When we woke up this morning, we didn't think it would be the day for Caleb's big surgery. Over the weekend and past few days, Caleb has proven to be a difficult baby and the doctors, nurses, and respiratory therapists have struggled to find Caleb's happy place on the ventilator. Last Thursday, Caleb had finally been stable for his first thirty hours in a row. Although very happy about every minute he was stable, it did not last as long as we had hoped. During this time, the nurses discovered that Caleb loves to be on his belly. Also, last Friday's head ultrasound remained unchanged from Tuesday, August 5th and the bleeding remains extremely scary for us as parents. We can only hope that it resolves itself with no or few lasting problems. In the meantime, he continues to earn the nickname CC for "Complicated Caleb".
We had requested a "family meeting" yesterday morning to discuss Caleb's status and his need for surgery. This included the neonatologists (NICU doctors), pediatric surgeons, nurses and respiratory therapist. Since they had been unable to stabilize Caleb on the conventional ventilator, the question remained whether his CDH surgery could be performed on the oscillator ventilator. This is not preferred due to the jiggle and vibrations this vent creates on the body. During the meeting, both the surgeon and neonatologist expressed their concern that Caleb may not survive the surgery and if he did survive the surgery, they were still not sure his lungs would mature enough to allow him to breathe on his own in the future. Since Caleb had good and bad days on the vents with no consistency, the damage caused by his lungs expanding and collapsing is unknown. This lead the NICU doctors to believe that the only way to move forward would be for Caleb to undergo his CDH surgery sooner rather than later. It was then that the decision was made that surgery would be scheduled as soon as possible, which turned out to be later that afternoon. Although the hope is that they will be able to stabilize him once his bowel and liver are no longer in his chest cavity, the outcome is unclear.
The "warm and fuzzy" feeling we so desired as parents was immediately replaced with feeling helpless and scared. It was one thing to know this was a possibility, but to hear it from the doctors was much harder than we could have ever imagined. The next few hours were filled with anticipation as our family arrived at the hospital to see him, consent forms were signed, and we tried to prepare ourselves for the moment they would take him into surgery. In this time, we also received the best gift of all, which was being able to hold our baby boy for the first time at twenty-four days old. We will be forever grateful for the doctors, nurses, and respiratory therapist that made this possible.
We had requested a "family meeting" yesterday morning to discuss Caleb's status and his need for surgery. This included the neonatologists (NICU doctors), pediatric surgeons, nurses and respiratory therapist. Since they had been unable to stabilize Caleb on the conventional ventilator, the question remained whether his CDH surgery could be performed on the oscillator ventilator. This is not preferred due to the jiggle and vibrations this vent creates on the body. During the meeting, both the surgeon and neonatologist expressed their concern that Caleb may not survive the surgery and if he did survive the surgery, they were still not sure his lungs would mature enough to allow him to breathe on his own in the future. Since Caleb had good and bad days on the vents with no consistency, the damage caused by his lungs expanding and collapsing is unknown. This lead the NICU doctors to believe that the only way to move forward would be for Caleb to undergo his CDH surgery sooner rather than later. It was then that the decision was made that surgery would be scheduled as soon as possible, which turned out to be later that afternoon. Although the hope is that they will be able to stabilize him once his bowel and liver are no longer in his chest cavity, the outcome is unclear.
The "warm and fuzzy" feeling we so desired as parents was immediately replaced with feeling helpless and scared. It was one thing to know this was a possibility, but to hear it from the doctors was much harder than we could have ever imagined. The next few hours were filled with anticipation as our family arrived at the hospital to see him, consent forms were signed, and we tried to prepare ourselves for the moment they would take him into surgery. In this time, we also received the best gift of all, which was being able to hold our baby boy for the first time at twenty-four days old. We will be forever grateful for the doctors, nurses, and respiratory therapist that made this possible.
 Holding Caleb for the first time. The respiratory therapist made this possible by bagging him the entire time since babies cannot be held on the oscillator vent. |  Just moments before Caleb was taken into surgery!!! I think this was him telling us everything would be ok. |
So, at twenty-four days old (31 weeks/5 days gestational age), Caleb underwent his CDH surgery. The surgery lasted almost three hours and after what seemed like an eternity, the pediatric surgeon personally told us that the surgery had been a success and that Caleb did extremely well (a.k.a much better than anybody expected). Caleb received general anesthesia and was monitored continually during the surgery by a pediatric anesthesiologist. An incision was made just below his rib cage and the liver and bowel in his chest were guided back down into the abdomen and the hole in his diaphragm was closed with a GORE-TEX® patch. The condition of the patch will be regularly monitored by doctors to ensure that it remains intact. Hopefully, the space created in Caleb's chest will allow his lungs to continue to grow.
After another two hours, we finally got to see our baby boy post-surgery! Caleb is truly a miracle as the pediatric surgeons at Johns Hopkins only perform 15-20 CDH surgeries a year and his entailed additional complexities including his prematurity and the oscillator vent.
For the remainder of last night and most of today, he remained on a paralytic so the doctors could focus on stabilizing him with regards to his respiratory and metabolic function.
 X-ray before surgery with his bowel in his chest cavity. |  X-ray after surgery with both lungs expanded! |
He is now one step further on his road to recovery, but the uncertainty of what lies ahead remains...
Caleb, stay strong and keep fighting!!!
