Chrissie had a good day without any big crises (after her suture procedure this morning, of course). At shift change (like always!), she started bleeding in her lungs, but it wasn't a huge amount. It was fresh blood from the lungs due to the pulmonary hemorrhaging, but the amount was much more manageable than previous lung bleeding episodes. The bleeding tonight is most likely due to the increase in Heparin (blood thinner) that Dr. Porisch is using to try to keep the clot in her pulmonary artery from growing larger. It's a balancing act with pros and cons, but right now, it is in Chrissie's best interest to try to keep the clot from growing. The Heparin dosage is tiny, but apparently it's enough to make Chrissie's pulmonary hemorrhaging act up.
The night shift is NOT the time to start bleeding from the lungs. It's just harder to gather all of the right people in the right places, and the lung bleeding has jeopardized Chrissie's life before, so I am praying that she will NOT have any more lung bleeding episodes tonight (or ever!). The oscillator is the best ventilator to be on to reduce chances of lung bleeding because of the way it works in putting more constant pressure on the lungs (like when we apply pressure to a cut to reduce bleeding), so that is in our favor, but the Heparin is not in our favor with regards to pulmonary hemorrhage. That's the balancing act.
I have to just thank you all for revving up the prayers for Chrissie. I am so grateful for the awesome round-the-clock prayer coverage from the army of prayer warriors. You seriously will never know how comforting it is to know that at every second of the day, someone is lifting up a prayer for Chrissie. This helps me to sleep when I get the opportunity, between alarms and/or crises. God gives me a comfort that comes through your prayers for Chrissie as well as for me. We are comforted by all of the prayers lifted, and blessed by the many gifts you all keep showering us with here at the hospital. I'm continuously amazed at how God sends angels to deliver cards, gifts, food, drinks, care packages, chocolate dipped strawberries, cookies, crosses, and on and on and on. It's amazing how He leads His army to protect and provide. Thank you for marching onward with the Christian soldiers.
Please join me in praying for NO LUNG BLEEDING and NO CLOT GROWING!!! Two opposite needs with regards to the coagulation of the blood, but our God is the only One capable of handling such a delicate balancing act. Would also love prayers for an overall peaceful night full of sweet dreams and no crises with all stats and sats where they should be...heart rate, blood pressure, oxygen saturation, lungs and pulmonary artery clot: all good, all night.
To God be all the glory. He is mighty to save. Keep praying...
PS I have a very special surprise to announce in a separate post. Be on the lookout! :-)
Tuesday, May 18, 2010
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Josh 1:9
I command you--be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go."
NLT
my kids and i listn to kids place live on xm alot and I heard a song today that truly made me think of you. its called Crayola Doesn't Make a Color for Your Eyes. The way you love your childern both bio and adopted gives me hope that so many wonderful people are out there. i found your blog not too long ago but i am already checking multiple times a day hoping the Princess is doing better. here is the lyrics for Crayola by Kristin Anderassen but i really suggest you listen to it. she is an amazing singer and i hope it brings you some joy. http://www.kristinandreassen.com/
i went to see the doctor. I’d come down with the blues.
She said “No, I can’t cure you, but I know something you can do.
Take out a piece of paper, and sit down for a while,
and draw a pretty picture of something that makes you smile.”
Well, I know what makes me happy. Didn’t have to think for long.
But when I tried to draw it, it always came out wrong.
I had a box of 12, 48 and 64,
but nowhere could I find that one shade I was looking for.
I guess I realized shoulda come as no surprise
Crayola doesn’t make a color for your eyes.
There is no way that I could possibly describe you.
Crayola doesn’t make a color to draw my love.
At first I thought of Green Blue, but then I saw Blue Green.
And then sometimes in bright light, they look Aquamarine.
I think at night they’re darker. I looked again for you.
Saw Grey and Black and went out walkin’ after Midnight Blue
But the hues of the deepest skies would be a compromise...
Chorus
Spring Green is much too yellow, Sea Green is far too pale.
Cornflower’s way too mellow, so I’ll try again and fail.
There’s no way I can capture the way you make me feel.
One look from you is rapture, whether Blue or Green or Teal.
No color qualifies. That crayon’s telling lies...
Crayola doesn’t make a color…
Hey look, it’s Periwinkle. So sure I got it now.
But you wink and there’s a twinkle in your eye and still, somehow,
I just can’t get that sparkle. Those glitter crayons won’t.
Maybe Glow-In-The-Dark’ll get it right. Aw, no they don’t.
Mr. Crayola tries, but I’m left to fantasize...
Crayola doesn’t make a color...
For your eyes, something darker let’s see what I can find.
Melted mahogany and got the depth not the shine.
Just about gave up and then I peeled the paper off a little end of…
Really thought it coulda been… ahh, not even Burnt Sienna!
Your passport says they’re brown, but I’m gonna keep lookin’ round…
this song makes me think of you. when you get a moment, please google it and listen.
Crayola Doesn’t Make a Color For Your Eyes
by Kristin Andreasssen & Megan Downes / Yellowcar Music, ASCAP
I went to see the doctor. I’d come down with the blues.
She said “No, I can’t cure you, but I know something you can do.
Take out a piece of paper, and sit down for a while,
and draw a pretty picture of something that makes you smile.”
Well, I know what makes me happy. Didn’t have to think for long.
But when I tried to draw it, it always came out wrong.
I had a box of 12, 48 and 64,
but nowhere could I find that one shade I was looking for.
I guess I realized shoulda come as no surprise
Crayola doesn’t make a color for your eyes.
There is no way that I could possibly describe you.
Crayola doesn’t make a color to draw my love.
At first I thought of Green Blue, but then I saw Blue Green.
And then sometimes in bright light, they look Aquamarine.
I think at night they’re darker. I looked again for you.
Saw Grey and Black and went out walkin’ after Midnight Blue
But the hues of the deepest skies would be a compromise...
Chorus
Spring Green is much too yellow, Sea Green is far too pale.
Cornflower’s way too mellow, so I’ll try again and fail.
There’s no way I can capture the way you make me feel.
One look from you is rapture, whether Blue or Green or Teal.
No color qualifies. That crayon’s telling lies...
Crayola doesn’t make a color…
Hey look, it’s Periwinkle. So sure I got it now.
But you wink and there’s a twinkle in your eye and still, somehow,
I just can’t get that sparkle. Those glitter crayons won’t.
Maybe Glow-In-The-Dark’ll get it right. Aw, no they don’t.
Mr. Crayola tries, but I’m left to fantasize...
Crayola doesn’t make a color...
For your eyes, something darker let’s see what I can find.
Melted mahogany and got the depth not the shine.
Just about gave up and then I peeled the paper off a little end of…
Really thought it coulda been… ahh, not even Burnt Sienna!
Your passport says they’re brown, but I’m gonna keep lookin’ round…
& here’s a BONUS extra verse by Megan Downes. It was written after the recording was made but it is genius and if you are simging this song, you should learn it!!
Raw umber? Sepia? Which one is best for eyes of brown?
Your lashes can't conceal dark eyes so warm, so deep they drown
All my sorrows, pain and heartache;All my sadness is washed away.
Outside the lines, that color shines and makes a brand new day.
(A stick of) brown wax can't emphasize the way your eyes (just) hypnotize
Just wanted to let you know that even if I don't comment on every post I am still here praying. Sometimes instead of posting I spend more time praying. ;0) Often times I wake up in the middle of the night and pray for you all. Anyway, really not a lot to say but that I am here. I love you guys. And your 30 day rant about tore my heart out. :0( Kiss the princess for me. ((HUGS)) Amy
Crayola Doesn’t Make a Color For Your Eyes
by Kristin Andreasssen & Megan Downes / Yellowcar Music, ASCAP
I went to see the doctor. I’d come down with the blues.
She said “No, I can’t cure you, but I know something you can do.
Take out a piece of paper, and sit down for a while,
and draw a pretty picture of something that makes you smile.”
Well, I know what makes me happy. Didn’t have to think for long.
But when I tried to draw it, it always came out wrong.
I had a box of 12, 48 and 64,
but nowhere could I find that one shade I was looking for.
I guess I realized shoulda come as no surprise
Crayola doesn’t make a color for your eyes.
There is no way that I could possibly describe you.
Crayola doesn’t make a color to draw my love.
At first I thought of Green Blue, but then I saw Blue Green.
And then sometimes in bright light, they look Aquamarine.
I think at night they’re darker. I looked again for you.
Saw Grey and Black and went out walkin’ after Midnight Blue
But the hues of the deepest skies would be a compromise...
Chorus
Spring Green is much too yellow, Sea Green is far too pale.
Cornflower’s way too mellow, so I’ll try again and fail.
There’s no way I can capture the way you make me feel.
One look from you is rapture, whether Blue or Green or Teal.
No color qualifies. That crayon’s telling lies...
Crayola doesn’t make a color…
Hey look, it’s Periwinkle. So sure I got it now.
But you wink and there’s a twinkle in your eye and still, somehow,
I just can’t get that sparkle. Those glitter crayons won’t.
Maybe Glow-In-The-Dark’ll get it right. Aw, no they don’t.
Mr. Crayola tries, but I’m left to fantasize...
Crayola doesn’t make a color...
For your eyes, something darker let’s see what I can find.
Melted mahogany and got the depth not the shine.
Just about gave up and then I peeled the paper off a little end of…
Really thought it coulda been… ahh, not even Burnt Sienna!
Your passport says they’re brown, but I’m gonna keep lookin’ round…
& here’s a BONUS extra verse by Megan Downes. It was written after the recording was made but it is genius and if you are simging this song, you should learn it!!
Raw umber? Sepia? Which one is best for eyes of brown?
Your lashes can't conceal dark eyes so warm, so deep they drown
All my sorrows, pain and heartache;All my sadness is washed away.
Outside the lines, that color shines and makes a brand new day.
(A stick of) brown wax can't emphasize the way your eyes (just) hypnotize
Praying for a peaceful night for both of you.
Just had to check one more time before finishing some laundry and heading to bed myself tonight.
May the night be calm, quiet and filled with peace. May you both have the restful night you both need.
Lisa: Great verse! Love it!
Praying for a quiet and restful night and for just the right consistancy of blood to bring health and strength and life.
Praying that God's presence and peace would fill your heart and mind and the room where you are.
Love and hugs and prayers,
Debi
Still praying . . . my kids, esp. my 10 year old adopted from Russia, ask often how Chrissie is doing, and help pray for her and all of you.
God is still on the throne!!
Praying for a peaceful night for you and Chrissie...and healing for this precious girl.
And you're teasing us with that special announcement...
I don't post often, but I read every single post you write (I am checking my phone more than I should be for these updates!!) and pray CONSTANTLY for your baby girl. My 4-year-old princess was in the hospital for Rotavirus until last night, and you were ALL I thought about the nights and days I spent there with her.
We were obviously concerned about our baby's health, but at the end of the day what we went through was NOTHING compared to what you are going through there with Chrissie. Truly, my heart aches for you. And my faith is constantly boosted by what God is doing in your lives.
I truly believe God has big plans for your daughter, and so I continue to pray for complete healing - He can do anything! I'm sure it sometimes feels as if nothing else could possibly go wrong...and then it does...but we are all here praying, even when you don't realize it. Praying for His mighty hand to just hold her, provide in crisis and calm the storms that seem to come at you daily.
I hope you continue to have peace that that only He can give, and your princess will continue to be on my mind more often than you can imagine!! I BELIEVE IN MIRACLES!!! And she is one of them...that's already been proven time and time again.
Hang in there! You are one amazing mama.
Blessings,
Alissa
Can't wait to hear the surprise. Still praying for a quiet night for you - extra rest!!!! Chrissie will need it to show them how amazing she is and how wonderful she can heal!
Praying for a quiet night for Chrissie and rest for you both.
Praying through your night from Russia.
Lord, pour out your mercy tonight, and continue the healing in Chrissie's lungs, dissolve that clot safely. And please give Lorraine and Chrissie both peaceful nights of sleep. May Your peace guard their hearts and minds as they trust in You. AMEN!
Lord Jesus, we lift Chrissie up to you Lord. We ask for the balancing that only You can do; no increase in clot growth and no lung bleeding. We ask for a quiet night of healing Lord, no new issues and a miraculous healing of all the current ones. We ask that You keep Chrissie in the palm of your hand and shower her with Your healing kiss. We ask Lord that you give Lorraine a good night of rest and whatever small amount that might be, is sufficient for tomorrow. Lord, we beg You to heal this little Princess, so that she can enjoy her earthly family and they her. We know that Your ways are not ours, and we ask You to forgive us in our questioning ways. All Glory and Honor are Yours Mighty Father, we love and adore You. In Jesus Precious Name, Amen
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