A Short Visit Home

So my mom stayed the night with us last night and so I decided to go back home with her for the night so I could visit and see my new niece Jennica.  She is SO sweet and small and it just made me really happy to see her. I wish I could help with her more but when Max gets healthy again, I will and they will be best friends. I am very glad I am friends with a lot of girls that have children Maddox's age, so he will have LOTS of friends and cousins to play with. 

Speaking of my baby boy, I miss him really bad right now. I found some of his old clothes that are still dirty from before we checked into the ER a month ago. I miss his old smell. He still smells sweet, it's just not my breastmilky breath smell. He also had a different kind of smell when he would sweat. Now he doesn't do much sweating and smells more like hospital.

I really miss his personality. He was SUCH A GOOD BABY! He was always so content and happy. Before he got sick, he had just started smiling like crazy! He was becoming more social and was on the verge of laughing! Each time he gets sick and has to stay in the hospital it sets him farther back in his development. But that's okay, we will work with him. My mom suggested letting him listen to classical music while he sleeps because it is supposed to create some type of connections in his brain. Not a bad idea since all he really can do is listen and sometimes look. He has lots of presents that I wish I could sit down and open with him on Christmas. We will still open them in front of him for him. I am very happy because my mom and siblings are coming up for Christmas so it will kinda be just like it would at home. He had the CUTEST Santa suit I wanted him to wear but I don't think he will be able to. Maybe we can put in on him for just a second to take a picture. 

Today another mom of an child with AGS added me on face book. I was extremely encouraged by her blog. Her son is now 7 years old with AGS and he looks great! He is SO similar to Maddox and it just gave me a lot of hope that I didn't know I had.


My "bad thoughts" are becoming less. Surprisingly. Sometimes I still picture his funeral through out the day, but I automatically block the thoughts out. That's one thought I do happen to get a lot though, is him at his wake. Sometimes I will be looking at him and he will not move, and I think if that's what he will look like and it always brings me to tears. I really can't help those thoughts. They always just pop up. But it's getting better. Another thought I have a lot, is when they come to tell me his surgery didn't go as planned. I imagine my reaction, what I will do, if I will want to be held by my family or not, if I will want to isolate myself, if I will freak out, or if I will not believe it. Will I want to see him? Could I handle seeing him? I think about what I will do when I go home without him. I don't think I would be able to leave his side. I think about what they will do with his little body. I couldn't leave his little body there alone, to where ever they take him. I just always think about these kind of things and I can't help it. I don't know if it's just my mind trying to get used to the idea or what. But it seriously, physically hurts me. Like it hurts me jaws, and it hurts my throat and stomach. If just the thoughts are doing this to me, I don't even know what I will do if it actually happens.

Enough with talking about that. Anyways, my milk is barely producing. I like only needing to pump twice a day, but I just can't seem to cut it off completely. My supply and all. I just can't do it. I don't want to. I really hate pumping, I would MUCH rather feed my baby skin to skin, but I can't. and I want to have a full supply if one day they say Max can feed off of me again. So I guess I will try to start getting my supply back up next week. I will enjoy this week, only pumping twice a day, and then next week I will start pumping every three hours again, even if nothing comes out. and it's going to suck lol. It's so much different then actually feeding your actual baby. I wish I could feed him so badly. I think about it soo much. It was just such a special thing to us. I guess I am being a drama queen about it. I just really really miss it. Like right now I am bawling just because I keep thinking about feeding him. At least I felt like my ugly, stretch marked,  uneven breasts were worth something when I fed him. Now they are pretty much worthless besides the 6 bottles of milk they pump a day...

 Anyways, I talked to Ron and I guess Max is doing a little better. For the past couple of days he has had loads of secretions because he got a bacterial infection from his breathing tube. They started another anti-biotic and I guess he has hardly coughed or had any stuff come up at all today. I hated seeing him cough. His whole face would turn red and he would squirm like he was just so uncomfortable and it just hurt me really bad to see that. I would get really bad sympathy pains and need to clear my own throat even if nothing was there, and it would make my chest hurt really bad and my whole body just tighten up. But good thing he is doing better! I miss him reaaallly bad so I think I am going to give the hospital a call so I will post more later.

Oh and as for the little boy I was talking about in prior posts. They finally pulled the plug. I hate walking by his room and seeing it empty. There has yet to be another patient in there. So it kinda gives you chills when you walk by. It's just too orderly and... empty...