Sunday, March 29, 2009
Update
It's been a long time since I wrote. I have a page at caringbridge now - daisyknowles - all one word. Daisy has been at Stanford's PICU twice - but she is home at the moment. Look us up on caring bridge. . .
Wednesday, September 3, 2008
Waiting
On Monday, July 28th, Tom and I spent the majority of the day on the phone to family and friends. Our good friends Jeff and Debi were here to help with Zoe and Teddy so that Tom and I could do the physical and emotional work that we needed to.
We would call the NICU periodically to check on Daisy, who seemed to be getting even worse. At some point they put something on her to help her breathe, called a C-Pap. She was being fed through a tube which was inserted into her nose, down her throat to her stomach. Everytime we would call the NICU, I would cry after hearing the report.
I could barely eat. All food tasted, and felt, like cardboard. Monday is the first day that I met Monica, our public health nurse - and my friend. Monica bravely gave us information about support groups and other information for a family suffering from a loss. She shed some tears with us too, which was astonishing, because she had just met us.
I also remember a very touching phone call I had with Dr. Gannon, our children's pediatrician. Dr. Gannon and I discussed comfort care, and what that would mean for Daisy. I was touched with Dr. Gannon's thoughtfulness, and her concern. She told me that we were doing the right thing, that not only did the medical field support our decisions to not prolong Daisy's life if she was trisomy 18, but that her church also supported such a decision. I could tell that Dr. Gannon's heart was with us.
What an outpouring of love and support we were receiving. It was comforting, and it was welcomed. For once in my life, I accepted the help of others. So, for all of you reading this now, please know that your words, your thoughts, your prayers and all the food you brought was and is appreciated.
We would call the NICU periodically to check on Daisy, who seemed to be getting even worse. At some point they put something on her to help her breathe, called a C-Pap. She was being fed through a tube which was inserted into her nose, down her throat to her stomach. Everytime we would call the NICU, I would cry after hearing the report.
I could barely eat. All food tasted, and felt, like cardboard. Monday is the first day that I met Monica, our public health nurse - and my friend. Monica bravely gave us information about support groups and other information for a family suffering from a loss. She shed some tears with us too, which was astonishing, because she had just met us.
I also remember a very touching phone call I had with Dr. Gannon, our children's pediatrician. Dr. Gannon and I discussed comfort care, and what that would mean for Daisy. I was touched with Dr. Gannon's thoughtfulness, and her concern. She told me that we were doing the right thing, that not only did the medical field support our decisions to not prolong Daisy's life if she was trisomy 18, but that her church also supported such a decision. I could tell that Dr. Gannon's heart was with us.
What an outpouring of love and support we were receiving. It was comforting, and it was welcomed. For once in my life, I accepted the help of others. So, for all of you reading this now, please know that your words, your thoughts, your prayers and all the food you brought was and is appreciated.
Driving Home
As Tom and I drove home from the hospital we talked about what to do next. We decided that we would wait until Thursday for the test results, and if they came back with a report of Trisomy 18, we would let Daisy return to God. Even now, as I write this I feel the tears well in my eyes and a tightness return to my chest. We called our priest to have Daisy baptized, and Tom bravely contacted the funeral home. Ok, now I am sobbing at the memory of this.
At the time, we had decided that we would face this - and we would face it bravely. We would do right by our little girl. We wanted to bring her home, but at that moment, it looked grim that Daisy would be able to survive even walking out to the car. It was important to me, very important to me, that if my little girl was going to leave this world, that she would leave it in my arms - with Tom there. We created her together and we would be there together as she left to be with God. She is our child, I kept thinking - and we have to do it right - right by her, and right by ourselves. I never imagined that I would have to contemplate this sort of thing.
What kept me afloat? Tom, certainly the strength of my husband. But our other children, their bright faces, their hugs, and even their tantrums. I had to keep living, I had to keep moving and doing. What also helped was knowing that this did not have to be the biggest event in my life. We could have another child if we wished. Although another child would never replace Daisy, it God intended that Daisy was to return to his realm, then maybe we all had something to learn from her short stay and we would be better parents, and better people for it.
At the time, we had decided that we would face this - and we would face it bravely. We would do right by our little girl. We wanted to bring her home, but at that moment, it looked grim that Daisy would be able to survive even walking out to the car. It was important to me, very important to me, that if my little girl was going to leave this world, that she would leave it in my arms - with Tom there. We created her together and we would be there together as she left to be with God. She is our child, I kept thinking - and we have to do it right - right by her, and right by ourselves. I never imagined that I would have to contemplate this sort of thing.
What kept me afloat? Tom, certainly the strength of my husband. But our other children, their bright faces, their hugs, and even their tantrums. I had to keep living, I had to keep moving and doing. What also helped was knowing that this did not have to be the biggest event in my life. We could have another child if we wished. Although another child would never replace Daisy, it God intended that Daisy was to return to his realm, then maybe we all had something to learn from her short stay and we would be better parents, and better people for it.
Friday, August 29, 2008
Update on Daisy Today!
While this blog is intended to cover the history of Daisy's life - it also rightfully should include current updates.
We happily receive visits from a public health nurse, Monica. I adore Monica for her warm demeanor, gentle and wide smile and her encouraging words. I don't think of her as a nurse coming to visit, but rather a knowledgeable friend.
Monica came to visit today - and she weighed Daisy. Daisy is 8 lbs, 11 ounces. On the 19th Daisy weighed 8 lbs even, so she's gained 11 ounces in 10 days. Even more good news, Daisy has grown an inch since her last dr.'s visit, and is 20 1/2 inches long. Daisy also spent some time smiling at Monica and gazing into Monica's eyes. All very good news.
We happily receive visits from a public health nurse, Monica. I adore Monica for her warm demeanor, gentle and wide smile and her encouraging words. I don't think of her as a nurse coming to visit, but rather a knowledgeable friend.
Monica came to visit today - and she weighed Daisy. Daisy is 8 lbs, 11 ounces. On the 19th Daisy weighed 8 lbs even, so she's gained 11 ounces in 10 days. Even more good news, Daisy has grown an inch since her last dr.'s visit, and is 20 1/2 inches long. Daisy also spent some time smiling at Monica and gazing into Monica's eyes. All very good news.
Seeing Daisy
Once I was home I felt like a zombie. My parents in law came over to help with dinner and the kids. I felt numb and in a daze.
Tom and I decided to go to see Daisy on Sunday, the day I was originally scheduled to leave the hospital. It was nice to spend time together with just Tom, to talk about what was going on. Tom was, and is, my rock. He allowed me to break down and cry whenever I needed to - he cared for me like a child in some ways - which is exactly what I needed and craved, for someone to take care of me. For those who know me, this is not the "Sara" that everyone knows. I am always taking care of everyone else. I rarely accept help, I am always doing things on my own. Well, facing a tragedy changes a lot.
As we got to the hospital, deep anxiety set in and fear. What would Daisy look like now? We couldn't find a wheelchair anywhere, and walking the near 1/3 of mile to the 5th floor NICU was difficult because of the c-section. When we got to the doors of the NICU I felt my knees get rubbery and weak. I physically leaned on Tom.
After scrubbing our hands and arms, we walked into Daisy's bay that she shared with one other baby. It was light and bright and Daisy's nurse, Sandy was warm and welcoming. Daisy had tubes in her, and was weak and limp. I held her, and cried. My baby, my little baby girl was so little and so frail and weak. She did open her eyes once while we were there, and looked at me and then cried just a little. Given the initial diagnosis, and the state of our girl, I felt that she was destined to be with God. I just rocked and rocked her. The doctors made their rounds and talked to us, but there was no news. While we were there she had a heart ultrasound that showed two little holes in her heart. But these were not causing her any problem or issue. We didn't really know what the issue was, only that they suspected trisomy 18.
Even with all the uncertainty, and the fear, I could feel my heart grow with love for this little child that I carried inside me for nine months. This little life that we created - the little life that we would protect and honor.
Fastforwarding ahead, I have to write that today, this morning, Daisy is upstairs still asleep. She's not a trisomy 18. She's been home with us now for almost four weeks and is growing and growing and acting like a normal baby. Sorry to spoil the story - which I will finish but I can't allow anyone to wallow in the sadness that permeated our lives for over a week without giving a glimpse of what life is like now.
Tom and I decided to go to see Daisy on Sunday, the day I was originally scheduled to leave the hospital. It was nice to spend time together with just Tom, to talk about what was going on. Tom was, and is, my rock. He allowed me to break down and cry whenever I needed to - he cared for me like a child in some ways - which is exactly what I needed and craved, for someone to take care of me. For those who know me, this is not the "Sara" that everyone knows. I am always taking care of everyone else. I rarely accept help, I am always doing things on my own. Well, facing a tragedy changes a lot.
As we got to the hospital, deep anxiety set in and fear. What would Daisy look like now? We couldn't find a wheelchair anywhere, and walking the near 1/3 of mile to the 5th floor NICU was difficult because of the c-section. When we got to the doors of the NICU I felt my knees get rubbery and weak. I physically leaned on Tom.
After scrubbing our hands and arms, we walked into Daisy's bay that she shared with one other baby. It was light and bright and Daisy's nurse, Sandy was warm and welcoming. Daisy had tubes in her, and was weak and limp. I held her, and cried. My baby, my little baby girl was so little and so frail and weak. She did open her eyes once while we were there, and looked at me and then cried just a little. Given the initial diagnosis, and the state of our girl, I felt that she was destined to be with God. I just rocked and rocked her. The doctors made their rounds and talked to us, but there was no news. While we were there she had a heart ultrasound that showed two little holes in her heart. But these were not causing her any problem or issue. We didn't really know what the issue was, only that they suspected trisomy 18.
Even with all the uncertainty, and the fear, I could feel my heart grow with love for this little child that I carried inside me for nine months. This little life that we created - the little life that we would protect and honor.
Fastforwarding ahead, I have to write that today, this morning, Daisy is upstairs still asleep. She's not a trisomy 18. She's been home with us now for almost four weeks and is growing and growing and acting like a normal baby. Sorry to spoil the story - which I will finish but I can't allow anyone to wallow in the sadness that permeated our lives for over a week without giving a glimpse of what life is like now.
Wednesday, August 27, 2008
Leaving the Hospital
Even though I had a c-section, after the news I received on Friday my doctor agreed that I could go home on Saturday provided that I had no issues. I was thankful for this news. Although the sound of a crying newborn is a blessed, joyful noise - it was torture for me to remain in the hospital. All through the night Thursday and Friday there was a very healthy, loud baby crying in the next room. I sobbed Friday night everytime I heard this baby cry - I wept as I pumped my milk for a baby that, at that time according to our information, was possibly going to die. It seemed like such a slap in my face to have to pump my milk, to have to listen to a baby cry when I couldn't hold mine. I couldn't nurse her, I could not cuddle her and breathe in that newborn baby scent. How, I wondered, could God give me this to bear? All I could do was tell myself that this wouldn't be the end of my world, that I could have another child if this one was destined to go back to God. I hoped that these words, these thoughts of mine would sooner or later give me comfort.
Tom came to get me, alone. One of my favorite nurses, Angie (she seemed more like an Angel to me - she cried with me when I told her about Daisy) helped us get my things together. I was wheeled out of that hospital - leaving was tearing my heart out - because I was leaving without my baby girl. Tom and I both wore our sunglasses as we went through the hospital, tears streaming down our faces. As we got to the car, the valet asked if we had had a baby. How do you answer that as your leave without your child and the knowledge that she may have a fatal condition?
It was, perhaps, one of the worst moments of my life.
Tom came to get me, alone. One of my favorite nurses, Angie (she seemed more like an Angel to me - she cried with me when I told her about Daisy) helped us get my things together. I was wheeled out of that hospital - leaving was tearing my heart out - because I was leaving without my baby girl. Tom and I both wore our sunglasses as we went through the hospital, tears streaming down our faces. As we got to the car, the valet asked if we had had a baby. How do you answer that as your leave without your child and the knowledge that she may have a fatal condition?
It was, perhaps, one of the worst moments of my life.
Friday
My husband, Tom, came by the hospital the next day, Friday, on his way to UCDavis Medical Center to see Daisy and find out more information. He picked up the breast milk that I had been able to pump through the night. We talked briefly about what could be wrong with our little girl and away he went.
I spent the rest of the morning and part of the afternoon napping a bit, crying, and researching possible syndromes on the internet in an attempt to gather more information. Tom called me from the hospital that afternoon, his voice sounded strained and thick. "What is it Tom?" He replied, "The doctor think it's a one in three chance that she has trisomy 18." I knew in an instant what that meant and I began to cry. On the other end of the phone line I could hear Tom fighting to not cry himself, in vain. "Oh Tommy, no. God, no." I cried. I asked a few questions about how she was, what she was doing but it was too hard through the tears. Tom told me that he had been holding her, and singing to her. I told Tom that I loved him, and that I wanted him to tell Daisy that I loved her too.
I was all alone when Tom broke the news to me. I cried and cried - horrible gut wrenching tears that racked my body. It hurt to cry so hard, my incision from surgery was still fresh. I called my mother, and begged her to come. I then called my friend Charlotte, my great friend Charlotte. Upon hearing the tears in my voice she didn't even ask what was wrong, she just asked "Do you want me to come?" I said yes and Charlotte was there shortly to cry with me, to hold me, to be my friend.
Charlotte is the type of friend you always wanted to have. She's smart and astute, and ever generous. She calls it like she sees it, but never wants to offend anyone. She's there in a heartbeat if you need her - and that day, I needed her. Charlotte is one of these friends that you hang on to - that you share your life with. She is ever steady and pure of heart.
Tom came later that day with our children. We tried to put on brave faces for them, and just spend a few moments together. I really wanted just Tom, so that together we could cry in each other's arms - but our kids needed us and they needed to feel like life was going to be okay. I just wish that at that time I could have believed this myself.
I spent the rest of the morning and part of the afternoon napping a bit, crying, and researching possible syndromes on the internet in an attempt to gather more information. Tom called me from the hospital that afternoon, his voice sounded strained and thick. "What is it Tom?" He replied, "The doctor think it's a one in three chance that she has trisomy 18." I knew in an instant what that meant and I began to cry. On the other end of the phone line I could hear Tom fighting to not cry himself, in vain. "Oh Tommy, no. God, no." I cried. I asked a few questions about how she was, what she was doing but it was too hard through the tears. Tom told me that he had been holding her, and singing to her. I told Tom that I loved him, and that I wanted him to tell Daisy that I loved her too.
I was all alone when Tom broke the news to me. I cried and cried - horrible gut wrenching tears that racked my body. It hurt to cry so hard, my incision from surgery was still fresh. I called my mother, and begged her to come. I then called my friend Charlotte, my great friend Charlotte. Upon hearing the tears in my voice she didn't even ask what was wrong, she just asked "Do you want me to come?" I said yes and Charlotte was there shortly to cry with me, to hold me, to be my friend.
Charlotte is the type of friend you always wanted to have. She's smart and astute, and ever generous. She calls it like she sees it, but never wants to offend anyone. She's there in a heartbeat if you need her - and that day, I needed her. Charlotte is one of these friends that you hang on to - that you share your life with. She is ever steady and pure of heart.
Tom came later that day with our children. We tried to put on brave faces for them, and just spend a few moments together. I really wanted just Tom, so that together we could cry in each other's arms - but our kids needed us and they needed to feel like life was going to be okay. I just wish that at that time I could have believed this myself.
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