Wednesday, July 29, 2009

Last Night

Last night, I peeked in to check on Finleigh as she lay in her crib sleeping. She was silent and still, so I held my breath so I could hear her breathing. Then I stepped a bit closer trying to hear something. Was that her chest moving? I stepped in closer and I could still hear nothing. It's that game that young parents play when they check on their little ones when they're deep in sleep...trying to make sure they're breathing but doing everything in their power not to wake them up. I finally put my hand on her chest and she twitched. I flew out of the room as quickly as I could in case she opened her eyes.

This a scenario that's played out many times for me as a parent. That slightly paranoid feeling that your child is going to be the next SIDS victim. But the thing is...I'm not sure it's ever happened with Finleigh.

From the time Finleigh was born, she was a noisy breather. We never had to sneak in and hold our breath to hear her breathe...we could hear it from outside the room. It was our first indication that something was different with her. Her noisy breathing caused by her weak muscle tone and the spare milk left over from her sloppy swallowing. She sounded like she had a bad cold all the time. People found it quite shocking. I would stand over her at night as she slept and wondered if I should take her to the emergency room because she struggled to get each breath into her lungs. We would prop her up as she slept hoping that would help. We could hear her snoring all the way in our bedroom with the TV on. It was why we started seeing specialists and in part what indicated that she needed to be tube fed. And that noisy breathing did not go away, even when we did tube feed her. Her muscles just weren't developed enough to breathe as easily as the rest of us. It was her.

This change hasn't happened overnight. I've been noticing lately that she doesn't make noise anymore when she's just sitting around. I've noticed that she doesn't snore much anymore. Once in a while when she's really concentrating I hear something or if I'm holding her around the rib cage I may feel a little vibration. But over all, the breathing thing really isn't an issue anymore. We don't even really think about it anymore. It's almost as if she's "normal".

Is it possible? Will she really one day be "normal?"

We can be cautiously optimistic.

There is hope. Now that her breathing has improved so much, it tells me that her muscle tone is maturing. She doesn't need help to eat anymore. So, hopefully the next step will be talking.

We had a very gratifying appointment with her pediatrician, who hadn't seen her in 9 months, the other day. Her doctor was so excited to see her standing when she walked into the exam room. And then walking. And then drinking normal water out of a normal water bottle. And her growth has stayed steady in the 5th percentile. And then we had a nice talk about how happy she was that all her genetic testing came back normal and that she doesn't have Prader-willi syndrome. It was so fun to see someone who hadn't seen her in so long be so impressed with her progress. So, we'll continue to see the opthamologist about her lazy eye. And we need to continue to see a speech therapist about her talking (or rather lack thereof) and do stretches on her legs since she's still not quite standing up straight.

And that is that, my friends. In a normal parenting moment last night, I remembered where we were not long ago and just how far we've come.


  1. I got teary while reading this Amanda... I feel your pain (well as much as I can without experiencing it anyway). I'm glad Finleigh's doing better every day - and I'm glad that there is reason for optomism! She's such a sweetie - can't wait to hear one day that she's starting to talk too! :o)

  2. Oh Manda this is so exciting. I am excited for you and for Finny. Hope is an amazing thing.

    love you.

  3. That's great news about Fin doing so well. I guess when you look back at all the issues she had and how she's doing now, you guys can be thankful of how far she's come. Good for her! I know what you mean about the checking breathing thing. I've done that so many times and checked both boys the other night when it was so so hot out. There's always that fear that your kid will be the next statistic. Glad Fin's breathing has cleared up so much though!

  4. Amanda... that is fabulous. I'm sure even more marked improvements will be made as she starts school.