Sorry for the delay in writing! I am still trying to adjust to my new schedule and have been pretty exhausted. My first week back to work went well, but as you can imagine, the days never seem to go fast enough. I find myself counting down the minutes until my work day ends and my real day finally begins, which includes seeing Caleb at the hospital and making it home most nights to spend some time with Brody before putting him to bed.
My first day back to work, Tuesday, August 26th, was Caleb's worst day since his CDH surgery. Caleb's stability started to decline, which was characterized by an increase in blood pressure and random episodes of a slower-than-normal heart rate (bradycardia) and a low level of oxygen in his blood (desaturation). The concern mounted and they began trying to determine the cause of Caleb's sudden change in status. He appeared as if he was getting sick so they began trying to rule out some type of infection and they ordered a Magnetic Resonance Imaging (MRI) of his brain to determine if the hydrocephalus was causing extreme pressure on the tissues of his brain. The results of the MRI showed that the pressure and build up of fluid due to the hydrocephalus was increasing much faster than anyone had anticipated. This most likely was causing his decline in status, but an infection had to be ruled out completely before they could proceed with his shunt surgery. In order to test Caleb's cerebrospinal fluid (CSF), the fluid that surrounds his brain and spinal cord, for infection, a lumbar puncture (spinal tap) was performed. During the procedure, they were also able to drain some of the fluid, which they hoped would release some of the pressure and buy some time until his shunt surgery could be scheduled.
In the days following the spinal tap, his status improved and the results of the tests for infection (urinary track infection, blood, CSF, etc.) came back negative, which was a huge relief. Caleb's settings on the vent are still being weaned slowly and the doctors are hopeful that they can try to remove his endotracheal tube (ETT) soon. I am highly anticipating the moment that he no longer requires mechanical ventilation to maintain sufficient ventilation and oxygenation as we will be able to hold Caleb again and we will finally be able to hear him cry (which I will probably regret saying at some point...haha). Unfortunately, there is no perfect time to extubate so it is important that this is not performed too soon since re-intubating can be a stressful process for babies. However, any time off the vent is better than time on the vent so we hope Caleb proves he is ready soon! In addition to his vent settings being weaned, his trophic feeds have been increased to 6cc per hour continuously, equaling approximately 4.87 ounces a day.
My best moment came this past week when the nurse surprised me and I was able to hold Caleb for the second time at forty days old. I held him for a little over an hour and I could not have been happier since it was under much better circumstances than the first time we held him. I am already looking forward to the next time...
On Wednesday, September 3rd, at forty-six days old, Caleb underwent his second surgery. A ventricular peritoneal (VP) shunt was successfully implanted on the right side of his head just behind his ear. A narrow piece of tubing was placed within the fluid-filled ventricle inside his brain and it was then passed under the skin into his abdominal cavity. The hope is that the shunt relieves the pressure on his brain, caused by the hydrocephalus, by draining the extra fluid in his brain ventricles to his abdomen where it can be absorbed more quickly. The follow-up head ultrasound today showed that the size of the ventricles remained stable (if not slightly better) and there was a mild decrease in the brain bleed, which were both very comforting to hear. He will be monitored closely as complications such as mechanical failure, infections and obstructions can occur in the future, which may require a subsequent surgery. Although the placement of the shunt during surgery was a success, Caleb's long term cognitive and physical development is still unknown. As each developmental milestone approaches, we will begin to see if he possesses the functional skills (gross, fine, language, cognitive, and social) and is performing the age-specific tasks that is expected, but every child is unique (especially Caleb). So, only time will tell...
Once again, our little miracle man continues to surprise us everyday with his fight and determination to overcome each obstacle that stands in his way. Caleb's progress thus far is amazing and hopefully (with two surgeries behind him), he is now truly on his way to recovery.
My first day back to work, Tuesday, August 26th, was Caleb's worst day since his CDH surgery. Caleb's stability started to decline, which was characterized by an increase in blood pressure and random episodes of a slower-than-normal heart rate (bradycardia) and a low level of oxygen in his blood (desaturation). The concern mounted and they began trying to determine the cause of Caleb's sudden change in status. He appeared as if he was getting sick so they began trying to rule out some type of infection and they ordered a Magnetic Resonance Imaging (MRI) of his brain to determine if the hydrocephalus was causing extreme pressure on the tissues of his brain. The results of the MRI showed that the pressure and build up of fluid due to the hydrocephalus was increasing much faster than anyone had anticipated. This most likely was causing his decline in status, but an infection had to be ruled out completely before they could proceed with his shunt surgery. In order to test Caleb's cerebrospinal fluid (CSF), the fluid that surrounds his brain and spinal cord, for infection, a lumbar puncture (spinal tap) was performed. During the procedure, they were also able to drain some of the fluid, which they hoped would release some of the pressure and buy some time until his shunt surgery could be scheduled.
In the days following the spinal tap, his status improved and the results of the tests for infection (urinary track infection, blood, CSF, etc.) came back negative, which was a huge relief. Caleb's settings on the vent are still being weaned slowly and the doctors are hopeful that they can try to remove his endotracheal tube (ETT) soon. I am highly anticipating the moment that he no longer requires mechanical ventilation to maintain sufficient ventilation and oxygenation as we will be able to hold Caleb again and we will finally be able to hear him cry (which I will probably regret saying at some point...haha). Unfortunately, there is no perfect time to extubate so it is important that this is not performed too soon since re-intubating can be a stressful process for babies. However, any time off the vent is better than time on the vent so we hope Caleb proves he is ready soon! In addition to his vent settings being weaned, his trophic feeds have been increased to 6cc per hour continuously, equaling approximately 4.87 ounces a day.
My best moment came this past week when the nurse surprised me and I was able to hold Caleb for the second time at forty days old. I held him for a little over an hour and I could not have been happier since it was under much better circumstances than the first time we held him. I am already looking forward to the next time...
On Wednesday, September 3rd, at forty-six days old, Caleb underwent his second surgery. A ventricular peritoneal (VP) shunt was successfully implanted on the right side of his head just behind his ear. A narrow piece of tubing was placed within the fluid-filled ventricle inside his brain and it was then passed under the skin into his abdominal cavity. The hope is that the shunt relieves the pressure on his brain, caused by the hydrocephalus, by draining the extra fluid in his brain ventricles to his abdomen where it can be absorbed more quickly. The follow-up head ultrasound today showed that the size of the ventricles remained stable (if not slightly better) and there was a mild decrease in the brain bleed, which were both very comforting to hear. He will be monitored closely as complications such as mechanical failure, infections and obstructions can occur in the future, which may require a subsequent surgery. Although the placement of the shunt during surgery was a success, Caleb's long term cognitive and physical development is still unknown. As each developmental milestone approaches, we will begin to see if he possesses the functional skills (gross, fine, language, cognitive, and social) and is performing the age-specific tasks that is expected, but every child is unique (especially Caleb). So, only time will tell...
Once again, our little miracle man continues to surprise us everyday with his fight and determination to overcome each obstacle that stands in his way. Caleb's progress thus far is amazing and hopefully (with two surgeries behind him), he is now truly on his way to recovery.
 Holding Caleb for the 2nd time at forty days old! |  |
 Right before surgery...once again telling us everything would be ok!!! |  Post surgery resting comfortably. |
Post surgery with wondering eyes.
