I looked up the meaning of the name "Brynn". It means "hill". You have probably heard the poem, "Monday's child is fair of face, Tuesday's child is full of grace...". I couldn't remember what Thursday's child was, so I looked it up since Brynn was born on a Thursday, and it says, "Thursday's child has far to go". Isn't that the truth? Brynn does have far to go, and it will always be an uphill battle, but I'm prepared to be right by her side, holding her tiny hand throughout her journey. Medically, there is nothing I can do for her while she is in the hospital, but I want her to know that her Mommy never left her side, even when times were so scary that I wanted to close my eyes so tight, cover my ears and cower in the corner. I want her to know that I was brave for her and stood there and prayed and never left the room so she wouldn't have to go it alone.
As I lie in bed at night I can feel my heart beating, and I feel so guilty, so unworthy of having such a strong, healthy heart. I wish I could trade hearts with Brynn. I walk through the ICU and I see all the precious children in their beds, many on ventilators, many unable to get out of bed, and I feel so guilty for being able to walk around, to eat, and to say "I'm healthy". Brynn has taken a piece of just about everyone's heart that has seen her or heard her story. I wish I could take all of those pieces and sew them together and give her a new heart. No more waiting. She would have enough pieces to make many hearts I'm sure.
Brynn is supposed to have another heart cath around the 15th of March to evaluate her readiness to have the Glenn procedure. After her heart cath, the surgeons will decide if Brynn's little heart can withstand this operation. I pray that she gets her perfect heart before then, so that she won't have to undergo this operation. This is the second operation that she was supposed to go through originally. It will be a necessary surgery at some point because she is outgrowing her B-T shunt. The purpose of the Glenn operation is to remove the B-T shunt and redirect venous blood from her head and upper limbs to her lungs, thereby bypassing her tiny, non-functioning right ventricle.
Brynn has been placed on more medications to keep her calm and allow her little heart to rest. She is on clonidine, morphine, ativan and valium. It is so sad to see her so groggy and sleepy most of the time, but I know that this is not forever and that it allows her little heart to rest. She is such a fighter because when she does wake up, she insists on coo-ing and chatting up anyone around her!
Someday, Brynn, Mommy will carry you out of this hospital for good, and I won't be afraid anymore to make you mad by giving you a bath or panic when you cry out of the fear that you could die.
Scott and I received many cards of encouragement from Sally Curbo's classes at Northside. I was in tears after reading the first card, and I continued crying up until I finished reading the last one. What precious children! I wish their parents could read the sweet things their children wrote to us. I will treasure those cards as long as I live. To the mothers and fathers of these children, you are truly blessed! Thank you to Mrs. Curbo and these children for doing this for us. The tears we shed were happy tears.
I want to dedicate this post to my uncle, Dusty. He would have been 62 years old today. He had Down's Syndrome, and passed away just one month before Brady was born. He always prided himself on how many nieces and nephews he had! He would have loved Brady and Brynn so much! I love you Dusty!
Sunday, March 7, 2010
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February 15, 2009
Hello everyone! Well, Valentine's Day has come and gone...we were hoping Brynn would have received a new heart on that day. It wasn't meant to be, but we won't get discouraged!
Brynn has had a busy day today. I discovered that there might be a problem with Brynn's feeding tube. Sure enough, the x-ray showed that it had migrated out of her tummy. That meant she would need it to be taken out and replaced. She did get very upset and her heart rate went up, but she calmed down and I just laid her down for a long night's rest!
If Brynn hasn't received a new heart within the next month, the doctors want to do another cardiac catheterization and plan for the Glenn procedure. It is a surgery to remove the B-T shunt, which she will ultimately outgrow. It will also upgrade her condition to a more stable one.
She is just over 11 pounds (!) and the doctors and nurses are so excited. One of her doctors said that her thighs are really filling out, but that she hasn't reached thunder thigh status quite yet!
I'm going to try to post some pictures, so stay tuned!
Love to you all,
Amy
Brynn has had a busy day today. I discovered that there might be a problem with Brynn's feeding tube. Sure enough, the x-ray showed that it had migrated out of her tummy. That meant she would need it to be taken out and replaced. She did get very upset and her heart rate went up, but she calmed down and I just laid her down for a long night's rest!
If Brynn hasn't received a new heart within the next month, the doctors want to do another cardiac catheterization and plan for the Glenn procedure. It is a surgery to remove the B-T shunt, which she will ultimately outgrow. It will also upgrade her condition to a more stable one.
She is just over 11 pounds (!) and the doctors and nurses are so excited. One of her doctors said that her thighs are really filling out, but that she hasn't reached thunder thigh status quite yet!
I'm going to try to post some pictures, so stay tuned!
Love to you all,
Amy
Hi! This is Ashleigh...we met "ironically" when you called in at BCBS! I was reading your post and it reminded me of the song, The Climb, by Miley Cyrus...if you havn't heard it here's the lyrics...
ReplyDeleteI can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa
Logan was born on a Thursday too...and it was climb...one that we knew we could only take one day at a time...Now, our hospital stay was nothing like Brynn's...but it was still very very difficult. Keep your faith, Keep your faith held high! And remember, the furthest you can fall, is right in the palm of God's hands!! We are praying for your little one, and crossing our fingers for a lucky st. paddy's day for ya!! ::hugs::
Ashleigh
Thank you Ashleigh! I think it was God that allowed us to cross paths. It's His way of saying, "See Amy, I'm still here with you and Brynn". I have always loved this song by Miley. Thank you for posting the lyrics!
ReplyDelete