Sorry for not updating in a couple days. As I've mentioned before, I'm beat. Even just verbally updating people lately has been draining for me. I continue to try to find a balance between the NICU, work and home.
There's been a lot going on. As I mentioned in my last update, Tracey and I wanted to meet with a doctor to ask why they aren't doing anything to help Colby's hydrocephalus (i.e. putting in a shunt). For us to just watch day after day as our son's head is so large and at times getting larger is just so hard on us. The doctor did make us feel a little better. He said that at this point, the pressure his hydrocephalus is putting on his brain is probably minimal. He likened it to blowing up a balloon. The most pressure is needed to first blow it up, but once it expands, you need very little pressure to keep it that size or make it a bit bigger. He also said that putting a shunt or reservoir in isn't to be taken lightly. The risk of infection is serious. If the fluid is drained too quickly, it could cause more bleeding in the brain to fill the gap where the fluid was. Or, the quick release in pressure could cause damage and bleeding. They continued to say that if Colby showed signs of trouble. ie. if he was very lethargic, unresponsive or having apnea spells, that this would be a sign that the pressure is getting to be too much. But this isn't the case. Colby is a happy, very alert little guy. His breathing continues to strengthen. Just last night they had his CPAP settings down to 21% oxygen. That's just about what you and I breath in room air. He wasn't liking it too much but that was the first time I saw him on such a low setting. After about a 1/2 an hour, they moved it back up to 25% and Colby's blood oxygen saturation levels mellowed out.
Colby's head is growing out the back. I try to take many of his pictures straight on as his head looks "normal" this way. It's when you see him from the side and especially without his hat on that you really get a sense for how large his head has gotten. So I asked what if any problems could come from the growth happening out the back of his head. We were told that the baby's head is extremely pliable. Babies who are on the CPAP for a long time often have this condition. The reason is because the CPAP is held in place by a velcro band that goes around his head. (look at the picture above) Then two foam cushions are placed at his temples to hold the tubes in place. The pressure from the band and the tubes are just enough to restrict his head from getting bigger where the band is. The only place pressure can go then is out the back. He said that once Colby's off the CPAP, they then position him in a way that allows his head to slowly go back to normal.
So that brings us to getting off the CPAP. Right now, he's on the CPAP so much because when he's on the cannula, he works to breath a little harder. And with his intestines not being connected, Colby looses weight when he moves around a lot or works to breath for an extended period of time. So to maintain his weight and to try to help him gain weight, they allow him to be on a cannula only 1 hour a day until he's able to have surgery to put his belly back together. Colby couldn't have the surgery right away because he was on a hormone to help keep his blood pressure up. This hormone inhibits healing. They stopped his drip of this hormone over the weekend and the surgeons finally come to see him yesterday. Colby is now slated to go into surgery sometime around the middle of next week. The doctors say that this will set Colby back in the short term. When he comes out of surgery he will be back on all his IV's, back on the ventilator and they'll have to take a "wait and see" stance again. The better part of his digestive track only worked for the first week or so of his life. It's laid dormant now for over a month. So there's a question of how and if his intestines will react to having to work again. BUT....once this is done and if all goes well, Colby will gradually work back up to a cannula and he'll then be getting full feeds of breast milk which really helped him start to put on weight a couple weeks ago.
I held Colby last night. He was doing well and very content to be held. He's such an easy going baby. He doesn't cry much at all. He loves to look around and I love to see him taking in his little world in the NICU. When they weighed him last night I was very happy to hear he broke the 3 pound mark. Not by much. He was 3 pounds even. But that seems like a heavy weight compared to where he's come from. The more he can pack on before his surgery the better.
So, that's what's been happening. Quite a bit and the next couple weeks will be long ones and Colby enters surgery and then starts to recuperate.