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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Friday, February 11, 2011

A doctor's visit

Today Lilly had an appointment with Dr. P, a pediatrician specializing in child genetics. While waiting for the doctor, we had the pleasure of introducing Lilly to D., the genetic counselor who discussed the results of my amnio with us. (She's been following Lilly's progress on the blog which I think is neat!)

Ever since Lilly was refused treatment last year because of her Trisomy 18, I tend to be very wary of doctors. Even when we were taking Lilly to the hospital this last time, I was having nightmares of being turned away once they found out about her genetic defect. I was pleasantly surprised by the doctors today and how much they seemed to really care about Lilly and want to help.

Dr. P got the background on Lilly and then examined her. She said it looks like Lilly may have cataracts. Also, Lilly has never had a hearing test. So she is going to talk to Lilly's regular pediatrican about that. A fun discovery was that we could see a tiny tooth in the bottom of Lilly's mouth that is getting ready to poke through.

Dr. P recommended we try some bolus feeds for Lilly. That means that instead of Lilly being continuously fed through the feeding tube, she would be fed larger amounts at once, but scattered throughout the day. (Like normal people eat.) Instead of having the pump push the milk in, put the milk into a large syringe and hang it up and let gravity empty it into Lilly's tube. She also encouraged us to continue practicing mouth feeds.

We discussed the sleep apnea issue. It is so common with Trisomy 18 children and we are often urged by other T-18 families to have Lilly tested. Dr. P said that since Lilly does not have any periods when she is sleeping that she stops breathing, that she most likely does not have it. But she will set that up for us if we want to have a sleep study done anyway. We need to pray and think about it. (It would require another overnight hospital stay which just feels overwhelming at the minute.)

We're to go back in 6 months for another check up. Dr. P says that we'll have things periodically checked on Lilly (such as a renal ultrasound on her kidneys when she's a year old) and will plan on Lilly being with us for quite awhile.

"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.'" Jeremiah 29:11-13

Though this appointment was positive, I tend to find Lilly's appointments absolutely exhausting. It was good to get back home.


  1. I love it that she has a tooth. Is it on the bottom?

    Surely she will be able to get her heart surgery before 6 months?

    I am sure you are exhausted. This is a whole new life for you now. I'm grateful to God that you are so strong. And I am grateful the Doctors are treating Lilly better.

  2. exhausting at best! i watched you pack up lilly yesterday (change her from head to toe and bundle her up), pack up her feeding tube, oxygen supply and diaper bag and get them all to the car. and all that on not the best night's sleep! reminds us how blessed we are when we can just hop into the car and go...

  3. Hey, the first tooth I ever lost, Lilly, was in the same place where you are getting a tooth in MY mouth!


  4. I'm so happy that prayers have been answered, and that you have been able to return home! I know from personal experience how rough it is to live in hospitals, being separated from the rest of your family. We will continue to pray that Lilly will be healthy enough to just be at home and grow until she can get big enough to get the need heart surgery! Hang in there, and keep the faith, knowing that so many of us think about you very day and say a prayer that God will give you the strength to do everything you need to do each day-- to care for Lilly, home school, keep house, etc. God's mercies are boundless, and He will provide what you need. With lots of love, D in Tennessee

  5. I can imagine that it is exhausting. You have a lot to handle every day already.
    Good to hear the dokter want to see Lilly in 6 months. Its like he is confident that Lilly can make it through that period of time:-)
    And a new tooth, yeah! Good for you Lilly! Soon you are able to eat an apple:-))