Teddy Gets Wet
The other day Carter was washing my car. (Part of his making restitution for "borrowing" it.) Little Teddy (2 yrs) thought it would be fun to climb into the wash bucket. Luckily I had my iphone handy to capture it.
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August 28, 2008
August 27, 2008
Godparents for Daisy
Today I am blogging from Porterville, California. One of my best clients is in the olive business and has interests in both the Sacramento Valley and down south in the San Joaquin Valley. He sat up front with me today for the two hour flight, and when his meeting is finished, I am slated to drop him off near Mt. Shasta where he will spend the weekend golfing.
Corey Amaro, who writes a very popular and beautiful blog called Tongue in Cheek (www.willows95988.typepad.com) came over last night to see Daisy. We have asked her to be Daisy’s godmother and she has graciously accepted. Her brother Mathew, my oldest and best friend, will be her godfather. Corey and her son Sasha, Corey’s Mother Dolores, and Mathew and his wife Shelly and their three kids all enjoyed a hot evening by the pool. Sara made vegetarian quiche with eggs from our chickens and tomatoes from our garden. Dolores and Corey both held Daisy and at times I was concerned there might be a tug-of-war!
Looks like we will be heading back out to Shelter Cove this weekend to escape the heat!
August 24, 2008
The "Car Thief" Holding Daisy
Zoe Trying On Carter's Helmet
Daisy's First Airplane Flight
We took our other kids on their first airplane ride at about three weeks old, so I guess Daisy was just a little behind, making her first flight at four weeks of age. I really thought it might be even longer, but Sara gave the green light. We spent the last weekend at our cabin in Shelter Cove. It’s about a 45 minute trip over the coast ranges to our airstrip-by-the-sea. The weather was gorgeous with lots of sunshine but cool coastal temps in the sixties.
A month or so ago I mentioned that a client of mine had been diagnosed with ovarian cancer. Well, she went through surgery last week, and thankfully the cancer was not as extensive as the doctors had previously judged. They called me up to transport them from Oakland back to their home in Mt. Shasta. I left Shelter Cove at 9:30 am, picked them up in Oakland at 11:00, had them in Mt. Shasta by 1:00, and was back in our cabin on the coast by 2:00 pm. I showed them both pictures of Daisy and we shared our stories.
When we got back home today, I found that my 17 year old, Carter, had taken my car without permission and driven all the gas out of it. He wanted to impress a young lady with a fancy BMW. Well, it took me all of 5 minutes to figure it out. Initial questioning led to a few half truths and omissions, but eventually he came clean. He will be gassing up and washing my car, and his cell phone will be in my possession for the next three days. It vibrates with a new text message at least once a minute.
August 20, 2008
Daisy Looking Cute
Stanford
Daisy's Sibs
I’m sitting here on the grass, shaded by a live oak tree, on the campus of Stanford University. I picked up a client at Lake Tahoe Airport this morning and brought him to Palo Alto, and now I have time to kill until it is time to take him back to Tahoe. So I rode my folding bike up the hill to Stanford. I had only ever been to the football stadium to watch Cal play Stanford in football, so I thought I’d check out the campus. Wow, is it beautiful, almost as beautiful as UC Berkeley. OK, so I am biased. I took a photo of the Stanford Memorial Church, a Spanish mission style building on a beautiful plaza. They have both Roman and Protestant services there.
Sara just called me to let me know that the final test result, a genetic test from a biopsy of Daisy’s skin, came back with “normal” results. Daisy saw her pediatrician today, and although very small for her age, she is doing just great.
In the interest of sibling fairness, I have a 17 year old son, Carter who is just beginning his senior year at Durham High School. He has been practicing football twice a day for the last couple of weeks and eating up everything in sight. He is truly a teen heartthrob. I’ll put in a photo one of these days.
Zoe, our four year old firecracker, is the spittin’ image of me in appearance, but she has her mother’s internal fire. Theodore (Teddy) is our happy-go-lucky two year old with baby blue eyes and blond hair. He has his mother’s soft features but his Daddy’s laid back attitude.
August 18, 2008
Daisy Update
We have received a few more test results. Daisy's genetic tests have all come back completely normal. This wasn't a big surprise because she has been doing so very well. She had some metabolic tests and muscle enzyme tests done and those as well came back normal. This is good as it means her risk of developing Muscular Distrophy is low. So, what is wrong with Daisy? As far as I'm concerned nothing. She is getting more and more alert and stronger every day. And she still seems to like my singing.
Today I flew to Visalia. Tomorrow Tahoe and Palo Alto. I'll try to remember to take some pictures.
August 13, 2008
Life Moves On
Though I haven't written about it, I have been doing a fair share of flying since getting Daisy home. I had a group of contractors needing to go to Alturas last week. They are bidding on a job to build a road for the Bureau of Land Management. Alturas is in the far Northeastern part of California, the seat of Modoc County. I brought along my folding bike to check out the town, since I had not been there before.
It's a tidy little town, but very quiet. The area seems to belong more to Oregon or Nevada than it does to California. US Highway 395 is the main street through town, so the main drag probably looks a lot like it did in the 1950's.
I also took a group of four people from Roseville out to Shelter Cove. They contacted me a couple months ago because they were invited to a wedding there and didn't want to make the 6 hour drive. I told them that if they flew with me I would let them stay at our Shelter Cove vacation home for free! They liked that idea very much and the deal was done.
Well, the day came and the coast was covered with fog. We arranged for an alternate landing at Garberville if necessary and set out in the afternoon. One of the men in the group kept asking me as we approached the coast if I could tell if we could make it in to the Shelter Cove Airfield, because all we could see of the ocean was a thick, white blanket. I told him that we wouldn't know for sure until we were directly above the airfield.
As we crossed the coastline just below the cove, there was no beach visible through the fog layer, but then, as if by magic, an opening in the fog formed just north of the airstrip and within a few minutes exposed the landing site. My passengers ooh'd and ahh'd as we descended into the cool, misty ocean air.
I picked them up a few days later under spectacular skies and no fog in sight. I don't think they really wanted to go back to the hot valley, but I had them back to Lincoln Airport in just over an hour.
August 08, 2008
Back Up to Her Birth Weight!
Daisy Gets Born (Part 3)
It's starting to feel like a million years ago now, but since my readership has increased so much due to Corey's faithful (and I do mean faithful) reader's interest, I will finish this tale. One thing I did not fully appreciate at the time was the emotional toll this experience was taking on my wife, Sara. As I write this, Daisy is now two weeks old and tomorrow she will have been home for one week. Anxiety attacks are becoming less frequent every day.
After learning that little Daisy was not a Full Trisomy 18 baby, then our concern was whether she had a partial Trisomy. The second, high definition, DNA tests came back on Friday, and that test also came back normal. Dr. Moggadan, the geneticist at the UCD NICU told us of a third, cutting edge test called micro-ray analysis which could look at Daisy's DNA in even more detail, but the results would take a couple weeks. She advised us to prepare for an "inconclusive" diagnosis. She also hypothesized that it could be another condition called "arthrogryposis" which mimics Trisomy 18 in infants but is muscular and joint related. Arthrogryposis is treatable through physical therapy. More hope:)
That same day we heard from the pediatric neuroligist, Dr. Chan, and she told us that Daisy's Brain MRI had come back normal. Even more hope. And then, to top off the day, Dr. Pleasure tried a bottle on Daisy and she miraculously (and I want to thank you for all the prayers) took down a full 55 ml feeding by mouth in 15 minutes. This from a girl who could barely suck at all!
That night our good friends Joey and Patty Hubbard stayed at our house with our kids and their own so that we could "room in" with Daisy at the hospital. We were tasked with feeding her every 3 hours through the night, and if she continued to bottle feed and didn't have any problems, she could go home the very next day!
The nurse brought in a bottle for her every three hours and she took her feedings well. We hadn't really heard her cry yet, but we were still very excited. We were discharged the next day.
Since coming home Daisy has been making amazing strides. She now wakes up and cries when she is hungry. She is back up to her original birthweight and beyond. Her suck gets stronger everyday and Sara is even able to breast feed a little bit. We are not sure what the future holds for our Daisy, but I guess that is true for our other three kids as well.
We are still awaiting the results of the third genetic test, but Dr. Moggadan has told us that because of the great strides Daisy is making, she is very doubtful that Daisy has any Trisomy 18 cells in her little body. What we will likely do now is just love her and raise her and watch her development. I think she is going to do just great.
This experience has changed me. I wouldn't say that I was ever one to take things for granted, but now I look into all my kids faces and really notice the miracle that they are. I love all my children as much as a father can, but this Daisy has pulled a heart string in me that has never been pulled before. I really can spend hours just holding her, rocking her and singing, and I think she likes it.
Thanks to all who prayed for us, who thought of us, who reached out to us through this time. I will not forget it. You have all helped change my life and I believe Daisy's as well.
August 05, 2008
Daisy Gets Born (Part 2)
After the initial elation of the negative genetic test, the question of what WAS the problem began to set in. The test showed she did not have a "full trisomy" but that didn't mean that a "partial trisomy' wasn't present. A full trisomy means every cell in the body is affected, whereas a partial, which is even more rare, is a percentage of cells affected. A more detailed genetic test would be finished in three days, so we waited.
Daisy was improving. She began to open her eyes and even track with them a little bit. Her breathing got better and the C-PAP was removed. We met with the doctors and social worker and they suggested we prepare for having a severely disabled or mentally retarded child. They made us aware of all the services which were available to "parents like us." In the meeting with the doctors, I asked what were the chances of her just getting a slow start, and that she might be able to pull out of it? They just sort of looked at each other and me and one said, "You never know with children."
We brought our 4 year old and 2 year old down to Sacramento, with a babysitter, to see Daisy. They got to go to the zoo and other fun stuff while we held Daisy. Zoe got a chance to hold Daisy, and I got a pretty good picture which is posted here.
Big Sister Zoe with Daisy
August 04, 2008
Daisy Being Taken Away
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. My wife Sara 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 Sara 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 Sara 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 Dr. Pleasure, 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 “Don’t Worry ‘Bout a Thing” 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 Dr. Pleasure 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 look like in 5 years?”
Dr. Pleasure then realized that I was not up to speed. She took my arm and said, ”Mr. Knowles, 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 Sara 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, “Tommy, what did the doctor say?”
As I got the words “Trisomy 18” out, that was all it took. Sara 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 Enloe 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 Sara 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 at Enloe had agreed to release Sara 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 Sara 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. Dr. Pleasure 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, Father Richard Yale 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 our friends Corey and Yann in the waiting area. Sara went in to see Daisy first, and I scrubbed up with our friends. I escorted our friends into the NICU and spotted Sara holding Daisy smiling and saying “It’s not Trisomy 18!” over and over. I broke down and we both cried tears of relief.
I will finish this story in my next entry.