Saying that I have a sick baby is very hard for me. I am his advocate, protector, and most importantly, his mother. So admitting that something was wrong went against every instinct I have. But I do. I have a sick baby.Wes was born with hydranephrosis of the right kidney. Hydranephrosis is a condition in which the kidney retains fluid, and does not drain properly. Before Wes was born, the doctors thought that this condition was so severe that he would probably lose his right kidney. Joe and I were devastated and spent many weeks in prayer, trying to figure out what it would mean long term for him to only have one kidney.
However, after Wes was born, the doctors were pleasantly surprised to find that the kidney was not nearly as damaged as previously thought, and over time, his kidney would correct itself. About a week after his birth, the doctors started noticing that Wesley was not breathing quite normally. Once again, the doctors were hoping this was something that would correct itself over time, but it did not take long to see that his condition was more severe than initially thought.
After multiple tests, it was discovered that Wes had subglottic stenosis (a narrowed airway beneath the vocal cords) and severe GERD (reflux disease). Every time he would reflux, his airway would swell more and more and his breathing would get louder and louder. There were days where it was so difficult for him to breathe - we could see each and every rib.
The doctors at one point told us they were concerned his diaphragm would collapse because he was working so hard to breathe. Because his breathing was so difficult, and he was expending so many calories to breathe, it did not take long for him to fall off the growth charts. At two months old, he had not even gained a full pound. We quickly became regulars at the Children's Hospitals here in Dallas, particularly the PICU. Wes then had a G-tube placed. Side note - to this day, that has been the only surgery Wes has had!Our stays in the PICU were long, exhausting and emotional. The PICU would not allow for bathrooms in the rooms, or food and drink, so the rooms would maintain sterility in case they ever had to do emergency surgery in the room. For the families, we were required to be there to support our children, but the ability to take care of ourselves was very limited. Joe and I met families that had been in the PICU for 3-4 months, with no end in sight. They are exhausted, broken and just drained. And the one thing we kept saying over and over was it felt void of Jesus there because of how hard the days and nights were.
We quickly learned through our experiences that actions speak a thousand times louder than words, so Joe and I decided to start an organization to show His mercy and grace to those who are caring for children in the PICU. We were able to give a big donation at Christmas and provide toys and Christmas gifts for the families at Dallas Children's Hospital. We were also able to provide the PICU funds to purchase items to bless the children that were patients such as mobiles, bouncers, coloring books, and magazines.We are now hoping to take care of the families. We have started Comfort Bags to help the families that are there to get through their stay just a little easier. The bags contain travel size toiletries, because many families find themselves there in emergency situations and have not packed or prepared for their stay. We are hoping that this act of kindness towards the families in need will be passed on, once those families are discharged. All items needed for the bags, as well as more information about this ministry, can be found on my blog. Thank you for listening to my story. It is very difficult to talk about what hurts us at times, so I pray that by opening up about my son's struggles, I have encouraged others to seek peace and His grace.
