A little piece of heaven

A long time ago I started writing a book about my experiences with Nathan.  I do not know if I will ever finish it.  But for today’s post I wanted to share an excerpt.  This is the story of the day Nathan was born:

His due date arrived and I’d had no contractions, no signs of labor.

However, there was evidence that his head was growing too rapidly.  Hydrocephalus. Accummulation of fluid in the brain.  So that morning, the day of his due date, I decided it was time.  I had protected him in my body as long as I could.  Now it was possible that by keeping him in my body I might harm him.  The sooner he could come out, the sooner we could treat him for this new H word curse.

That day I knew that it was time. I was strong, peaceful. Ready.  As ready as I would ever be.

I called the doctor’s office at 9 am and arranged to go in for a C-section. By 10 am I arrived at the hospital. I was afraid, torn between wanting to run away and wanting them to hurry up, I wanted to meet him, I dreaded the possibility of his death.  It’s impossible to describe the myriad of emotions I felt that day as I arrived at the hospital.  Fear, hope, faith, a pain that loomed just beyond the faith.

Against the doctors’ advice I did not make funeral preparations.

Throughout that entire day I prayed. There was no other way I could pass the time.  Through hunger, thirst, tests, I prayed and prayed.  Doctor’s and nurses came in to ask questions, they took our vitals, they asked more questions.   Silence brought fear and I wasn’t strong enough for fear.  So I prayed to stay in the light.

30 min’s before I was scheduled to go into surgery, the neonatologist came into the room asking us about our wishes regarding resuscitation and death rites.  He wanted to know how far we were willing to go to keep our child alive.

Part of me screamed, “as far as you need to!”.  But another part of me did not want to play God.  What was most compassionate and loving?  Would it be cruel to go through every length to keep him with us? Would it cause him terrible pain?  Would it be more loving to let him go?  Or should I fight for him with everything available to us with modern technology?

Confused, I asked the neonatologist for his opinion. “If he lives, every moment of his life will be a struggle.  I would suggest you use a Do Not Resuscitate (DNR)  policy.  If he can’t breathe on his own, we can stimulate him slightly, pinch his feet, we can bag him, but if he can’t breathe on his own with this assistance, then just let him go.”

Would it be worse to have him live with tubes and assistance, or to let him die without help? It was the most difficult decision of my life.

But we followed the doctors advice and agreed to a policy of DNR. Today, I think of that with absolute horror.

Finally, the time had come.  I was wheeled into the operating room.  I had begged the doctor to let me bring an ipod so I could listen to prayers during the surgery.  Against his best judgement, he agreed.  I played the prayers for all to hear, so the doctors would be blessed, so my baby would be blessed the moment he came out of my womb, whether he lived or died.

Inside the operating room, I was given the epidural, and the wait began. It wasn’t more than an hour, but it felt like a year from the moment I had the epidural until I heard the doctor say, I see his head. Then I started shaking, and nearly lost consciousness. But I prayed and held on.

Moments later I heard what to this day is still the most glorious sound I have ever heard. My baby screaming. Owen was gripping my hands. “He’s alive, he’s crying, he’s breathing!”

The doctor pulled him out and they took him away to check his vitals.  He was breathing fine.  Quickly, they gave him to Owen, who brought him to me.   He had stopped crying. I touched the crown of his head with my lips. His eyes were dark brown and old as the depths of the ocean. Perfect.  My perfect son.  He was perfect, and he was alive.

There was a deep stillness about him.  Have you ever held your breath under water and looked up from the bottom of a pool? There is a deep deep silence and everything looks far away and you feel completely enveloped and embraced by a sense of tranquility. This was the stillness surrounding my Dorje. In those eyes I saw an extraordinary, special little being, wise beyond words, and absolutely beautiful.

It was a miracle. My baby was alive! Against all odds, he survived birth. He met the 3% challenge, and surpassed it.

The doctor left him in my arms and went outside to tell my family that he was alive. Shortly after he left, he came back into the operating room.

“What was his apgar score?”  There were over 20 doctors and nurses in the room, as they had expected a worst case scenario. They all looked at each other. There was such little expectation that he would survive, that nobody bothered to take his apgar score!  Owen and I had to laugh at this.  The doctor decided to make up a number.

I was wheeled into the recovery room, where Nathan was being bathed and changed into his first outfit.   Amidst the joy and incredulity that my baby had survived there was an unsettling feeling of fear.  Now what?  Will he stay alive?  Will he be able to regulate his temperature? Will he be able to breastfeed? Will he have seizures?

Clean and well wrapped, they brought him to me. The nurse warned me, saying “I’m sorry, I don’t know how this will go. It is possible that he will not be able to breastfeed. I will try to help you but be prepared for the fact that he may not be able to coordinate the sucking and swallowing motion.”

I held his face against my breast and shortly after I felt the strong suckle. Again, joy, relief, wonder.  He was doing it! He was breastfeeding! He had a strong rooting reflex and could coordinate swallowing! He had passed the next trial. I was holding the baby that was not supposed to live against my breast while he did something he was never supposed to do.  How wonderful!

After a little longer in the recovery room, they wheeled us to our room, which was full of family and friends, celebrating.  I was happy, exhausted, relieved.  My baby was alive.

At midnight, everyone left. Owen went to sleep in the extra bed, while I held the baby. I did not want to put him in his bassinet, could not bear the thought of being separated from him for even a second. What if he stopped breathing? What if he died and I wasn’t holding him?

All night that night I lay in bed awake, Dorje to my breast.  There was no milk yet, but I held him to my breast, hoping to nourish him.  Knowing the milk would soon come.

And my thoughts were rampant.  He’s alive. Now what? What kind of life will he have? Will he walk? Will he talk? Will he die before he’s one? Will he know me, laugh, learn, love? Are we going to go from surgery to surgery?

My faith had held me strong from the day of the diagnosis to the day of the birth, but in that long long night, I felt it seeping away while the weight of doubt rested in my arms. My faith had helped create the miracle. Why did I allow it to dissipate? Why did I start believing the doctors after they’d already been proven wrong?

I waited for daylight so people would come back and take me away from my thoughts, my fears. It was one of the longest nights of my life. I wish I’d gone to sleep.

I’ve had a stream of people asking me about G-therapy so I figured I’d dedicate my first post back home to this topic.

G-therapy was created by a homeopathic doctor in India specifically to treat conditions of the Central Nervous System.  Here’s an excerpt from Hulet Smith’s blog, who has worked with Dr. Oswal:

G-therapy is a homeopathic supplement made from a unique combination of herbals extracts in potentiated (homeopathic) form. The extracts are administered in small tablets known as “biochemical tissue salts” and are also referred to as “biochemic cell salts.”

Dr. Oswal is the Founder and Director of the Center for Life Sciences, Health, & Medicine in Pune, India. He works collaboratively with his daughter [Dr. Pooja Upasani] and son in law [Dr. Shreerang Upasani], both have bachelor’s degrees in Homoeopathic Medicine from Pune University.  Dr. Oswal is an Integrated Medical Graduate BAM&S from the University of Pune.

How Does It Work?
According to Dr. Oswal, “G-Therapy medication was developed over 25 years through research in Ayurveda and Homeopathy and when taken stimulates neurotransmitters and acts as a nerve growth factor. The body salts bring about the necessary changes in neurotransmission while the herbal extracts act as a catalyst”. The degree of improvements, however, depends upon the brain damage and patient response. Explains Dr. Oswal, “A unique combination of herbal extracts in potentised form and biochemical tissue salts are prescribed all together or, in certain cases, as individual components.”

Who can it help?

Dr. Oswal is the first to acknowledge that no one understands the exact mechanisms behind G-Therapy. “It is seen that a wide range of pathologies and physical and cognitive disorders are helped by G-therapy,” he noted. G-Therapy has been implemented in patients with a variety of diagnoses that include all types of cerebral palsy, congenital brain anomalies, hydrocephalus, ADHD, kernicterus, metabolic disorders with neurological complications, strokes, learning disabilities, intellectual disabilities, Down syndrome, Asperger’s syndrome, autism spectrum disorder, and many other forms of developmental disabilities.

Dr. Oswal explained that the degree of improvement in any given case cannot be predicted, and depends in part on the degree of initial disability. “G-therapy does not claim that it can make every spastic walk and the mentally retarded to achieve normal IQ,” he said. “It should also be noted that there is a definite number of patients who fail to respond positively to G-therapy. [However] G-therapy has shown persistent results…and it is up to the developed countries with modern amenities and electrophysiological studies available, to think, to test, and to verify the efficacy of G-therapy, so it can be made available to all the needy individuals.”

If you want to learn more, you can also visit Dr. Oswal’s site:  G-therapy.org

As for our experience with G-therapy.  We started giving it to Nathan about 2 months ago.  I noticed that within 2 days his muscle tone changed.  It seemed to normalize a little bit.  His extremities, which tend to be spastic, loosened up and he seemed less tight.   This is one thing I can definitely attribute to the Gtherapy.

Shortly after we started him on G we also started giving him some Chinese teas and a special Chinese herbal treatment, so unfortunately I cannot say what’s what.

But shortly after we started G and the Chinese treatment, we found Medek and were amazed at Nathan’s positive response to it.  Nathan’s never responded so well or quickly to any treatment.  I think this is in large part to Medek itself, but I also think that the G and possibly the Chinese treatment contributed to allowing his brain to create new neural pathways.  The changes that we saw with Medek were so fast that I would be amazed if it wasn’t a combination of these things.  You could almost see the new pathways being created.

He continues to gain strenght and improve with his Medek exercises.

Also, he has doing very well cognitively.  He now has a few words.  He seems to be trying to communicate more effectively – instead of whining when he wants something, he looks at us and trying to verbalize or use his eyes to tell us what he wants.  All of his therapists have been commenting that this is the best he’s ever been since they’ve known him – in all areas – fine motor, gross motor, speech, cognition.

Unfortunately I cannot isolate any one thing.  But my mother’s intuition tells me that G-therapy has been and will continue to be a key factor in Nathan’s growth and development.  In my heart and gut I know G-therapy is helping.

I’ve always believed that Nathan’s rehabilitation has to come both from the inside and the outside.  From the inside we are healing him with diet, supplements, G-therapy, and the Chinese teas.  From the outside, we continue with Medek and a little bit of ABR and other things like swim class, OT, ST, DT, and preschool classes.  We think that the “outside” therapies cannot work effectively unless the internal conditions are right, which is why we think the “inside” therapies are also important.

If you are interested in G-therapy for your child, the best way is to join the Gtherapy Yahoo group.  Then post that you are interested.  Unfortunately, the doctor will not mail G-therapy individually.  Parents on the group wait for one family to volunteer to go to India, then that family brings it back to whoever is interested.

The cost of G-therapy has changed a couple of times so it’s best to inquire about it directly with Dr. Oswal or ask on the Yahoo group.

Let me know if you have any more questions, I’ll be happy to do my best to answer!

I always joked that it would just figure if Nathan’s first word was a bad worth.    Today I can happily say – it happened!  I am happy because he can consistently say a word!  The word happens to be “nalga”, which means “butt” in English.

He says this word when we see my aunt.  He says “nalga” and she wiggles her butt for him.  Then he laughs and laughs and laughs.

I am ecstatic!

He also said “elmo” 3 times in a row the other day.  And I heard him say “yellow”.  Also, he looked at me drinking water, then said “agua”, and looked at the water.

Can you believe this?  My boy is starting to have words!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’ll leave you with this joyful news for a while.  I am going to a meditation retreat (by myself!) and will be back in the middle of next week.  I will not bring a computer and will do my best to not even touch a computer or a phone.

Until then – have a lovely week, enjoy memorial day, and lots of hugs and kisses to everyone!