Happy 4 Months Gabriel!
What an amazing and crazy four months it has been. Amazing becuase we didn't know if Gabe would make it through the first hours of his life, and here he is 4 months later still fighting. Crazy because the last four months have been the most intense roller coaster we have ever been on. The ups and downs of daily life have been draining some days, and exhilarating others. When I think back on the obstacles Gabe has over come, I am in complelte awe of my son, and am so pleased by the progress he has struggled so hard to make. At the same time the fact that he is 4 months old, still has several hundred mls of fluid building up around his lungs a day, and still doesn't have lungs strong enough to function on their own, really really scares me.
Every day Gabe is on a vent more damage is done to his lungs. He has been doing well on his new big boy vent, but still has times when he doesn't breath at all and the machine does all of the work. G's lungs are obvisouly not ready to do all of the work on their own, and we don't know if they ever will be. We are hoping to try CPAP again in the near future, and to start getting more aggressive with trying to get his lungs going.
Gabe's right chest tube has put out extremely little fluid in a little over a week now. An ultra sound last Monday showed no fluid around the right lung. If tomorrow's ultra sound shows the same, then his right chest tube will be removed. We are all praying this lack of fluid build up means the part of the lymphatic system that was leaking into the right pleural cavity has healed. Now we just need the left side to follow and stop putting out several hundred mls of fluid a day.
Another issue, which I believe I mentioned in a blog not too long ago, is Gabe's nutrition. Gabe is not growing becuase he is not getting enough calories. There is only so much TPN can do for him, and with the leaky lymphatic system he really can't eat. His size doesn't seem like something we should be worrying about at this point, with the larger, more life threatening issues at hand, but he is fighting a huge battle and his body needs proper nutrients and calories to be in tip-top battle condition. Dr "R" is trying to figure out how to work on getting Gabe more calories.
We are trying to stay strong as we battle along side our son, but some days are harder than others when it comes to staying positive. We know Gabe is a fighter and has this cute little personality, but what we don't know is if we can heal him. Every day we have with Gabe is a blessing, and all we can hope is that these days and months we have had with him thus far, turn into more months and into years.