In the darkness I have been blessed with memories of her final days on Earth. Memories that make me see the beautiful gifts that God gave us before taking her away. Thru these memories I can at least let go of the shock, I can say honestly that somewhere deep inside God was preparing me to let go.
The weeks before she passed I had said many times to myself and others, what can we do to make her life in the hospital more enjoyable. I had a renewed energy after the physical exhaustion of our long term hospital stay that was unexplainable. I told Chris we are starting "operation:get Bella home" I had spent hours researching alternative therapies and treatment for her edema. I thought that if we could get that fixed then we could move forward. Here are a few of the memories of the days proceeding her death...
The Sunday before she passed I awoke that morning determined to indulge Bella in hydrotherapy, something that she had greatly enjoyed during her time at Centennial but had not been practiced since. With permission from the Dr I created my own hydrotherapy set up for her. I found the perfect tub and had the perfect nurse on that day to get it done. She was emerged into a jacuzzi bath where I know her body had to feel lighter and more relaxed. She submerged her hands, arms, feet and legs without a fight and looked at peace. Upon removing her from the water where she was free from tape, wires and clothing, I massaged her whole body with lotion. Then without any help I put all of her wires, feeding tube, trach needs, etc back into place. I dressed her in her signature pink dress and hairbow. I layed a teddy bear beside her that played the sound of the ocean in her ear. And I watched her sleep more soundly than I ever have before. She was glowing, pink & beautiful. My sister and brother in law went by to see her later that night and without knowing about our day they told me how much better she looked and that she had smiled in her sleep at them. That was their last Bella smile.
On Monday she started having some respiratory issues and the edema had moved into her face more. However we were blessed with a brilliant Dr, team of nurses and nurse practitioners that knew her well. With some changes of her vent and prayers from all of you guys she stabilized. I had wanted to do her hydrotherapy again, I had wanted to pick her up and play but I knew that she was uncomfortable so instead I opted to crawl into her bed and snuggle behind her. I caressed her, massaged her, sang to her, rested with her and smelled her. I spent the entire day with her.
The remainder of the memories that week are not quite as detailed. I know that she was cared for by all of her primary nurses that week, they each got the gift of caring for her one last time before she passed. There were a few days where we put her in a swing and she relaxed there for hours. There were massages from Chris. There were snuggles from me. I read her our favorite book. I introduced her to Billy Joel. We opened up the blinds and let the sunshine pour into her room. We dressed her in new dresses I had just bought her for Valentines Day. We gave her lollypops and sugar water. She was surrounded in love every day that week.
The most vivid memory that I have now that should have prepared me for the phone call is this. Every day since Bella was born I have prayed with my hands on her asking the Lord to fill her with light, love and life. Every day I have had a visual image of Jesus sending light from heaven and filling her body. Every day for almost 9 months. A few days before she passed I said my usual prayer with my eyes closed waiting to see the light pour into her. For the first time in 9 months there was no light. At the time I blamed myself for not being tuned in, being distracted, or not being in constant communication with God that day. I told a friend that was familiar with my ritual that I could not tune in. She knew what that meant but I did not until she was gone.
The day she passed I had spent the first part of the day with Dylan at the zoo and the second half with Bella. This was my usual Tuesday & Thursday schedule since Dylan is out of school. One of her primary nurses that loved her so so much was on that day. When I arrived I found Bella in her chair, sitting upright with her princess tiara on her head, adorned in pink of course. She was over the chair after I got there and we got her out for me to hold. My usual holding position is her cradled in my arms, it is the only one she will usually tolerate well and gives me the opportunity to see her face. That day I put her on my shoulder, rocked her and sang to her. She loved it. When I got her back in bed she seemed exhausted but content from the day's events. Once again she slept soundly before I left.
The night that Bella passed we were blessed again with yet another primary nurse that loves Bella so so much. We called to check in before bed and she was doing great, sleeping soundly. My phone rang at 2:30 am, it was Vanderbilt's number. It was a person I was unfamiliar with. I don't know what she said at that time but I knew that this was it. I just knew it. I threw on clothing as Chris desperately tried to find someone that was awake at that hour to come stay with Dylan. I did not want to face this alone but I knew that if I waited for another minute I would not get there in time. I flew thru red lights, stop signs, literally sprinted thru the hallways of the hospital to get to her. This part gets blurry. I arrived to find them doing chest compressions and a full team of code specialists in her room. Everyone was moving fast and orders were being yelled. I fell into a chair. I started to talk to God, begging, bargaining, trying to trade places with her. I wish I could say that I gave her to Him willingly but that is not the case. That is not the case at all and that is the last conversation that we have had since. After knowing that all had been done that could be done, if I waited one more second she would die not in my arms I had them stop. They put her into my arms and she passed a few seconds later and just a few seconds after that Chris was by our side.
These memories show me a kind and loving God that gave us the most peaceful ending to such an amazing life. There were no signs of struggle that week, there were no signs of greater pain, she was stable for her condition. In the end it was her heart that gave out, not her lungs. On her 9 month birthday exactly. We have the security of knowing that she was surrounded that week with medical professionals that did everything they could do for her. Medial professionals that had not given up on her. We let them do an autopsy because maybe it will help them to save another baby in the future. But it doesn't matter to us what the report is, I would rather not know. We know with complete and total faith that it was her time to go, if it had not been then God would have overcome whatever it was as He always did in the past. I owe Him an apology and I miss our daily conversations. I am not mad at God for taking her but I am not ready to apologize to Him either for my selfish needs of having her with me. Our conversations and my prayers will come as the peace and gratitude start to take away some of the pain.
We have been lost since her death. Not knowing where to go or what to do. Just going thru the emotions of calmness one minute and complete hysteria the next. Sleep is not my friend. Dylan has asked several times for God to send everyone back down from heaven. We have no ideas where to go with life from here. We are going to journey to the beach for a while. We are going to try to find some big Bella smiles in the sunshine, hear the sound of her breaths in the waves and take ourselves away from a life that was built around her existence here on Earth. I hope to begin my conversations with God, I hope to be able to see that same light that Jesus poured into Bella for all these months but this time being poured into myself, Chris & Dylan. A light that will bring us back to life, a light that will begin to heal our pain, a light that will lead us down a path of God's purpose for us in this life.
We cannot express our gratitude in words for all of those that came to her service, sent their thoughts, sent their prayers, filled our home with beautiful flowers and good food. We cannot express our gratitude in words for all of those that assisted in giving her a beautiful service that celebrated her life. And once again we cannot even begin to thank all of the nurses, doctors, respiratory therapists, nurse practitioners and surgeons that assisted in giving us these past 9 months.
Much love to you all