Saturday, June 19, 2010

A Breath of Fresh Air

The other day, we had a meet and greet appointment with Lily's new pediatrician (Tracy, thank you for the recommendation. Dr. V is fantastic!) Dave and I never know how doctors are going to take Lily and her condition. Are they going to be like the radiologist who was so rude, or are they going to be accepting and willing to take on our challenges?

I can't say enough about Dr. V. He spent so much time getting to know us, and he was so excited about Lily. Truly, the guy was practically shaking--he just couldn't believe that a Trisomy 18 child would make it to 13 months. It was just so nice to see him recognize and appreciate the miracle in Lily.

The appointment was only a meet and greet, but he asked when we planned to set up a regular appointment. I told him that actually, I was going to make one for soon because I wondered if Lily had a urinary tract infection. She had had a small wet diaper that morning. Dr. V, after telling us how crazily booked his day was for a Thursday, put his schedule on hold and did a routine checkup. Then he had his nurses cath Lily. Sure enough, Lily has a UTI. She is now on antibiotics, so hopefully, she'll be better in the next few days.

As for her g tube. . .what took us so long to agree to this procedure? Actually, I know what took us so long, but wow! I'm nursing Lily maybe twice a day. She's eating every four hours now, but even that will be changing soon. I was afraid that she would be dependent on nursing to get to sleep, but that's not even the case. She nurses at night, but she doesn't fall asleep. I hold her and rock her for a few minutes, but then she starts to fidget. Once she does that, I lay her in her crib, she rolls over on her right side (her favorite!), and she falls asleep. Thursday night she did wake in the middle of the night, but I think she either had gas or pain from the UTI (if there is pain from that). She's been sleeping all night long, too. Oh, how I've needed this for a long time!

As for eating, she's made such progress! She now will open her mouth and take her food. At first, she would just sit there with her mouth open and make this awful whining sound, as if to say "what do I do with this? what is this in my mouth?" She still doesn't take enough bites to make a difference, but there's such pleasure in seeing how much she's progressed! Her therapists would be so proud!

It's all such a breath of fresh air!


  1. Reading your post is also a breath of fresh air, as it allows us all to rejoice and celebrate how God once again "considers this lily" and continues to guide and provide for her and all of you. Let the miracles continue, Gracious Father.

  2. I am so happy for you and Lily! She is a little miracle.

  3. I am SO THRILLED that you have found a special doctor. We can't do enough to educate the medical community to dispel the myth that tri 13/18 are universally lethal conditions. They are not, and the more recent medical literature out of Japan states that.

    I am sure you told him that you are aware of many children who are older than Lily. Of course, many children are too fragile to live long or would require too much intervention but their lives are just as precious all the same.

    I am SO glad that you are getting your rest too! Wow, the whole world must seem different on a good night's sleep!

  4. I am so glad you are getting a wonderful doctor that cares and can see the blessings and miracle through Lily's life. I am so glad he checked her for UTI. The drs. were always amazed that Annabel almost never ran fever with her UTI's. The way I knew before I began cathing her was when she would give a whine during the night. She would do this several times and then whine when she wet. Then she would sleep for a few hours and began the process again. It was easier to tell when the UTI's were present once we began cathing her. I pray that she doesn't have many and that she will continue to do well.