little talk story

3/27/11 Sunday

Yesterday was a difficult day for both Jewel and us.
She was miserable, her hip was hurting a lot and she just wanted to cry and whine.
She did not want any part of stretching, stander and brace.
Being positive is critical especial when in pain, if we can distract her and help her get happier she relaxes and her over all well being flourishes.
Finally Raven and I stretched her legs and arms though she protested loudly. I made her wear her hip adductor brace and gave her calm water in the evening. Her high tone was causing her hips to spasm. She got some rest last night. Yesterday and Friday evening she did not get rest, she was tightly wound. She could not even enjoy her movie we rented for her, Nanny McPhee.
What do we do when we have days like these? We take turns being with Jewel, caring for her, distracting her, reading to her, playing with her, and sometimes this is not enough. We have to stay patient, calm and positive. Sometimes we have to let her cry, sympathize with her, and keep trying to get her out of this funk. Sometimes we to cry. Always praying. Jewel can be very emotionally expressive.

Jewel was a twin. I lost the other baby in the end of my first trimester. The hospital called it a "vanishing twin". I still had two placentas which made me bleed a lot. My pregnancy was full of fear. My eldest daughter was seven at the time. She was hoping to be a midwife or ob-gyn (Obstetrics and gynaecology) one day. Makena was reading a lot of nursing and midwifery books for her reading list. So at this young and tender age she knew this pregnancy was a high risk. I was medivact to Honolulu for preterm labour. I do not recommend the hospital I was sent to. It seems the medical liberties that are taken have more protective parameters in favor of the hospital and advancement of science than the patient does. This is the difference between implied and informed consent. I now know that you can refuse care, choose to be sent to another hospital, question everything, ask for someone to explain this in layman's language, refuse a nurse or doctor's care.
I now know that few in the medical world remember their oath to" do no harm".
There is a huge difference between a nurse or doctor who has a calling and passion verses those who do it as a job!
I have found out that you are treated differently because of your economic & social status,age,race,religion.
It may be better to be in a christian hospital where they value the life of the premature child.
When I went into labour we were advised that the hospital was not obligated to intervene with help since the birth would be so premature, by law she could be left to expire. President Bush changed this when he was in term.
The hospital I was in did not look at the NICU (neonatal intensive care unit) as a nursery, the children were not looked at as children because they were not full term, thus they were sick, just systems and functions. I am still angry at the abuse Jewel suffered by the hands of the Neonates.
Jewel was born vaginally, she was a dry birth since my sack had ruptured 10 days earlier. She had apgars of 6 & 7, she was 2 pounds 3 ouces and 19 centimeters long. She was perfect. She did her breathing transition on her own. She cried like a mix of baby lamb and baby kitten. She was tiny, my wedding band could fit over her foot, her skin was transparent, but it was obvious to us that she was fearfully and wonderfully made. These tiny baby's need a voice, someone to protect them.
I believe that I would have been treated better with a country vet caring for me and my child. I believe Jewel would have fared much better in the hands of a country vet. I have found that veterinarians are more compassionate and they have to go to school longer than a doctor.
When we complained about her care, were told that the NICU was a entity of its own and the hospital was not in control of it, the only solution was to sue them. Can you imagine what I felt when I was told this, I was already overwhelmed, one child in the incubator, the other two on the other island. I was watching over Jewel, pumping my milk, just wanting to go home and be a mom to my three daughters. I had no energy or resources for this.
For those who are strong enough to sue the hospital I encourage you to, for two reasons. One; you will need all the help for your child and it is expensive raising a special needs child. Almost all the equipment is astronomical and you want to get as much equipment and therapy that will help your child make gains, out of pocket costs drain your ability to stay afloat as a family. Two; Money talks in our society, when the hospital which is a business hurts financially, this is the pressure that we need to ensure that more of our children have voices and are not hurt & injured due to negligence, carelessness, and advancement of science. There are brave nurses who are willing to testify on behalf of a child, some rare advocated but they are there.
They would not give my milk to Jewel and in Hawaii you can not donate your breast milk to a milk bank.
So I just kept pumping to keep my milk in.

Then came an angel nurse; she helped me stimulate Jewel's checks to get a good attachment. She said not to watch the alarms and computers but just to watch Jewel. "Watch your baby Mom", she would coach me. "Get to know her skin colour and when it changes because of distress." Such practical advise, and it worked. I insisted on taking the ng tube(nasogastric tube is used for feeding) out and nursing her, even though the ng tube causes distress each time it is fed back into the nose, my goal was to nurse Jewel and we were going to try wholeheartedly. Those nurses who laughed at me; you suck! I got to nurse Jewel for four years! This sucking motion helps develop the muscles that will help with future eating and talking. All the nurses I met at the NICU were dead, except the one who helped me with nursing Jewel. They have lost their hearts and this makes them useless.
One of the best pieces of advice my mother in law gave me was," believe in God, believe in your self and believe in Jewel". To survive the NICU you will need these three. When Makena heard that I had gone into preterm labour she sobbed, for she knew this was not good. Makena and Raven have been the best big sister's to Jewel than you can imagine. Their faithfulness to our family has been epic, their faith is amazing. Makena is no longer interested in being a ob-gyn, she was so disturbed by the treatment of Jewel and I in the hospital. She now embraces her photography as a means of artistic expression and career. Both Makena and Raven could be a pediatric occupational therapist, physical therapist or speech pathologist, for they have been to almost every session and helped with continuing the new excises at home with Jewel. I am eternally grateful to them and their beautiful spirits. God has blessed me with three lovely daughters!