle form of ventilation. She looked so alive, she was very alert and followed us with her eyes. It was like she knew who we were. Her eyes were the darkest blue eyes I had seen. All of our family were allowed to visit with her and there was no restriction placed on us at all in this regards. My dad, an aunty, a close cousin and my best friend all came to the hospital. Most of the closest people to us saw Alyssa alive and alert.

We were shown Alyssa's chest x-ray and the hernia was pointed out as that "big black mass". How could something so big be missed on the ultrasound? It was thought that a lot of her gut was up in the left part of her chest and her heart had been pushed across to the right side. Her left lung had not grown very much at all and her right lung was slightly small. We were told no matter what the outcome she would have brain damage. They were unable to get enough oxygen through to her brain because of the size of her lungs. This did not worry us at, as long as she lived!

It was about 1:00am that the transfer team arrived and all our family left. Julian was to stay at the hospital with me overnight and we would travel to the Children's the next morning. We had both been a long time without sleep and everyone felt it would be unsafe for us to drive until the morning.

The transferring doctor came and spoke to us. He said it was a large hernia and her chances were not good. He told us babies they expected to lived often died and those expected to die sometimes lived. He said they just didn't know. He said it was high possibility that she would not even survive the trip and if she did it would put things in a favourable light. They would call us the moment they arrived.

We went to say good-bye to Alyssa and I said "Oh, she's fallen asleep." They explained that they had paralyzed her in order to give her the best chance of surviving the trip. I felt sick to the stomach when they said that but trusted them just the same.

Before falling asleep that night, holding the photo's of Alyssa we had taken, I had my first cry.

Neither of us slept much and we were both awake at 5:00am that morning when the call came through from the Children's. The nurse came into our room, smiled and said "She made it." We were so relieved and happy. As soon as I was examined and discharged and we went home to prepare for our trip to the Royal Children's Hospital in Melbourne (Victoria, Australia).

To our clothes in the suitcase I added a knitted bonnet, some booties and a change of clothes in which to bring Alyssa home from hospital in. The bonnet was to keep her head warm in hospital. She was such a big baby that the one used for her in the local hospital was too small (we were to discover that Alyssa weighed 9lb 8oz and was 59cm's long - 50cm's being average!). Julian called the hospital before we left and was told that she had improved throughout the morning after a very rough time during the ambulance trip. We said good-bye to our parents and set off expecting to return soon with our baby all mended.

We finally got to the hospital and were shown to an interview room where we waited. A nurse and doctor arrived to explain Alyssa's current situation. She had deteriorated over the past couple of hours and we were warned that she did not look like she had when we last saw her. A social worker also came in and counseled us. Were not able to see Alyssa straight away as they were "working" with her. When they finally led us through to Intensive Care there were a number of medical staff surrounding her. As they moved away I couldn't believe my eyes. I burst into tears. There were tubes everywhere and her skin colour was strange and patchy. For the first time since she had been born I realised that she actually was so very sick. I couldn't stand to be there, looking at her like that. We left really quickly. It was breaking our hearts to see her. We wanted to go for a walk and get some fresh air so we could gather ourselves. We were told that it wasn't a good idea as she could die anytime, in fact her heart had stopped a number of times already that morning and they had struggled to keep her alive for us to see her.

She was not responding at all and if for some miracle she lived and became stable enough to operate on she wouldn't have a very good quality of life . By this stage she had severe brain damage, she would never walk or talk. They were unable to get a reading on her blood pressure and we were asked what we wanted the doctors to do.

We both said that we would never want to be left to live that sort of existence. We agreed that the best thing to do was to turn the life support off. They asked if we would like to hold her after this was done. Julian said no and I said "Well I do." He said he would come and sit with me but that was all.

Well, I had not held her very long when Julian said "Come on, my turn." He was so glad he held her, he would have regretted it forever if he hadn't. I don't know how long we spent with her, it was like time had come to a complete stand still.

When we decided that we were ready to leave we handed Alyssa back to the nurse. She cuddled her so close, kissed her and was whispering to her. It was very touching to see that she cared so much for our baby but it also hurt me a great deal. This nurse had probably spent more time with Alyssa than we had. I know our children are not possessions for us to own but I felt for an instant like Alyssa belonged more to the hospital than to us. Of course I carried her inside me safely for 9 long months and she is more alive to us now than anyone else but I felt what can be described as nothing else except jealousy when the nurse said good-bye to our baby. I felt guilty for feeling that - just the start of the many guilty feelings to come.

In the years that have since passed, tears, far to numerous too count, have been shed over our beautiful little girl, Alyssa.

Alyssa only lived for 20 hours and 20 minutes but touched us in a way nobody else ever could. She changed us and our lives so completely and brought so much pain into our lives, yet I would not give up my few precious memories of her for anything.

"You are so beautiful to me, You're everything I'd hoped for, You're everything I need, You are so beautiful to me." (Word's from the Joe Cocker song we played at Alyssa's funeral.)

That's Alyssa and how we, her mummy and daddy, thought of her and always will. We just wish we could still have her here with us in body. She will always live in are hearts and souls and is remembered each and every day, for the rest of our lives.

Alyssa's mum, Danielle Kessner (Australia)

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