And the roller coaster rides on.
We went from 2 to 6 back to 2 CCs overnight. Our puff still needs more rest, and is telling us as much.
While we want him to cycle off of ECMO, we ultimately want him to cycle successfully. So, like Leo and Rafa Bird, we'll wait by his side until the time is right.
In other news, he had a largely quiet night, though it looks like his peripheral IV was giving him some trouble. They'll probably need to put a new one in today at some point. He seems to big a big fan of his Sleep Sheep, and his nurses are, thus far, very happy to have an additional trick of the trade to help him settle himself down (other than drugs, obviously).
At this point, we're praying for:
1.) Rafa's incision to continue to clot and heal.
2.) His lungs to "dry out."
3.) His ECMO circuit to continue to hold up.
And eventually...
4.) His cycling off of ECMO to be successful.
Pick your goal, and focus on it!
Thursday, August 6, 2009
Wednesday, August 5, 2009
Day 22-Do we dare to cycle?
That's the question on most people's tongues in Rafa's world.
With his big surgery over and done with, Dr. Jennings and the respiratory team plan to consider cycling as soon as tomorrow! While this is an extremely exciting prospect, nothing in the land of CDH comes in simple packaging. Rafa's lung volumes have suffered a bit of a setback (from 12 CCs down to 4 CCs) since his surgery, for all of the usual reasons (fluid, darn fluid), but if things can get cleared up by then, they might still give it a go! In addition to that, cycling is no walk in the park. It's an at least one week process, and at any time, Rafa might tell us this is all too much for him, and it's back on ECMO we go. Why is this such a big deal? Because we've already been on ECMO for 22 days and in many ways, the sooner we can get off, the better.
Which leaves our precious one in the middle.
Ultimately, if it's a difference of a day or two, which it looks like it would be, that's OK. We can be patient. Rafa will take this at his own pace, as he has done from the beginning. And it's our job to hold on to the tail of his comet and ride it out!
Keep up the prayer chains and fairy dust! We're so close to getting to a safer, exciting place, and your help is really paying off!
With his big surgery over and done with, Dr. Jennings and the respiratory team plan to consider cycling as soon as tomorrow! While this is an extremely exciting prospect, nothing in the land of CDH comes in simple packaging. Rafa's lung volumes have suffered a bit of a setback (from 12 CCs down to 4 CCs) since his surgery, for all of the usual reasons (fluid, darn fluid), but if things can get cleared up by then, they might still give it a go! In addition to that, cycling is no walk in the park. It's an at least one week process, and at any time, Rafa might tell us this is all too much for him, and it's back on ECMO we go. Why is this such a big deal? Because we've already been on ECMO for 22 days and in many ways, the sooner we can get off, the better.
Which leaves our precious one in the middle.
Ultimately, if it's a difference of a day or two, which it looks like it would be, that's OK. We can be patient. Rafa will take this at his own pace, as he has done from the beginning. And it's our job to hold on to the tail of his comet and ride it out!
Keep up the prayer chains and fairy dust! We're so close to getting to a safer, exciting place, and your help is really paying off!
Day 22-Taking time out to reflect
Little Man had a restful, quiet night last night, thank God! His blood pressure was a little low, thanks to the heavy sedatives coursing through his veins, so he was put back on a small dose of dopamine (the blood pressure meds he'd successfully kicked toward the end of his first week on Earth). Other than that, he's sleeping snugly, as every baby should be.
I wanted to take a minute to share with you a couple of entries I found that very accurately describe what we're going through as a family. They both happen to focus on a mother's experience, but I'm sure if you asked Daddy or Grandma Sherrie, they would certainly echo these sentiments.
Whatever your belief system, wherever you hang your spiritual hat, these words ring true. The first is an entry from a blog entitled, "Tiptoeing Through the Tulips," written by the mother of a CDH boy who was also treated at Children's, and the second was written by Erma Bombeck (acid flashback!) in 1980. Thank you, Chanda, for including this story on your blog!
Tuesday, June 9, 2009
Exactly The Same Completely Different.
I found myself explaining Graham for the eleventythousandth time yesterday.
"Birth defect, blah blah, ICU, blah blah, mostly dead, blah blah, miracle, blah, feeding tube, Deaf, blah blah blah, yadda yadda yadda."
I found myself recieving the You Poor Thing look for the eleventythousandth time, and then this comment;
"But you love him just the same right?"
Ummm.... right? I guess? No, actually. Not right. Not the same at all.
I don't love him the same as I love Dottie.
Dottie was all mine the second she was born. All mine to take care of; to feed, and change, and clothe and snuggle and love. Every squeak and squeal as a newborn and infant would elicit a reaction I could feel in every cell of my body. She's always felt physically part of me. Even now at two years old I can't get close enough to her.
She is a perfect little piece of me, walking and talking all on her own, but I can't tell where I end and she begins.
I want to absorb her, inhale her, consume her. I breathe her in, squish and squeeze her, snuzzle her snuzzly parts and it's never enough. It's overwhelming and nearly painful at times.
Like every Mommy and Baby should be, we are our own private little Universe. A place just for us, where nothing and no one can touch us.
The Universe was a much different place for Graham and me. He left my body and was thrust into the arms of strangers, torn away from me violently before any bond could be formed.
I sat by his bedside week after week, wanting him to live, assuming he was going to die, and not seeing him as mine. I held the love back, protecting myself from the hurt I knew was coming when he left us.
It seems selfish now, but I was in survival mode then. I needed to focus on my survival while the doctors focused on his.
Then at around 6 weeks old, he let us know that he'd decided to stay and all of a sudden I had a baby. The bond started to form as I was finally allowed to change his diaper and bathe him and even hold him.
Normal Mommy/Baby bonding this was not. This little thing had fought off the most fearsome adversary, and won. I marvelled at him, revered him, and felt unworthy to be his mother. How could such an important little person be mine? What he'd done was bigger than anything I ever thought would happen in my life, and he was mine?
As humbled as I was to be allowed to be his Mommy, I took him by the little hand and joined him in his fight.
Together we fended off the enemies in the ICU; infections, addictions, wounds, mean nurses. We hid in the trenches and dodged bullets. We fought off all that CDH threw at us and backed out of that ICU carefully, waiting for the next surprise attack.
Seasoned war buddies now, the remaining 6 weeks of his hospital stay were a piece of cake compared to the battle we'd already waged. Nobody dared mess with us. He called the shots and I backed his little ass up.
That's how it's been since. I still don't feel worthy to be entrusted with such a special life. He is other wordly and beyond my comprehension. I may have to look down to see him, but I'm always looking up at him.
I know he's mine, but he's far more than just mine. He belongs to the dozens of doctors, nurses and therapists who kept him alive. He belongs to science and medicine. He belongs to the CDH community and the Deaf community.
I could never hold him as close as I hold Dottie. I don't have the same claim to him as I do to her.
He is his own Universe.
Bigger than all of us.
Gift of Motherhood by Erma Bombeck in 1980
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecelia. Rudlege, Carrie; twins; patron saints... give her Gerald. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and necessary in a mother. You see, the child I'm going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles, "A mirror will suffice."
I wanted to take a minute to share with you a couple of entries I found that very accurately describe what we're going through as a family. They both happen to focus on a mother's experience, but I'm sure if you asked Daddy or Grandma Sherrie, they would certainly echo these sentiments.
Whatever your belief system, wherever you hang your spiritual hat, these words ring true. The first is an entry from a blog entitled, "Tiptoeing Through the Tulips," written by the mother of a CDH boy who was also treated at Children's, and the second was written by Erma Bombeck (acid flashback!) in 1980. Thank you, Chanda, for including this story on your blog!
Tuesday, June 9, 2009
Exactly The Same Completely Different.
I found myself explaining Graham for the eleventythousandth time yesterday.
"Birth defect, blah blah, ICU, blah blah, mostly dead, blah blah, miracle, blah, feeding tube, Deaf, blah blah blah, yadda yadda yadda."
I found myself recieving the You Poor Thing look for the eleventythousandth time, and then this comment;
"But you love him just the same right?"
Ummm.... right? I guess? No, actually. Not right. Not the same at all.
I don't love him the same as I love Dottie.
Dottie was all mine the second she was born. All mine to take care of; to feed, and change, and clothe and snuggle and love. Every squeak and squeal as a newborn and infant would elicit a reaction I could feel in every cell of my body. She's always felt physically part of me. Even now at two years old I can't get close enough to her.
She is a perfect little piece of me, walking and talking all on her own, but I can't tell where I end and she begins.
I want to absorb her, inhale her, consume her. I breathe her in, squish and squeeze her, snuzzle her snuzzly parts and it's never enough. It's overwhelming and nearly painful at times.
Like every Mommy and Baby should be, we are our own private little Universe. A place just for us, where nothing and no one can touch us.
The Universe was a much different place for Graham and me. He left my body and was thrust into the arms of strangers, torn away from me violently before any bond could be formed.
I sat by his bedside week after week, wanting him to live, assuming he was going to die, and not seeing him as mine. I held the love back, protecting myself from the hurt I knew was coming when he left us.
It seems selfish now, but I was in survival mode then. I needed to focus on my survival while the doctors focused on his.
Then at around 6 weeks old, he let us know that he'd decided to stay and all of a sudden I had a baby. The bond started to form as I was finally allowed to change his diaper and bathe him and even hold him.
Normal Mommy/Baby bonding this was not. This little thing had fought off the most fearsome adversary, and won. I marvelled at him, revered him, and felt unworthy to be his mother. How could such an important little person be mine? What he'd done was bigger than anything I ever thought would happen in my life, and he was mine?
As humbled as I was to be allowed to be his Mommy, I took him by the little hand and joined him in his fight.
Together we fended off the enemies in the ICU; infections, addictions, wounds, mean nurses. We hid in the trenches and dodged bullets. We fought off all that CDH threw at us and backed out of that ICU carefully, waiting for the next surprise attack.
Seasoned war buddies now, the remaining 6 weeks of his hospital stay were a piece of cake compared to the battle we'd already waged. Nobody dared mess with us. He called the shots and I backed his little ass up.
That's how it's been since. I still don't feel worthy to be entrusted with such a special life. He is other wordly and beyond my comprehension. I may have to look down to see him, but I'm always looking up at him.
I know he's mine, but he's far more than just mine. He belongs to the dozens of doctors, nurses and therapists who kept him alive. He belongs to science and medicine. He belongs to the CDH community and the Deaf community.
I could never hold him as close as I hold Dottie. I don't have the same claim to him as I do to her.
He is his own Universe.
Bigger than all of us.
Gift of Motherhood by Erma Bombeck in 1980
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecelia. Rudlege, Carrie; twins; patron saints... give her Gerald. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and necessary in a mother. You see, the child I'm going to give her has her own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles, "A mirror will suffice."
Tuesday, August 4, 2009
Now that surgery is behind us...
What's next, you might ask?
Well, our baby needs to heal, that's for sure. He went through quite the physical roller-coaster ride himself today, to match the emotional one the adults in his life were on.
Now, we watch his lung growth and ECMO circuit very carefully. We need him to have the necessary time to recover from his surgery, for his lungs to continue to blossom, and for his ECMO circuit to NOT decide to clot up before Rafa's ready for a run at coming off of ECMO. It will be a lot for his body to handle to juggle all three of those variables, and we've just gotten him on the other side of a hill to climb.
Please concentrate your efforts on this: a steady, speedy recovery, an ECMO circuit that continues to be relatively clot-free, and lungs that are up to the task of inhaling and exhaling breath sooner rather than later.
This is a critical and delicate balance to be maintained, one that must remain just so in order for Rafa to have a shot at an ECMO-free existence.
Thank you, friends! Thank you thank you!
Well, our baby needs to heal, that's for sure. He went through quite the physical roller-coaster ride himself today, to match the emotional one the adults in his life were on.
Now, we watch his lung growth and ECMO circuit very carefully. We need him to have the necessary time to recover from his surgery, for his lungs to continue to blossom, and for his ECMO circuit to NOT decide to clot up before Rafa's ready for a run at coming off of ECMO. It will be a lot for his body to handle to juggle all three of those variables, and we've just gotten him on the other side of a hill to climb.
Please concentrate your efforts on this: a steady, speedy recovery, an ECMO circuit that continues to be relatively clot-free, and lungs that are up to the task of inhaling and exhaling breath sooner rather than later.
This is a critical and delicate balance to be maintained, one that must remain just so in order for Rafa to have a shot at an ECMO-free existence.
Thank you, friends! Thank you thank you!
Day 21-"When I look at you, I know it's gonna be..."
A lovely day!
Rafael James Carlos Escobar is officially out of surgery and healing well! Here are some highlights:
His surgery began around 8:30 this morning and wrapped up around 1:30 this afternoon, after Mommy, Daddy, and Grandma Sherrie arrived at the hospital for a 6:30 call. The wheels of medical progress grind slow--what can we say?
Rafa remained stable throughout the whole surgery, even though he had some issues with bleeding when they attempted to attach his aorta to his chest wall (all of which was resolved quickly--apparently, Mommy was a bleeder during her c-section! Perhaps it runs in the family.)
Another bronchoscopy and echo were done after the procedure was finished to be sure that 1) the right airway was going to respond to the lack of pressure (so far so good, it did), and 2) that his heart and cannulas were still in good shape (they are).
Dr. Jennings actually SAW his lung tissue on both sides, which he says is nice and pink and full of growing alveoli, the grape sacs you need in order to breathe.
And last but not least, we got to meet Dr. Jennings' sons who were visiting their dad at the hospital. What a magical moment, especially since it re-confirmed for us his commitment to our son. He's a daddy. He knows.
Saying "thank you" to the extended branches of Team Rafa, in heaven and on earth, seems almost trivial in comparison to the gratitude we feel. For the love of strangers, medical personnel (Nurse Melissa and ECMO Ken wore their Team Rafa t-shirts today!), friends, family, and everyone in between, we are most humbly thankful.
And as for our poker game in the sky, and God, the meanest dealer this side of Vegas?
We praise your names, in the name of our supernatural braveheart.
Rafael James Carlos Escobar is officially out of surgery and healing well! Here are some highlights:
His surgery began around 8:30 this morning and wrapped up around 1:30 this afternoon, after Mommy, Daddy, and Grandma Sherrie arrived at the hospital for a 6:30 call. The wheels of medical progress grind slow--what can we say?
Rafa remained stable throughout the whole surgery, even though he had some issues with bleeding when they attempted to attach his aorta to his chest wall (all of which was resolved quickly--apparently, Mommy was a bleeder during her c-section! Perhaps it runs in the family.)
Another bronchoscopy and echo were done after the procedure was finished to be sure that 1) the right airway was going to respond to the lack of pressure (so far so good, it did), and 2) that his heart and cannulas were still in good shape (they are).
Dr. Jennings actually SAW his lung tissue on both sides, which he says is nice and pink and full of growing alveoli, the grape sacs you need in order to breathe.
And last but not least, we got to meet Dr. Jennings' sons who were visiting their dad at the hospital. What a magical moment, especially since it re-confirmed for us his commitment to our son. He's a daddy. He knows.
Saying "thank you" to the extended branches of Team Rafa, in heaven and on earth, seems almost trivial in comparison to the gratitude we feel. For the love of strangers, medical personnel (Nurse Melissa and ECMO Ken wore their Team Rafa t-shirts today!), friends, family, and everyone in between, we are most humbly thankful.
And as for our poker game in the sky, and God, the meanest dealer this side of Vegas?
We praise your names, in the name of our supernatural braveheart.
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