Thursday, April 9, 2015

April 9 - Dear Nicholas Sparks (Guest Blogger Leah McClelland)

Dear Mr. Sparks,

My 4 th pregnancy was not planned but after the initial shock of being pregnant again, I started to feel happy and excited to be having another baby. We already had Jake 5, Britt 3 and Laine 1 and had thought our family was complete, but this baby didn’t think so. I started to have some spotting 6 weeks into the pregnancy and I went to my doctor who ordered an ultrasound and told me to rest. It continued on through the week. I was devastated. I can remember thinking ‘please let me keep this baby, this is my last chance’ because I knew if I miscarried we wouldn’t have tried for another baby as we already had the 3 kids we had planned on.

The ultrasound showed a heartbeat and a tear in my uterus wall, probably from lifting the other kids I was told. At 12 weeks I saw my gynecologist and he did another quick scan to make sure all was well. At 14 weeks I had another scan which measured the risk of Downs Syndrome and I can remember seeing the baby on the screen. I could see all its fingers and toes. I was amazed that in that short time how perfect the baby looked compared to the little dot I had seen only 8 weeks earlier.

When I was 19 weeks, Jake was rushed down by ambulance to Dubbo Base Hospital with pneumonia, 163 km east from where we lived. I was booked in for my regular 18-20 week scan the next day so I left Tim at the hospital with Jake and went to have the scan. The woman who did it was training another lady, so she said it might take a bit longer as they would have a good look at the baby. I told her that was fine. Being tired from the rushed trip to hospital with Jake I fell asleep for a few minutes while they did the scan. It was so relaxing. I asked if everything looked fine and told them about my previous bleed and she assured me everything looked great.

Everything progressed normally from there; I planned on working until a week before my due date, which was April 10th 2003. On March 26th I drove to Dubbo to see the gyne but while waiting in his surgery I had felt a massive contraction that lasted for ages. I told him and he said things were just moving along. Later, Tim went to donate blood and while I was waiting for him I had another pain. Being at the hospital I thought maybe I should go over to maternity and be monitored but nothing else happened so I decided against it. By 3 pm the next day, I felt terrible. I didn’t know if I wanted to go to the toilet or be sick so I rang Tim at work and he came home. He took one look at me and said ‘We’re going to the hospital!’ I had had very quick labours with Jake, Britt and Laine. Laine came so suddenly I just made it to the Nyngan Hospital for his birth and they had stopped delivering babies months before.

So off we went for the 163 km drive to Dubbo. Tim had second thoughts on this and took me to the Nyngan Hospital where they quickly put me in an ambulance given my last performance! I still didn’t have much pain and actually felt slightly embarrassed that this was going to be a false alarm. We left Nyngan at about 4.30 pm. We got there and 15 minutes later at 6.08 pm I gave birth to our 4th baby, a little girl we named Fallon Jessica. She weighed 8 lb 1oz (my biggest baby). I remember that when she came out she was crying but she was nearly navy blue in colour. I thought “She’s OK, I can hear her crying’ The nurse took her straight over to the bed and started giving her oxygen. My gyne had arrived just before the birth and he said “The baby just needs a bit of oxygen to help her along, she’ll be fine”. I watched while they gave it to her and I could see her nose go pink, then her face and then the rest of her body. They gave her to me to hold and she was fine! I only stayed in hospital for 24 hours as she was my 4th baby. She appeared to be doing what all babies do so we went home.

Fallon was fine until she was 5 months old when she contracted bronchitis and pneumonia. She was admitted to Dubbo Base for 5 days, where she had x-rays, IV antibiotics and oxygen. She seemed to get over this although her cry was like a little kitten’s cry until she got her strength back. At 8 months of age she had only rolled twice in her life and still couldn’t sit up. I thought this was odd, especially when the other kids were right on target with their milestones.

She got very sick then and she couldn’t even sit up with our support. She whimpered all the time and her temperature would not go down. After 3 days she was sent to Dubbo by ambulance again. Bronchitis and pneumonia were diagnosed once again, but this time something was really wrong. I can remember at about 11 pm on that Sunday night, the pediatric registrar came up to me and told me that she thought something was wrong with Fallon’s diaphragm. She felt it hadn’t formed properly. She told me she would mention it to our pediatrician first thing in the morning and Fallon would need to have a CT scan to have a better look. She also said she would need a general anesthetic for this. I told her that Jake had had a suspect episode of Malignant Hypothermia (which is a reaction with general anesthetic – another life threatening medical problem for our family) and as none of the other kids have had a GA we didn’t know if they were carriers of MH as well.

The registrar spoke to our pediatrician the next morning and they decided to compare the previous x-ray with the current one because of the risk with Fallon and the GA. Each day we were there I asked the doctor on his rounds what they intended to do and he told me to go and see him in 2 weeks when Fallon was discharged, as they couldn’t locate the 1st x-rays. Fallon took a long time to recover from this stint in hospital; she was very weak, pale and still whimpered like a kitten. I took her back in early December for her check up. She had just started to sit up at 8 ½ months old and the doctor was happy with her progress. Her follow up X-ray was due in March to make sure all was well. There was no mention of her diaphragm.

On March 2nd 2004, we went to have the chest X-ray then go to the doctor. The radiographer seemed alarmed when he checked the X-ray and told us to wait in the waiting room. We waited for ages then the radiologist came to speak to me. He said he had spoken to our pediatrician and we needed to go straight to see him. I asked him if there was something wrong with Fallon’s diaphragm and he said there seemed to be an abnormality but the doctor would explain it more. I took her to the doctor and he told me she would need to have the CT scan to investigate more. It was May 12th before we could get into the hospital to have the CT and Fallon was 13 ½ months old. She was constantly sick with chest infections and couldn’t crawl or pull herself up; she simply didn’t have the energy. They had to sedate her heavily for the CT because of the MH risk. The next day I took Fallon to a physiotherapist who came regularly to Nyngan from Royal North Shore Hospital. One session with her and Fallon started to crawl! Her crawl was a bum hop and she used her left leg to bounce herself off the ground and used her right leg and arms to push herself along as she bum hopped. We were so excited she has started to move by herself and she looked so funny!

The next Tuesday we got the call to say that Fallon needed to see a respiratory specialist at Sydney Children’s Hospital. The specialist’s registrar rang that afternoon and he spoke to Tim about what was happening. I was at work and I rang the registrar myself as I couldn’t fathom what was happening. He told me we were booked in for 3 days in the care-by-parent ward and that Fallon would have another CT scan as they had found a mass on her lungs and her kidney was in the wrong spot. With further testing they would decide what they would do however, she would probably require surgery at some stage. I went to bits. This was a whole new problem ahead of us. I pictured my grandfather who we called Dad O’Brien on dialysis all those years and he had eventually died of kidney failure. What was going on? What was wrong with my baby?

On June 16th we were at Sydney Children’s Hospital as Fallon had been sick again. The respiratory specialist decided not to do the CT because she was too sick to be sedated and went off the CT results from Dubbo. Her kidney was definitely in the wrong place and she needed to see a surgeon. Tim and I were in the kitchen of the care-by-parent ward when this loud man came bowling in asking if we were Fallon’s parents and introduced himself as Dr Bruce Currie, a pediatric surgeon. He was the funniest man I had ever met and he was so down to earth and friendly. He told us that Fallon had in fact had a Congenital Diaphragmatic Hernia and she had been born with it. It should have been picked up in my pregnancy ultrasound. The operation was scheduled for July 22nd 2004 and she would be nearly 16 months old. It would have been done straight away but she was not well enough. I found heaps of information on the Internet about CDH and Cherubs Australia was a lifesaver.

From then until July 22nd, Fallon was sick twice more with chest infections but on the day of the surgery she was well enough for things to go on as planned. It was about 2 pm when she went into theatre. I carried her in and laid her on the operating table and I kissed her and told her I loved her. I could hear the machinery starting up and they put the mask on her face. I could only think of the day we nearly lost Jake from his life threatening reaction to the GA and here I was leaving my sick baby with these people to have a major operation with the Malignant Hypothermia risk hanging overhead. The anaesthetist told me she would be fine and she was in the right place if something went wrong. Someone escorted me out into the hallway and I had to find my way back to the waiting room. However, I got lost, broke down and cried my heart out. We waited for over 4 ½ hours for some news. Finally, a nurse came out and said she was fine and they would call us very soon to see her. I was let into recovery with Fallon while she was still out of it. She had a morphine drip in and was on oxygen and she looked so sore. I just held her little hand and cried.

Dr Currie came and spoke to me and told me that the problem was a lot bigger than they first thought. Her spleen had moved through the hole into her chest cavity and her left kidney was partially through plugging the hole. The kidney doing this had actually saved her life as it kept everything working in a fashion. He had put the spleen and kidney back in place, taken out her bowel and put it back properly and sewn up the hole in the diaphragm. The hole was so big he had to sew the diaphragm to her ribs, as there was not enough diaphragm to sew together. He was pleased with how everything went and expected a full recovery. Fallon was taken to the ward later on that night and I slept in a chair beside her. I was too frightened to leave her. She was kept unconscious for about 36 hours and fed by a drip for 5 days. She still had her morphine drip in but the nurses slowly decreased her dosage and she became more alert. On about day 4 she was very itchy from the morphine and cried and scratched her face constantly with her little bandaged arms. They took out her catheter and slowly weaned her off the oxygen and morphine. On day 5 she could drink clear fluids and by day 6 she was sitting up and playing. Her bowel was very sluggish from the surgery and she had to be on medication for that for several months. The last few days in hospital she had a ball. All the tubes were out so she could bum hop around the ward, very slowly at first and then flat out. I could not believe the change in her as she even pulled herself up to standing in the cot one day. A few of the nurses said to me they had never seen a baby this old with CDH.

We left hospital and went home after 10 days. I think it was when we got home that it all hit me, all the what ifs came to mind, the threatened miscarriage, her colour at birth, her sicknesses and her late development with gross motor skills all made sense and, most importantly, it was a miracle she had even lived.

Written by Fallon’s mom, Leah McClelland (Australia)

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