So much has happened in the past week and a half that I don't even know where to begin. It all happened so fast that at times it feels like it hasn't happened at all. I gave birth, watched her breath and live, watched her die, and buried her all in 9 days.... how is that even possible? There was so much joy and love when I looked into those beautiful eyes that remind me so much of her big sister. Those chubby cheeks and that double chin! I would sit and stare into her beautiful face in amazement that she was here and alive but now she isn't! Now she is my angel and though I know that I will see her again it is so so very hard to not be with her now. I am still able to live and go on but there is an ache in my heart every second of the day. I miss her with every cell of my being. I think of her every second of the day. At times I think of her and smile.... I think of the little squeaks that she made when we held her and she was comfortable or I think of those chubby little arms. Other times I can't get the image of me holding in her in my arms as she died. Watching her beautiful little face turn blue and then holding her as she grew cold and I feel like all of the air has been sucked out of the room and I might be sick. Those are the hard times. I am so very thankful that I was with her at the end and I was able to whisper to her over and over how I loved her and how sorry I was as she passed. I am so thankful that she wasn't alone and she was just where she should be, in her mommy's arms but at the same time it is something that will haunt me forever. Watching your baby girl turn blue and die is more than anyone should ever bear. To sit there and hold her and not be able to do anything to help her goes against everything in you as a parent. It is the worst torture you can imagine to watch as someone you love literally more than life itself die while you are completely helpless to stop it. Of course we could have stopped it if we had decided to intibate but we sore to Quinn from the start that we would never do anything to her, only for her. Steve and I both knew that if we had the doctor intubate we would have broke that promise to her. She would have never came off the breathing machine and that wasn't a life that we wanted for our baby girl. As hard as it was and how it went against everything in my being, we kept our promise to our Quinn-Bean and we let her go.
I firmly believe that Quinn was telling me that it was time to let her go, she was ready. That day started out like every other on our NICU walk.... we got up, spent some time with Ashlyn, dropped her off at Renee's house and headed to the hospital. Quinney was doing good so we spent a lot of time just holding her during the afternoon. At some point during the day one of the doctors came over to talk to us about our wishes for Quinn. He told us that he felt with her continual increase in oxygen saturation requirements that eventually she would have to be intibated and it would be something that she wouldn't come off of. He felt that this was because of neurological issues and not respiratory. Seeing that at this point her saturation level was only between 28 and 30 this came as a shock to us. We breath at a 21 and she was only at 28 or 30. Steve and I were both upset by this news but I kept saying that he doesn't know. He doesn't know what will really happen and we certainly thought that it would take a whole lot longer than it did.
That evening we went home and spent some time with Ash. While we were gone both sets of Grandparents where up there and they got to hold her as well. They said that she was super feisty! When we got back up to the hospital I held her for a long time and she was doing good. Her oxygen level was staying up and she seemed pretty comfortable. I handed her over to Steve after a while so I could go and pump. When I got back he asked if I wanted her back and I said no he could keep her but he said he wanted to go to the bathroom so gave her to me. As I was watching her I felt like she was laboring a little more than she had been to breath. I mentioned it to Steve and he agreed. It was around 10 so we were getting ready to leave and as the nurse was putting her back in her isolette I mentioned to her that I felt like she was just trying harder than she had been to breath. She said that it might be a little better when she was laying down and we could watch her for a second to see. Once we watched her for a little bit I didn't feel like it was getting any better so the nurse went and let the doctor know. The doctor came over and she agreed that she did look like she was laboring and her oxygen levels were starting to drop again. They had her up to a 55 and it still wasn't holding. Dr Protaine told us that she felt that this was the beginning of the end and she would do anything we wanted, she would intubate we just had to say it. She told us she didn't know how long, it could be hours or days but this was the end. Steve and I left the NICU for a minute to talk. I told him that I felt like Quinney was telling me that she was ready. The whole time that the doctor was talking, Quinn was staring right in my eyes telling me that she was ready to stop fighting I just had to tell her it was okay. We decided that we would not intubate and that we would let her go. As hard of a decision this was to make it came easily. We both knew it was the right thing to do. We both knew in our hearts that it was the only thing to do for our Quinn. We couldn't break our promise to her because we were selfish and wanted her to stay. We both wanted her to stay more than anything but that wasn't what was best for her. We both called our parents and told them that she was not doing well and that it could happen anytime.
When we got back into the NICU we told the doctor our decision and they took her back out of the isolette and gave her to me. Within seconds I could tell that she did not have long and it would be happening quickly. Her oxygen levels were dropping rapidly as was her heart beat. I was so used to looking at that stupid monitor that I kept doing it and it was some what sending me into panic mode. We always liked the oxygen levels in the high 80s to 90s and here they were in the 20s. We asked that they turn the monitor off and all of the wires off of her. The nurse unhooked the monitors and took out her IV so I could just hold her. I didn't need the monitors to see that she was leaving us quickly I could see it in her face as she was turning blue. It was the scariest most heart wrenching thing any parent could ever watch. I stared into her eyes while kissing her over and over again telling her how much I loved her and how sorry I was that this was her fate. I felt like my heart was being ripped out of my body.
I honestly feel like Quinn held on as long as she did for Steve and I. I believe that she didn't want to scare us and every time that her levels would go into even the 60s I would be in panic mode. It wasn't until I said out loud that I felt like she was trying harder to breath did anything start to happen. Prior to that her levels were in the high 90s. Once she knew that I knew what was happening and that I wouldn't be scared she knew it was okay for her to let go.
At some point they moved us to a family room in the back to sit with Quinney. I did give her to Steve for a little bit but most of the time it was me holding her. Staring at her beautiful face. I wanted to commit every detail of her to my memory. She is such an amazing little girl who brought me and so many other people so much. She brought her Daddy and I even closer together and made us appreciate life so much more. She also gave her Daddy the biggest gift by giving him his Faith back. He had lost his Faith after we found out about the Trisomy 13 and after witnessing the miracle of her being with us he found it again. I am so thankful for every single second that we got to spend with our Quinn-bean. I do not have one single regret. Even knowing the outcome I would do it all over again. Every tear that I cry and all of the heartbreak is worth it for the 4 days, 6 hours, and 37 minutes of life that she shared with us. She is now my Angel in Heaven and will be with me always. There isn't a day, hour, or minute that will go by that I will not miss her but I know that someday I will see my sweet Quinn-Bean again and until then she will be watching over me.