Fighting as a Family

Today we are on day 19 of our NICU stay. Everyone around us  has been commenting how fast time is really going, however Josh and I don't feel this way. It seems like minutes slowly tick by as we tip toe towards our goal of getting Jaxson healthy enough to go home.

Overall, Jaxson has been doing very well. He has had both his chest tubes removed, and now only has the feeding tube in place. He is still connected to the vitals monitor, and is in an isolette until he can regulate his body temperature (something he will learn when he gets much older). Today I've noticed that he has had more brady/apnea episodes, but he is able to get himself out of them without any intervention, which the nurse and pediatrician assure me is what we are looking for and is normal for a preemie of his age.

We are also now able to become more involved with Jaxson's care. Every 3 hours its time to take his temperature, change and weigh his diaper, and then we nuzzle and "practice" breast feeding, though he does not know how to suck, breathe and swallow all at the same time - but practice makes perfect. Waking up all through the night - I feel like I'm doing my normal mommy duties.

As far as I go, I am trying to heal myself, and recover from the brain swelling. I am finding myself very confused and slow... wondering if my blog even makes sense!  Hopefully I will be fully back to normal in a few months. I also am struggling with being in and out of a deep sense of sadness -more so than just the typical baby blues. Its hard to see his clothes, his toys, his furniture, without some spike of fear or doubt about him coming home.  Josh has been a solid rock, and we have helped each other through the most horrible time when Jaxson was at his worst and we were preparing ourselves. We couldn't do it without each other, or without the support we've received from our family and friends.

 I was looking through the pictures of Jax being born compared to now, and I can hardly believe how much he has changed and grown. It really helped any doubts or fears I have of my baby not ever coming home. He is so strong, and its amazing how far he has come in just 2 weeks!  He's not giving up, and its not even acceptable for his mom to give up. We are a family and we are all in this together!