Friday, August 28, 2009

Update - August 28

I know we just updated yesterday, but there’s more to tell today. So here’s another one!

Last night (after I updated) we headed back to the hospital to see our sweet baby. The nurse told us that during the afternoon, she had an apnea episode. What that means is that for about twenty seconds, she stopped breathing. Normally, when her oxygen levels drop as low as they did, she’ll snap herself out of it and it’s no problem. This time, they couldn’t stimulate her to breathe and had to use one of those bags to stimulate her enough to get her to breathe again and then had to put her on oxygen for a little while. While this is scary (and added to the general awfulness that was yesterday), they think they know what caused it. Since she’s still not so good at sucking and swallowing, they think what’s happened is that the food we’ve been trying to bottle feed her isn’t always being swallowed and it’s pooling in her mouth and then her throat. When she then tries to breathe, there’s too much going on and she isn’t able to.

As a result, they’ve asked that we stop trying to bottle feed her for a while. We will continue to work with her on the pacifier to teach her the sucking motion while they continue to tube feed her. It’s a little backwards step, but we need to focus on one thing at a time - turns out breathing is a little more important than eating :)

Today was a much better day than yesterday. Nothing very remarkable happened, but nothing bad happened either. She was awake a lot more today and worked really hard with us to get her to suck the pacifier while she ate tonight. We met with the physical therapist and speech therapist and got some exercises to do with her to strengthen her muscles and help her learn to eat. It’s nice to have something pro-active to do to move her along in the right direction.

We also got some chromosome test results back and thankfully her problem (as far as they can see) is not in any way connected with any kind of genetic or chromosomal defect. All that really means is that she doesn’t have something super-scary (trisomy 18 or Downs). It doesn’t give us a ton of info about what she has, but it helps us know what she doesn’t have.

We’ll be having a “Family Meeting” on Monday. We’ll meet with the doctors and nurses in charge of caring for her as well as the social worker and therapists. We all get together and start trying to come up with a plan of how best to proceed with her care and we can also get all of our questions answered. We’re looking forward to the meeting so we can at least have an idea of what the next couple of weeks or months is going to look like.

We’re doing much better today. We didn’t cry once today and we count that as a victory. We did our first normal thing since she was born and went out to dinner with my mom and dad. It’s hard not to feel a little guilty going out and doing regular things, but life keeps going whether we want it to or not.

Our God continues to give us grace and strength for each new day and we continue to have faith in Him to protect and heal our sweet Lydia. We thank you again for praying. Many of you we don’t even know but we are so thankful for you and are continually amazed by what the body of Christ can do together.

Our love to you all.


  1. My family is praying for baby Lydia (who is absolutely beautiful!) and praying for your family for strength and wisdom. Bless your precious little bundle! She is so sweet!

    Beaver Family

  2. I continue to pray daily for your beautiful baby, for the peace of God that transcends all for you and your family, for wisdom and guidance in choosing her medical care, and for the doctors and nurses who provide that care. May God's hand be on each of you every step of the way.