Sunday, July 1, 2012

Vitals ok, but worrisome weight loss - updated

I visited the hospital this morning to find out that lily's vitals were still in range and that the night had been uneventful - but that she had lost another 40 grams. 50 the first night, then 20, then 10, then 40. Scary jump. She now weighs 680 grams, or 1 pound 5.2 ounces, having lost about 15% of her body weight. Her daytime nurse, Jackie, said that the 40 grams was kind of a big weight loss - that they had to weigh her a few times to make sure it was right. She said that it could just be that lily is catching up on losing all of the water weigh that she gained in utero, which premature babies need to do. Docs expect anywhere from between 10-15% weight loss the first week. Seeing lily lose 15% while being unsure if we can start breast milk tomorrow is very, very stressful. Our nerves are getting frayed, and we have to focus on one day at a time- and try to forget, if only for a few minutes, that we're just at the beginning of this journey.

Seeing my daughter drop from 1 pound 12 ounces to 1 pound 5 ounces is a frightening reminder that she is far from out of the woods. We are in the thick of them, and will be for a while. We had a few good days in vitals, but seeing her lose weight is very hard. They can't start feeding her breast milk until her PDA is closed, and she has a heart scan tomorrow to tell us whether the indocin has worked. Lungs are first priority, the docs remind us.

If the PDA doesn't close by tomorrow, they can administer two more three-day cycles. After that, they would consider surgically closing it. We're praying it closes by tomorrow's scan, or at least without surgery. We just want lily to start eating breast milk- the doctors call it liquid gold. It will make her stronger, and hopefully, stop the weight loss. So a closed PDA and starting breast milk - both important victories that our lily could really use right now.

On the positive side, I am reminding myself - we just celebrated 5 days of life at 3:58pm. Vitals are still in range, and lily is still holding the battle line. I need to remind myself of that- it's the NICU roller coaster. I didn't sign up for it or wait in line or buy tickets for this particular ride- but I'm still on the ride. Lily is still alive, and she is still fighting. It is a horrible, helpless, terrifying situation - but it could be worse.

Please keep the prayers coming- they've worked wonders so far, but Lily still needs them. Your prayers and well wishes keep her, Sara and me going. This blog has had 3000 views in the past four days. Thank you everyone, all over the world, for your support.

(Sara and I are going back to the NICU at 5. If there are any updates, I'll update this post when I get back.)

UPDATE: just got back from the NICU with Sara. Lily's skin color is looking much better! Her skin is much more pink, and less translucent. To the touch, it feels slightly firmer too. Her skin had previously been very dark, due to the low oxygen and high bilirubin (it's in the hemoglobin) content. The blue bili light brings down bilirubin levels, and its working- they could turn it on low yesterday, and hope to have lily out of the light in a few weeks. It will be nice to have the blue light gone- it somehow makes things more somber.

It was great to see her skin look better. This is the first physically noticeable improvement in Lily's appearance - it came at a great time, considering the worry caused by the weight loss.

The westchester med center NICU really is an amazing place. It's a level IV NICU, with a 55-baby capacity. Lily has her own nurse, Jackie, who is great. It's literally one-on-one care at all times. We can call any time day or night, as often as we want, to check on her. Jackie told us that most preemies have a "honeymoon period" of a few hours to a day, before vitals start crashing (they call it "destat-ing"). Lily didn't have a honey moon period- her first 24 hours were basically all revival and resuscitation. Jackie said she was "very difficult to resuscitate" after being born. That explained why the docs first said I could see her 45 minutes after birth- it then turned into 2 hours, then 4 hours before they'd let me see her. Worst few hours of my life. But lily made it- I think I've said it before, but I'm pretty sure she's a superhero.

Lily's blood oxygen was at 93% the entire time we were there. The big hurdle is still determining whether the PDA has closed, and if so, we can start Lily on breast milk.

These posts are getting shorter- that's a good thing. I'm at home sitting in the living room with addie- she's singing along to "over the rainbow" in wizard of oz. Life is having shimmers of normalcy again. Putting Addie to bed, then back to the NICU for a quick lullaby for Lily.

Today has been an ok day. Sara is feeling better, which is good. We're praying for a closed PDA, little (preferably no) weight loss, and more critical stability.

4 comments:

  1. My thoughts and prayers are with you. Hang in there.

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  2. Sweet Lily and your family were prayed for this morning in our Sunday School Class. Please know there are prayers being said in Sherman, Texas. Janis Fletcher (Ashley Gurski's Mom)

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  3. The power of prayer is incredible.. Maine to Spain Austin to Boston...Keep em coming.

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  4. We are continuing to pray in Louisville,KY. Much love to you and your family!

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