Practice Hope
Encourage, Educate, Equip
Pain
[ payn ] 1. unpleasant physical sensation: the acutely unpleasant physical discomfort experienced by somebody who is violently struck, injured, or ill
2. feeling of discomfort: a sensation of pain in a particular part of the body
3. emotional distress: severe emotional or mental distress
It is a humorous thing to my husband and others, that I am not able to handle pain at all. At the first sign of blood, I usually throw up or pass out. That is why it amazed them that I wanted to have a drug-free delivery. My husband just smiled and humored me. He knew that I would not make it past an hour without drugs. Well, he was right!
My contractions were horribly long and awful! I am sure that veteran birth mothers would find it nothing at all. The nurse said she would give me something to help me manage the pain. We were thinking something like extra strength tylenol. Actually, she injected morphine into the IV and then ten minutes later injected another dose. I passed out cold. When I awoke to be admitted, the labor had stopped. We were worried about the baby and why the morphine had stopped my labor. After a conversation, the OB on call decided to administer pitocin. It was only three days before my due date.
A couple hours later, my water was broken, and I requested an epidural. My dialation went from 2 to 10cm very quickly. Our baby’s heart rate dropped and nurses rushed in. I amazingly pushed her out in only a couple pushes. We were going to meet our baby! But, that did not happen. Our baby girl was slow to respond to resuscitation and had decreased muscle tone. Her apgar scores were 6 and then 8. Nurses scurried, a neonatologist was called, she needed oxygen, and was then taken to an intermediate care nursery. I sent Darrin with her and watched them exit the room. My body hurt, my heart hurt, and I was so confused. I was supposed to be holding my baby on my chest, cooing over her beauty. Our little Piper Amanda was finally here but not with me.
That night was very traumatic. Nurses continued to force me to try and nurse her. Piper could hardly suck and would scream as I tried to feed her. She also made a loud vibrating sound as she breathed. Later I was told it was called strydor. I could not feed my baby or comfort her. The breast pump was introduced to me. It became a close friend, because it was the only way I could feed my girl.
Piper had fluid in her lungs, thought to be pneumonia or aspiration, and the doctors started antibiotics. We had to put our little girl through a broncoscopy to determine why her lungs were filling with fluid. She was diagnosed to have laryngomalacia. Her larynx was floppy and did not cover her windpipe when she drank. The milk would go straight into her lungs and turn into pneumonia. This meant she needed to have a nasogastric tube. So now she had a tube up her nose in addition to a heart rate monitor, oxygen monitor, and an IV. The IV happened to be in her head because the other places on her body would not allow it.
Doctors were still unsure of what was wrong with her. An echocardiogram was done, because in her chest x-ray the heart looked abnormally shaped. Some nurses thought they saw seizure activity, so ordered an EEG. All came back normal. I look back at my journal from this time and see that my heart felt like it was being ripped out. My daughter had tubes shoved down her throat into the lungs, needles poking everywhere to find a vein, and the insesant beep of the oxygen monitor yet I could not stop any of it. I could not fix it. I could not save her.
We finally were released after seventeen days. Seventeen days of visiting the hospital and praying we could bring our girl home. So we headed home with the apnea monitor, extra nasogastric tubes, tape to adhere the tube to her face, and bags to put my milk in to gravity feed her through the tube. We were so happy!
My husband still cringes when he hears a whirring sound like the breast pump. I was surprised I did not wear the motor out. It was pumping many hours in the day. Piper’s feeding times were a challenge. I would pump for 20-30 minutes, then put the milk into a bag that looked like an IV bag, hung it on a pole, and then let gravity do its work to feed our girl through her ng tube. That would take another 30-45 minutes. Then we would start all over again in a few hours.
A developmental nurse was to come to our house and check Piper’s progress in a few weeks. That was the only help the hospital offered. We were sent home feeling scared about how to care for our baby. Being a teacher, pictures of bullies, teasing, and special education classes were in my nightmares. How could they send us home so unprepared? Where was my lesson plan? Where was my list to check off of things to do for her?
That nurse did come, and noticed that Piper had gotten floppier. Her head always tilted to the left, and that side of her head had become flat. I explained that Piper would not look at me. She did not respond to faces or toys in front of her. We were sent to a pediatric opthamologist. He diagnosed Piper with Cortical Visual Impairment. There was nothing structurally wrong with her eyes, but the pathway from the eye to the cortex in her brain was blocked. The doctor gave me a script that changed our life. On it he had written the phone number for the Foundation for Blind Children. My body seemed to implode with pain. How could she survive? It was already bad enough that she could not drink on her own, could not hold her head up, but now she was also blind. God please help me to understand why this was happening I prayed.
After a week or so of wallowing, I made a phone call. It was one of the best phone calls I have ever made. A woman from the foundation came out to evaluate Piper. She set us up with an Early Invention Therapist that came to the house once a week. We were able to go to the foundation on Fridays for music time and a parent support group. This was the lesson plan I needed, the steps to follow, and a huge blessing. I was able to get her physical therapy, feeding therapy, and occupational therapy. They taught me how to apply to the Department of Developmental Disabilites (DDD) to receive these services and help pay for the many doctor appointments. I made some good friends and saw there were other families struggling in similar situations.
My maternity leave from teaching had to be extended a month. Piper was not ready to be left with my mom yet. During that time, we were working to get Piper off of the ng tube. She had a Modified Barium Swallow at four months that showed she was controlling her swallows better. If we wanted to get rid of the tube, we had to sit her in her carrier at an exact angle, use thickener, a special nipple, and regulate her swallows. We agreed!
So, I went back to work full time along with my friend – the breast pump. I officially felt like a cow. But I felt thankful that I was able to produce so much milk. My mother was fabulous and watched Piper during the day. Grams, as we call her, helped with Piper’s many therapies and intricate feedings. She accompanied me to doctor visits, held me when I cried, and kept me from having a nervous breakdown. While praying for Piper, God let her know that Piper is our little tortuga (turtle in Spanish). Her race would be slow and steady, but she would finish the race. My mom repeats this to me over and over. She stands by it and has a strong faith that it is true.
There is a fabulous poem called “Welcome to Holland” that I think everyone should read. It summarizes the excitement of preparing for a child, and the pain of that child being different than expected. As a parent you want the world for you little ones. Sometimes they are not capable to handle the world. Or rather, the world is not tolerant enough to handle them. We adore Piper and would never wish for someone different. But we also grieve that there are experiences she will never have, traditions that will never be, and communication between us that will never be easy. She may have to live with us for the rest of her life. So we will give her a life that is happy, loving, and safe. She is our Holland.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place.
It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things …about Holland.
Lord, thank you for having our plane land in Holland. Piper is a gift and a joy every day. Yes, I am tired most days from waking early and meeting her self-care needs. No, I do not feel anger toward her for this. You gave me this pearl to care for and treasure. Please help me to always remember the pearl she is amidst the sand and struggle.
Practice Hope 
Jennifer, “a diamond is a lump of coal made beautiful under great pressure.” You, my lovely friend, are a diamond, shining so brilliantly and beautifully. You are a flesh and blood example of the love and power and grace and compassion of God. You amaze me.
You have a beautiful and precious Pearl Of A Girl in Piper. May your family experience deep and joyful blessings and miracles this Christmas season.
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Thank you Jill. I remember watching you endure pressure when I was a young girl. You made an impression on me and helped to guide my path in God.
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