Thursday, January 28, 2016

cookie decorating, frozen party, glitter milk, oh my!

Today I haven't seen Sol once... This is the first time since he was born I haven't seen him... I felt terrible this morning, I even got a nap in this afternoon when that usually isn't like me. I feel so guilty not being with him and taking care of him, but I know at this point I could be doing more harm to him and me if I dont stay away and try to rest up. Good thing Thiago is here so he could spend the day with him.

I think someone else is still trying to heal up from this cold.. Literally 3 minutes ago may was saying how she isn't tired, now she is snoring away... Good thing she wasn't tired.

May and I stayed at the Ronald house all day today. I let her watch movies and I rested in between pumping. After lunch may spotted some Christmas cookies they took out of the freezer, she was eating one and a volunteer took out some frosting for her to put on the cookie. Then sprinkles too. When she was done I thought it would be weird to have each person frost their own cookie, so may and I frosted and sprinkled all the cookies for everyone else in the house. It was a nice to do something during our lazy day, and everyone has seemed to enjoy the cookies so far. There is even a picture on their facebook page of her cookies :)
https://m.facebook.com/groups/297493613716802?ref=bookmarks#!/rmhcmadison/

Yesterday we had our first trach class, I realized during the class we are not going to be able to be out of here in a month.. In fact I might be surprised if we get out of here before he is 6 months old. This may not he true at all, but sol has the reputation of being the most weak baby in the world, here at the hospital at least, and the fact that we lost our daughter, I get a feeling they may think we aren't capable of doing this. Could be my own thoughts projecting here, but by the sounds of it, they don't want him going anywhere until he proves to them he is strong. I dont know how strong he has to be to accomplish this, and maybe I'm overreacting.. Or maybe not?? His pulmonary doctor is back next week and I think we will know a lot more when she comes back on. I am hoping. I hate these waiting games, waiting and waiting. Story of my life. And with losing Lua, I can't shake the feeling most people are judging us thinking we are not the best parents, made bad decisions, mistakes. It makes sense others would think this because I think the same thing. I'm upset with myself with what happened to Lua, and I continue to worry if I will make mistakes with sol as well. There is a good chance we will, but I really don't want to live here for 5 more months. Maybe that is for the best.

As you can see this life can be hard. As I think I said before, when we found out sol was affected we wanted one of three things, for him to move more, breathe on his own, or eat on his own. We ended up with a tad bit more movement, no where better with the breathing, and a touch better swallow than lua. But the one thing I wasn't really expecting, unless he could breathe on his own, was him making noises. The fact that he makes sounds really helps with all of this. We never heard lua make noises, so this is nice to have if we are going to be here again. I found out yesterday he was making sounds from his nose. I covered one of his nostrils up and the noise stopped, uncovered and it started.. I did this for awhile until he frowned at me and raised his lip, ha! He didn't appreciate it. He also likes to have his forehead to his nose stroked, doing this he started giving me a little smile, then a nice big smile! Moments I have to remind myself of why it is all worth it.
And also yesterday, a treat for may, they had a frozen party with special guests Elsa and Anna. May heaven! She played games with them and did crafts, ate dinner by them, won amazing prizes, and she even got to watch frozen with Elsa...i dont think her night could have been any better!

Mine could have though. That is when I started getting super sick feeling and had to cut the party short. The nurse told me she thinks I have too complex of a schedule and she isn't sure how I am doing it. Today when I didn't come in, she told thiago that again, my schedule is too intense with the pumping for fresh feeds and what not. But I think she doesn't know I would have to pump at those times anyway which is why I switched him to fresh feeds. Plus he has gained 242 grams since starting this! So well worth it! He is now 6lbs 4oz.. Speaking of feeds... I had to give a weird request to the milk lab yesterday..
I was closing the bottle to my milk when I heard a crunch, I opened it back up to see the top was fullll of glitter, wonder who right? Which ended up getting in my milk... So to not throw it away, the milk lab tried filtering it. They said this was a first time they ever had this request. Unfortunately they weren't able to get it all out, so it did go to waste :( but now we have earned the title of glitter milk, dont know if that is a good trade off or not though...

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