Courage, Determination and Strength....
That's What Little Girls are Made of.
Our story begins when Eric and I had been
married for 6 years. At that time we decided to have our first. In January
of 2006, I stopped taking birth control and started charting my
fertility cycle. I wanted to be off of contraceptives a full year before
conceiving to make sure the hormones were out of my system. My cycle
was extremely prompt and therefore I knew when I was ovulating. I
finished up my bachelors degree in fine art photography that December,
and the following month we conceived just as planned. I did have
the flu between the 5th and 7th week of pregnancy. My doctor suggested I
take Tylenol and Sudafed. Otherwise my pregnancy was pleasant and normal
up until the 18th week. At 15 weeks we decided to do the triple screen
test to check for birth defects. That same day we left for a
3-week vacation. We received a call the day we got home stating that
there was indications our baby had spina bifida.
We went in that afternoon for an ultrasound. After doing the ultrasound
we were put in another room for the doctor to consult with us. She
brought in medical books with articles and pictures and told us our baby
would be born, not with spina bifida, but with Gastroschisis.
Gastroschisis is an abdominal birth defect that occurs at 5-8 weeks of
pregnancy when the abdomen is closing. In the case of Gastroschisis the
abdomen doesn’t close all the way leaving a hole where intestines and
other vital organs develop outside the body. Gastroschisis is still considered not to be a
genetic condition. We were told it is considered environmental.
Basically, researchers don’t know what causes it. There is research
leading to a decrease in blood flow during those critical weeks of
abdominal closure. What causes this restriction is unknown. We were referred to a perinatologist at that point.
I had bio-physical profiles of our baby every two weeks to start with and then once a week starting at 25 weeks of pregnancy. Our baby had intrauterine growth restriction, a common issue with Gastroschisis. My placenta also developed an accessory lobe. At
28 weeks and 5 days of pregnancy we had our weekly ultrasound.
Immediately we could tell something was wrong. The baby’s intestines
that were visibly outside the body were very dilated. A heart rate
monitor was placed and we waited for an hour. The heart rate was steady
but the baby’s movement was almost none responsive. I then received the first of 4 steroid
shots to help develop the baby’s lungs. We were told that we would deliver
within the week. We were sent home with instructions to pack and go to
the hospital that afternoon. During the night, I received more steroid
shots and the baby was continuously monitored. By the next morning we
had another ultrasound and we were told that we would have our baby in a
little under an hour due to decreased movement. I had a relatively calm
c-section other than issues with the spinal block. You can read about Caleigh's Birth Story here and here.
Our baby, Caleigh Amelia Gray, (pronounced Cali) was born on August 15, 2007 weighing 2 lbs 2 oz and 14.5 inches long at 28 weeks and 6 days. She came out crying, which was such a blessing to hear. She was taken immediately to the NICU where she was evaluated. It was noted by the surgeon that "there's nothing left," referring to her bowels. Caleigh’s first bowel surgery happened one hour after she was born. Over the next two weeks she had 4 more bowel surgeries. One of which was an emergency surgery due to intestinal perforation. After the 5 initial procedures Caleigh was left with only 20 cm of small bowel. At this point she was diagnosed with short bowel syndrome.
In November of 2007, still in the NICU, a
routine head ultrasound was done. This was the second ultrasound
preformed, the first was done at a week old. The radiologist requested
to do the ultrasound again stating the difference between the first and
second was so different. After a confirming third ultrasound, Caleigh
was diagnosed with Severe Periventicular Leukomalacia.
Eric and I requested a MRI, and it was done the next week. The images
were devastating. The word severe is an understatement. We were referred
to a wonderful neurologist who made no predictions or presumptions
about Caleigh’s future. We were truly blessed with this positive
On December 13, 2007, while still in the
NICU, Caleigh had her 6th bowel surgery. She had a new central line
placed, a g-button put in for enteral feeds and a fundoplication. She was scheduled to have the STEP procedure,
a bowel lengthening procedure. When the surgeon opened Caleigh’s
abdomen he found massive intestinal adhesions. He spent 3 hours, with
another surgeon, cutting away the adhesions. Caleigh lost 2 times her
own blood during the surgery. She was kept stable the whole time with
many blood products. After the surgery Caleigh was very critical. She was on the oscillator,
a high frequency ventilator, for about a week. She did stop breathing
and had to be ‘bagged’ for a short time. Recovery was fairly slow, and
enteral feedings were pretty much non-existent at this point. Caleigh remained on TPN, Total Parental Nutrition. After this surgery, Caleigh’s liver numbers were very
elevated, caused by the continued TPN usage. At one point her direct bilirubin was 13 causing her skin and eyes to
look bronze in color. Her IV nutrition, or TPN, was cut dramatically in
an effort to save her liver. We believe this tactic saved Caleigh’s life. Due to the decrease in nutrition, Caleigh’s growth was at a stand
Upon arriving home, Caleigh began to blossom. She was handling more tummy time, but her head control was still lacking. Enteral feeds went up in volume and TPN nutrition went down in volume. Eventually, Caleigh was getting enough calories from her g-button feeds to stop TPN. This happened the end of November 2008. On December 30, 2008 Caleigh had her central line removed from her chest. The STEP procedure worked and Caleigh had more than enough bowel to intake semi-normally.
In June of 2009, Caleigh was admitted to the hospital for dehydration and was diagnosed with a dairy intolerance and Dumping Syndrome after trying to advance on oral feedings. Caleigh was in-patient for one week.
Caleigh is no longer on seizure medication as of July 2009. After a successful EEG showing no seizure activity we
began weaning the med Keppra. We keep Dystat with us at all times as an emergency precaution.
In November of 2009, Caleigh was admitted to the hospital for dehydration due to a chicken allergy. At this point we were trying a blended diet through her g-button. One ounce of chicken caused severe dumping and in turn dehydration. Caleigh was in-patient for 4 days.
In December of 2009, Caleigh was diagnosed as having Dystonia. This coincides with her previous diagnosis of cerebral palsy.
In January 2010, Caleigh was admitted to the hospital for dehydration. During this stay Caleigh could not tolerate feeds. Her 4th central line was placed and TPN was started once again. 5 days after her central line was placed it became dislodged. She went back to surgery and the line was re-threaded back into the vein. 10 days later Caleigh was admitted to the ICU for yeast sepsis. Her temperature was 103F and she had an hour-long grand mal seizure as a result. It was later decided that she received a tunnel infection from the line being re-threaded into the vein just a few days earlier. That central line was removed and a new line was placed shortly before she was discharged from the hospital.
By May 28, 2010, Caleigh’s g-button feeds
were giving her enough calories. TPN was discontinued. One month later
Caleigh's central line was successfully removed. Caleigh has officially been off of TPN since this time.
In August of 2013, Caleigh started to show symptoms of dumping syndrome after we had been advancing her feeds 2ml a week for the past two years. She had reached a critical limit in the volume that her body can handle. After a barium study showed that Caleigh's transit time was an hour and a half, it was confirmed that we needed to slow down her feeds. At this point Caleigh will not be able to eat anything orally or have meal type g-button feeds.
Caleigh is non-verbal and uses her iPad running the app Proloquo2Go to communicate. She started using this technology at three and a half years old. It has truly opened up a world of advancement for her. You can read more about that here. Equally as important, Caleigh uses a manual wheelchair and a powerchair to get around. She is just learning how to use her powerchair and has been practicing since November 2010. Caleigh is an avid swimmer. She was extremely blessed with the gift of her very own swimming pool. You can read more about the amazing Claffey Pools family here.
After an unimpressive start with our local public school system in 2011, we happily decided to homeschool Caleigh. She is cognitively above average and well ahead of grade level at this point. Homeschooling has been such a blessing that we do not foresee returning to the public school arena.
In the Spring of 2015, we decided to transfer Caleigh intestinal care to Boston Children's Hospital. GI, Surgery, Hematology, Endocrinology, and Genetics are now followed by Boston. We generally take Caleigh to Boston 2-3 a year for follow up care.
Overall, our story has been a whirlwind. This is something that only God could direct. We love our daughter with all our being. Life without her doesn't seem possible. Caleigh is the vision of strength, courage and determination. She is a miracle and a fighter, and Caleigh will do amazing things.