PeekabooNWA

Jack and Gunner: Two stories of how one disease changed two family’s lives forever…

Posted on 31. Dec, 2009 by admin in Personal Stories

Jack’s Story
Keeping His Memory Alive
The 2006 holiday season was off to a great start as my husband Matt and I found out that we were expecting a baby. At our twelve-week checkup, Dr. Duke (Park Hill Clinic for Women) was unable to find a heartbeat with the Doppler so he decided to perform an ultrasound. After a few nervous minutes, we were elated to see our baby’s heart beating away. It was then that Dr. Duke told us he noticed something that concerned him in the baby’s abdomen that he wanted to keep an eye on. He told us not to worry, so we didn’t.

A few weeks later, we returned to the doctor to find out the sex of our baby — a milestone most parents look forward to. Unfortunately, we didn’t leave knowing whether we would be decorating with blues or pinks; instead, we left knowing that we would soon be making a trip to see a high-risk prenatal doctor in Little Rock. We were optimistic, yet scared to death.

In March of 2007, we were told that we were expecting a baby boy who would be forced to fight to live from the get-go. Our son, whom we named Jack, was diagnosed with a Congenital Diaphragmatic Hernia, a condition in which the diaphragm doesn’t close during development; thus, any range of abdominal organs can move up into the chest cavity, causing the heart to be displaced and impairing lung growth. The survival rate is 50/50. Our world had been turned upside down, but we continued to make plans for Jack’s future and to enjoy his every kick.

On June 13, 2007, I went into early labor while at work, and later that evening I arrived at UAMS in Little Rock via helicopter. The doctors there were able to stop my labor, and I spent the next three weeks on bed rest. On July 6, 2007, Jack Ryan Gillham entered this world three weeks early, weighing 6 lbs and 3 oz. He was immediately stabilized and taken to Arkansas Children’s Hospital. Although the initial report on his condition was positive, six hours after his birth he was placed on ECMO, a heart/lung bypass machine, and it wasn’t a good sign. Three days later, he had surgery to repair his diaphragm. His stomach, spleen, colon, large and small intestine were in his chest cavity and his lungs were small, but he continued to amaze us as he fought for his life every day. However, when he was three weeks old, his kidneys failed, and he had to be placed on dialysis. He lived through so many circumstances that amazed us (and the doctors), but on August 16th, we were told that he had severe brain damage (as a result of all that he’d been through) and would never walk or talk or even recognize us. Our little man had fought so hard. Matt and I felt that he had fought hard enough and it would be selfish for us to keep him alive. So, the next day, we made the decision to remove him from life support. While it was the hardest thing we had ever done, we found some peace in the fact that his fight was over and he could finally rest.

We were determined to keep his memory alive and we knew that we wanted to help families in situations like our own. So, in October of 2007 the Jack Ryan Gillham Foundation was formed. This mission of Jack’s foundation is to offer financial assistance to Arkansas families of critically ill children during their hospital stay. Our outlook is that when you have a sick baby you have enough to worry about without the strain of bills and mortgage payments. If we can lighten these families’ loads, even just a little bit, then we are doing something amazing and we are beyond blessed to have had enough support to make this foundation a reality. I make sure that every family we help knows Jack’s story and what a brave little boy he was. Because after all, this is all because of him. I truly believe that he’s going to leave more of a mark on this world than half the people who live to be a hundred.

The Jack Ryan Gillham Foundation hosts several yearly events including a golf tournament, a poker run and a baby shower that collects needed items for the NICU at Arkansas Children’s Hospital and Ronald McDonald House of Arkansas. For more information on the Jack Ryan Gillham Foundation, please visit www.jackryangillham.org.
by: Jack’s Mommy, Bethany

Beating the Odds
Gunner’s Story

Eleven months after suffering a miscarriage, I was back in my OB/Gyn’s office to have an ultrasound. I was eighteen weeks along in my third pregnancy. “Its a boy!” My husband and I were ecstatic to be having our second son. While explaining to Cody that he was going to be a big brother, I noticed the tech measuring and re-measuring.

“Is everything okay?” I asked. The tech had noticed a few abnormal things, but she would have to let the doctor explain. Though the wait to talk to the doctor was less than ten minutes, it seemed like an eternity.

We quickly learned that our baby had a Congenital Diaphragmatic Hernia (CDH). We would need to see a specialist in Little Rock for further evaluation to determine the severity of his CDH. The doctor firmly stated that this is a very serious condition that occurs in one out of every 2500 births and that it would require surgical intervention to fix it. We stayed calm and made phone calls to our family and friends to share the news. I remember us telling our families that they had found a problem on the ultrasound and that he would need surgery but that it wasn’t that big of a deal. My understanding of CDH soon changed after only seconds of Googling it! I learned that we were dealing with only a 50% survival rate, and as I read on through tear-filled eyes, I soon realized the severity of his condition.

By the time I was 36 weeks along, I had to stay off of the computer because all the information was emotionally tearing me apart. We were scheduled for a c-section on Monday, July 23rd, 2007. At 2:19 pm, Gunner Cade Shobe was brought into this world. They immediately took him to do what was necessary to keep him alive. Despite all my efforts to keep positive, the neonatologist quickly crushed my spirits with one simple sentence, “He is not doing as well as we had hoped and there is a 98% chance that we will have to put him on ECMO.” ECMO is a heart/lung bypass machine that may possibly cause serious or even fatal side effects. The tough girl facade that I had held onto like a mask at a masquerade ball was quickly stripped away as the tears rolled down my face. I was so scared that we were going to lose our newborn baby. The doctor reassured me that it wasn’t my fault, but there weren’t any words that could erase the previous statement.

Through my tears, I saw a pale little baby with blue hands and feet and a million tubes coming out of him. There wasn’t any cuddling or even a kiss, just a brief touch of his hand before they transported him to Arkansas Childrens Hospital. I had to stay behind, and even though I had visitors in and out to keep me company, I had never felt so alone in all my life. My husband stayed in the NICU waiting room as I stayed at my hospital. Finally, two long days later, I was discharged and was going to get to see Gunner. My husband, my rock, showed me how to wash and gown up properly, and he was right there with me as I laid eyes on Gunner for the first time in the NICU. As strong as I tried to be, I couldn’t hold back the tears. There are no words to explain how heart-wrenching it is to sit there and watch helplessly when all you really want is to pick up your baby and hold him close to your heart. To everyone’s surprise, Gunner had turned around for the better on the transport to ACH and was able to avoid being placed on ECMO. He was doing great, and they scheduled his surgery for Friday to repair his diaphragm.

Friday, July 27th, we took the long walk down the hall as they transferred Gunner to surgery, and, again, the tears began to flow. My husband and I headed straight for the chapel and prayed for the safety of our child. As the hours passed, the level of anxiety increased. Finally, the surgeon came out and told us that Gunner was missing 75% of his diaphragm. His stomach, intestines and spleen were in the chest cavity, which had displaced his heart towards the right side of his chest and compressed his left lung. He said that as he pulled the organs down, the left lung started to inflate, which was wonderful news because this meant his lung did actually develop.

After surgery, Gunner was so swollen, we could barely recognize him. Within the week, he was placed under the billi-lights and all the tubes remained in place. We sat and watched as he struggled through the ups and downs. After two of the longest weeks of my life, I was able to hold my baby boy for the first time. I had to be careful, but I was overjoyed to feel the closeness of his body next to my heart. I remember crying as I gazed into his beautiful eyes. My husband and I spent the next seven weeks in a routine of rotating time staying with Cody at the hotel and staying at the hospital with Gunner.

We were discharged after 53 days, and Gunner came home on a pulse-ox, oxygen, and a feeding tube. We were certain that he would begin to thrive at home. He slept on an inclined wedge and we tried continuous feeds at night and bolus feeds during the day, yet the reflux continued with no signs of improvement. Three weeks of continual reflux and weight loss landed us back at Childrens Hospital for a second surgery. Gunner had a Nissen fundiplication with placement of a mickey button. In this procedure, the surgeon takes the top part of the stomach (fundus) and wraps it around the esophagus to lessen or prevent reflux. A mickey button is a little button on the outside of the abdomen with access to the stomach. We still use this to feed Gunner his formula, and we give his medications through it.

Once home, we started speech, physical, and occupational therapies, and for the next year and a half, our lives revolved around daily therapy, weekly weight checks, and numerous doctor appointments. His immune system was weak. He was hospitalized locally at around a year old for breathing difficulties, but other than that, we have managed to avoid any further hospitalizations up to this point. Gunner would drink from a bottle as a baby but never more than three ounces at a time. He would eat very little by mouth; therefore, most of his nutrition and calories came from the formula boluses during the day and continuous feeds at night. To this day, he continues to have difficulty maintaining or even gaining weight.

He is now two-and-a-half years old and weighs only 22 pounds. He is eating much better, and, like most kids, he loves pizza and chicken nuggets. We still have to do the continuous feedings at night, but we hope to slowly wean him off. We only have to go to Little Rock doctor appointments every six months just so they can follow his progress. He is extremely active and mischievous — definitely in the “terrible twos” stage. By looking at him, you would never know what all he has endured at his young age. He is our tough man and a blessing from God!
by: Gunner’s Mommy Brandi