Wednesday, May 26, 2010

Progress

And we are officially on high flow as of yesterday! Yay! So is she still holding her breath? We can say, cautiously and with total surprise, that she has not held her breath since 1:00pm on Monday. Wow. I'm shocked. Apparently, getting rid of the Cpap and the vent were a good decision.

Isn't she cute? I had forgotten what she looked like under all of that stuff.




Always sleeping with her mouth open....

Look at Jessy, our nurse, laugh in this one. So darn funny. Brooklyn looks like she's getting ready for karate classes or something. :)

And still lovin the binki....

Dad and baby, having a bonding moment....look at her feet - just chilin out in there. :)

Wonder what they're talking about?


Brooklyn LOVES getting her head rubbed. Here's videos of her last night getting her head rubbed.




video video

Monday, May 24, 2010

Round Two for Roger

Roger got to hold Brooklyn for the second time yesterday! Forty minutes he held her and she didn't make a peep. She didn't even fidget. For those that now how wiggly she always is, you know how fun this was for him! Here's your picture overload....(I might have gone camera happy, Roger told me I'd taken enough pictures. Haha.)















Getting her out of her isolette. What a process, but so much easier than doing it with the ventilator tube!


video

Saturday, May 22, 2010

GIFTS

I am so grateful for the gifts in my life.

Gift: Showing up the day after that last breakdown and seeing this sweet sleeping face. So peaceful. How I needed to see her.



Gift: The infamous foot. This will always bring a smile to our faces, no matter how rough the day. She always, always, always has one foot stretched out.



Gift: Again, the very day after my meltdown, being told she is coming off the vent. Right now. I was stunned. Roger wasn't surprised. How Brooklyn hates Cpap, but I'll consider it one of our gifts for now.




(Giving her little nose a rest from the Cpap. Her poor face is hammered from the ventilator tape. She kinda looks like and old woman here. She's going to kill me someday for posting this pic. Love how she's workin' the elf look again!)




Notice the binki? Still loving it. Classic Brooklyn pose for ya.




Gift: Roger. What more can I say? Where would I be without him? He loves his girls.





Gift: Sister visits. This is Meg's hand - holding Brooklyn's tiny one. Pictures don't do this tiny body justice. Thanks Meg for fitting in a run up to hospital to see the baby before you party with the Blands this week!


Gift: Nail clippers. So lame I know. But Brooklyn always makes herself cry when she scratches her face. So today I brought up nail clippers with a magnifying glass and fixed the problem. I might have been sweating by the time I was done I was so nervous. Has anyone else clipped a three pound baby's nails?!



Gift: Binkis. Someday I won't say that. But these tiny things are miracles for us right now. Look at the size of these! The purple one is a "preemie" binki. The pink one is a "mini-preemie" binki.



Gift: That we have a baby to love that is still with us. Some friends of ours lost their precious baby boy this last week after living only 30 hours. The funeral was yesterday. How do you ease that type of sorrow? I felt grateful for our trial....I know they would have traded us places in a second.

Brad and Megan, words don't say enough. You two are incredible people. The Lord sent you a choice spirit, a son that had proven himself worthy to live with his Savior again after such a short time here....and a son that will be yours again someday to hold and hug. We are so very very sorry he earned his angel wings so quickly. Our hearts go out to you and your family.

Gift: Friends. Family. Our support troops. Those that blogstalk us and won't admit it. To each and every single one of you - thank you for being one of the many gifts in our lives. We appreciate all that you do.

Wednesday, May 19, 2010

Heart Hurt

I have a friend who descibed "heart hurt" in one of her blog posts. This is what I felt tonight. You always know when you're building up to a good cry. You're teary at little things. Your eyes always feel a little watery, your nose stings at simple things, you swallow away the tears as best you can.

But sometimes the flood gates open. Like they did tonight for me. I cried out my heart hurt to my mom - because she was there with me. Then I cried out my heart hurt to Roger on my way home. Then I cried during dinner. Just because.

Sometimes you just need to have a good cry and let the world know you're hurting, upset, sad, heartbroken...whatever you may be feeling.

It's amazing that this little girl can cause so much emotional pain for me. I don't say that in negative way, but sometimes I feel I can't take much more of this trial. Physical pain is awful. But emotional pain breaks you. It's a constant ache that flares at any given time.

No one ever can describe what it feels like to love a child until you become a parent. Doesn't matter how you are defined as a parent, you know exactly what I mean when I say this.

They say a Mother's hug can make the hurt go away. I'm grateful for my mom today, who hugged me as I cried - walking down the hall - away from the NICU - away from a situation I couldn't handle anymore. I'm grateful for her mom, my grandma, who slept in the waiting room for two hours today while I tried to console my daughter. Oh how I wish, I wish so badly, so so so much more than words can ever express, that I could have hugged my baby today.

Brooklyn is fine. Progressing ever so slowly, testing my patience and faith. But she was upset today - more than I've ever seen before. She cried off and on for 30 minutes. And I couldn't fix her. The nurse in me tried every trick I knew to calm a preemie stuck in an incubator. The mom in me desperately tried every trick we've learned along the way to console our daughter. She finally gave up, exhausted, and fell asleep. And held her breath so badly that she went gray. And I crumbled. She was sleeping and sort of lethargic from her tantrum, so I left. I walked away. I couldn't take it anymore. I'd watched her cry (shaky bottom lip and all) for long enough. My chest ached, my heart ached - and I went home. To my sweet husband who let me cry it out. My saving grace again.

I needed and wanted to hug my baby girl more than I have ever wanted to before. I knew she would have calmed down had I just been able to hold her. But she is confined to her incubator and ventilator. For the first time I hated the modern miracle of medicine.

Three hours later I got up the courage to call up to the hospital to check on her. Turns out all she needed was to poop. They had to change her diaper three times there was so much. So she had a tummy ache - haven't we all? But she couldn't tell me that. Couldn't even communicate through body language. She had to suffer through the hurt in that stuped isolette until she was able to go.

Tonight I feel more peaceful. I'm still teary, even as I write this. I'm grateful for my husband who lets me rant and rave when I feel the need. I'm grateful for a new day tomorrow - to see her again, maybe even hold her. It's been a week since I've held her...I think I'm ready. She may not need it, but I do.

Sweet baby Brooklyn, can you please try to get bigger faster? I'm not as strong as I'd like to be, my faith is being tested, my emotions can't take much more. We're ready to have you home.

Doesn't she look mischevious in this one? No wonder her nurses are always putting her in "timeout".

Four generations: Grandma Sharon, Mom, Me, Brooklyn

Working up to her tantrum today...


Binki still does wonders, even with the breathing tube in the way. Doesn't she look upset? One of her calmer moments during the tantrum.






Cute grandma, waiting for me to get a grip and leave so she could go home and take a real nap. Sorry Grandma.

Still Here

Oh hi. Yep, still here. Life has been busy, and this cute girl has had a quiet few days.
Progress Note:
  • Dr. Chan would like to extubate within the week - crossing our fingers!
  • Gaining weight - she hit three pounds Sunday night! Yay for our sort of chubby girl!
  • Has a bit of reflux from the lovely caffeine she's on. Caffeine helps stimulate her brain to communicate with her lungs to breath on her own. We calculated her dose - she's getting the equivalent of 28 Mountain Dews a day!!! Yikes.

The rest are just pics because she's so cute.

Does this look like a model pose or what?

She always has her hands up by her face, grabbing her ears, over her eyes, hanging over her breathing tube. Love this girl, she's good entertainment.

Hello. Someone talk to me.

Fine, if you won't talk to me, I'm going back to bed.

I know, I know, I'm cute. You all wish you looked as cute as me.

Nighty night!

Some fun things to remember:

  • Brooklyn LOVES to have one foot stretched out at all times. Seriously. She has totally charmed the NICU staff.
  • She has attitude. I was holding her feet a few nights ago and she totally kicked me out of the way! Not just once, but five times. Roger was bent over laughing. Yes we were probably slap happy at that point because we're so tired, but it sure made our night.
  • I am totally fascinated just watching her. Doesn't matter what she's doing, she could be sleeping and I still could watch her for hours. I get absolutely nothing done at home because I crave seeing her.
  • And for anyone that would like to know - life flight is expensive! I'm not shy, plus we have insurance, so I'll share the fun numbers with all of you... $8300 for that quick flight. We'd pay it a hundred times for our cute squirt!



    And as always, some videos for your enjoyment. Sorry they're a little dark, these were taken at night. The lighting isn't great.


video video

Saturday, May 15, 2010

Finally

She's still a daddy's girl. Enough said.



Another skin to skin session...






Seriously, is she just the cutest ever? No one would ever guess who she belonged to - hello Roger clone!

Second Family Picture........


Another of our favorites, Emma! How we love and appreciate our nurses!



And finally, showing off her chub! Excuse her red skin - we had just finished skin to skin - we were both bright red.


Progress Report:
  • She had a big week - another head scan, another heart echo and an eye test. We are able to say with a big sigh of relief that all were normal. Yet again, how blessed we are!
  • Obviously still on the vent - but working on Cpap trials to strengthen her lungs so we can extubate her soon.
  • Still having a few breath holding spells a shift - so not coming off the vent until those taper off
  • Gaining weight - yay! 2lbs. 14 oz!
  • At "goal" feeds and tolerating those well
  • She's more alert these days (if she decides she wants to wake up from her beauty sleep)
  • Dr. King mentioned the word "home" yesterday - I laughed and told him that word was taboo until she is off the vent and over three pounds. Then we can start hoping for progress towards home.
  • She's grown 1.5 inches since birth - amazon child!

In summary, we feel so awed by how well she is doing and how far she has come. We still have our days where we're so tired of this whole situation - it gets old in a hurry. But she is still so little and technically only 32.5 weeks if you look at the countdown on the sidebar (yes I left that up for my sanity...or insanity...either one works). I have my days where I feel like I'm holding my breath, waiting for the ball to drop, so to speak. But I'm hoping with all my heart that she is passed the point of any major setbacks. Day by day, we get closer to bringing her home with us. We can't wait.