Today, we get to celebrate one month of life and one week post CDH surgery for Caleb. Last Tuesday marked one of the most difficult days on this journey for us as parents, but seems to be exactly what Caleb needed to turn his bad days into good days. Caleb's CDH surgery marked a new beginning for him and he has been a different little boy. It's amazing how much has changed now that his liver and bowel are no longer in his chest. His lungs, although not as big as a child without CDH, are expanding and getting stronger everyday. The sounds of beeping monitors have diminished as he remains stable with a normal heart rate and the perfect level of oxygen in his blood. He is no longer as touchy when getting his diaper changed, being suctioned or just being moved into another position. Finally, he is making strides on the oscillator ventilator and each time his settings improve is promising as they hope to transition him to the conventional ventilator by the end of the week. Although there have been many great moments since his surgery, we try not to get too excited as we truly don't know what the next minute will bring. So rather than celebrating each milestone as we should, we just hope that he remains stable and his condition continues to improve.
The progress Caleb has made is both remarkable and surprising to everyone. A repeat head ultrasound showed that his intraventricular hemorrhage (brain bleed) remained unchanged, even after his surgery, which was by far the most comforting news we could have received. This will continue to be monitored weekly. Each day the head ultrasound is performed are the most difficult days as we sit in anticipation and wait for the results since Caleb in no way needs any additional complications. For the most part, he has been stable since surgery, but his toughest day in the last week came yesterday. I made my routine call to the overnight registered nurse first thing in the morning and learned that Caleb had a "not so good" arterial blood gas (ABG), which measures the acidity (pH) and levels of oxygen and carbon dioxide in his blood. The doctor's ordered a chest x-ray and determined that his left lung had partially collapsed due to his breathing tube being displaced. His tube was reinserted and although this set him back a little, he thankfully recovered quickly and they saw an immediate improvement in his follow-up blood gases. By the end of the day, he was back to the same settings on the oscillator vent that he was on over the weekend, which was extremely reassuring. Also, a very happy moment came when they began feeding Caleb a very small volume, known as trophic feeding, equal to 1cc per hour continuously.
Personally, as much as I try to put last week behind me, I remember that pre-surgery conversation with the doctors all too clearly. I am still recovering from the whirlwind that took place that day and the endless emotions I felt. Since that day, we have learned just how worried the doctors and nurses were that he would even survive the surgery. As you can imagine, we are beyond relieved that everything went well, but the thought of what could have happened that day remains a nightmare. Our time with him would not have been enough...
We continue to long for the moment when we get that feeling that everything will be ok, so until then, the saying is "so far so good". Caleb's journey is far from over, but as parents, his fight to overcome prematurity and CDH has been incredible to watch. He is one tough little boy!!!
The progress Caleb has made is both remarkable and surprising to everyone. A repeat head ultrasound showed that his intraventricular hemorrhage (brain bleed) remained unchanged, even after his surgery, which was by far the most comforting news we could have received. This will continue to be monitored weekly. Each day the head ultrasound is performed are the most difficult days as we sit in anticipation and wait for the results since Caleb in no way needs any additional complications. For the most part, he has been stable since surgery, but his toughest day in the last week came yesterday. I made my routine call to the overnight registered nurse first thing in the morning and learned that Caleb had a "not so good" arterial blood gas (ABG), which measures the acidity (pH) and levels of oxygen and carbon dioxide in his blood. The doctor's ordered a chest x-ray and determined that his left lung had partially collapsed due to his breathing tube being displaced. His tube was reinserted and although this set him back a little, he thankfully recovered quickly and they saw an immediate improvement in his follow-up blood gases. By the end of the day, he was back to the same settings on the oscillator vent that he was on over the weekend, which was extremely reassuring. Also, a very happy moment came when they began feeding Caleb a very small volume, known as trophic feeding, equal to 1cc per hour continuously.
Personally, as much as I try to put last week behind me, I remember that pre-surgery conversation with the doctors all too clearly. I am still recovering from the whirlwind that took place that day and the endless emotions I felt. Since that day, we have learned just how worried the doctors and nurses were that he would even survive the surgery. As you can imagine, we are beyond relieved that everything went well, but the thought of what could have happened that day remains a nightmare. Our time with him would not have been enough...
We continue to long for the moment when we get that feeling that everything will be ok, so until then, the saying is "so far so good". Caleb's journey is far from over, but as parents, his fight to overcome prematurity and CDH has been incredible to watch. He is one tough little boy!!!
