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Ashton soon after he was born

Our first child, Ashton Thomas Fedonick was born at 11:04 pm on Valentines Day, February 14th, 2004. He was 5 weeks early, and weighed a mere 4 lbs, 6 oz. He was born with a rare congenital disorder called Gastroschisis. All of his small bowel, large bowel, and part of his stomach had herniated through his abdominal wall and was growing on the outside of his body. There were about 9 people (Doctors, nurses neonatologists) in the delivery room with Bryan and I, waiting for our little angel.

As soon as he was born they whisked him away...I didn't even get to hold or touch him. The transport team said they had to take him over to the Children's Hospital of Eastern Ontario immediately. Early the next morning Bryan and I went to see him in the NICU. It was such a shock to see him. Every limb had an I.V. or two stuck into it. Since he couldn't eat, he was given a solution intravenously called TPN, or Total Parental Nutrition. It is basically everything you would need to stay alive that you would normally get from food - However it is very bad for the liver. He had a breathing tube down one of his tiny nostrils. His other nostril had a tube in it that went to his stomach, suctioning out his stomach contents. He also had a catheter.

His bowels were in a "silo" or plastic bag hanging from the top of his bed to allow gravity to settle the bowels in the abdominal cavity. I was scared to touch him. The nurses told us he had been given a drug called Pavulon to paralyze his muscles so he couldn't move. Every medical term went over my head. Every time an alarm sounded, I worried. There were 4 other babies in the NICU that had Gastroschisis. I somehow felt comforted by this.

Nine days later Ashton went in for surgery to repair the defect. An hour later the surgeon came and told us that everything went well. She was even able to close the muscle, all though it had been a VERY tight fit. He had a huge bandage over his tiny tummy and every time the respirator breathed for him, his skin cracked because the bowels were so big for such a tiny little tummy.

 

Ashton's silo pouch

The month of March was the first time I saw my baby's eyes. The first time I held him. Almost a month! We were so excited to start feeding him. Things did not go as expected. He constantly projectile vomited bile, had tiny to no bowel movements, and his NG tube was still draining a lot of bile. They tried everything...feeding him tiny amounts, clamping his NG tube for specified periods of time and even giving him enemas 2 times a day. They finally did a barium swallow test to see if there were bowel blockages. The test was inconclusive, but something needed to be done.

On April 29th, he went in for a second surgery. They found two areas of atresia, which is an incomplete formation of the intestine. They removed approx. 24 cm of small bowel. The weeks following this surgery were the worst. We found out that the surgeon had spilled bile and feces into Ash's abdominal cavity when she made an incision into the bowel. He had a bad blood infection. He was loaded with antibiotics. He was again hooked up to so much; urinary catheter, two I.V.'s, a central line, respirator. He was so swollen that I didn't even recognize him. He had episodes where his blood pressure would dip real low, then skyrocket, along with his heart rate.

The doctors thought he may be having seizures from pressure on his brain. His incision area was so filled with infection that they needed to reopen it and let it heal on its own. I could tell by the look on the nurses faces that they knew this wasn't good. Someone told us to prepare for the worst. But our little man is strong and he pulled through. It actually took him about three and a half weeks to be off the breathing tube and all the drugs. They did another barium test and it went right through in six hours! We were ecstatic that this nightmare was finally over!

We started small feeds again with the breast milk that I had been pumping and storing all along. He started projectile vomiting, and draining from his NG again. The doctors kept telling us not to worry, his bowels were just slow. I KNEW something was not right but we kept trudging along, day by day. On May 29th, they tried a different kind of milk...maybe he's allergic to breast milk they said. Neocate is a formula that is predigested. On June 2nd he developed an infection in his central line. He was bombarded with antibiotics again. Within 2-3 days he was getting better but the blood work showed signs that the line should be taken out. He seemed to be doing well on the Neocate; once again our spirits were raised. On June 7th he developed another infection; this time it had occurred when they had taken the line out it had disrupted the bacteria. Luckily he recovered in a couple of days and a new central line was put in. The vomiting started again.

That's a lot of tubes

Another barium swallow was done and once again the results were inconclusive because Ashton's bowels are all mish mashed inside of him, unlike normal bowels. I asked for a second opinion because I was sick of seeing my baby suffer. The Hospital for Sick Kids in Toronto, Ontario said that CHEO was doing everything they could. They could only suggest a barium enema, and a couple of drugs that may help with motility of the bowel. I finally requested a different surgeon. I was sick of being in the hospital. I was sick of seeing Ashton suffer. I was scared to see his liver numbers climbing, and him getting more yellow everyday, indicating liver disease. The TPN that was keeping him alive was also slowly killing him. The new surgeon agreed with me but gave me a scary warning: Ashton may have another blockage in his bowels...however, if they went in and saw no blockage, it meant that Ashton had what they call "dysmotilty", basically meaning that his bowels could not move food through and absorb it. If this were the case, he would need a full bowel transplant. This was extremely experimental, and only done a few places in the world. I cried my eyes out for days. I was so scared for Ashton.

For the first time since he was born I had no hope in the world for him. On June 29th he developed another line infection and he had thrush. He sure loved his medicine though! Since he was still not eating, ANYTHING in his mouth was a good thing! On July 8 he received a blood transfusion in preparation for his surgery the next day (by this time he had had about 8 or 9 transfusions since he was born). Four hours later my prayers were answered when the surgeon told me that one of the areas that had been repaired during the second surgery had blocked, and they needed to remove four more cm's of bowel. He was very hopeful for a full recovery. I was not going to hold my breath this time.

Once again he came back full of tubes and wires. This time the breathing tube was down his throat. He recovered within a week! What do you know...he started vomiting again. I cried by his bedside and wanted to give up. On top of that he got another line infection. Luckily, he recovered and the feeds FINALLY started working. Everyday I tried not to be too hopeful...but it was truly working this time. He even started eating rice cereal and apple sauce, and he was pooping everyday!

After all this time, Ashton had developed an "aversion" and didn't want to eat...so he had to be fed through the tube in his nose. This kid, who used to eat anything, now wouldn't. So Bryan and I had to learn how to shove tubes down our son's nose with him screaming and panicking, and how to work the pumps that would deliver his milk.

On August 2nd every tube was taken out of Ashton for the first time! He was a free man. The TPN was finally done. We started talking about discharge...we were able to take him on passes to the Ottawa apartment to make sure the feeds were going ok...well he soon started losing weight at a rapid pace. We were sent up to the 4th floor at this point, as he no longer needed intensive care. After two weeks or so his liver numbers started to improve and he looked less yellow. He was eating solid foods and loving it! His favourite at the time was sweet potatoes. He also gained weight, but not a good amount. The doc's said we could probably go home, but they wanted to take him in to surgery for a liver biopsy just to make sure the TPN hadn't left any permanent damage. September 2nd was the biopsy. Luckily, the breathing tube and I.V were taken out right after.

Then came the weekend...I was holding Ashton on my lap and I felt wet. I picked him up and I had blood all over my jeans, blood was running down his legs and covering the inside of his diaper. I yelled for the nurse, and they said that this can be normal after a biopsy. Well this continued to happen every couple of hours. A G.I. specialist came in to talk to us. She said she wanted to bring him in to surgery for an endoscopy...a camera down his throat. She said she would explain why after. They brought him in on September 6th. The results were not good. All along we had known that Ashton's spleen was enlarged but we never really knew what it had to do with anything. Well now we got our answer...Ashton's liver biopsy showed cirrhosis...his liver was dying.

 

"Not much news today Mum"

The endoscope showed that he had Portal Hypertension... since the liver was not processing his blood properly it was backing up into his spleen. After it had nowhere else to go, it backed up into his esophagus causing "varicies", which are basically huge veins filled with blood that can bleed at any time. Ashton would need to be transferred to the Children's Hospital of Western Ontario in London for a liver and possibly small bowel transplant...our worst nightmare was happening.

He was transferred to the PCCU to keep an eye on his bleeding...there he was all hooked up to tubes and machines again. He was receiving blood transfusions sometimes up to three times a day. He waited in the PCCU until he was airlifted to London on September 9th.On September 28th; we were able to bring Ashton home with us to await his liver transplant. We are seriously considering a living donor, as we do not want our baby to wait too long. We are just enjoying every single moment we have with our angel until the time comes. You can read more about Ashton's fight for life at www.ashtonsworld.com.