Is this a waste of my time?
To write of the days leading up to the night that Anna died?
Should I just walk away from this and be content with the spiritual understanding that she is at peace? That she was a really sick little girl and was ready to die? That she is our Saint who prays for Manny, Gabriel and me and is with us everyday? That this was the best resolution for her?
Maybe I need to quit crying and actually sleep a full night and just accept that Anna is physically dead and spiritually alive. I should be happy she no longer suffers. Right? I wish it were so easy. I cannot do it.
Because there is my heartache. I am in awe that despite of my heart's brokenness, it continues to beat. That as my chest tightens and the pain becomes almost intolerable, my mind takes over for what my body cannot continue to sanely bare and I talk myself through what has become my new normal. These moments strike throughout my days and nights more often than I would like to admit.
I have spent the last eleven months looking forward. Reflecting back on what had happened was entirely too intense for me to fully let in, if I, at the same time, expected myself to function in everyday life.
Until recently, when my internal time clock sounded the alarm, snapped my head around and forced me to remember the last weeks of her life. I was not ready for the sleeplessness, the nightmares, the flashbacks, the tears, the pain, or the loneliness that this would bring. Desolation is not strong enough a word. And worse yet, there is no compartmentalizing these feelings. They are raw and in my face.
During the past week, I have hung in a delicate balance. I am aware that I have not chosen this. And that sometimes it is worse.
With every sleepless hour which has passed, I chronicled the painful memories. Read on if you will, but please, and kindly I ask this, do not exploit this experience to drum up donations for Rett Syndrome.
On August 14th last year, Anna was admitted to the hospital for what seemed to be another aspiration pneumonia. We were scheduled to leave on a family trip to Florida on August 18th, and I had high hopes she would be discharged by the 17th. Manny spent the night with her that first night; after they had settled into the room, I went home to pack my bag for a few days stay and sleep in my bed for a few hours while Daddy held down the fort. I arrived early afternoon on the 15th, and Manny reported that she had been up laughing most of the night, into the wee hours of the morning. Nurses who knew Anna from previous stays asked if she really needed to be there. It was cute and comical that she had such a little fan club. But then, she fell asleep. And her sleep became deeper and deeper. Mid-morning, she quit breathing, and Manny had to perform CPR. After a few quick puffs, it seemed to "reset" her. She started breathing on her own again. The Pediatric Intensive Care Unit was called in due to her increasing unresponsiveness.
They scheduled an emergency CAT scan, thinking she may have had a stroke. Or something else. I remember running next to the stretcher as they loaded her lifeless body into the elevator. And then it happened. A third-year resident ran over to the attending physician and handed her a piece of paper. It showed the results of Anna's blood gases. Her eyes widened. Within seconds, the doctors pulled the stretcher out of the elevator and ran Anna into the hospital room and started breathing for her. We saw her little chest going up, down, up, down. It was at that moment I looked at Manny and I said, "We are not leaving this hospital with her." He rightly shushed me. I said it differently this time. Tears welling, "Manny, the Blessed Mother is at the foot of that hospital bed, and she has asked me to prepare to walk the road to Calvary." I don't remember what he said.
As Anna's levels somewhat normalized for a moment, she looked at us and the attending asked her, "Anna do you see Mommy and Daddy?" Anna looked right at the two of us, and smiled that beautiful smile, and laughed. They cancelled the CAT scan. But it was the last time we would hear her laugh.
Once we were moved into the PICU, I will never forget the attending physician who tried over and over with different breathing machines to get Anna's CO2 levels down, but to no avail. The decision was made to intubate. Manny and I were escorted out of the room and told to wait. Different details emerge for me. The paralysis medication. The sedation. The arterial line. The filters that would have to be changed. The gagging. The suctioning. The coughing. The tears. The beeping. The complete lack of control over what was happening as the days went by. Some doctors understanding my abrasiveness, but most of them not. Most days I felt like I was losing my mind and all I could do was try to keep her calm by talking her through everything and announcing every visitor. Her anxiety, rightly so, was at an all time high, and the seizures...
This is an update I shared during this time:
August 22nd:
Today marks one week Anna has been intubated on the ventilator. It has been a tumultuous time with many ups and downs too long to detail. In summary, there have been seizures, desaturations, resuscitation, a collapsed left lung, a PICC line placement and a bronchoscopy, due to a double aspiration/chemical pneumonia. We learned today that what seems to have precipitated this is a viral induced suppression of bone marrow that left her unable to defend her little body against the pneumonia. We now wait for her lungs to clear and her body to heal to see when we can begin the process of bringing her off the vent and breathing again on her own.
Two days later, the attending, who I know I drove beyond crazy but respected, made the decision to wean her off the ventilator and transfer to bi-pap. I could not have been happier.
But then:
August 24th:
Anna's keeping the nurses on their toes tonight. Blood gases so far look good, but lots of secretions and some uncomfortable withdrawals from sedation. As I look at her before I change into my pj's and make my bed, I remember something I once read: "Some people spend their lifetime looking up to their hero. The truth is, I gave birth to mine."
August 29th:
Anna Banana update, Day 16: her withdrawals (from sedation) have subsided and she is more comfortable now, she is currently stabile on bipap and tolerating new formula through j-tube, and her chest x-rays look better everyday. However (and I live for the day there is no "however"), every time doctors start to wean her off bipap, her CO2 levels rise. I cannot stress enough how much we want and need her to come off bipap and breathe on her own again. Once this is accomplished, we can get through the list of tests and studies that need done so there is a workable plan in place for her care and we can bring her home. We are surrounded by our supportive family and wonderful friends, thank you for all of your prayers and well-wishes. Please keep them coming.
On the evening of August 30th, after days of watching her tremor and seize, and the doctors doing as much as they possibly could for Anna, I asked the nurse if I could crawl into bed with her. She helped me with all of the tubes and I sat Anna in my lap for the first time since we had been admitted. I thought maybe, just maybe, this would bring her some peace. It did not have the intended result, and I was crushed.
Later, in the wee hours of the morning, neither of us could sleep and she was crying. I held her again, this time on the side of the bed in a chair, with the bipap blowing at the highest setting and her poor body looking more beat up by the day, and we had a conversation. I whispered in her ear, "Anna, please do not be mad at me for saying this. But if you are ready to go, I need you to know that you do not have to stay for Mommy and Daddy. If you are ready to go, it is okay." She opened her eyes and looked deep into mine and she let me know. She was ready. I tucked her back into her hospital bed, and I cried for hours. I remember texting Manny's mom, Ilsa, who had flown up from Florida to help, sharing with her that I felt God had forsaken us. I asked her to come to the hospital as early as she could, because I did not want to be alone. I knew it was a matter of time.
And then:
Sept. 1st:
We had a few hours off the bipap today and were on a high-pressure nasal canula to see how Anna did. She maintained all her stats and relaxed a bit. Unfortunately, when they did a blood gas check tonight, her CO2 was through the roof, and we are back on bipap. The setbacks are getting old. We need good news.
That evening, Ilsa stayed with Anna for a few hours and Manny and I went to dinner to have a conversation. We made the decision in a moment of non-crisis - the time would come they would need to reintubate, as she was no longer responding to bipap or anything else, and we needed to know what our answer would be. We made it together. And then we cried.
Sunday and Monday of Labor Day weekend were a blur. Anna was less and less present, and I prayed the first day of a Novena to St. Therese of Lisieux. I asked her that Jesus' will be done. If Anna were to get better, she needed to get better. If her time on Earth was over, then it needed to be over. I could no longer watch her hang in the balance.
Three hours later, I woke up to the third-year resident who knew us and Anna by now talking to the nurse. I heard the words "we have to reintubate" and I sprung up. I began shaking uncontrollably. The time had come. I asked the doctor into the family room. It was around three or four in the morning of September 4th. I asked her professional opinion and shared that Dad and I had agreed. We did not wish to reintubate. It was time to let her go. It was time for us to give her peace. Little did I realize that my suffering had really just begun.
I called Manny. He was there by 5 a.m. The doctors slowly came in. She was failing.
As serious and painful conversations took place, I moved through the hours in a daze. Barely comprehending what was happening yet never more sure of a decision. Doctors who became extended family spent time with us, and Anna.
And then Moses.
Moses was Anna's nurse the first day she was in PICU. A gentle man, but strong. Moses was Anna's nurse the last day she would be in PICU. As I looked over her bedside, and touched her and spoke softly to her, he said to me, "You are my hero." I was confused. He went on, "The decision you are making for her is just that - for her. So many times I see parents make decisions for themselves that only buys time and prolongs suffering. You are my hero for doing this for her."
His words will forever stay with me. He was meant to be there that day.
As medical records were written and papers were signed, the bipap was removed. We replaced it with a much less invasive high pressure nasal canula, and we cleaned her up and put a pink flower in her hair. I had told her from Day One in the hospital that when she was feeling better I would paint her nails a pretty pink. I knew it was my last chance to paint those perfect nails, so I did.
Gabriel came to the hospital, and with the help of child life specialists, we told him what was going to happen. He went in to say goodbye. She did not open her eyes for many that day, but she opened her eyes for him. She knew exactly what was happening, and she was at peace. She smiled at him, and he told her he loved her. Then he went home.
Grandparents drove in, and we all prayed they beat the clock. They did. And as the hours went by, people in our closest circle came to say goodbye, and she slowly left us. By 11 p.m., we knew she would not make it through the night, and we all kept vigil around her bed. At one point, the nurse asked me if I wanted to hold her. I was so afraid of disturbing her all day that I just sat next to her and held her hand. But yes, I wanted to hold her. She gave her to me, and we all prayed her into Heaven. She passed at 1:22 a.m. on September 5th.
I left the hospital after giving her a kiss on the forehead. It was different this time. She was gone.
And I knew she was so happy to be done. It was over. In that moment of losing her, I cannot describe the emotion I experienced. It was almost as if I had seen the chariot come down from Heaven and take her up and dare I say I felt joy that her suffering was over. I know it was not for nothing. I know it had meaning. I do not know how I know. But I know.
There is no denying that this has changed me, and that this has been the hardest chapter of my life. Thankfully the Lord has given Manny and I the best of friends and the most supportive family. We are beyond blessed to have one another and the support system of those around us. We know we are not alone, and that is a great gift.
I can imagine that Anna is telling me I will be okay. To be patient. That she is with me. And to quit worrying so much. I must remember the peace that surrounded me the days after she died. To treasure the gift that she was. She was my missionary.
I just miss her so much. The pain, it is still too much. I struggle with the question, Will the pain ever go away? And if it does not, how does one live their life with the pain?
I do not know.
I just miss her so much. The pain, it is still too much. I struggle with the question, Will the pain ever go away? And if it does not, how does one live their life with the pain?
I do not know.
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