Peace. It's one thing I've prayed daily for. I know God hears my prayers, and yours, because the peace and strength he gives my soul is amazing. I have always loved God, but until now I've never really understood the true meaning of needing Him. This passage is so truthful for my situation. It is now that I need him most and I'm able to put everything I've loved and learned about Him into practice. He has shown me mercy and given me strength when I needed it most.
Philippians 4:7-9 (NIV)
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
It's been one month since I lost my sweet boy. Since William's passing, we received test results the surgeon ran the day of his surgery. Because of his symptoms, they believed he had William's Syndrome (nothing to do with his name). This was something presented to us the day of, so we didn't have any time to look into it ahead of time. It turns out he did have William's Syndrome which is a rare, genetic disorder. It is not something that we passed down to him or something that happened to him while I was pregnant. It is a complete anomaly. I'm not a huge fan of google, but it's the best way to learn about this disorder. What is Williams Syndrome
William had it worse than most; in fact, his heart was the worst his surgeon had seen in over 20 years. He was in surgery for about 15 hours. Unfortunately, he never came off the bypass machine. The night he passed, most of you were helping us prayer for a miracle. What you may not understand is that even though he didn't make it, we are at peace with what happened that night. His suffering ended and he was finally sleeping peacefully.
There was nothing the surgeons could have done for my sweet boy. There was no solution for his heart and he would have struggled without the surgery. Had they discovered it earlier, it wouldn't have changed anything. Most WS patients aren't diagnosed until much later in infancy. We are so thankful to our pediatrician for finding it so soon. He was (and is!) in God's hands and He needed him up in heaven more than I or anyone else needed him on earth.
The morning before I lost my sweet William, my best friend sent me these encouraging words.
"Stumbled upon this and had to share with you:
In Joshua 1:9, God clearly instructs us to remember the importance of staying strong when going into battle. In fact, He commands us to be:'Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.'
Mama, you are strong. Persevering. Tough. Able to bend without breaking. Willing to be humbled to the point of humiliation. Not blinded. A hunter for wisdom. A praying-through-it woman. A courageous mama."
It's been one month since I lost my sweet William and even though some days it's easier, some days it's tougher than I would wish on any enemy. I have not broken and will not break. I look at these encouraging words and know that my heart is still so full of loving people. My life continues to thrive for my little Jack Jack and my family.
I hope you continue the prayers and continue to send us love and words of encouragement. Some days I want to dig a hole and never come out. I want to cancel all plans and stay at home so I don't have to face anyone. Other days I'm ready to take on the world. Every minute of every day is a new challenge.
I am SO thankful for the 3.5 months I had with him. It may have been a short 107 days, but they were my William's 107 days. I praise God for every. single. moment.
Sunday, August 17, 2014
Saturday, July 19, 2014
Memorial Service Information
William David Swanson
A Memorial Service for William will be held on Thursday July 24, 2014 at 11:00 am at Holy Trinity Episcopal Church (607 N Greene St, Greensboro, NC 27401). Sara and Jonathan ask that this be a celebration of William's short life with us.
In lieu of flowers, a memorial fund has been set up for a bench that they can take with them wherever the Marine Corps sends them. Click here to access the memorial fund.
The outpouring of love and prayers make them stronger every day. It's going to be a long road, but every minute of every day gets them a little closer to their new normal.
Friday, July 18, 2014
Sweet William
It's with a heavy heart that I write this blog update on Sara and Jon's behalf this morning. Last night around 9 PM, our sweet William died. His wonderful doctors, Drs Mill and McNull and everyone else who oversaw his surgeries, did everything they could to save him but by last night they found that his bleeding was too extensive. The decision was made by Jon and Sara to turn off the machine keeping him alive. He left us quickly and without any pain. Sara and Jon have deeply appreciated everyone's prayers, and need them now more than ever. No arrangements have been made to memorialize William but we will keep everyone updated through this blog.
Our family has felt so loved through this process from all of you. The outpouring of well-wishes and prayers, and Sara and Jon's own steadfast faith in God, have kept them going in this trying time. All day yesterday we knew in our hearts that things were looking bad. Our prayers for William were for him to find peace in whatever capacity God saw fit, and last night we believe that He answered our prayers by letting that sweet boy go without pain or anguish. Thank you again for all the love you've shown my sister and Jon during this time.
George
Thursday, July 17, 2014
Update
Surgery didn't go quite as planned. He had more blockage than they originally thought. The surgeon did clear all of the blockage, but when they took him off bypass his left ventricle wasn't functioning. He opened him back up and tweaked a few things and was able to get some function back. Because of this, he thought it was worth it to put him on ECMO (life support for heart and lungs). They are hoping this rests his heart enough for him to regain full function. We have a 3-5 day window and then there is nothing more they can do. We didn't get to see him until almost midnight yesterday so it was a long, long day for everyone involved. This morning they put him on dialysis to help rest his kidneys. They would not be taking these steps if they thought he couldn't recover. The doctor said it's 50/50.
Our God is bigger than this. William is His sweet little boy. We've just been blessed to call him ours on earth. Please continue praying for our family. We need strength to help him be strong on his journey.
Our God is bigger than this. William is His sweet little boy. We've just been blessed to call him ours on earth. Please continue praying for our family. We need strength to help him be strong on his journey.
Tuesday, July 15, 2014
Pre-op appointment
Hi everyone! Today we had the pre-op appointment for William. We met with the surgeon's nurse, anesthesiologist, had a chest X-ray, blood work and EKG done. It was a busy day!
The nurse clarified a lot about tomorrow's surgery. The doctor will open his chest (2-3 inch incision) and he will be put on bypass. The surgery will start at 8:00am and last about 6 hours which includes about an hour of anesthesia prep. We will be at the hospital at 6:30am to get him prepped. He is the first and only surgery for Dr. Mill tomorrow.
He will be fixing two areas of narrowing. One is the aortic valve and the other is at the top of the aortic curve. They will use donated tissue to fix these areas. The pulmonary artery also had blockage, but they believe he will grow out of that so there is no need to fix it. The nurse says it is not common for babies to have this much blockage, but it is something they have seen and have fixed.
One of the biggest concerns is his blood pressure. Since his heart is beating twice as hard (literally) as it should, they are worried that once they open the valve his body won't know what to do with a normal blood flow. Depending on his reaction will depend on his time in the PICU. They are thinking he will be there for about 3-4 days for any normal reaction. During this time he will be under sedation and have a feeding tube. He will have a lot of IVs and monitoring devices hooked up to him.
Today went as good as could be expected. Hopefully tomorrow will be the same! Thank you for the continued prayers. I'll keep you posted as much as I can!
"When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer."
-Corrie Ten Boom
The nurse clarified a lot about tomorrow's surgery. The doctor will open his chest (2-3 inch incision) and he will be put on bypass. The surgery will start at 8:00am and last about 6 hours which includes about an hour of anesthesia prep. We will be at the hospital at 6:30am to get him prepped. He is the first and only surgery for Dr. Mill tomorrow.
He will be fixing two areas of narrowing. One is the aortic valve and the other is at the top of the aortic curve. They will use donated tissue to fix these areas. The pulmonary artery also had blockage, but they believe he will grow out of that so there is no need to fix it. The nurse says it is not common for babies to have this much blockage, but it is something they have seen and have fixed.
One of the biggest concerns is his blood pressure. Since his heart is beating twice as hard (literally) as it should, they are worried that once they open the valve his body won't know what to do with a normal blood flow. Depending on his reaction will depend on his time in the PICU. They are thinking he will be there for about 3-4 days for any normal reaction. During this time he will be under sedation and have a feeding tube. He will have a lot of IVs and monitoring devices hooked up to him.
Today went as good as could be expected. Hopefully tomorrow will be the same! Thank you for the continued prayers. I'll keep you posted as much as I can!
"When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer."
-Corrie Ten Boom
Saturday, July 5, 2014
A woman who fears The Lord is to be praised
11 days until surgery
Until then....
We carry on with our normal lives. Just because we receive devastating news doesn't mean the world stops. We might wish it could...but it won't. We have to balance our normal lives with the huge elephant still standing in the room.
From the outside, William seems fine. His hands and feet get clammy and I panic at the mere sight of him breathing too heavy or quickly. Other than that, he's a normal little three month old! He is starting to kick his feet, smile and move his hands all around. He coo's and babbles and is very alert.
We've gotten a lot of the logistics figured out and I am SO thankful for family that has offered to help. Our support system is amazing and we couldn't do it with them. A lot of details are still up in the air so we are having to be very flexible and patient right now.
Emotionally, I keep reminding myself that I am strong and will remain strong for my boys. I keep going back to Proverbs 31 and trying to match up to what a wife of noble character is.
25 She is clothed with strength and dignity; she can laugh at the days to come.
26 She speaks with wisdom, and faithful instruction is on her tongue.
27 She watches over the affairs of her household and does not eat the bread of idleness.
28 Her children arise and call her blessed; her husband also, and he praises her.
29 "Many women do noble things, but you surpass them all.”
30 Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised.
31 Honor her for all that her hands have done, and let her works bring her praise at the city gate.
I've always been drawn to that passage, but now it impacts me more than it ever has.
Thank you all again for the continued thoughts, prayers, cards and everything else. We are blessed to have so many prayer chains going across the country!!
Until then....
We carry on with our normal lives. Just because we receive devastating news doesn't mean the world stops. We might wish it could...but it won't. We have to balance our normal lives with the huge elephant still standing in the room.
From the outside, William seems fine. His hands and feet get clammy and I panic at the mere sight of him breathing too heavy or quickly. Other than that, he's a normal little three month old! He is starting to kick his feet, smile and move his hands all around. He coo's and babbles and is very alert.
We've gotten a lot of the logistics figured out and I am SO thankful for family that has offered to help. Our support system is amazing and we couldn't do it with them. A lot of details are still up in the air so we are having to be very flexible and patient right now.
Emotionally, I keep reminding myself that I am strong and will remain strong for my boys. I keep going back to Proverbs 31 and trying to match up to what a wife of noble character is.
25 She is clothed with strength and dignity; she can laugh at the days to come.
26 She speaks with wisdom, and faithful instruction is on her tongue.
27 She watches over the affairs of her household and does not eat the bread of idleness.
28 Her children arise and call her blessed; her husband also, and he praises her.
29 "Many women do noble things, but you surpass them all.”
30 Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised.
31 Honor her for all that her hands have done, and let her works bring her praise at the city gate.
I've always been drawn to that passage, but now it impacts me more than it ever has.
Thank you all again for the continued thoughts, prayers, cards and everything else. We are blessed to have so many prayer chains going across the country!!
Thursday, June 26, 2014
July 16, 2014
July 16, 2014
We have a date! His heart surgery will be on July 16 8:00am at UNC Children's Hospital. We will have preop appointments and meet the surgeon earlier that week. Not much more information has been provided, but we know that he will be in ICU for a little while and we still expect a hospital stay of 2 weeks to a month for recovery.
Thank you for your continued support and prayers.
We have a date! His heart surgery will be on July 16 8:00am at UNC Children's Hospital. We will have preop appointments and meet the surgeon earlier that week. Not much more information has been provided, but we know that he will be in ICU for a little while and we still expect a hospital stay of 2 weeks to a month for recovery.
Thank you for your continued support and prayers.
Tuesday, June 24, 2014
Hurry up and wait!
Hi everyone! I wish I was coming to you with a surgery update...but no such luck! However, today we had a follow up appointment with Williams normal pediatrician. He has been with us since William was born and Jacks pediatrician before that. Can I just say that he is amazing? He is a very down to earth guy and knows when to put on his 'parent hat' to keep me from panicking. He said it could take a little while for the cardiologists to determine an approach since it's such a big hospital. If we don't hear by Friday he said he will put in a call for us.
And now we hurry up and wait!
Until then...he has put William on an iron supplement to strengthen his blood supply for surgery. We were told he will need a blood transfusion so that's a little scary!! {par for the course during this type of surgery} He is also having me add a formula powder to his breast milk to help plump him up before surgery. Anything we can do to make him stronger we will do! His incision sights from the cath are healing great and he said overall he looks good.
Emotionally, I haven't cracked yet. I'm pretty proud of that, but I know at some point I will lose it. Logistically, we have a lot to figure out. Jack is only 20 months old and to leave him for any amount of time breaks my heart. For him, I try to stay strong to keep his little life as normal as possible. I'm so lucky and blessed to have family close by that can help us through this journey.
William has an amazing group of doctors behind him...and we have a lot of positive thoughts and prayers pushing him along thanks to all of you! It truly means the world to us!
And now we hurry up and wait!
Until then...he has put William on an iron supplement to strengthen his blood supply for surgery. We were told he will need a blood transfusion so that's a little scary!! {par for the course during this type of surgery} He is also having me add a formula powder to his breast milk to help plump him up before surgery. Anything we can do to make him stronger we will do! His incision sights from the cath are healing great and he said overall he looks good.
Emotionally, I haven't cracked yet. I'm pretty proud of that, but I know at some point I will lose it. Logistically, we have a lot to figure out. Jack is only 20 months old and to leave him for any amount of time breaks my heart. For him, I try to stay strong to keep his little life as normal as possible. I'm so lucky and blessed to have family close by that can help us through this journey.
William has an amazing group of doctors behind him...and we have a lot of positive thoughts and prayers pushing him along thanks to all of you! It truly means the world to us!
Sunday, June 22, 2014
A small elephant is still an elephant
{A quote that my parents keep saying is "How do you eat an elephant? One bite at a time..." We are so frightened by the elephant in the room and we don't even know how big or small it is. Either way, it's still an elephant and it's still huge compared to anything else}
Since this whole ordeal began, we have had so many people reaching out to us. Thank you for that. We appreciate the thoughts and prayers more than you will ever know!! I want to keep you all informed as best as I can so I decided to start up this blog again. I firmly believe that God blessed us with this little boy and we are determined to be the best parents that we can be for him.
Let's start from the beginning. William went in for his two month checkup and the pediatrician detected a heart murmur. Because of his age, he referred us to a pediatric cardiologist to rule out any major issues. At the appointment with the cardiologist, they performed an echocardiogram to determine where the murmur was coming from. Originally it was thought that he had 'VSD'.
Needless to say, his appointment didn't go as we had originally thought. The echo showed signs of valve narrowing, diagnosed as aortic stenosis. We were told that these tests can be inconclusive and sometimes exaggerate blockage, so the cardiologist referred us to UNC Children's Hospital at Chapel Hill (an hour away from us).
One week later we had a cardiac catheterization performed. We arrived at the hospital at 9:00am unsure of what exactly would happen. We had doctors come speak with us and signed a number of consent forms. At 12:30pm the anesthesiologist came in to get William. He wasn't allowed to eat after 5am because it was supposed to start at 9:00am...you can imagine my patience at that point. At 3:30pm the testing was complete. Because he was so little they had some concern that he may need to stay overnight. His vitals were stable until 6:00pm so they were getting discharge paperwork ready for us. And then his heart rate jumped and oxygen levels dropped. That's when they decided to keep us overnight on the pediatric cardiology floor to monitor him (aka the CICC). Luckily, we had an uneventful night (other than not sleeping a wink) and were discharged the next morning.
Rewind a little bit...once William came out of anesthesia, the cardiologist showed us the results. The blockage was far worse than the echocardiogram showed. Remember how I said the echo usually exaggerates blockage? Well Williams was worse than they expected. Not only does he have narrowing, he has multiple areas of narrowing above and below his heart. Finding one spot is normal for this diagnosis and can be fixed pretty routinely. In his case, it is far more complicated due to the multiple areas and his age/weight. Imagine an hour glass. The part that is squeezed in the middle is like Williams valve...only it's supposed to be the same width from top to bottom. Yes, I know what you're thinking...and that is why the cardiologists are calling this 'moderate to severe' blockage. This is causing his heart to work twice as hard as normal. The blood is having to pump extra hard and fast to keep up. It is not something that can fix itself, nor is it something that can be completely fixed with surgery.
He has a team of pediatric cardiologists as well as two pediatric heart surgeons working on his case. On Monday, they will all meet and discuss what approach they will take to repair his little heart. It isn't just one opinion...it's an entire team working together. We couldn't ask for anything else to help solve this problem. We've been told to expect open heart surgery in which his heart will be put on bypass. We've also been told to expect and prepare for an extended stay of one month in the hospital. This will include time in the pediatric ICU (PICU) as well as on the pediatric cardiac floor (CICC).
And now...we wait. As much as I don't want it to be an elephant, it is. And even a small elephant is still an elephant.
Since this whole ordeal began, we have had so many people reaching out to us. Thank you for that. We appreciate the thoughts and prayers more than you will ever know!! I want to keep you all informed as best as I can so I decided to start up this blog again. I firmly believe that God blessed us with this little boy and we are determined to be the best parents that we can be for him.
Let's start from the beginning. William went in for his two month checkup and the pediatrician detected a heart murmur. Because of his age, he referred us to a pediatric cardiologist to rule out any major issues. At the appointment with the cardiologist, they performed an echocardiogram to determine where the murmur was coming from. Originally it was thought that he had 'VSD'.
Needless to say, his appointment didn't go as we had originally thought. The echo showed signs of valve narrowing, diagnosed as aortic stenosis. We were told that these tests can be inconclusive and sometimes exaggerate blockage, so the cardiologist referred us to UNC Children's Hospital at Chapel Hill (an hour away from us).
One week later we had a cardiac catheterization performed. We arrived at the hospital at 9:00am unsure of what exactly would happen. We had doctors come speak with us and signed a number of consent forms. At 12:30pm the anesthesiologist came in to get William. He wasn't allowed to eat after 5am because it was supposed to start at 9:00am...you can imagine my patience at that point. At 3:30pm the testing was complete. Because he was so little they had some concern that he may need to stay overnight. His vitals were stable until 6:00pm so they were getting discharge paperwork ready for us. And then his heart rate jumped and oxygen levels dropped. That's when they decided to keep us overnight on the pediatric cardiology floor to monitor him (aka the CICC). Luckily, we had an uneventful night (other than not sleeping a wink) and were discharged the next morning.
Rewind a little bit...once William came out of anesthesia, the cardiologist showed us the results. The blockage was far worse than the echocardiogram showed. Remember how I said the echo usually exaggerates blockage? Well Williams was worse than they expected. Not only does he have narrowing, he has multiple areas of narrowing above and below his heart. Finding one spot is normal for this diagnosis and can be fixed pretty routinely. In his case, it is far more complicated due to the multiple areas and his age/weight. Imagine an hour glass. The part that is squeezed in the middle is like Williams valve...only it's supposed to be the same width from top to bottom. Yes, I know what you're thinking...and that is why the cardiologists are calling this 'moderate to severe' blockage. This is causing his heart to work twice as hard as normal. The blood is having to pump extra hard and fast to keep up. It is not something that can fix itself, nor is it something that can be completely fixed with surgery.
He has a team of pediatric cardiologists as well as two pediatric heart surgeons working on his case. On Monday, they will all meet and discuss what approach they will take to repair his little heart. It isn't just one opinion...it's an entire team working together. We couldn't ask for anything else to help solve this problem. We've been told to expect open heart surgery in which his heart will be put on bypass. We've also been told to expect and prepare for an extended stay of one month in the hospital. This will include time in the pediatric ICU (PICU) as well as on the pediatric cardiac floor (CICC).
And now...we wait. As much as I don't want it to be an elephant, it is. And even a small elephant is still an elephant.
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