God has so graciously given us 122 days with this little fella! He's already 4 months old, and weighs over 11 pounds now! Which is quite the accomplishment for someone who started at just 4.5 lbs and has only been fed 11 days of his life!
But this little one here...
This same little one...my heart is so broken for him. Because our precious Samuel David is not really okay. I know in my posts I can sometimes make it sound so simple, but it's not as easy as checking things off a list before they put us on a plane back to Arkansas. Samuel's condition is very complicated. His intestinal issues alone are enough to baffle doctors, but add on top of that one of the more difficult cases of an extremely rare syndrome that touches multiple systems of his body, his life-long heart defect, his chronic lung disease...it seems like every attempt they make to try to better one of these areas, seems to negatively effect another. You never want to hear doctors apologize, but we have - over and over again. They've apologized for getting our hopes up. They've apologized for outcomes not being what they projected. They've apologized for "simple" procedures and surgeries causing issues they've never really seen before...
We are SO thankful for all of our doctors here, and we know they have provided the best care for our sweet boy! But Samuel's body is full of complications, and it has been a rough road.
And now it seems that this rough road may require another surgery...
We thought Samuel's fourth surgery would be his next heart surgery (which is still up in the air as to when it needs to happen), but yesterday things changed. Yesterday Samuel had a really hard day. A day full of high heart rates, panicked breathing, a lot of extra sedation, another mystery fever, and an even-more-enlarged belly. Samuel's belly increased another 2-4 cm in the past 3 days, and we know that it is making him uncomfortable. It is also causing his lungs to require more support from the ventilator as they are pushed higher and higher in his small rib cage.
Yesterday they did another CT scan to see if they could find any clues as to why his belly is getting worse, but they (again) found nothing. So we were presented with another surgery - a surgery that they are wanting to do TODAY. It will likely happen later this afternoon.
The surgery they are wanting to do is one where they don't know what they will find. At the very least, they should be able to temporarily decompress Samuel's intestines, which should provide him some relief. But the best case scenario - the outcome we are praying for - is that they may find some kink or blockage that is fixable! There may be some issue that is hidden behind his enlarged bowel loops, something that isn't showing up on the scans.
Over the past 20 hours we have prayed for wisdom - we have asked God to give peace if surgery today is the right step forward. We feel like He has provided that peace. We pray daily that God will give wisdom to the doctors as they guide us along this journey, and over the past 20 hours all of the doctors have come to the same conclusion about this surgery.
So we are planning to move forward. We are planning to send our brave little warrior off to the OR this afternoon...again. Hopefully this will bring Samuel one step closer to home. We are praying for miraculous outcomes!
But at the same time it is so hard...it is so hard to send Samuel off to another surgery - especially when the outcomes of the surgery are so unknown. We are praying that this surgery will provide Samuel with some relief so we can see more of his precious smiles!
This same little one...my heart is so broken for him. Because our precious Samuel David is not really okay. I know in my posts I can sometimes make it sound so simple, but it's not as easy as checking things off a list before they put us on a plane back to Arkansas. Samuel's condition is very complicated. His intestinal issues alone are enough to baffle doctors, but add on top of that one of the more difficult cases of an extremely rare syndrome that touches multiple systems of his body, his life-long heart defect, his chronic lung disease...it seems like every attempt they make to try to better one of these areas, seems to negatively effect another. You never want to hear doctors apologize, but we have - over and over again. They've apologized for getting our hopes up. They've apologized for outcomes not being what they projected. They've apologized for "simple" procedures and surgeries causing issues they've never really seen before...
We are SO thankful for all of our doctors here, and we know they have provided the best care for our sweet boy! But Samuel's body is full of complications, and it has been a rough road.
And now it seems that this rough road may require another surgery...
We thought Samuel's fourth surgery would be his next heart surgery (which is still up in the air as to when it needs to happen), but yesterday things changed. Yesterday Samuel had a really hard day. A day full of high heart rates, panicked breathing, a lot of extra sedation, another mystery fever, and an even-more-enlarged belly. Samuel's belly increased another 2-4 cm in the past 3 days, and we know that it is making him uncomfortable. It is also causing his lungs to require more support from the ventilator as they are pushed higher and higher in his small rib cage.
Yesterday they did another CT scan to see if they could find any clues as to why his belly is getting worse, but they (again) found nothing. So we were presented with another surgery - a surgery that they are wanting to do TODAY. It will likely happen later this afternoon.
The surgery they are wanting to do is one where they don't know what they will find. At the very least, they should be able to temporarily decompress Samuel's intestines, which should provide him some relief. But the best case scenario - the outcome we are praying for - is that they may find some kink or blockage that is fixable! There may be some issue that is hidden behind his enlarged bowel loops, something that isn't showing up on the scans.
Over the past 20 hours we have prayed for wisdom - we have asked God to give peace if surgery today is the right step forward. We feel like He has provided that peace. We pray daily that God will give wisdom to the doctors as they guide us along this journey, and over the past 20 hours all of the doctors have come to the same conclusion about this surgery.
So we are planning to move forward. We are planning to send our brave little warrior off to the OR this afternoon...again. Hopefully this will bring Samuel one step closer to home. We are praying for miraculous outcomes!
But at the same time it is so hard...it is so hard to send Samuel off to another surgery - especially when the outcomes of the surgery are so unknown. We are praying that this surgery will provide Samuel with some relief so we can see more of his precious smiles!
Please join with us in praying!
We know that God has led us to this place.
We know that God is holding Samuel in His loving arms.
We know that God is not perplexed in the least by all of Samuel's medical complexities.
We know that God could heal Samuel in an instant.
We know that God works all things together for good.
We TRUST Him! We trust His plan...
This is His story, and it is ALL for His glory.
We know that God is holding Samuel in His loving arms.
We know that God is not perplexed in the least by all of Samuel's medical complexities.
We know that God could heal Samuel in an instant.
We know that God works all things together for good.
We TRUST Him! We trust His plan...
This is His story, and it is ALL for His glory.
Sending prayers for your beautiful and strong Samuel. I love seeing his smiles in your photos. He is truly a blessing and I hope with all my might that they find a solution to his tummy troubles.
ReplyDeleteHannah, Seth and Samuel! You are on my heart and in my prayers. Thank you for letting His light shine through your lives - in the good times and the bad.
ReplyDeleteTranessa