First of all, I would like to thank all the families who have lost loved ones fighting for our flag. Today while Ashley and Lori had some time with Landen, Skip and I took the girls over to Boston Common. As we walked by the flags representing "Massachusetts’ fallen heroes from the Civil War to present day" I said to Maddie "...there are over 37,000 flags here, isn't that crazy..." her response was "no Dad, that's sad!"....I couldn't have said it better myself! Our freedom, our security and our ability to live in a country that supports innovation and medical breakthroughs to support human life (such as this amazing hospital) comes at a great cost, and honestly I think that sometimes the long term effects of living through war can sometimes be as bad for some as dying in it. My prayer is that not one of us forgets that cost, nor do we take it for granted.
Day 5 Update:
So as we suspected, Ashley being discharged from the hospital was a hard transition. On one side we are so happy to have the time with our girls again, but on the other we know Landen is here at Children's. Of course we will work out logistics to make sure that Landen has someone here, but no amount of planning can remove the fact that its hard. I pray that we eventually work into a rhythm that works for Ashley, the girls and Me so that we minimize the pain of not having him home. Until then we will continue to live each moment at a time. If I have learned one thing in life, it is this. You never get a moment back. Once you have lived it, its gone forever. Knowing this, its important to enjoy every moment as though its your last. No matter the circumstances, there will always be something positive you can pull from a situation and as long as you focus on that one positive thing, it will help you process all the tough things in the meantime! Besides, there is one really big thing that helps Ashley and I in moments like this. Its realizing that no matter what we think, do, or say....our power is limited. I believe that God calls us to do EVERYTHING we possibly can do to help our son, yet ultimately it is our of our hands. Sometimes there is a great peace in knowing that. This really is something that can only come through faith, and not something I can read, or reassure (closest word to what I mean) myself.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:25-26
Day 6 update:
Yep, the girls came and we had a nice time in Boston. But while we were out, Ashley had a chance to feed, cuddle and hug the crap out of Landen :) He is eating so well, and the nurses mention that first as soon as we come back in the room from any trip. This is a really big deal on so many levels.
He did end up having an echo today as well. His PDA is still open, but shows signs of closing slowly which is what we want ultimately. He does have a little higher respiration rate than we want, which is likely due to several things. One of which is the fact that he is currently getting too much blood to his lungs (as I understand it). This is causing the frequency of his breaths to increase to compensate for reduced 02 saturation. With that said, his 02 sats are still very good, but we will continue to watch them.
Dr. Tworetzky did drop in (he is on call this weekend) and talked to us for a bit. He confirmed that he reviewed the echo results and he still believes that a catheter procedure will be needed, but waiting doesn't hurt. I am just so happy to have him as our doctor. It was comforting to see him come in today with jeans and boat shoes as he can relate to Ashley and I in a real way, yet he also has so many years of experience and a vast knowledge of every intricate detail of what Landen is going through. What a blessing to be here!
Tomorrow is a new day. Our hope is that we will have an updated echo and the PDA is closed. The hope is that his ASD also opens a bit and his lungs have a chance to recover from the stress they are on (not extraordinary stress, but not what we want either).
Thank you all for the thoughts and prayers! Keep them coming :)
The reality is that life is a precious gift. We are just so blessed to have the life we do, even though it is proving to be challenging at the moment. Please remember to love the life you have, and never take a moment for granted. You will never get that moment back!
Enjoying the journey,
George, Ashley, Madison, Lyla and Landen :)
Day 5 Update:
So as we suspected, Ashley being discharged from the hospital was a hard transition. On one side we are so happy to have the time with our girls again, but on the other we know Landen is here at Children's. Of course we will work out logistics to make sure that Landen has someone here, but no amount of planning can remove the fact that its hard. I pray that we eventually work into a rhythm that works for Ashley, the girls and Me so that we minimize the pain of not having him home. Until then we will continue to live each moment at a time. If I have learned one thing in life, it is this. You never get a moment back. Once you have lived it, its gone forever. Knowing this, its important to enjoy every moment as though its your last. No matter the circumstances, there will always be something positive you can pull from a situation and as long as you focus on that one positive thing, it will help you process all the tough things in the meantime! Besides, there is one really big thing that helps Ashley and I in moments like this. Its realizing that no matter what we think, do, or say....our power is limited. I believe that God calls us to do EVERYTHING we possibly can do to help our son, yet ultimately it is our of our hands. Sometimes there is a great peace in knowing that. This really is something that can only come through faith, and not something I can read, or reassure (closest word to what I mean) myself.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:25-26
Day 6 update:
Yep, the girls came and we had a nice time in Boston. But while we were out, Ashley had a chance to feed, cuddle and hug the crap out of Landen :) He is eating so well, and the nurses mention that first as soon as we come back in the room from any trip. This is a really big deal on so many levels.
He did end up having an echo today as well. His PDA is still open, but shows signs of closing slowly which is what we want ultimately. He does have a little higher respiration rate than we want, which is likely due to several things. One of which is the fact that he is currently getting too much blood to his lungs (as I understand it). This is causing the frequency of his breaths to increase to compensate for reduced 02 saturation. With that said, his 02 sats are still very good, but we will continue to watch them.
Dr. Tworetzky did drop in (he is on call this weekend) and talked to us for a bit. He confirmed that he reviewed the echo results and he still believes that a catheter procedure will be needed, but waiting doesn't hurt. I am just so happy to have him as our doctor. It was comforting to see him come in today with jeans and boat shoes as he can relate to Ashley and I in a real way, yet he also has so many years of experience and a vast knowledge of every intricate detail of what Landen is going through. What a blessing to be here!
Tomorrow is a new day. Our hope is that we will have an updated echo and the PDA is closed. The hope is that his ASD also opens a bit and his lungs have a chance to recover from the stress they are on (not extraordinary stress, but not what we want either).
Thank you all for the thoughts and prayers! Keep them coming :)
The reality is that life is a precious gift. We are just so blessed to have the life we do, even though it is proving to be challenging at the moment. Please remember to love the life you have, and never take a moment for granted. You will never get that moment back!
Enjoying the journey,
George, Ashley, Madison, Lyla and Landen :)
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