She is home!

Guess what?? Roxy is home now =) AND I got my wheelchair ride that I've always wanted =) Holding on to my newborn baby as I stroll down the halls of the hospital. Stephen was sent out to get the car and pulled up for us =) That's why I'm so excited in the wheelchair picture. I didn't expect that at all =)
So far she's  doing good- she ate for us at 11. Ate more than she had to... but at 2 she wouldn't eat a drop... so hopefully she'll wake up soon to eat. Please keep praying! Home health care will be here on Tuesday to check her weight, etc. I'm so nervous... just glad she's home and we're all together.

The pics are: 1. me and the wheelchair, 2. removing the wires from Roxy!, 3. momma and Roxy yesterday first time without a feeding tube, 4. family pic today, 5. Our first time putting Roxy in her car seat, 6. Daddy, Lily Roxy at home- enjoying "Land of Has", and 7. Roxy in her bassinet.

Rough times

Roxana has been making progress. God has already answered MANY prayers.

Today, though- I'm weighed down with jealousy as I saw more mommies leaving the hospital with their two-three day old babies. Anger and confusion as to why both of my babies had to stay in the hospital when I was sent home, I understand medically speaking, but why God had this planned for us twice. It's been 21 days. 21 terribly long, depressing days. I wanted to be the mommy who had her baby in her room with her until we were both discharged.. together. I wanted to be the mommy waiting downstairs at the door, holding my newborn, waiting for her daddy to drive up and pick us up. I WANT to be able to let family hold Roxy, not wait months to do it. Instead- Lily, Stephen and I are rushed to wake up and get going to the hospital every morning so we can spend 1.5-2 hours with Roxy. When I pick up or change our Roxy, I have to be careful not to pull on her feeding tube and 4 other wires that are attached to her. I get to deal with anxiety during rounds, wondering if it's good news or bad news. My two year old daughter doesn't understand why her mommy keeps crying, saying "Mommy, just be happy. It's okay Mommy"  I'm angry because I was in that doctors office two or three times a week in the end for 6 weeks! We watched SO CLOSELY to prevent things from happening. I'm angry because my OB didn't see any of this coming.

I am VERY grateful to God for this amazing gift of life, PLEASE don't get me wrong.... it's just so hard to understand "why" which I know that trusting in God, I don't NEED to know the "why" and trust in Him. I just want Roxy home. I want her to be healthy.

Update on Roxana

Roxana is doing so much better, Thank you God!!!!!! Please keep praying for her to build up her endurance, eat her food and have fewer heart rate drops.

She is back up to her birth weight (8ibs 6oz).

She has eaten 4 full feedings in the last 30 hours (they dropped her feedings to 60ml from 75ml because her weight gain is going well).

She is being seen by a physical therapist, they believe that when she's awake she's exerting too much of her energy moving her arms and legs, so they're trying to have her in different positions to build up her muscle tone without exerting too much energy. Also because she is heavier for her age (38 1/2 weeks) it's already hard for her to lift up her arms and legs.

We still have never heard her cry. Even at birth due to her swallowing fluid. The docs and nurses also haven't heard her cry. She sure knows how to "grunt" though =)

I am producing enough milk for her and then some! Once I get a back up supply well stocked I may become a donor! We actually had to order a small chest freezer (I did check craigslist first, there's only huge freezers- nothing for the limited space we have..) to store the back up supply. It's already taken over our freezer...

I'm trying to stay as positive as I can about her progress. She'll do great for a streak of a good solid few hours and then she regresses again. I want to jump for joy, scream, shout because I'm so happy she's gaining weight and taking some more feedings, but then I have to guard myself if she does slide down again.

Here's some newer pictures=)

Please continue to pray for our little one. This has been very hard on us all. We thank you for your prayers =)

Roxana Mae Johnson

She was born on July 7, 2011 at 5:17PM. Weighing at 8ibs 6oz. I was 36 weeks along and she just wasn't doing so great inside anymore. Very unresponsive, etc. She's overcome many obstacles and we're hoping she gets over this huge hurdle SOON so she can come home to us. She needs to gain weight instead of lose it and keep her heart rate up during feeding times. And actually feed without the help of the feeding tube. Here's some pics: