Sunday, November 11, 2007
Hopefully, that will be changing soon. We bought a laptop for our other children to use to do their schoolwork, so maybe I will get my computer time back. I have also met several more moms with special kids, and that has motivated me to get back to work on this blog.
Today, I spent several hours researching what is called "blenderized feeding". The idea is that tube-fed children can be fed real foods and not just commercial formulas. I have posted links to the 2 sites I found to be most helpful in the Resources section to the right.
We tried to do a blenderized feeding today. I had tried it in the past without much success. The MicKey extension that we use to feed Stephen his formula was just too small for a bolus feeding. Also, I was using olive oil to grease the syringe. Today, I used the bolus extension, which is a bigger tube, and liquid soy lecithin to lube up the syringe. Administering was like night and day. It was so much smoother. Unfortunately, I gave him too much, too fast, and too soon after his last formula feeding. He threw every bit of it up. Yuk. I am not giving up though. Patience is the key with this. I may also cut back to just oatmeal and rice milk for the bolus.
I have also started a spread sheet to measure his nutrition intake. The first page lists each item we give him including supplements and water each day. The second is a caloric chart for the foods we intend to feed him. Since we are pureeing (like babyfood) his grains, veggies, fruit, etc., we calculated them by 1 oz. cubes. More on that in another post. The third page is a list of daily food intake requirements for his age. Some of the information came from the government's new food pyramid, and some came from the Kids with Tubes site in their letter regarding Nutrition for the Tube-Fed Child.
It is hard enough to make sure our typical kids are getting proper nutrition. And it can be agonizing trying to do the same for our special kids when we don't want to rely on commercial formulas. Help is out there, and we can do this. The most important thing we need to give these little blessings is love.
Tuesday, September 25, 2007
I never imagined how painful it would be to lose a child, let alone two of them.
We had been planning for months, making charts & measuring temperatures and fluids, yuk, with the hope of conceiving in October of 2001. Yep, I had it all planned out, the first 2 kids were 2 years apart, #3 would be four years later, and then 2 years more for #4. We did everything according to plan, but the stick said "not pregnant". I cried as if I had lost something. A few weeks later, after my normal cycle came, I suddenly started bleeding again. By the end of the day, I could feel that I was in labor. After going to my Dr. for a blood test, I got the news. I was pregnant, but I was probably having a miscarriage. No! I WANT this baby! My first taste of agony. A couple of weeks later I went for a follow-up with an OBGYN where they did another blood test. That night I began bleeding and cramping again. Two days later, the day before Thanksgiving, I learned that not only was I STILL pregnant, but it was ectopic and had ruptured. I was bleeding to death. Obviously, I survived, but had lost my right fallopian tube thus decreasing my chances of having more children. I mourned that loss, too.
Over the next few years, we continued to try to get pregnant, but to no avail. At least not until January 2004. As the little plus sign appeared, I fell to my knees crying and praying at the same time. My gift had finally arrived. We told everyone who would listen. One week before my test, a very dear friend had gotten the same news. Our kids were due 1 day apart. Excitement was in the air, for a while.
It didn't take long for the morning sickness to start, but it seemed to get worse every day. Nothing stayed down, and I lost 25 pounds quickly. Not a weight loss program I would recommend. Something was very wrong. Everything aggravated me. Not your normal run-of-the-mill hormonal aggravation, but the mega hypersensitive stuff. All food tasted and smelled awful, not to mention my husband. ;-) The sound of neighbor dogs barking, my kids playing, even the birds chirping sent me into a rage. And God had intentionally created the sun to set in the West JUST TO MAKE ME MAD!! The scariest part was the day I found myself wanting it to be over.
I finally found an OBGYN that would treat me despite the fact that I had already hired a midwife. I started taking medicine that seemed to help with the morning sickness, but it was too late. At my next appointment, I was 16 weeks pregnant. The doctor had the ultrasound machine in the exam room, and I was so excited to see my baby again. But as the doctor looked at him, he kept mumbling, "hmm." I looked at the screen and saw what he was looking for. I willed the picture to show movement, but it just wasn't there. Its heart wasn't pumping. I thought, "This can't be happening." A level 2 ultrasound confirmed that there was no blood flow in the baby's body. How would I tell my kids who were waiting in the lobby? What would I tell my husband? How would we break the news to family and friends? I was numb.
Everything happened so fast after that. I had to decide whether to induce labor in the hospital or let nature take it course. I had to decide what tests I wanted them to run on myself and the baby to see if they could figure out what went wrong. I made funeral arrangements... Funeral Arrangements!! It was surreal. I went to the hospital because I needed to see him, and hold him. I had to know what happened and maybe find out why. They told me I didn't have to feel any of the pain from the contractions, but I wanted to. Strangely, it helped. On Saturday, April 17, 2004, Philip Thomas's body left mine. He weighed 1.5 ounces and was 5 inches long. He looked like a little alien with all ten toes and ten fingers, a tiny nose, mouth and ears, and very dark skin. You see, their skin is still so thin at that stage that you can see through it. His head was flat because the bones in his body were still soft like cartilage. He was perfect. I was still numb.
We buried him in another state in the same cemetery as my grandparents. I like to imagine that my granddad takes him fishing and that Grandmother rocks him in her lap. Knowing that he is already in heaven does bring me tremendous peace. But I think about him every day. Especially tonight. If he had been born on his due date, he would be turning 3 tomorrow.
The irony in this story is what happened next. Just 3 months after losing Philip, I was pregnant again. I hadn't even reached Philip's due date. Talk about perspective. Little did I know that 6 short months later my life would change forever. On February 5, 2005, at 28 weeks pregnant, I "landed in Holland" with the birth of Stephen. But that is a tale for another day.
Losing a child is never ever easy. My children asked me recently when we visited Philip's grave, why he had to die. I told them that I didn't know why, but that I was grateful. I truly believe that suffering that kind of loss prepared me for the real journey that I was about to take. It gave me the strength that I would need for the long fight ahead.
If you have lost a child, you understand, and I send you a huge hug. The bond isn't broken, just extended upward. I pray that at some point you can find peace. If you haven't lost a child, take the time to hug the ones around you and recognize them for the little miracles that they are. And when anyone you know loses a child, don't try to make them feel better by pointing out the great things in their life. Just wrap your arms around them, tell them you love them, and let them grieve for a while. They will make it through.
Welcome to Stephen's world. It is a place full of wonder and curiosities. There is laughter, joy, and awe on some days, and fear, pain, and bewilderment on others. One thing you will always find is love. The kind of love that just can't be explained. Some people don't understand it, but maybe by stepping into this amazing world, they will learn to appreciate the unspoken love given by a special needs child.
My dreams for the future of this site are to create a place where families can come to find resources, encouragement, and maybe a little perspective on their situation. Feel free to share ideas, but please don't be offended if I don't use all of them. I look forward to seeing how this site evolves over time.
I credit the inspiration for my title to Emily Perl Kingsley. I won't go into all of the details about her, but I highly recommend reading about her on Wikipedia. Now I would like to share the story she wrote back in 1987.
Thank you Emily for explaining our plight so eloquently.
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 that 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 guide books. 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.