The following entry was made on August 4, 2008. This was the first entry made after Daisy's birth on July 24th, and this photo was taken on her birhday as she was carted away to the NICU at a larger hospital in Sacramento.
The entry is entitled:
Daisy Gets Born (Part 1)
Obviously I didn’t write more in a few hours, as I promised in my last entry. You see, things really took a turn after that, and I am finally finding the will to write about it.
Daisy was brought in to the world just after my last writing, and at first she seemed to be a pretty normal newborn. After a few hours, her respiratory system was not keeping up very well. AW was pretty much out of it after the c-section, so I monitored Daisy’s progress in the nursery.
That evening the doctor got more concerned and ordered a heart ultrasound. I went home to get our other kids into bed. It was then that AW called, very upset, to tell me Daisy was to be taken to UC Davis Medical Center immediately. I jetted back so that we could watch a NICU transport team prep her for the trip.
I took a photo of her as she was rolled out of Enloe Hospital. In the photo, she is peering through the plastic back at me as if to say, “Help”.
The next morning I drove down to Sacramento to see her, after picking up some freshly pumped breast milk from AW in her Chico hospital bed. I found the Neonatal ICU, and Daisy, lying pretty much comatose on her little bed. I was still thinking that this was all a big mistake and that she would be fine.
The nurse didn’t want to tell me much, just to wait for the attending neonatologist. I asked if I could hold her, and the nurse seemed a bit surprised but agreed. I held her and rocked her and sang “Three Little Birds” to her over and over until the doctor came. I had this overwhelming feeling that if we could just get her into the arms of her mommy she would be all right.
Finally the Doctor came in. She was short and grandmotherly, with coke bottle glasses. She told me that Daisy had several of the physical traits consistent with a genetic disorder called Trisomy 18. I asked her to point out the traits to me. She showed me a reference book with photos and descriptions. I wasn’t really convinced, as these babies in the book were much more deformed than Daisy.
I asked the doctor, “Ok, so if she has Trisomy 18, how will she grow?”
She said, “She won’t grow well at all.”
Not getting it, I pushed, “Like, what will she be like in 5 years?”
She then realized that I was not up to speed. She took my arm and said, ”Sir, Trisomy 18 babies rarely see their first birthday; most never even survive to be born.” I felt my knees weaken and tears filled my eyes and all I could say was “Oh, dear God.”
The doctor then explained that the initial genetic test was due back in 4 or 5 days, and until then we would hope for the best. I had spoken with AW earlier and had agreed to call her after talking to the doctor. But I wasn’t prepared to tell her this. Still dazed, I picked up the phone and dialed her number.
I hesitated when she answered. She asked, “What did the doctor say?” As I got the words “Trisomy 18” out, that was all it took. AW knew exactly what that meant. As she went hysterical over the telephone line in her hospital room, tears were streaking down my face as I tried to calm her. All the while the nurse, the doctor and another family in the NICU were watching me, feeling awful.
That night I took the kids into our local Hospital to visit their poor mommy. We put on our best face for them, but inside we were both dying. I took then home to bed, leaving poor AW alone in that hospital bed to think of her Daisy as she heard other new babies cry in their mommy’s arms.
The next day was Saturday, and the staff had agreed to release AW a day early. I picked her up from the Labor and Delivery area, with sad, sympathetic looks from all the nurses. We could hear newborn babies crying as we passed by other rooms, but we were leaving distraught and empty handed. As we took the car from the valet, the young lady smiled and asked if we had had a baby. I just looked at her with tears and said yes. I think she figured it out.
As sore as AW was, we both knew that we needed to get down to Daisy as soon as possible. Leaving our other children at home, we made the journey on Sunday morning.
When we arrived, Daisy didn’t look well at all. She now had what they called a C-PAP over her nose and a feeding tube down her throat. All the wires and tubes made it difficult to hold her, but we took turns holding, singing and talking to her through our tears.
It became evident to us that she was fading away. We asked the nurse to take off the C-PAP for a few minutes, and Daisy’s oxygen saturation plummeted within 30 seconds. The doctor came to talk to us. We asked her what most parents in our position have done. As we expected, many parents choose to disconnect and let their baby die. We told her we wanted to take her home with us, but the doctor warned us that if we did, Daisy would not likely make the trip home alive.
We talked about it all the way home, and decided that if the test results on Tuesday were positive for Trisomy 18, that we would have her baptized and let her go. On Monday we contacted our priest, and he agreed to cut his vacation short to baptize Daisy. We tearfully contacted our families with the news, and I even called a funeral home.
On Tuesday we drove down again to hold her and receive the test results we had been dreading. When we arrived we were pleased and surprised to find some close friends in the waiting area. AW went in to see Daisy first, and I scrubbed up with our friends. I escorted our friends into the NICU and spotted AW holding Daisy, smiling and saying “It’s not Trisomy 18!” over and over. I broke down and we both cried tears of relief.
