Every once in awhile I come across a family that truly emanates the meaning of love and perseverance. I had the honor of working with the Joines family to celebrate the life of a very special little boy, Caleb. The following information was given to me by Caleb's amazing mother. I want to thank her for letting me into such a private experience within her family. I am truly blessed for her trust and her willingness to educate me about the difficulties her son has faced so far in his short life.
"Caleb was born on July 7, 2009. We were honored to receive such a blessing. In the delivery room upon examination Caleb was immediately taken to NICU. We didn't know it yet but he was born with Esophageal Atresia. We were devastated. At less then a day old Caleb was taken to the OR for his first of many procedures. He received his g tube so that we would be able to receive nutrition while we waited for repair.
Caleb spent 9 weeks in the NICU in the Children's Hospital of the Kings Daughters and in that time he endured many tests and stretching procedures to help the esophagus grow, however it became painfully obvious that we would not be able to have the necessary to fix him anytime soon so we refocused our attention on getting our beautiful boy home. I spent day in night by his bedside, by the time Caleb was a month old there was nothing I was not allowed to do (barring medical procedures), I did all his feedings and suctioning. We buged doctors everyday about releasing him, though reluctant at first they finally yielded and we set a release date which came and went as he later developed a UTI, which added an extra 10 days to our stay. Caleb finally came home with us on Sept 6, 2009.
When we got home we had nursing care 7 days a week 12 hours a day and it seemed like the appointments we endless. During this time I thought and thought and prayed and prayed and could not imagine waiting such a long time so I got on the computer and did not research and found the wonderfully, amazing Dr. John Foker who directed us to the equally amazing and fabulous Drs. Jennings and Linden.
On October 25, 2009 after a hospital stay due to respirtory distress and chronic aspiration we were flown to the Childrens Hospital Boston for treatment. On October 27 Caleb went down to the OR were his esophagus was placed in traction to induce growth. It would take 3 attempts at repair before Caleb was finally repaired on November 20, 2009. It was such a tight repair that he was remain heavily sedated and seated in a chair position to avoid damage.
In all this time I was unable to hold my baby but I was finally able to hold him on December 4, 2009! What a wonderful day it was.
All did not go as smoothly as we thought it would and Caleb developed a leak at his connection sight which meant he still need his chest tube and more waiting. It was then that we knew Caleb's first Christmas would be spent in the hospital in Boston.
Before Caleb would be released from the hospital the he would endure several infections and a battle to keep his esophagus from stricturing. He received two dilations before doctors realized they needed to try something else. Caleb had a stint placed in is esophagus on two occasions. Finally it stayed open though narrow. We were able to be released from the hospital on February 3, 2010.
We thought hour jouney was coming to an end but in March at our home hospital Caleb under went his routine esophagram. I knew something was wrong when the radiologist stopped the procedure in the middle of it. He got on the phone and called up stairs to our GI doctor. We went up for a meeting and received the news that Caleb now had a TEF. I burst into tears unable to control my emotions. We went home and once again made arrangements to go to Boston for treatment and once again right before we were to leave Caleb had a serious asthma attack and was hospitalized. Once again the doctors would not allow him to be taken to Boston by us so they arranged another med flight.
On April 22, 2010 Caleb went into the OR to repair his TEF. He did amazingly well and after a short stay was released from the hospital on May 8th, just in time for mothers day.
It was after this last procedure that we started to try and feed him by mouth again and it was this time the he would not receieve another g tube feeding. On October 19, we were directed to remove his g tube and on November 29th Caleb had is last trip to the OR to have his g tube site closed.
We are so proud of our little miracle, he amazes us every day. Developmentally he is right on target, he loves to talk and run. He loves playing with his daddy on the computer and helping mommy "cook" in the kitchen. He likes to keep clean and "asks" to wash his hands and brush his teeth.
Though our journey continues as we go from test to test and from doctors visit to doctors visit one thing is for sure: I wouldn't change any of it! My son was made especially for me!"
22 months have gone by. Caleb is thriving. He is energetic, happy and loving. During our session he easily took my hand and led me into the field to go play. Listening to him laugh over and over again brought smiles to all of our faces--and there was no denying the love present on his mother and father's faces.
I am proud to be a part of The Littlest Heroes Project to provide such wonderful keepsakes to the families of little ones who truly are the littlest heroes to overcome the odds.
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