butterfly.

Today was a sad day in the nicu, this morning when I walked in I saw a butterfly on one of the nicu doors. The butterfly is a sign that the baby is passing away or already has passed away and to give privacy to the family during the amount of time the butterfly is there for. I saw many family members shuffle in and out of that room, I also got a little glance of the baby's head as he or she laid there peacefully.
I spent extra time snuggling Sol today, choking back my own tears, because I know slightly how those parents, that family, are feeling right now. I didn't lose my baby in the nicu, i got to take her home and love on her, but lost her all the same, and i can't help but think of all the decisions they are having to make now, or how they are going back home to their house knowing their baby will never come home with them. Makes me think of those first few days after Lua passed and how gloomy and difficult those days were. I spent most of today wondering what happened to the baby, i can only imagine it had something to do with breathing difficulties. A condition that was too severe possibly, hard to say, but i ache for that family. I thought so much of how that could have been us as well with Sol. We could have decided not to do the trach and let him go, a decision we battled with many many times while i was pregnant with him because we question how his quality of life will be. We could have potentially never even made it to be in a nicu room with a butterfly on the door because we were told so many times that he would probably not be able to be intubated after he was born, and with us choosing to not do the exit procedure, we were then needing to prepare ourselves for his passing.
The butterfly on the door simply hit me hard today. I couldn't walk by with out feeling so heart broken, not just because of us but for the family and their loss. I hate seeing babies die it isn't natural or fair. I read a blog post a few weeks back where a mom wrote to another mother in the nicu who was losing their baby, and the post, sort of offended me. The mother talked about how we all feel the pain of you losing your child, we all wonder why your baby and not ours, and that we all are hurting for this mother. I thought, what a bunch of bull! That mom doesn't know what it is like to be losing a child when her baby is most likely in the nicu for something less severe... But after today I kind of see where that mom was coming from. Although I dont talk to the families much in this nicu because we all have private rooms, there does tend to be an unspoken bond that happens, maybe the fact we all can relate to each other in some ways, so I do see how someone can say that we hurt along side of you, I would never say that to someone going through a loss, but I do feel it, but I also have lived it too. It is hard. Suddenly this evening when I walked by the room the doors were open, the butterfly was gone, the baby and family were all gone. The nicu preparing the room for a new baby to come all happening so quickly. I'll probably go to sleep thinking of that baby tonight. I wonder if Lua will meet that soul.

Besides that depressing news, Sol had a good day. He is getting more time off his vent, he will go up 15 mins. off his vent every other day so tomorrow he will be at 105 or possibly 110 mins. 2x a day. Today while he was off we got some snuggle time in and even bath time which he didn't hate. They are worried about his arm looking like a big bump on it so he had an xray to check for broken bones. No sign of a broken bone, they think it is just... I dont know, tissue I guess, or gravity pulling on his arm. Other wise he is doing well and keeping up with his growth. A pulmonary doc today said we wont be going home until he is 5kilos, but his actual Dr. told me that he didn't have to be so now I'm confused and have to wait to ask her about it again.
This evening after Sol went back on the vent I decided to hold him since may was playing with a volunteer and another kiddo.. It was during his feed so I was trying to be graceful on the transition to holding him but when we sat down I think his feed started flowing too fast into his belly because he got reeeeaaallly sad, he actually started crying out loud. His tummy was really hurting him and I was just about to call a doctor when he let out an enormous big boy fart! That seemed to help him but he was still a little fussy... Poor baby breaks my heart when he gets sad. I soon put him back to bed and vented his gtube and a ton of air came shooting out and he instantly felt much better! So glad there was at least an easy fix because i was really starting to get worried for him.
He is such a relaxed, awesome little guy, I'm glad he has been so strong for us when we have been at our weakest points. If it wasn't for him showing us how much strength he has and fight he has in him, we may have been the parents with the butterfly on the door. But Sol has other plans for now, and I'm not going to be the one to stop him.

Thinking of you little one who has gone too soon. May you be free of your struggles.

Thinking, also, of you Lua.