She has been such a strong fighter and we thought for sure she would pull through. The last couple of days she has been struggling getting enough oxygen to her tiny body. The doctors at Children's worked very hard to keep her going but nothing they could do would help her survive. They had to increase her oxygen to 100% and maximize the medications to help her blood pressure, lung development, and more. They were perplexed as to why she was not getting any better...even a little. After much research and consultation with several experts they realized she probably had a rare and fatal lung disease that occurs as the lungs develop and was not a result of prematurity. We were told that even if she had been full term, she would not have survived. Even if she could have survived pulmonary stenosis (the blockage in her pulmonary artery in her heart) and the lung disease, she also had bleeding in her brain that would have caused serious neurological damage.We received a call at 3 AM Thurs morning at Evergreen that she was going downhill fast and we should be with her. Tom and I gathered ourselves together and rushed over to Children's. We had received a similar phone call the night before and been with her for a while until she appeared somewhat stable then went back to Evergreen to stay, so this call was not wanted, but not unexpected. We had also talked with Dr. Jackson (Brooke's doc) about what was happening. He explained that all possible treatments had been exhausted and he wished he could offer something else they hadn't tried, but couldn't. He has been very compassionate through the span of her brief life and this time was no exception. She was dying, not if, but when, and we needed to make a decision between medical care and loving care. This phrase really hit home to us, though we did not want to face the reality of it all.
When we arrived at the hospital around 4 AM Brooke was still hanging on. We started making phone calls to family and slowly they started arriving. Not sure what to do or who to have present, we couldn't have planned it better if we had planned it at all. Our parents, Tom's brother, Charles, and Debbie with kids, Connor and Micaela, and little Tom and Andrew were there by 6:30. Tom was able to give Brooke a name and a blessing. By about noon we also had Tom's sisters, Jeanette and Rachel, their husbands, Matt and Walter, Jeanette's kids. We spent the day holding her for the first time. I was able to do kangaroo care with her, the boys held her, grandparents, and Tom too. Up to that point her heart rate had been extremely accelerated because of all the medications, but was now dropped to a more normal resting level. We knew that she was feeling comforted and we were too. The hospital offered us an opportunity to have a non profit photographer come in and take black and white photos for us, so this was done while we held her. The nurses and social worker also worked quickly taking pictures, printing them, and putting together a memory box for her full of a scrap book, Christmas ornament with her footprint, and pictures for the boys with their hand print and hers.
The hospital's chapel was available for use after 1 PM, so at 1:30, held by her Daddy, Brooke went downstairs with us. We gathered as a family with me, holding Brooke, Tom, little Tom, and Andrew in the center of the room All the others gathered around us. Tom's dad offered a family prayer and then they removed her breathing tube. Brooke looked so pretty, this was the first time we had seen her little face without any medical equipment. I had been sobbing off and on for the 2 days prior, but at that moment, I felt a strong sense of peace. Brooke did too. She cracked her eyes slightly and gave me a tiny newborn smile. I knew that there was a room full of people, but all I saw was her sweet spirit comforting me and telling me it was okay. We stayed gathered as a family for a short time, then returned upstairs to her room. I couldn't let her go...we held her for a few hours more. The hardest thing I have ever had to do was leave her in that room and walk away.
Tom and I hadn't eaten for a long time so we went downstairs and ate with our family. Everything seemed so surreal. We ended our day talking and reflecting, crying and laughing with the kids playing together at the playground. Our family really pulled together and we knew that we were surrounded by love. After we all left Children's, we decided we needed baby therapy. We headed to see our little ray of sunshine, Summer, at Evergreen. Tom was able to do kangaroo care with her for two hours while he fell asleep and the boys slept by me on the couch.
We do and will miss Brooke immensely, her little spirit can never be replaced. Though only 10 days old, she left an imprint on all of us we will never forget.
