Made of Gray

Caleigh's Story

Holly D Gray9 Comments

Below is a summary of Caleigh's history from conception to present day. That saves you from reading about 400+ blog posts! Put your big kid boots on....here we go.....

Our story begans when Eric and I had been married for 6 years, and we decided to have our first child. 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 the first time we tried. I did have the flu between the 5th and 7th week of pregnancy. My doctor suggested I take Tylenol and Sudafed. Having the flu and taking small amounts of these medications was, I feel, the worst mistake I could have made, but no

one really knows. My pregnancy, other than the flu, was pleasant and normal up until my 18th week. At 15 weeks we decided to do the triple screen test to check for birth defects. We had no reason to do this other than curiosity. There was no family history. 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 not a genetic condition and 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. We were referred to a

perinatologist

at that point.

We had

bio-physical profiles

of our baby every two weeks to start with and then once a week starting at 25 weeks. Our baby had

intrauterine growth restriction

, a common issue with Gastroschisis. My placenta also developed an

accessory lobe

. This condition doesn’t have a cause and isn’t life threatening, per my doctor.

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 slow. I then received the first of 4 steroid shots to 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 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.

Our baby, Caleigh Amelia Gray, was born on August 15, 2007 weighing 2 lbs 2 oz and was 14.5 inches long at 28 weeks & 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. Caleigh was very critical after this surgery. 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 outlook.

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 supposed 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 sick, critical even. 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. TPN,

Total Parental Nutrition

, causes liver damage over time.

Notice the yellow eyes. After this surgery, Caleigh’s liver numbers were very elevated. At one point her direct bilirubin was 13 causing her skin to look bronze in color. Her IV nutrition, or TPN, was cut dramatically in an effort to save her liver. This tactic saved Caleigh’s liver & life. Due to the decrease in nutrition, Caleigh’s growth was at a stand still for almost 2 months. It was noted that Caleigh’s head growth was almost non-existent during this time.

Caleigh stayed in the NICU for a total of 201 days, around 6.5 months.

Her gastric problems persisted. She was completely TPN dependent. She received all of her nutrition through an IV central line.

About a month before we brought Caleigh home her irritability became overwhelming. She never slept more than 15 minutes at a time. She cried constantly and had to be held almost always. This was blamed on her brain injury. Caleigh came home, March 5, 2008, on TPN, 24 doses of medication daily and g-button feeds at 1 teaspoon an hour, this is considered

trophic feeding

.

While driving home from a GI appointment, 18 days after bringing Caleigh home, she stopped breathing. Eric started CPR and I called 911. Eric was able to help Caleigh breathe again and we took her in an ambulance to the local children’s hospital. Numerous tests were done. Caleigh had the

rotovirus

causing some congestion.

Our neurologist ordered an EEG. During the 30 minute EEG Caleigh had 4 complex partial seizures. Caleigh had no visible signs of these seizures. The seizures were what was causing the irritability and sleep deprivation. After being on Phenobarbital for 2 days Caleigh started cooing to us for the first time at 7 months old. Up until that point Caleigh had great head control. When the seizure medication was started her head control slowly got worse. The seizures made Caleigh’s body stay in a constant spastic state, hiding the low muscle tone in her body. Caleigh was released to come home from the PICU after 14 days. She came home on 1/8 oxygen 24 hours a day. We were only home for 1 week when Caleigh was re-admitted for a staph infection in her central line. We were able to treat with antibiotics and save the central line from removal. She was in-patient for 11 days.

May 2008, we made a trip as a family, to Children’s Hospital Pittsburgh to have Caleigh evaluated for a small bowel transplant. She underwent several tests while in-patient. It was suggested that we try to do the

STEP procedure

one more time before listing Caleigh for a transplant. Their thought was that her intestines might be able to be rehabbed. We came home and made an appointment with our surgeon. Two weeks later Caleigh had her 7th surgery on June 5, 2008. She once again had adhesions, but our surgeon was able to complete the STEP procedure. Caleigh lost 4 times her volume in blood and once again needed numerous blood products to remain stable. She came out of the surgery very critical. Over the next 48 hours Caleigh’s body began to swell. She needed the high frequency ventilator to breathe and IV access was becoming scarce.

Caleigh’s extremities were blue and gray. Her heart was in distress. It was determined that she had

compartment syndrome

. Caleigh was not stable enough to be moved from her bed. Our surgeon decided to open Caleigh’s abdomen in the PICU, in Caleigh’s bed. He drained the fluid off of her abdomen, left a drain and left Caleigh’s abdomen open, but covered. She immediately became pink and all her vitals slowly became stable. 5 days later she went to the operating room to have her wound closed. This was her 9th surgery. Caleigh was in the hospital for exactly a month for this operation and recovery. She came home oxygen free and taking in more enteral feeds than ever before.

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. As soon as Caleigh came off of TPN she lost a few pounds of fluid weight that she had been retaining. She became more verbal, babbling and cooing. Caleigh has

plagiocephaly

, which we treated with a

Prosthetic Cranial Band

for a short time with no results. On December 30, 2008 Caleigh had her central line removed from her chest and we were told she will never need IV nutrition again. The STEP procedure worked and Caleigh has more than enough bowel to intake normally.

In June of 2009, Caleigh was admitted to the hospital for dehydration and was diagnosed with a dairy intolerance and

Dumping Syndrome

. Caleigh was in-patient for one week.

As of July 2009, Caleigh is no longer on seizure medication. After a successful EEG showing no seizure activity

we began weaning the med Keppra. There is always the chance for Caleigh's seizures to show up again, but for now we are happy with her improvement.

In November of 2009, Caleigh was admitted to the hospital for dehydration due to a chicken allergy. One ounce of chicken caused severe dumping and in turn dehydration. Caleigh was in-patient for 4 days.

IMG_5455a_wm

In December of 2009, Caleigh was diagnosed as having

Dystonia

.

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. It has now been over a year since her last hospitalization.

DECSmile

Physically, Caleigh doesn’t roll from back to tummy although she tries by throwing her arms. She does roll from tummy to back with ease and it's often hard to keep her on her tummy for long periods of time because she loves being able to move this way.

Caleigh can now hold her head up in supine position at a 90+ degree angle and does so most of the time. She can extend her arms out to push herself up. Head control in a seated position is better, but there is still difficulty for her.

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Caleigh uses a crawler, KidWalk walker and a stander daily. She alternates her movements wonderfully taking steps in her KidWalk.

OCTletters

Babbling sounds have become more and more. Although mimicking sounds have not started. Caleigh started using an iPad in May of 2010. She uses the app Proloquo2Go and has excelled with this program. At 3 1/2 years old, Caleigh can spell and do addition and subtraction problems using her iPad.

Caleigh is now considered cognitively above average.

Septflour3

Caleigh is generally a happy child. She smiles often and giggles at noises and when being tickled. Caleigh's number one love in life is her music. Her vision has improved, although Caleigh has been diagnosed with having

cortical vision impairment (CVI)

. Because of this, Caleigh keeps her eyes closed a lot and it appears like she might be sleeping. That is not the case.

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She can see at a distance of about a one year old. She started wearing glasses at the end of July 2010.

Caleigh started using her Permobil powerchair in November of 2010. She is still learning the ropes. The future of Caleigh's mobility is very bright.

DECchair

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 at this point. Caleigh is the vision of strength, courage and determination. She is a miracle and a fighter sent to teach the world something new.

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Any and all written, visual, audio, and video content above are sole intellectual property of Holly D. Gray - Caleigh’s Corner and may not be used without permission from the author. Holly D. Gray is a plant based-vegan Artist homeschooling her daughter, Caleigh, in Texas. She is passionate about educating and inspiring families, like yours, around the world. Holly D. Gray - Caleigh’s Corner may be a proud affiliate of trusted, tried providers mentioned on this site, and may be compensated for your purchase(s). Copyright © Holly D. Gray - Caleigh’s Corner 2007 - 2015.

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