Olivia had an appointment with her pediatrician today to discuss why she has completely fallen off her growth curve. At this point, we aren't doing any aggressive treatment, but are needing to really boost calories. While we were there I was told something I have known ALL of Olivia's life.
She has severe anxiety and ADHD. This is very common in extremely premature children, well, even in those born before 37 weeks show a greater percentage of it. Here is just an example of her anxiety:
While there, the doctor asked me if her feeding therapist had suggested doing a "calorie count" on her. Olivia broke into sobbing tears," A calorie count?? I don't want to have that!! No!!!" And we had to talk her back down and explain that it is just something I write down on a piece of paper. Things like this happen multiple times a day and you really have to watch how you word things around her. And she is still sleeping in a tent at night. You know how most of us can't sleep with our legs outside the covers because it makes us feel unsafe for some reason? Who knows why we feel safer under the covers, but security is what the tent provides. Her doctor laughed," So, tent it is!"
Anyway, our challenge is to address her lack of weight gain in a way that doesn't increase anxiety. She may be deficient in growth hormones (which is common in preemies) but that would result in growth hormone shots daily which she wouldn't tolerate. Honestly, she would probably have to be sedated for even a blood draw. It may just be that she is not taking in enough calories, especially for her level of activity. So I have got to really try to boost her calorie intake without forcing her to eat anything. That's tougher than it sounds. And, Olivia is being prescribed an antihistamine that is also an appetite stimulant which will help calm her down as well. Maybe it will be one thing that helps all three issues? I can only pray. And pray and pray and pray.
We have come so far and are so blessed with how well Olivia is doing. Words can't describe how amazing she is! I always knew that there would be lingering issues to address and I just pray that I handle them with the grace and wisdom that only God can provide.
Olivia's feeding therapy is going well. She is working on taking smaller bites and swallowing things completely before taking another bite. This week we have various food to try and Olivia colors them in after trying and then rates them with a happy or sad face. Her therapist is happy with her willingness to try new food, but perplexed by the small amount that makes her full. And, even when she seems to eat a lot, her weight still doesn't reflect that. We are back down to 31.5 lbs. This is where we were a year ago. So, we go to see her pediatrician on Wednesday to see what the next steps are. Most likely it will be to see a pediatric gastroenterologist at Children's Mercy in Kansas City. I just want to get it all done before kindergarten and we are quickly running out of time! Even in the best of circumstances, you can never seem to completely outrun the effects of extreme prematurity.
I have started making all of Abigail's food in hopes to also get Olivia to eat it. Olivia is more apt to try it if she helps me make it and it doesn't come from the baby food aisle. LOL! We made sweet potatoes last night and I put Olivia's in a fancy cup with cinnamon sprinkled on top. And she didn't like it. But, she said," Even though I don't like it, mama, I still love you!" :-). Sweet girl. Abigail on the other hand, will eat anything! And if she sees you eating, you'd better have something for her to eat too. My two girls could not be more opposite when it comes to food! Please continue praying for Olivia's health and growth. We have got to get some pounds on her!
I unexpectedly gave birth at 23 weeks to micro-preemie twins on August 27, 2007. Olivia Paige weighed just 1 lb 1.5 oz and was 11.5 inches long. Logan William weighed just 1 lb 1.75 oz and was 11.5 inches long. Our sweet Logan passed away after 1 month and 1 day. After 105 days, we were able to bring Olivia home. She is our miracle, our survivor, our joy. . .
On November 20, 2012 we welcomed little sister, Abigail, into our lives. She was born at 35 weeks, but only spent 8 days in the hospital before coming home. We feel very blessed. To contact Ryan and Jodi you may email them at: email@example.com or firstname.lastname@example.org
You were the perfect little boy Of whom we always dreamed. Did you know we had your name picked out? All along or so it seemed.
You even had your daddy’s hands So miniature in size. In life we never got to hold you Or even see your opened eyes.
We had so many plans for you. Did you know you are a twin? I wanted you to grow up together. What a pair you would have been!
I wanted to take you to the park And push you on the swing. I wanted to teach you how to walk, And read and write and sing.
I wanted to show you a fire truck And let you ride upon a horse. I wanted to take you to the zoo To see the giraffes, of course.
I wanted you to watch cartoons And play video games with dad. And you and I would take a nap Oh, the times we would have had.
But, your mommy’s plans were not to be. “I have other plans,” God said. “You won't be playing in life’s playground You’ll be playing in heaven instead.”
And although I ache with sadness And in my arms I long to hold. I’ll see you again in heaven When my story on earth’s been told.
A thousand tiny fireflies Parading through the night Illuminate the starless skies With incandescent light They are miracles, here on earth So bold, so strong, so wise And bring to life a sense of worth For those who lack great size.
Some of this life’s smaller treasures Are the ones which matter more Than the larger joys and pleasures That we have grown to adore Volume is not as essential As the gift that lies inside Smaller souls with much potential Who shall never be denied.
A thousand tiny fireflies Parading through the night Illuminate the starless skies With incandescent light These children, while born premature Are testaments of worth Their spirits bold, their futures sure To ever bless the earth.