Wednesday, September 2, 2009

September 1&2, 2009 - 2 Months Old




Yesterday (September 1) Gabe’s day started out with a lovely “Happy 2-Month Birthday” serenade from Mom. I actually torture the poor little guy with a “Happy __-week Birthday” song every Wednesday, since that is his weekly Birthday, but yesterday was extra special because it marked an entire month. It may sound like a totally dorky thing to do, but when your kid wasn’t expected to survive his first 12 hours of life; every day, week, and month are a really big deal.

As I'm sure you've read in the blogs from the last fews days and weeks, there has been a lot going on with Gabe. Some of which there are answers and solutions too and some that are still complete mysteries. Yesterday we sat down with Dr "B" and several other folks to discuss what we have learned about Gabe and what can be done for him going forward. We were pretty nervous going into this meeting because we weren't sure which direction the conversation would take. Would we be talking about things that can be done to help Gabe get better or would we be discussing the fact that we are out of options and nothing can be done? This has been and will continue to be are biggest fear until Gabe really starts to make some huge leaps forward. We started out the conversation with excitment at how well G was responding to his new ventilator. He seems to be very peaceful on the new vent, is not requiring as much sedation as usual and is actually having more awake-times then ever before. His blood gasses are looking great, and with the assist setting he is on his lungs should start getting stronger. Bubba is tollerating his breast milk feedings very well so they are going to start increasing the amount he is receiving. The goal is to have all of his nutrition coming from the breast milk and not the TPN. TPN is hard on the liver and Lord knows the kid has enough going on with his liver. In regards to his liver; it looks is though we will never know exactly what the masses are. The final report states that two doctors feel they are adenomas and two feel they are focal nodular hyperplasia. They are pretty much the same thing; benign and not keeping his liver from functioning. What there is still a big question mark about is the glycogen storage disease. The stains are still not complete, and Dr "B" is hoping to have an answer by Monday. Please say a little prayer that these stains come out negative, because if he does have glycogen storage disease that opens up a whole new can of worms, and we just don't want to go there. We discussed the MRI finding again and are very happy to hear that other than being underdeveloped (which is to be expected of a child born 8 weeks early, and under heavy sedation and an ET tube for 9 weeks) everything else looks as it should. Another part of Gabe looking as they should, are his lungs. We are happy to report that for the first time in his life Bubba's lungs are actually looking pretty darn good. The left lung is a bit smaller, other than that they seem to be on the road to recovery. Now if we can just get that liquid to stop building up around them and get more edema off his cheast walls, we can start talking extabation (no more breathing tube). They are going to begin to slowly wean G off of hydra cortisone and all of his pain/sedation meds. This is going to be a long, slow process, so we are probably looking at 6 to 9 weeks before Bubba is off of all of these things. Yes...I did say 6 to 9 weeks. Gabe will most likely be in the NICU for at least another 2-3 months. Hydrops is a very long battle. We have heard of some babies taking 5-8 months to recover, and we have heard of those that are not able to recover at all. It is still very scary to think that we do not know exactly what the future holds for our little boy. We can only hope and pray that Gabriel is able to recover from his hydrops and all of the other things he is battling. At the end of the meeting I dared to ask the question I knew no one could give me the answer too, but I just had to ask. I wanted to know if there was hope for Gabe, and this is what we were told: because of the positive progress made over the last few days we can be "cautiously optomistic." Considering that fact that we weren't sure which direction this meeting would be taking, this was a very positive note to end on and has given us some hope for what the futue has instore for Gabriel.

Today, September 2, was a pretty mellow day for Gabe. He spent some time jamming to his spa music; ate "real" food every three hours, had a nice dirty diaper for mommy and nurse "L," and got to be snuggled in his mommy's arms for 2 hours. Thank you nurse "L" for taking the time to pack Gabe up and let me hold him for so long. There are not even words to express how amazing it felt to hold my little boy. I get teared up just thinking about it.

2 comments:

Robin said...

What a great day! This is a Happy 2 month birthday indeed. Go Gabe Go!

We won't let up on sending the positive energy, this is one very special little boy.

- R

amy said...

We are so happy to hear that he is doing better. We will keep you in our thoughts and prayers.