We had so much anticipation at the upcoming birth of our lively baby girl. We had no idea how much she would change our life. Carrying Camille was exciting and beautiful. She was full of life and so was I. She was so active in the womb that I, (when thinking back to pregnancy with Jolie), was concerned. I would ponder, could I actually give birth to a more active, more driven child than her big sister?
Griff, (my husband), and I would sit and feel my belly, fascinated by all the baby action. She was throwing and thrusting her feet and elbows in every direction. She would move as to dance the tango, stepping and turning and spinning. Even when the rest of the family was sleeping she was busy dancing. Sometimes, in a moment or two of peaceful bliss she would softly snuggle into my womb.
I had been experiencing increasingly stronger contractions as my water broke in the evening of July 16th. Linda, our birth coach, came to the house to check my status. I was dilating, but had a long way to go. She returned home while my Mom, Jolie and Griff went to bed to get some well needed rest. I labored through the night.
Early in the morning I awoke Griff. It was time to make our way to the hospital. He woke up my Mom so she would watch Jolie, gathered our things and started the car. We loaded up, I on all fours on the back seat, and drove to Truckee. Maybe it was partly because Griff drives slowly when we are in a hurry or because of the tension which builds each moment while one is in a rush, but this drive has been the longest of my life on several occasions. The first was when Shashi, my husky Sheppard, of over 11 years took her final escort to the vet. The second was when I was in labor with Jolie and now Camille was on her way to the delivery room.
We arrived safe and sound, but as I began to crawl out of the car, clutching tightly to Griff’s elbow, he noticed a small amount of thick black secretion on the back of my robe. I was leaking meconium. We had heard about this and understood that this was an important sign, a natural warning that the baby was under stress. It is not uncommon, but obviously not the best. The baby must not have enjoyed the ride. We made our way to the maternity ward. I huddled over with labor pain and walked between contractions. I was only able to take few steps at a time down the seemingly endless corridor. I paused for intense pain, took deep breaths and took a few more steps.
Once settled in the delivery room with Griff and Linda, the nurse hooked me up to the strip, (a monitoring device which reads the baby’s general condition including the heart beat and rate of respiration). The nurse said that the baby was fine, no need to panic about the meconium.
The doctor came in to check my progress. He said that I had done a real good job of laboring at home and that I needed to continue laboring for a while. Griff fell into position behind me as I knelt on the floor. He applied pressure to my lower back to ease the back labor. He helped me with logistics like placing towels, wiping my sweat and mainly kept me calm and breathing deeply. Linda coached my body positions, encouraged my progress and interpreted the activities of the nurse, who never said much about what she was up to.
After another hour of hard labor, I felt ready. The baby was giving me all the signs, moving lower and lower, pressing, pushing. I couldn’t wait to see the baby. The Doctor returned and although I told him I was ready to push, he told the nurse, as if I were a horse at the stables “have her continue to labor, don’t push until I return to check her again”. In response Linda said “I would like him to have to experience labor just once so that he might be more compassionate”.
Linda and the nurse suggested that I labor in the birthing tub. The nurse went to see if it was available and returned with news that I could make my way in that direction. This was not an easy walk down the hall, but Griff and Linda held my shoulders in a rescue carry and delivered me there.
Once in the warm water, the pressures didn’t subside. As a mater of fact, they gained in intensity. The nurse was unable to get my readings, with the strip, while I was in the water. The urge to push had become overwhelming; this was not like anything I’d ever experienced. Not at all like laboring with Jolie. The contractions were deep, involuntary, uncontrollable muscle constrictions. I really wanted to push, but the nurse, Griff and Linda reminded me that although the doctor said not to push, mother knows best.
I could feel the baby moving down. I told them that the baby was coming. Linda called the nurse and told her we were headed back to the room. The nurse called the doctor from his office. Linda and Griff helped me get out of the tub and I hobble back to the bed.
Once I was back in bed, in a somewhat comfortable position, on my back. The pushing was irresistible, unbearable the baby was almost out I could feel it. Griff said “I see her head.”
I pushed with another contraction as the doctor came running into the room. He was across the street in his office. He jumped in his rolling chair and rolled between my legs. He got to me just in time, not a second too early. I pushed with one last effort and felt the baby pass into the world and into his hands. Griff said wow she has a lot of hair.” It was a beautiful moment, but as moments go, it didn’t last long.
She was not breathing on her own. The nurse called for help, another doctor ran frantically into the room and the look on Griff’s face was like nothing I had ever seen. Our little girl was dying before our eyes. They worked in a panic to get her to breath. The tension in that room was so tight wired. There was clearly a problem and the doctors were stressed out. Dr. Arth called for a gurney and when it didn’t arrive quickly picked her up and ran to the nursery in an effort to get her to the respirator. Griff ran after him and the room suddenly became more quite.
Linda stayed with me and the doctor as he worked to induce the passing of the placenta. Linda and he repeatedly assured me that things were going to be okay and that they would get an update soon. At this point I had no idea what had actually happened. I had heard about babies that couldn’t breathe at birth, but never knew what it meant. I still thought that in a few minutes things would stabilize. In my mind I envisioned the three of us cuddling with Camille on my breast, warm and smiling.
In the nursery, it took 3 doctors 5 different attempts as they hurriedly tried to hold her little mouth open and shove the tube down her throat. One doctor would use the manual respirator to raise her oxygen level, and then pull away while another would try to place the tube. Griff reported the environment of shear panic and confusion. Finally a respiratory specialist showed up to get the job done.
Once on the respirator Dr. Arth told Griff that Camille would need to be transported to Reno. Griff came to my side with tears to tell me I could come in the nursery to see her. I could never have been prepared for what I saw. Camille was naked on a stainless heat table, with several lines piercing her belly button, wrist and her mouth. She had come to life and was moving her head desperately from side to side.
I reached out and she latched her tiny, leathery but soft hand onto my finger…little did I know that this would be the last time I would be allowed to touch her for over a week.
The transport team arrived within the hour. This team of 4 mobile neonatal doctors moved like a SWAT team. Dressed in one-piece flight suits they quickly took the scene over from the maternity doctors. No time for questions or explanations. They brought with them a mobile apothecary of drugs, a life support system and a mobile incubator. They were keeping Camille alive but needed to move quickly. We split responsibilities, as we often do, Griff stayed with Camille while the doctors prepped me for an immediate release, (I was only in the hospital for 5 hours). The lead transport doctor, Debbie, gained my signature, the purpose for which there was no time to read. I think it meant there were risks in transport. She gave us a phone number to call and Griff pleaded with her to take his cell phone number, promised not to follow the ambulance and they loaded Camille into the transport container and rushed off towards Reno.
She was transferred to Renown Medical Center, to the neonatal intensive care unit, (NICU). and put on a ventilator to help her breathe. Her 1st day in NICU, she had seizures for a couple days and her brain was swelling. She was given doses of medications, including medication for blood pressure and antibiotics. She was put on EEG to monitor the seizures and then in a few days her belly started to swell. It took eight days for oxygen and gas levels to be stable enough to take her off the ventilator. That is the first day I got to hold our baby!
At this point we wish we had taken the time to communicate with our friends and family more about our crisis. We were confused, felt inadequate and frankly, we thought it would be over once we got her home. I guess we thought we could endure the pain while keeping life “normal”.
After an MRI of her brain, we had a very positive meeting with the Neurologist, he said her brain looked “OK”, he didn’t expect any big developmental delays. But he did put her on Phenobarbital a precautionary drug for the seizures and said to visit him in 3 months.
Then it came feeding time, it took 36 hours of feeding her breast milk via tube for her digestive system to start working. After another week, we were able to feed Camille her needed milk via bottle! 16 Days after birth we were able to take Camille home!
We should have taken the Neurologists comments with a grain of salt because at 3 months old, she was diagnosed with microcephaly, (small head circumference). The doctor said that she will have developemental delays and possibly cerebral palsy and that she would be mildly retarded at best. The microcephaly and other symptoms are a result of her lack of oxygen (hypoxia) at birth.
Fortunately, at 3 months the seizures stopped so she could start to be weaned off of the Phenobarbital. It would be 6 weeks until she would be completely off the medication. The 1st day we reduced her medication was the first day that she started to actively look around, it was the first day she seemed to notice people and her toys. It seemed that Camille was not developing, at all, while she was on the medication. Now, she was coming alive again.
We were admitted into the early intervention programs of California which include a physical therapist, occupational therapist, speech therapist and an infant specialist. We had been seeing each one of them for 1 hour a week. In addition, we underwent hyperbaric oxygen therapy (HBOT) and cranial sacral therapy (CST). Camille and I did 40, 1hour HBOT sessions in Reno that took 2 months to complete. The CST was two 1 hour sessions a week which is to help the scull bones open to optimize her brain growth.
We are continually seeking out the best treatment and feel that there must be more we can do. Griff contacted the CST www.upledgerclinic.com and an HBOT center, both which are in Florida and that is what lead us here. We originally planned a 1 week trip for 3 days of intensive CST therapy and a visit to the nation’s leading HBOT center www.oceanhbo.com.
In addition to the 2 therapies we have discovered a physical therapy center which is amazing Therapies4kids. Camille has a therapist named Cheryl who is most great for her. Camille trains with her 2 hours each day in addition to the other therapies, including speech.
She is progressing and although she is about 4 months behind on her physical milestones, each day she is doing more “baby tricks”, as Griff calls them. She has started to reach and grasp toys. She is holding her head up for longer periods of time. She has begun to roll and positions well on her left side once she gets on her tummy. She is beautiful, has a full head of curly black hair, smiles a lot and responds with laughter when we play with her. She has come a long way in a short time. She has a long way to go and she will have to work hard for each development milestone.
It has taken quite a while for us to accept it, but we need to live here, in Florida, for a while so that we can give Camille the best possible care. Even Rita, her infant specialist at home thinks we are blessed to have found this level of care and fortunate that we are able to provide it to her despite the fact that insurance doesn’t pay for any of it.
At this point, her therapists think that the first 4 years of life are the most important time to work with her. We aren’t quite ready to commit to the Florida lifestyle for that long, but we are realizing we need to make a home somewhere, and Tahoe isn’t the place. We haven’t quite figured out what this means yet, especially since we are so home sick. We are still trying to figure out when we can get home for a while and if we can return in a way that won’t be counter productive to Camille’s improvement.
We miss so many things about being at home with our friends in the mountains, but we are convinced that this is the right thing to do at this time. Thank each of you for all your support and for your sticking with us through these trying times. Ironically, this experience has enriched our lives in so many ways and made us a stronger, more loving family.
All our love,
The Griffins
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