Tuesday, May 31, 2011

enough said.

all in all i'd say it was rough day, however...

update on the last couple days to come.

Monday, May 30, 2011

day 2 & 3.


day 2 after the surgery was much like day 1. lots of waiting. lots of standing next to the bed staring at our sweet baby. wishing with everything i have that i could pick her up and hold her. the surgeon determined she needed another day of rest so she remained on the paralytic for another 24 hours. baby steps. as the day wore on, they slowing started to back off some of the meds. when we went to bed they had bumped her oxygen down to 55 and we were hopeful it would be down to 50 by morning.
day 3 i woke up hopeful that we would see some real progress. my hope was crushed when we got downstairs and saw that her oxygen was back up to 60, as well as her peep having been bumped up from 5 to 7. her right lung did not look that great in the xray and they needed to work to clear that up before they tried to wean her off the oxygen. although the doctor assured us she was doing great, i couldn't help but feel we had taken a step backwards. she also had a frightening episode when her breathing tube got clogged by mucous. she started flailing and alarms started sounded. nurses rushed over and called other nurses over. doctors were called. it was cleared up within a matter of minutes, but a scary reminder of what a fragile state our little one is in. they continued to slowly wean her off meds and for the first time since surgery our little girl saw us. her eyes fluttered open and blinked as she studied our faces. her little eyebrows furrowed and i can only imagine what she must have been thinking. then she starting crying. a pitiful silent cry as her vocal chords are blocked by the ventilator. no noise came out, but i know exactly what she was saying. my heart broke as we walked away so she wouldn't get too upset. she wanted her mommy & daddy to pick her up. the nurse had to give her more sedative to calm her down as tears streamed down my face. although we are taking baby steps forward, these days are not easy. thank you for your continued prayer for a quick and healthy recovery.

Friday, May 27, 2011

day 1.



i anticipated how difficult the waiting would be while she was in surgery.
...trying not to think about it too much.
...trying not to wonder if everything was going ok.
it was difficult, but i was prepared and surrounded with friends and family. however, i did not anticipate how difficult the next few days would be. standing next to my baby.
totally.
completely.
helpless.
i cannot hold her. i cannot be sure she is not in pain. i cannot be sure my voice will bring her comfort - she always acknowledges my voice, but sometimes it causes her blood pressure to rise too high. i cannot help but wonder if she hears me and wonders why i won't pick her up. the nurses tell me not to fixate on the screen, but sometimes i cannot help it. scrutinizing each jump in her blood pressure. wondering if she is uncomfortable. her numbers have been stable today but so far she seems to be progressing slowly. this morning they determined she would need to remain paralyzed for at least another 24 hours to allow her heart and lungs more time to heal and adjust. they backed down her oxygen a bit, which is promising. i miss my little girl. i miss squeezing her. i miss her smile. i miss her gooing. i miss her little pointy finger she always does.
these times of difficulty also remind me how much i have to be thankful for. i'm grateful her recovery is going well. i'm grateful for all the doctors, nurses and staff at strong, they are wonderful. i'm grateful for a husband who never leaves my side. i'm grateful for finger lakes jamaican me crazy coffee. i'm grateful for the ronald mcdonald house. i'm grateful for friends and family and encouragement and prayers. thank you for your continued prayer. ...i promise i will post a picture when she gives me the pointy finger again.

photos by my one and only.

Thursday, May 26, 2011

joy comes in the morning.

it's thundering out. it only seems appropriate. we had our pre-op appointment today and she was cleared for surgery. at first there was relief but as the day went on, the heaviness of what is to come set in.
my sweet ladycakes fell asleep on me this evening. chest to chest. as i felt her little heart beating against my chest i thought about tomorrow. i thought about how i didn't know when we would be able to lay chest to chest again. i decided i would hold her as long as she slept. and i soaked in every moment . she's a trooper this little ladycakes. and she's got the snoopy band-aid to prove it.
and yes, she totally wore jellies to her appointment.
her sweet little chest. today it is smooth. tomorrow it will bear a scar. pray with me that it will be a mark of restoration.
pray with me that i will see this smile even sooner than i think.

pray with me that we will see many miracles on this journey. lives touched all around us. by my sweet little ladycakes.

There maybe pain in the night but joy comes in the morning

And when the oceans rage
I don't have to be afraid
Because I know that You love me
Your love never fails

You make all things work together for my good

...Your Love Never Fails, Jesus Culture

Thursday, May 19, 2011

i am a mother.





my requests this first mother's day...
..a cheese sub
..sea salt & vinegar kettle cooked potato chips
..stewart's cream soda
..a picnic with my two favorite people
..a massage
[i also requested a cannoli, but southside deli was closed. seriously southside? ...mother's need cannoli's.]
j, you owe me a cannoli. just sayin.

my sunbonnet baby.

there are two essentials for baby girl easter attire...
shiny black mary janes...
and an easter bonnet. of course.
this oh-so-perfect easter bonnet was made by my amazing mother.
her vintage easter frock [as my mother-in-law would call it] is from etsy.

the easter bonnet also had to have a peek-a-boo hole in the back.

my heavy heart.



it's 4am. i should be sleeping. for once i wish she still did 4am feedings. because i want to scoop her up in my arms and squeeze her to my chest. tears burn my eyes. i'm not usually a crier, but it's a common occurrence these days. i think about the nights in the hospital where she won't be sleeping a few feet from me. she will be hooked up to wires and monitors. my mind races trying to figure out how we can avoid this. but i know we can't. tears drip down the side of my face and hit the pillow. "God help me," so often these days this is the only prayer i can muster up. and He always does. i scoot back and cuddle as close as i possibly can to my sleeping husband. my rock. i think about the bag of goodies left on the porch by sweet friends. the emails and texts pouring in from friends and acquaintances, just to let us know we're in their thoughts and prayers. the beautiful handknit blanket made just for my sweet baby girl. the cards piling up on the table from prayer warriors. the gift card we just received from my MOPS friends.
the surgery has been moved 3 times. our current scheduled date is May 26. it has been an emotional roller coaster for us. thank you for your continued prayer and support. forgive me if i haven't responded. some days i feel like i completely shut down and go on auto pilot. however your love and thoughtfulness never goes unnoticed.

I lift up my eyes to the mountains—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
Psalm 121:1-2

Saturday, May 7, 2011

hello sunshine.


perhaps i'm a bit too eager for summer. perhaps after this never ending winter i'm wondering if we'll even have a summer? but i tried faba's little suit and sunhat on and icanhardlystandit! so enjoy the sunshine today. i know we will. as you can see in the above photo, fabs is heading out.