Once Caleb was stable enough after birth, they began routine eye exams every two weeks to screen for a condition called Retinopathy of Prematurity (ROP). ROP is a disease that occurs in premature babies where abnormal blood vessels grow in the retina, which is the layer of nerve tissue in the eye that enables us to see. This growth can cause the retina to detach from the back of the eye, leading to blindness. About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment and about 400–600 infants each year in the United States become legally blind from ROP. Following his exam on Monday, October 13th, I received a message from his doctor at the Wilmer Eye Institute and my heart dropped, as I knew that it could only mean bad news. ROP is classified in five stages, ranging from mild (stage I) to severe (stage V) and we learned that Caleb had developed stage II "plus disease" meaning that his blood vessels of the retina had become enlarged and twisted, indicating a worsening of the disease. Laser surgery (also called photocoagulation) was performed on Tuesday to help destroy the peripheral areas of the retina in hopes that it would slow or reverse the abnormal growth of the blood vessels. Since the surgery focuses treatment on the peripheral retina, these areas will be scarred and some amount of Caleb's peripheral vision may be lost. However, the goal is to preserve the central retina to allow him to be able to perform vital functions like seeing straight ahead, distinguishing colors, reading, etc. Although ROP surgery has a good success rate, not all babies respond to treatment. Caleb will be followed closely to see if his eyes are responding to the laser treatment, but we will not know the results and whether or not the progression of the disease was stopped until around October 28th. If the ROP continues to worsen, Caleb may need additional laser and/or other eye surgeries. Of all things that could happen, the potential for blindness is one of the scariest to me as a parent. The waiting period continues to be extremely difficult and I can only hope that Caleb is lucky enough to see the world and all of the things that we take for granted on a daily basis.
Caleb's next obstacle and fourth surgery came on Wednesday, October 15th at just eighty-eight days old. The doctor's plan for the day was to just monitor Caleb's pain and keep him comfortable since eye surgeries are very tough on babies. That afternoon, a random chest x-ray was ordered to check the placement of Caleb's feeding tube. It was discovered then that he had re-herniated and a portion of his bowel was once again up in his chest. Although we knew this was a possibility, nobody expected it to happen so soon after his initial CDH repair. Caleb underwent emergency surgery that night. It is believed that this subsequent surgery to repair the recurrence of his CDH was needed due to the severity of Caleb's CDH, his age at repair (twenty-four days old/31 weeks gestational age), and the fact that a GORE-TEX® patch was used during the initial surgery. Often times, the patch pulls away from the chest wall, as the child grows, causing a recurrence. It turns out that his diaphragm needed to be re-patched in two places and unfortunately, the general pediatric surgeons are not confident that the patch will hold due to the difficulty they had in utilizing the available tissue to make the repair. The condition of the patch will be closely monitored by doctors to ensure that it remains intact.
Caleb is three months old today and has now undergone more surgeries than some people have in a lifetime. After seeing him do so well the past few weeks, I feel as if we are starting over. He was re-intubated for surgery and will remain on the conventional ventilator until his respiratory support can be weaned, his feeds have been stopped, and his pain is being controlled with both methadone and morphine. I miss my very alert little boy terribly and am longing for the moment when I can snuggle with him again.
Through all of this, Caleb's strength is admirable. We will continue to focus on his amazing progress thus far and stay positive as he recovers from the events that took place this week. I can only wish that things begin to get easier for him...
We ask for your thoughts and prayers as we await the results of Caleb's eye surgery.