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.
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
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
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.