I often think back to the days and hours surrounding Adeline's death. I am always left with the same conclusion: I have no regrets. There was nothing more we could have or should have done. I saw the x-rays I talked to the doctors. It is very simple, she was just not sent to stay. Her lungs did not grow, they simply weren't big enough to support her. After they delivered the news that Adeline did in fact have polycystic kidney disease and told us in no uncertain terms that her chances for survival were very small, the doctors spent a lot of time talking to us, explaining, trying to make sense out of the senseless. I will forever be grateful to them for this. There is no amount of information that could take the pain away but it is helpful, at least to me, to have some answers. They are not good ones but at least I have them. Many parents never get that kind of peace.
We first knew that the outcome was not going to be the one we wanted when the nephrologist finished her examination that first day in the NICU. She came into Liam's room with the neonatologist and told us that the cysts were very visible now, although they had not been prenatally. It was definitely PKD and given the comorbid pulmonary hypoplasia, her chances were not good. They gave us this news as if they were spitting it out at us, trying to get rid of it, get it over with. That must be one of the worst parts of their job, to have to watch as faces of happy parents turn to pure terror. After this rather abrupt delivery however, they were wonderful. They spent many hours with us, checking on Adeline, discussing her chances and our options and how we wanted to proceed. It was always our choice it was never forced. After that first day I had gained a bit of hope. It was only a tiny glimmer but I was holding onto it for dear life. I was leaving that hospital with two babies and that was that.
During that first night we were woken up by the neonatalogist, who will forever remain one of my least favorite people. She informed us that Addy had developed another pneumothorax and that this was a sign that her little lungs were just too little. In the morning she had stabilized and had been holding her own but was recieving all of the help they could possibly give her. If she took a turn for the worse there was nothing more they could do. In talking with the doctor we let him know that we wanted to see what she would do and let her fight if she was able to but did not was any heroic, painful measures taken that would likely do little to extend her life. We did not want to let the go but we did not want her to suffer either. I pray that this is the hardest decision I ever have to make as a parent. We were able to visit with her, talk to her, hold her hand and give her all of the love we could possibly pack into one short day. Sawyer came to visit and was so taken with his new brother and sister. I feel like he could sense how sick she was, although we did our best not to let on. He spent a lot of time checking out her machines and checking on her through the portholes in her isolette.
Adeline was able to maintain her oxygen levels throughout the day and the respiratory therapist came in to adjust the settings on her respirator to see if she could tolerate a slightly lower setting. Her oxygen dropped almost imediately and did not return once the settings were turned back up. As we watched the numbers on her monitor continue to drop we realized it was time. This was her sign. She was done fighting.
We were able to hold her while she was still on the respirator she opened her eyes and looked at us. She had big blue eyes just like her brothers. Sawyer was able to come back into the room and spend time with us and with her while we said goodbye. I am so very glad he got to meet his sister and I know that she will always hold a very special place in his heart. I do not know how I could have made it through that day without him there.
I cannot possibly express how amazingly grateful I am to all of the staff at the NICU for all that they did for us the day that we lost Addy. We were never pushed, we were never rushed. They protected us and grieved with us as if we were their own family. I will forever be amazed that I was able to come away from such a horrible day with beautiful memories and no regrets.
No comments:
Post a Comment