Saturday, July 4, 2015

July 4 - Dear Nicholas Sparks (Guest Blogger Carolina Chalk)

Dear Mr. Sparks,

Wow, I was pregnant again! It was quite a bit quicker this time but we were not about to complain. Our daughter, Chloe, had taken a while to decide to come along but had been a joy from birth. I was a bit nervous how I would cope with two children under eighteen months, but six months later, a bigger house, new area and a very much larger waistline I remember thinking I would be glad to have two children as long as I wasn't pregnant anymore. Symon and I were planning a home birth to be able to stay close to Chloe, I remained reasonably healthy and our scans had both been fine so it all looked good. I was overdue and my feeling was that I had done my part, he was cooked, time for the eviction notice!

I waddled along to my +40 week appointment determined to ask for a cervical sweep. Instead I walked away with a scan booked for the next day and a rather puzzled feeling. The next day, our scan showed our baby boy was breech and on the large side. We tearfully agreed to a Caesarean Section. The next available slot was Tuesday, 18th of March 2003. The operation went well and the surgeon proudly showed us James who promptly urinated all over him. Later that day, James was weighed at a tremendous 11lb 9oz. Two days later, I had received a clean bill of health and we were told James had a slight heart murmur but that it was not serious. Symon took us both home.

Ten days later, on Sunday, 30th March 2003, we returned to the hospital but this time to the children's ward. James had developed severe sternal depressions with every breath but was apparently well in every other way. Then the tests began. I think we tried just about every piece of diagnostic equipment the hospital had. X-rays, ECG, full heart scan but the worst were the blood tests. James' sats were taken every hour and he was given injections every four hours. The nurses explained that antibiotics sting as they are given but I was beside myself that James was never allowed to just sleep. I remember becoming frustrated with the doctors, perhaps it was the hormones but I just couldn't grasp why we couldn't go home. Finally, on Wednesday morning, James was given an MRI scan. We were then sent straight to ultrasound where I had to breastfeed James to keep him still enough for the sonographer to work. There it was on the screen, even I could see it! James' left kidney was pulsing up through his diaphragm.

Our consultant gave us the full diagnosis back on the ward. James' left lung had presumably collapsed and was not functioning, his left kidney was much larger and higher than it should be and was likely to be plugging a hole in his diaphragm, preventing the other abdominal organs from entering his chest cavity. To make matters worse the kidney was irritating the tissue surrounding his heart. James needed surgery and he needed it as fast as possible before his condition worsened. Other than that, they couldn't believe how healthy he was!

Four hours later, James and I were blue-lighted to Great Ormond Street Hospital. We arrived at 8pm, James' sats were taken again, all medication checked, notes handed over and his general health exclaimed at. I sent Symon home with instructions to sleep, give Chloe a big cuddle from us and to come back on Friday. At midnight James had yet another chest X-ray. I don't remember sleeping much that night, every time James wriggled a respiratory alarm would go off and a nurse would come and check him. Eventually, I persuaded the nurses to let me turn the alarms off each time and check him. Thursday morning brought more tests, a fourth X-ray, more blood tests and a new line, since his original one had closed. Finally, James had another ultrasound; two consultant radiographers and I saw the herniated kidney again. They too queried his seemingly good health but I felt that they finally believed the diagnosis from our local hospital.

As it turned out the radiographers were not convinced but instead decided to add another diagnosis to the pot, James might have a diaphragmatic hernia or he could have a membrane instead of a muscle for his left diaphragm. Either way, a nice Registrar explained, the answer was surgery. They were just waiting for a bed on NICU so could I please sign this consent form? Exhausted, devastated, I remember trying to ask the Registrar intelligent questions while quietly crying. How far from my natural home birth was this? I know I asked, why now? Why couldn't we wait till he was bigger? and, if he was so well, as everyone kept telling me, why did it have to be repaired at all? I think I got answers to everything but what sank in the most was the fact that James was stable at the moment, so surgery was a good idea now but that in truth James was struggling for every breath and the entire team were amazed that he had managed to remain self-ventilating for so long.

Symon arrived that evening and we spent the worst night of our lives. James was booked into the Friday afternoon surgery session, so we waited again. James was not amused at being kept hungry and took to screaming if he saw me. I expressed to keep busy! My sister arrived with a good luck charm from my niece and nephew

just as we were called. Watching James go under the anaesthetic had both Symon and I in tears. We had been warned it could take a couple of hours but at three and a half hours with no news Symon and I decided to go and take the tour of NICU we had been offered. We arrived minutes after James had arrived from theatre so we were there when he was extubated and amazingly he croaked his protest.

Professor Pierro explained to us that James had indeed had a diaphragmatic hernia, which had been repaired and the left kidney repositioned, but he had also had to remove a portion of James' left lung, as it was apparently useless. James astounded the NICU staff with his resilience. He never needed to be intubated again, though it was close a few times. He managed to breathe by himself and rested with the help of C-PAP. The nurses turfed me out to eat on a regular basis and I carried on expressing! I remember laughing when the nurse commented to me that he thought all James was really interested in was when he could eat again! Sunday afternoon he got his wish! By Monday James was breastfeeding and I was delighted not to have to face the machine again! Tuesday saw myself, James and 30 bottles of breast milk return to our local hospital. Wednesday evening we were allowed to go home with strict instructions to come straight back if we needed anything or were worried.

It has taken us a long time to relax over James. Each milestone a relief, first full night's sleep (about 10 months!) first cold, first Christmas, first birthday. Nothing ever seems to be easy with James, every illness seems to hit him harder but I will admit to being slightly irrational over him. Our main problem still seems to be that even when he is ill he never looks it! Everyone still looks at him and says, "He's not sick" - it drives me insane! Overall though James is healthy and although we are still having hospital appointments and tests (now for kidney function) James is such a ratbag it is impossible to become overprotective of him! Much of last year remains fuzzy in my memory.

When I think about it, I can remember every moment but I think that I choose not to in daily life but rather to get on with today. One thing that does stay with me is a sense of how lucky we have been with James. Knowing now what I do now about CDH, I am grateful that James was so healthy and huge to start with! When I get fed up with the latest medical hassle I always remember how much worse it could have been. My heart goes out to anyone having to cope with CDH or to watch a loved one fight it."

James' mom, Carolina Chalk, (Great Britain)

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