Life after losing my baby : Going home.

I can't believe a year ago today our baby Lua went home from the NICU. While we were there I never thought that day would come. Now looking back at it 3 months went by so quickly, and if it would have let her live longer than 7 months, I would have kept her there longer! I wish I would have known! Well there are a lot of "I wishes" with that whole situation, but unfortunately it is what it is now.

The day we brought her home was insanely stressful!!!! We had her in a neck guard and body brace because she was pretty weak and we all felt she needed the support to make it back home. When we finally were able to get on the road, it wasn't but maybe 15 mins. that her monitor started going off saying she was dipping into the 85s for her oxygen level... I made my husband pull over and check her out, and she looked fine but the monitor was not saying the same thing. She was constantly in the lower 90s and me suctioning her a lot because I was scared to death she wasn't able to breathe. I think she was able to get a nap in there for a little while, but then about half way through our trip, our stupid monitor died!!!! We werent use to just looking at her and being able to tell if she was struggling or not yet, so we needed to have that monitor!!! we had to pull over at a gas station and charge it up. It was nice for Lua though anyway because then she got to take off all that extra stuff on her for awhile. When it was finally charged enough we finished our trip by me still freaking out, the monitor still going off constantly, suctioning her all the time in the fears she was struggling, and trying to finish her feed. It was terrible and I said I would never go anywhere with her again!!!!! And actually I pretty much avoided sitting in the back with her if i could and only did it a few times after that terrible ride home.
It was soooo overwhelming when we did get home! We had a wonderful banner and balloons in our driveway! So awesome to see when we got back! But we also had our medical supplier at home waiting for us as well, and while we were trying to get Lua adjusted in our house, there she was sitting and waiting and waiting, because she had to go over all the medical equipment with us. It was insanely stressful and pointless because she talked to me for over an hour on all the crap that would happen, and I forgot everything she said by the next day and she totally just overwhelmed me!!!! we already knew how to use the basic and most important things, it was really pointless to go over this huge order form just seconds after we got home from the hospital. If I could give them any advice, it would be they really need to wait and let the parents at least settle in the house before they try explaining everything to a person. It is really just stupid. I'm not even sure what they are thinking?? But I didn't really like this medical supplier anyway, not sure if I had any other options but if I did I would have left them for sure!
I don't really remember how she did overnight, I think she did rather well. We did have to do a feed during the middle of the night but other than that, the girl could sleep like a champ! There was really only one night that she didn't sleep at all for us and was really fussy, and that was the last night we were with her.

I think when everyone is in their young days, they picture their adult life in a certain way or have an idea of how their life will be. I know most of the time no ones life turns out the way we plan, the smallest bump in the road can change the whole outcome. I honestly can say I never pictured my life going this way. After we had Lua, all the adjusting we did and getting use to have a baby who will need a lot of help most her life! I grew into it and got use to it! No parent imagines they will have a child with special needs, but once you are in that life there you do have to learn to give up your former life and adjust to this new one. I think it is simply a matter of fact. Your old life is gone when you have a healthy kid, your life is totally different with a child with needs! I'm not saying you have to give up everything that makes you happy or give up yourself, but you have to learn to adjust to it and make the best of it. It is a huge task, and it is insanely difficult! I felt like I was getting into a good routine with our new life. Balancing both girls, making our life as normal as possible, and I was enjoying it as much as I could. Of course it was hard and I would feel bad for myself every now and then wondering why she had to have so many complications, but you have to move on from it or your child won't improve. Now though, now, I look at my life and wonder how it became this??? No one ever pictures a life where they lose a child. It is the worst thing that can happen to a parent, and sometimes I am still in shock that this is my new life. I would rather give up every second of freedom I have if it meant I could have Lua back.

And the point to all of that, eventually we all have to let go of what we thought our lives would be and move on from all of our expectations. As hard as it is, eventually we all have to just move on.

Her going home contraptions