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.

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.

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.

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.

Taking Daisy Away

After Daisy was born I was having a hard time staying awake. Also, everything I raised my head about my heart I began to vomit. I really didn't have much of a chance to be with Daisy at all. I held her on my chest for awhile, but the nurses kept monitoring her.

Our pediatrician came to examine Daisy and explained that because of her breathing difficulties that she wanted Daisy to remain in the nursery to be monitored. She also wanted to sending some blood to Davis for some testing. We began to worry.

I was put into a recovery room and Tom went home with our children to get them settled. Only later, about 9 pm was I greeted by the on-call pediatrician who explained to me - as I layed alone in my hospital bed - that he wanted to send Daisy to UCDavis Medical Center where she could be monitored in the NICU. He explained that she wasn't processing oxygen properly. My heart began to race, and my whole body began to shake. My teeth began to chatter - this is something that I have never experienced before - and I realize now that I was in shock. I called Tom immediately, hysterical and begged him to come back. He said he would and I then pleaded with the nurses to help me get to be with my daughter before they took her. Oh the horror I felt. I began to fear that I wouldn't have a chance to be with her again. I couldn't sit up, I could only barely move and here they were going to take my little girl away before I even got the chance to see her.

The nurses gave me Reglan (sp?) which helped me to be able to sit up, but made me very drowsy. As they were wheeling me into the local NICU unit, which only has room for 2 babies, Tom came in. I held Daisy, and tried to stay awake as the transport team arrived. They took Daisy out of my arms and placed her in a plastic bubble. I remember that she opened her eyes and looked at us, as if to plead with Tom and I. It was horrifying to say goodbye - hoping that we'd see her again very soon but realizing that something could go wrong. Tom made plans to go to UCDavis the next day and I spent that night crying, and trying to pump breast milk for our little girl.

Perhaps the worst thing was having to stay in that hospital, without my little girl and without my husband. Tom had to go home to our other children, which left me alone. In the next recovery room I could hear the most beautiful sound - a healthy child crying. However, with every cry my heart broke because I wanted my little girl and it was a constant reminder that she was gone from me. My mind was wandering, wondering what could be wrong. I researched what I could online with the computer Tom left me - as our pediatrician was concerned about a muscular disorder - but nothing could prepare me for what was to happen.

My surgical experience (or Daisy's birth)

I have had surgery twice, once to repair a severed nerve in my hand and then again to place a dental implant which replaced a tooth. Both times I was awake and the procedure only lasted about an hour.

This time, though, I didn't really know what to expect. Sure, books said that c-sectin lasted only about half an hour, and the prep time was about twice that. When we arrived at the hospital we started a wait game. First we waited to have the an ultrasound. Then we waited to have the baby monitored. Then we waited to see about the doctor's availability. We waited some more to see which surgeon could assist, and which doctor was available to administer the spinal block. Then we waited while our nurse took a break and we waited again for blood to be taken. I waited while my husband stepped out to get some lunch - I couldn't eat but why should he starve? Finally, I was wheeled into the surgical unit at about 12:30. I received my spinal - which wasn't pleasant. I could feel my legs getting numb and warm but I tried to focus on the fact that I would be meeting our new child any minute. Still, I could feel my anxiety level climbing and I just tried to tell myself that as soon as Tom, my husband, came in the room he could help me stay calm.

They layed me down on the table and I could feel the numbing medication start to creep up my shoulders. I started to ask for Tom and then it hit me. A wave of fear washed over me, and all I wanted was to run out of there. But of course, I couldn't run because I was numb from the chest down. "No!" I cried, "Where is Tom? I want Tom!" My midwife spoke to me softly and encouraged me to breathe. I cried, and cried as I begged them to get Tom. I was given an anti-anxity medication and quickly I relaxed. I think it was about that time that they began surgery and then Tom walked in. Tom sat by my head as I struggled to stay awake and alert. I could hear the surgeons talking, idle chit chat as my stomach lay exposed, and then my uterus. Tom stood up a couple of times to look and quickly, very quickly, my doctor said "Dad, take a look." Tom stood up to look at our child, a baby girl! He told me quickly, as I urged him to go be with her.

Tears dripped down my the sides of my face as I waited to hear her cry. It was a weak , soft cry. She sounded much like a newborn kitten. The nurses were busy suctioning her airway and she sounded raspy and a bit weak. Tom eventually brought her over to me and I said hello and was able to kiss her. The doctors sewed me up, and I could hear the surgical nurse counting the instruments to make sure that they didn't leave anything inside of me!

We were wheeled into the recovery room, where Daisy curled up on the warming table and the nurses tended to her. I was struggling to recover from the medication, eager to sit up but completely unable to do so. My legs were numb and I couldn't move them. Tom brought Daisy over again, but the nurses were continuing to work on her. I asked when I could nurse her, but it became clear that Daisy wasn't ready. She needed some time and then I continued to wait, waiting for her the breath better, waiting for her to be placed in my arms, waiting to begin my journey with her as her mother, waiting to get to know this precious child.

I was going to have to do a lot more waiting.

Trying to flip the baby

Our little baby was starting to show us tht given the worst odds, she would be the one to bet on. It is very rare that a baby flips in the last week of pregnancy. Even so, the "version" is successful 75% of the time to flip the baby back to the head down position. So, into the hospital we went, my husband holding my hand as a crew assembled to try to flip our dear child.

I've given birth twice. Once was completely natural, no drugs of any kind. The second birth was induced, but no pain meds of any kind. The pain associated with the version was right up there with the intense pain I've felt when each of my other two children crowned. The doctor, in a version, coats a pregnant tummy with slick gel, applies as much force as he (or she) thinks is necessary to coax the little baby into a head down position. In my case, my doctor was 200lb man, with hands that resembled bear paws. My wonderful midwife was there to help me, and my darling husband was there along with a team of nurses. All the audience in the world wouldn't have helped, because dear little Daisy was not going to turn. We then began to prepare ourselves, and our other children, for the following day, which was to be Daisy's birthday and my scheduled c-section.

That night, knowing that we would be preoccupied with my recovery and a new little baby, my husband took Carter out for a little one on one time. I was alone with our two little ones, who couldn't really understand what was to come. I spent some of the time writing a letter to my family. It sounds silly, but it was my "if the worst happens" letter. The thought of surgery scares me, but what scares me even more is the thought that my family would be without me. It's not that I think that they wouldn't be able to get through it, rather it is the thought that anything about me could cause them pain. I cried the whole time I wrote, thinking about the depths of my love for each of them. I recall writing to my daughter that she had my unsettled soul in her too - and with this uneasy spirit in her she would also witness some of the most astounding beauty in life. I wrote to my son, Teddy, to tell him who he was born with the easy going warm in his heart that his father possesses and how this warmth would be a comfort to all who knew him, but that he should be sure to take comfort in the warmth of others when he needed it. Of course, my words were, and are, more for my children when they are older and more mature - but they were the words that I long to say to them when they are grown, the words that I thought that they would need to hear from me - only I worried - because that's what I do - I worry - that something would go wrong and I wouldn't be able to be here when they were ready to hear these words. I still have the letter, safely tucked away in the hopes that there will never be a reason - at least not until they are old and gray themselves - to read it and I'll be able to tell them everything I think that they need to hear when they are older, and when they are ready to hear it.

My c-section was scheduled for the next day. We were due at the hospital at 9 am, at hoping that things would progress quickly and routinely. That night I kissed our two little ones goodnight, I prayed to God that he would continue to bless our family and I held my husband tight in our bed - the bed that I have come to know as our lifeboat in a sea of uncertainty.

Delivery Options

Daisy is my third child. Together, my husband and I have four children between us, Carter is 17 and a senior in high school, Zoe is 4 and is in her second and final year of preschool and Teddy, our blond haired, blue eyed boy is 2.

My pregnancy with Daisy was very normal, except that she didn't move much. In fact, it was the easiest of my pregnancies. I gained the least amount of weight of the three, and was the most active. I did become concerned about Daisy's lack of movement, and had multiple NST (Non Stress Tests) in my last trimester. I underwent all the typical tests, excluding an amnio. Tom was vocal about not wanting to risk the pregnancy by doing an amnio. I didn't even give it a thought, if he felt strongly about it then I wouldn't do it. I did undergo the first trimester screening, which measures the nucal fold at the back of the baby's neck. As a result, I went down to Sacramento twice in two weeks and was eventually told that my risk factors for having a child with certain identified chromosomal defects, such as Downs and Trisomy, was that of a 20 year old. Good enough for me, I thought. As a result, I worried very little.

As my due date came closer, I became more and more anxious to have our child. We didn't know the sex, but we all thought (I'm not sure why) that we were going to have a girl. During the last week of my pregnancy (week 40), we learned that Daisy was breech. She wasn't breech the week before, I think that I can recall the day that she flipped because there was a flurry of movement from her over a 4 hour period - such a flurry that I recall that I thought "At last, this child is really moving. Good, very good!" My midwife suspected a breech presentation and so over to hospital I walked, alone as my husband, Tom, was home with our children. The nurse placed the cool gel on my tummy and applied the ultrasound wand. She quickly found the heartbeat, and then proceeded to look for the head. She was quiet, and looked at me and said, "there's the head" - and clearly it wasn't in the correct position. I remember I felt disappointed, and a little alarmed. These types of things don't happen to me.

As I waited for my midwife to come over, I was placed on monitors to check the baby's heartrate. Everything was fine. Lisa, my midwife who also delivered both of my other children, was calming and sweet. She told me that we would attempt to flip the baby - a version is what it is called. We scheduled it for the following day and Lisa gave me tips on how to crawl around at home with my rear in the air to encourage this child to flip on her own. She also told me that my choices were to try to flip the baby, but I could attempt to deliver in the breech presentation - although this is not recommended. Given that I have a family that depends and relies on me, and knowing the dangers of delivery in the breech presentation, I decided that I couldn't and wouldn't risk it. If this dear child did not move back to the head down position, I knew that I would be faced with a C-section.

Let me say, this is the one fear that I have always had. With each pregnancy I have been fearful of needing a C-section. The thought of having my baby cut out from my body sent shivers of fear and dread through my body. I don't take medications, and pain medications particularly do a number of me. I had two natural births, with no pain medications. Teddy was induced, but still, I pushed him out into the world just as I had done with Zoe and I had planned to do the same with this child. I was looking forward to the experience, the joy of the accomplishment and holding my little baby in my arms afterwords, as the hormones from childbirth rushed through us both - cementing the bond that we had been establishing for the last nine months as the baby experienced my voice, my swaying body and my being. A C-section??? No, this is not at all what I planned on or wanted, but apparently was going to be a likely possibility.

The version was scheduled for the next day.

Introduction

Hello All -

This is my very first post. Why have I decided to become a "blogger"? It's all about my little Daisy. I want to share my experience with others to create some hope in others and to connect with the world.

Daisy was born July 24, 2008 at Enloe Hospital in Chico, California. Shortly after her birth she began having breathing problems and then was transported to UC Davis. Along the way, someone decided that she was a "possible trisomy 18". Trisomy 18 is, simply, incompatible with life. It's a death sentence. Well, today Daisy is almost 4 weeks old. She's sleeping on her father's chest at the moment, weighing 8 lbs. She tracks with her eyes, she moves her body, she cries and acts like a normal newborn. Is Daisy a trisomy 18? While the doctors cannot tell us for certain that she is not - I can tell you that every test to date has come back NORMAL.

This blog is about my experience with Daisy and will likely be about my life as a mother of 4, wife to a wonderful man, lawyer and creative cook. I hope you'll share my journey.