Baby Steps

So I didn't get to this yesterday, but yesterday was a great day! Jeffrey went to hang out with his grandma Julie while Jayson went to work and I went to seen Jaxson. I got to feed him again, and he took 4mL from the bottle. They also weaned him down to 0.4 liters of oxygen. The best part of the day: Jaxson's PICC line was removed! That was a line they put in his arm that stretched 18cm into his body. It carried his nutrition that he was taking before he was allowed to eat, so he was getting sugar, lipids and basic nutrition until they determined he could have real food. Since he's been tolerating his feeds and they've been increasing the amount he takes in, the PICC was no longer necessary.

Jaxson still has his feeding tube because he's not eating full meals from a bottle yet, and he has his oxygen, he also has monitors on his chest and one around his ankle. So he's still hooked up to a lot of things, but we're making baby steps in the right direction. The fact that he has no mor IVs is huge! I'm allowed to get him in and out of his crib on my own, without the assistance of a nurse, which is really nice. I can also change his diapers if he needs it without waiting for someone to help move all of his cords out of the way.

While Jaxson is doing well, I am still torn and struggling with a lot of things. I'll talk about Jax first, then we'll get to Jeffrey. Jax looks great and he's making a ton of progress. They even weaned his oxygen down to 0.1 liters today. His respirations were a bit higher, averaging 70-100, but he seemed okay otherwise. But there are still concerns. He still has a heart defect. He still has a tethered spine, which may also mean he has a mild form of spina bifida (we won't know until we get the genetic testing back). He still has to have an MRI on his skull to see if his bones are fused together. And the least of my concerns is his cleft palate. He is a pretty sick little baby, no matter the progress that he's making. I know he's going to be okay, he has to be okay, but it's so hard to stay positive when he's doing well because I know that we're not out of the woods yet. I don't even know when he gets to come home. What if he's still there when it's time for me to go back to work? How am I going to handle that? I'm already completely exhausted, I can't imagine throwing another task on my plate.

And then there's Jeffrey. Jeffrey is quite possibly the most amazing three year old a mo could ask for. He loves to go see his baby brother and he's very protective of him already. He listens to me (mostly) when I tell him to do something, and he doesn't seem to mind going to either of his grandparents houses every day. His stutter is up and down, which is actually a good thing. It's still there, but as long as it goes in cycles then it should go away. He adjusts really well to anything we throw at him, but I still worry about him constantly. He definitely misses mommy. He's now refusing to go to bed n his bed and insists on falling asleep with me in my bed. So far we've let him do it, but at some point it will have to stop. And I've got to figure out a way for he and I to do something together as soon as I can walk for longer than 15 minutes. I need my little boy to understand that mommy loves him and misses him too.

Jeffrey seems to be handling all of this better than I am. I'm draining myself by pumping for Jaxson every 3 hours (I sleep for 5 or 6 usually), traveling back and forth to the hospital, and trying to play with Jeffrey instead of just laying in bed with him. And I'd love to spend some time with my husband too, but that's something we just aren't going to get right now. I'm so glad we have a strong relationship! I feel like I'm being pulled in 5000 directions and I'm trying to meet everyone's needs and failing miserably. Well, maybe not failing Jaxson since he gets most of my time and energy, but everyone else. And it would be really nice if I could do something for myself. Like go to the chiropractor and get a massage.

Now I feel like I'm whining. I have so much to be thankful for with Jaxson, Jeffrey and Jayson. My boys are amazing and they're definitely what keeps me going every day. I just want my baby to come home. There's an empty cradle at the foot of my bed just waiting for him. There's also a perfect little space in between me and Jayson on the bed that he'll fit in on rough nights. I hate that he doesn't get held all the time, or get to be around his family to know that he is loved. My heart just aches thinking about the bond that I'm not forging with him right now. It doesn't even feel like I have 2 kids sometimes. Not that I don't love him or that I love him less than I love Jeffrey, but it's not the same.

I guess everything will come together in time. I just need to trust God's plan, whether I can see it and understand it or not, and believe that everything will be okay. I know it's normal to have these ups and downs, but I feel so guilty when I have a down day. There is so much good in my life to outweigh the bad that I shouldn't complain. I love my boys and I'd do anything for them. If that means that I don't sleep, my back hurts and I give up any time I'd get to myself, the so be it. There, I said it so you don't have to: Suck it up, Sanderson, it's not so bad.