Two Steps Forward One Step Back

I have learned a lot during the last month or so. I think patience is the biggest thing. I just hope I am really learning it well so I never have to be patient again!! I have had a rough couple days. Through this whole experience I have tried to really focus on the positive things and remember all the things I have to be grateful for and we have had amazing things happen and I am so grateful at Jase's progress and the way everything is going, but sometimes I just get onery about it all. I am finding myself being really jealous of new moms who get to take healthy kids home from the hospital and day after they give birth. I went to a parent class today and we went around he room and everyone introduced themselves and told kind of what was going on with their baby and from the sound of it I have the least to worry about, but sometimes that just doesn't make it any easier.

On Monday I went up to the hospital to see Jase and he was having a rough time with his heart rate and breathing. He would quite breathing and then his heart rate would drop. It happened several times and it had been going on all day. They turned up his nasal cannula hoping the air flow would help.

The therapist came back and helped me breastfeed him. It was only kind of awkward. Not as bad as I had imagined though, thank goodness! I actually feel more comfortable doing that then bottle feeding him. He did really well during it. We think he probably ate (is that the right word?) about half his feeding. He seemed to pace himself a little big better and we didn't have to force him to breath as often. He had a little bit of a hard time after with his reflux. They have started him on medicine for that so hopefully we can get that under control as well.

Yesterday morning the Nurse Practitioner called and said that during the night Jase had 21 "episodes" where he would brady and desat (his heart rate dropped and he stopped breathing) and they think that it may have something to do with his feedings. He seemed to be having a really hard time with his reflux and so his first instinct is to protect his airway so if his milk is coming back up he closes his airway, stops breathing and his heart rate drops. The doctors decided to stop his feedings through his feeding tube and he is now back to IV feeds. His nurse said she can tell he doesn't necessarily like to be fed this way. I don't blame him. I am sure it feels good to have a full stomach. They also gave him blood to help his iron. I feel like we just took a step back. It's been a long time since we have been at this point. They also took him out of his open crib and put him in an open warmer bed to help his body temperature. His primary nurse today said she thinks they tried to do too much with him all at once and he couldn't quite handle it!!

Today I came in and found that the less than attentive nurse I had a few days ago was assigned to him again. When I walked in she said, "Are you his mom?" I said, "Yes" and she said "I am the nurse taking care of your baby today." And then she turned around and left the room. I am left standing there just looking at him not knowing what has been going on. I notice a new IV in his hand and I have no clue what they plan on doing for him considering the last few days events. Another nurse taking care of another baby I think noticed that I was just standing there not knowing what was going on came over and tried to help but she didn't really know what was going on either. I left right after that to go to that parent hour class and thankfully when I got back my less then attentive nurse was leaving in the middle of her shift and Jase got a new one.

I admit I was thinking really bad thoughts about that first nurse all day until the Nurse Practitioner came in and said that this morning she suctioned out a whole bunch of gunk from his nose and they are wondering if maybe that is some of the reason why he hasn't been breathing as well. He has a nasal cannula that blows air in his nose and that could be the cause of the gunk. She said at this point it's just a guessing game and they are just trying to eliminate different possibilities. Personally I would be extremely grateful if it was just that easy. I would much rather that then have it be because of his eating. They aren't ready to totally take him off the cannula so they put in a high flow cannula that has humidity to help.

They are putting him back on full feeds, but are going to continue to give him vitamins. (That's what the IV in his hand is for.) I have been told that a lot of what we are dealing with right now he will eventually grow out of. Once again it's all just a matter of time.

I love that little boy so much! Some days will be good and some days will be bad, but in the end when he is healthy and happy and we get to take him home it will all be worth it!