still...

still waiting...
still coping...
still working on feeding...
still hoping.

6 lbs. 5 oz...

6 lbs 2 oz

Today Lily is over 6 lbs. She seems to be taking a step backward in eating lately. For the past 3 days, she's taken very few feedings from a bottle. It is hard to watch. I'm so connected with any of Lily's daily details. If she has a good day, I have one. If she has a sleepy day, my day is just a little more sad. On top of it all, Daniel and I have been fighting a cold (which keeps us from seeing Lily). Daniel is pulling out of his and I'm still trying to fend mine off. You'd be impressed Mom, I've even gargled vinegar a couple of times! I'm hoping and praying that somehow, I can get by without a full blown runny nose and sore throat. I have absolutely no idea when Lily will be able to come home. Please God, allow her to eat and come home by my birthday.

Little Tiny Pumpkin

Here's some pictures of Lily from her bath on Monday night. Nurse Sue picked out this sweet pumpkin outfit for Lily.

These pics were taken of Lily on Oct 1. "Shhh", Lily says, "I have a big secret".

October Fun

We had some fall fun and bought a pumpkin for Jude this weekend. He loves the little one; keeps wanting to bring it into the house and carry it around. Another favorite is 'hot chalk' (hot chocolate). Jude asks for it every day.

Due Date

October 12, 2009 - Lily's due date. Hmm, not sure how I feel about today. A little happy - a little sad. Mostly I just wish Lily was home. She is getting closer (very slowly) - but closer. Here are some updates:

• Eyes: Lily had an eye test late last week. Good news; finally her eyes are mature. That means her eyes are developing normally and she doesn't need another test until 6 months.
• Brain: Lily's doctor ordered another brain ultrasound for her this morning. The results were encouraging. The brain bleed inside of her ventricle is almost completely gone. It's hard to know what will happen with the little tiny bleed spot outside of her ventricle - but from the pictures, the doctor said it looks good. Time will ultimately tell - but we are encouraged that all will be well with her development.
• Heart: Lily also had an echocardiogram this morning. The tech said she couldn't find the small muscle whole that she saw last time - so the assumption is that the small whole closed on its own (which was what they expect to happen). I'm sure the doctor will take a look at the echocardiogram pictures and hopefully confirm this - but it's really good news.
• Weight: Lily was up to 5 lbs. 7 oz last night!

Now...if we could just get Lily to eat better. She has started to eat a full feeding (54 mls now) once a day, so she's making a little progress. But we hope and pray that she will do this more often and more consistently.

GI Test

Lily had a GI test yesterday. Since Lily has been having trouble progressing with bottle feedig and nursing, her neonatologist order the test. Debbie, Lily's nurse, and I wheeled her crib down to radiology in the afternoon. The pediatric radiology doctor put her on a large table under an enormous xray-type machine. They fed her a bottle and watched her mouth, throat, esophagus, and stomach as she swallowed. It was pretty interesting to watch. They studied her anatomy to make sure all was well. They also studied the bottle nipple and how fast or slow she could/should swallow milk. The test turned out as good as can be expected. Her anatomy is fine - structurally, Lily is perfect. She does have some reflux. Which is why she takes very tiny swallows to try and prevent too much from getting into her airways. Basically, she's a preemie. It should get better as she grows and becomes stronger.

5 lbs 1 oz

Lily is 5 lbs and 39 weeks today. She's looking bigger and bigger all the time. Crazy that she's still almost 3 lbs short of what Jude was at 39 weeks. Progress with eating is slow. We're hoping that some day (as she gets bigger and stronger) she'll just all of a sudden 'get it'. It's hard to be patient though - especially as she gets older and is awake for longer periods of time. I hate to think of all the times she's awake and I'm not there to spend time with her. The nurses are wonderful - but it still makes me sad.