Month: December 2014

From Journey Rose:

Mom and Dad said I could give the update tonight. I have 3 things to say…

• No one better take my doll. She’s so tiny. Makes me feel big and strong. I love her. (Thanks, Elizabeth Blumin!)
• Thank you for praying for me! I feel so much better every day. They’re feeding me 18 ml mommy’s milk every 3 hours, so I’ve been sleeping like a baby! I look completely different every day, but that’s just how it is at 32 weeks gestation. (Had to ask Mom how to spell that word.)
• Best news of all, my brain scan last night showed “no change” from before, so everything is moving along how it should. Please keep praying. But Mom and Dad are SO happy! Happy tears feel precious on my head.

Today Mom left the freezer slightly open for a few hours. Dad had to throw away 40 bottles of thawed milk. Mom cries. Dad makes dinner.

Praises: In addition to her growth, her culture Monday came back negative for the staph! So she currently has no MRSA (methicillin resistant staphylococcus aureus). After several more consecutive negative cultures, we are praying the new non-contact isolation (“gowning up”) will be lifted and skin time can resume. She’s also tolerating her increasing breast milk feeds very well, so as of last night she’s off the TPN fluids!

Prayers: Clear results on future cultures so skin time can resume again soon. Also, Journey “failed” the one-hour CPAP test last night, so they just switched the settings back to give her more pressure support. She needs to be able to “inspire” more (breathe in more deeply) on her own. They said they just wanted to see how she’d do, even though it’s early, and we’ll just try it again soon. Continued request for prayers for strong, healthy lungs. She’ll have another X-ray today to check them.

Thanks for all your love and prayers. God is always good and we are so grateful for each day with our Journey Girl.

Well, I just moved back into my own room, an isolation room, due to positive test results for MRSA / staph infection last week. But they’re growing a follow-up culture now to confirm the antibiotics killed it off. Brand new hospital protocol requires it. I’m changing things around here, people.

They said everyone has to dress up in gowns to see me now, and wear gloves too. I’m liking beautiful girly things so far, but these are not the gowns I was imagining. They’re yellow and thin and they wear them over their clothes. And the gloves are not white and dainty. They’re blue. Disappointed! And for now, this all means no skin time either. But Mom just finished holding me anyway, in a soft blanket. I got to lie on my back and look up to her.

Bright side to this change? Safety for others and for me, more privacy, extra space (Dad’s family is coming to town next week!!), it’s darker, changing hospital policy is surely resume material, and I see plenty of room for an 8-foot Christmas tree, a few presents (all I want are hats), wall space for stockings… If you know my Mom and Dad, you know they’ll do something. Thanks for your love and prayers!!

P.S. Mom just left and I did so good with her they decided to wean me off my breathing machine settings a little more. I’m on a one-hour CPAP trial! Go me! Thanks for praying I can do this!

Kyler here. Baby Journey loves snuggling with her doll (thank you Elizabeth Blumin). It smells like Mom. She sleeps with it and brings it back to the NICU.

Praises: Today’s X-ray for her lungs showed they’re continuing to improve! She’s also getting off the IV food today, because she’s up to a whopping 18ml mommy’s milk every 3 hours! This is the most she’s ever had and the limit for her size right now. She’s too little to handle more. She grew out of the tiniest diapers, so now she gets swallowed up in the next size for a while. We think she’s going to hit 3 lbs again today and stay there. Big girl!!

Sandi here: She has a lot of hair on her head. It’s red like my Dad’s. So very VERY special to me. And look at all the lanugo all over her body. She’ll lose it all but it’s precious for now.

The only clothes she can wear are hats, because of the cords and the need for quick access should something need adjusting. This was given to Journey Rose by my high school friend, Ashley Meyer Radack. It meant the world to me and made me feel like I had a little baby. Another one she wears often is from Jami Marstall, long-time friend and prayer warrior.

To understand scale, our fist is too big to fit inside these micropreemie hats.

Speaking of gifts. I can’t explain how much they mean to me. People are sending little cards and gifts that make me feel very loved and very much like she’s going to be okay. She can’t fit into anything clothes-wise, but to know there are clothes waiting for her means more than almost anything. Thank you forever for her baby gifts. It’s been the most loving act of kindness, and I don’t think it’s something I would’ve ever known or thought to ask for…

Raw post. Sorry. Lots of tears shed over this precious one today. I sometimes feel panicky about the future, and I just ache and miss her being with me all the time. It catches up to me in my sleep. Nightmares. Then the tears just fall. Sometimes it’s out of nowhere. I don’t often post about the sad and hard times, not because we don’t like negative, but it’s been way too raw and painful. I haven’t returned phone calls or many messages or texts.

I can’t talk. Other than repeating “my baby” to no one around over and over. Just breathe. Hope. Pray.

Maybe I’m getting a little stronger now. I do want God to use me however he wants to, and if that’s by sharing about the hard times too, I will try. To cope with the nightmares, I cry it out, pray, write some, stare at her pictures or watch her videos a hundred times, repeat “my baby” to no one around over and over, hold her when I can, and/or let my husband hold me.

The pain is there, and I am up and down, no matter how she’s doing. And she’s been doing so very well the last two days and this morning. Up to 12ml mommy’s milk every 3 hours, and tolerating it super well! I miss her so much when I’m not with her, but (because I feel like I always have to find something positive) am SO grateful for each time they let me touch her. Here now and waiting.

As I’m feeling the pain today I’m praying for other hurting mommy hearts. Just breathe. Hope. Pray.