This will be our last post in 2008. We really thought we would be home by now, but it looks like we will be going home in 2009, hopefully soon. We are still waiting for several issues to be resolved before Braden will be discharged from Children's. He moved to the floor on Saturday, December 27. Being moved out of the Cardiac ICU felt like real progress. The milestones Braden needs to reach include being weaned off pain meds, keeping food down, training for Darth and I on his pacemaker, and having acceptable chest x-rays. We take turns staying with him at the hospital overnight, while the other parent stays with our girls. It has been a pretty good arrangement. The one at the hospital never gets much sleep so alternating helps us get a decent night's sleep at least every other night! It is taking a long time to write this because I was the hospital parent---not much sleep to report. Braden was super cute this morning. I was able to carry him to his chest x-ray. He was very bright-eyed, glad to see something different than his hospital room I think. He is looking GREAT and his stats looks wonderful too. Please pray the needed criteria will be met soon so we can return home.
-Darth & Jenni
Wednesday, December 31, 2008
Saturday, December 27, 2008
Pictures of Braden's journey
Left to right, top to bottom:
1. Getting ready to leave for Seattle
2. "I surrender!" Sleeping with mitts on to keep feeding tube in
3. Daddy, Braden and the Mariner Moose
4. Surgery Day
5. Back in the room following open heart surgery
6. After chest closure
7. Still on the respirator
8. Santa Braden
9. "Me? Cute?!" Finally a glimpse of the real Braden
10. "Merry Christmas Mommy!" First time snuggling since surgery
11. Holiday Greetings from the Creeks
12. Big boy bed and enjoying his Christmas present, a Winnie the Pooh mobile
1. Getting ready to leave for Seattle
2. "I surrender!" Sleeping with mitts on to keep feeding tube in
3. Daddy, Braden and the Mariner Moose
4. Surgery Day
5. Back in the room following open heart surgery
6. After chest closure
7. Still on the respirator
8. Santa Braden
9. "Me? Cute?!" Finally a glimpse of the real Braden
10. "Merry Christmas Mommy!" First time snuggling since surgery
11. Holiday Greetings from the Creeks
12. Big boy bed and enjoying his Christmas present, a Winnie the Pooh mobile
Friday, December 26, 2008
Friday post-op
A quick update from today's surgery:
- Braden was in the operating room for just under two hours. (This was his third trip to the O.R. in two weeks!)
- His temporary pacemaker and wires were disconnected, being replaced by his "permanent" pacer and single lead connected to his right ventricle.
- After surgery, Dr. Permut told Jenni and I that he was pleased with how the procedure went.
- Now all Braden needs is time to heal. We pray that his body will respond well, with no complications.
- As he progresses, the doctors will determine when he can leave CICU and move to the floor. One step closer to home...
Thank you for your continued prayers,
Darth
We Are Blessed
Happy Day-After-Christmas! Here's Braden's update:
Braden has just gone into surgery to have a permanent pacemaker installed. Darth and I really have been praying for a miracle in this area, hoping to avoid yet another procedure. Things have not gone as we would have prefered. However, if we have been reminded of anything over the past several days, it is that God is God and we are not! Sometimes we seem to try to take on the advisory committee kind of approach to our requests of the Lord. This issue in particular has been a real painful one to release to His will. We know Jesus heals and that He responds to our faith and answers prayer. When He doesn't answer in the way we want Him to, it challenges our faith and sometimes even shakes it. We have had a rough couple of days, praying, crying, pleading, and even being angry, questioning why our infant son has to go through so much. We have been really believing for a miracle concerning the heart block. Many of you have been right there with us, helping us through these intense days. We could not have come out with the peace we are currently experiencing without you helping to carry us through it. We actually hit a point of exhaustion trying to negotiate with God and finally had to say, okay, we give up, this is your thing not ours and we trust and praise you regardless of the situation.
Earlier today, when we got to Braden's room, the team of doctors was there and were discussing some activity the ventricle was conducting. It was not consistent, but it was there. We were so excited to hear even that. There will just be a ventricular lead placed with today's surgery and it is needed at this point, but later on, if full function returns, it will just be back-up. Every day we wake up and say, Lord this would be a great day for a miracle. So, today's news was so encouraging, especially with the pacemaker surgery being the same day. Braden is just plain a miracle anyway. Today in our consult with the surgeon, Dr. Permut, he was saying that Braden's VSD is the largest he or Dr. Cohen have ever seen, in their combined years of experience. The fact that it was able to be closed at all is amazing. Yesterday Dr. Cohen called it monstrous.
On another note, we want to extend our gratitude to several special groups of people. Some are even individuals we have never met, but who have been such a blessing. First, thank you to the wonderful group of families (Dennys, Guntermans, Wards, Guys, Walkers, Tris, Chapmans, Evans, & Giaudrones) that sent us a gift basket, gift cards, and presents. You have never even met us and yet you were so loving and generous in a really practical way. THANK YOU!
Next, we want to thank another amazing group of people, our "heart" family. We have been so encouraged by the input of other families that have been there and done that with congenital heart defects and surgeries. We have been through an extreme crash course in our education and it has been painful. Your support has helped carry us through the ups and downs of these difficult days. Though we may not have contacted you directly, we have read your input and have benefited from your encouragement. Thank you, thank you, thank you!
Lastly, to those of you who have prayed us through the last week, when we were feeling so low and discouraged, thank you for listening to the Lord and for praying at odd hours of night and day. We really needed that support and it made all the difference for us in facing today and the acceptance of God's will over our's.
We will update you after Braden's surgery is completed. We are praying for no infection to set in from today's incision, for good lung function following another brief time on the ventilator, and great recovery over all. We just really want to go HOME!!!!
We are blessed!
-Darth & Jenni
Braden has just gone into surgery to have a permanent pacemaker installed. Darth and I really have been praying for a miracle in this area, hoping to avoid yet another procedure. Things have not gone as we would have prefered. However, if we have been reminded of anything over the past several days, it is that God is God and we are not! Sometimes we seem to try to take on the advisory committee kind of approach to our requests of the Lord. This issue in particular has been a real painful one to release to His will. We know Jesus heals and that He responds to our faith and answers prayer. When He doesn't answer in the way we want Him to, it challenges our faith and sometimes even shakes it. We have had a rough couple of days, praying, crying, pleading, and even being angry, questioning why our infant son has to go through so much. We have been really believing for a miracle concerning the heart block. Many of you have been right there with us, helping us through these intense days. We could not have come out with the peace we are currently experiencing without you helping to carry us through it. We actually hit a point of exhaustion trying to negotiate with God and finally had to say, okay, we give up, this is your thing not ours and we trust and praise you regardless of the situation.
Earlier today, when we got to Braden's room, the team of doctors was there and were discussing some activity the ventricle was conducting. It was not consistent, but it was there. We were so excited to hear even that. There will just be a ventricular lead placed with today's surgery and it is needed at this point, but later on, if full function returns, it will just be back-up. Every day we wake up and say, Lord this would be a great day for a miracle. So, today's news was so encouraging, especially with the pacemaker surgery being the same day. Braden is just plain a miracle anyway. Today in our consult with the surgeon, Dr. Permut, he was saying that Braden's VSD is the largest he or Dr. Cohen have ever seen, in their combined years of experience. The fact that it was able to be closed at all is amazing. Yesterday Dr. Cohen called it monstrous.
On another note, we want to extend our gratitude to several special groups of people. Some are even individuals we have never met, but who have been such a blessing. First, thank you to the wonderful group of families (Dennys, Guntermans, Wards, Guys, Walkers, Tris, Chapmans, Evans, & Giaudrones) that sent us a gift basket, gift cards, and presents. You have never even met us and yet you were so loving and generous in a really practical way. THANK YOU!
Next, we want to thank another amazing group of people, our "heart" family. We have been so encouraged by the input of other families that have been there and done that with congenital heart defects and surgeries. We have been through an extreme crash course in our education and it has been painful. Your support has helped carry us through the ups and downs of these difficult days. Though we may not have contacted you directly, we have read your input and have benefited from your encouragement. Thank you, thank you, thank you!
Lastly, to those of you who have prayed us through the last week, when we were feeling so low and discouraged, thank you for listening to the Lord and for praying at odd hours of night and day. We really needed that support and it made all the difference for us in facing today and the acceptance of God's will over our's.
We will update you after Braden's surgery is completed. We are praying for no infection to set in from today's incision, for good lung function following another brief time on the ventilator, and great recovery over all. We just really want to go HOME!!!!
We are blessed!
-Darth & Jenni
Thursday, December 25, 2008
Merry Christmas!
Merry Christmas from the Creeks! There is no doubt that this will be a Christmas our family will never forget. But even with the circumstances as they are, we are able to give thanks to God for the gift of His Son, Jesus. He is the reason we have hope and peace.
Braden is doing well. He enjoyed his first Christmas by opening gifts (with a little help from his three sisters), listening to carols, napping and enjoying a feast of fat free nutrition through a feeding tube! Ah, the life of a six week old.
Tomorrow the doctors are planing to put in his pacemaker. Even if some of his natural rhythms were to return, they still want to implant a pacer, just to be on the safe side. Jenni and I are at peace knowing that God is in control. Of course we don't want to have another operation. But, Dr. Cohen said that if down the road, Braden's heart functions improve and the pacer wasn't needed, they could remove it. So Jenni and I are at the point of waiting on God and releasing it all into His hands.
Right now we would love to think that we could be home sometime next week, but one thing we've learned through this whole process is that you can't schedule anything. That's just the way it is in the world of medicine. Jenni and I just want to bring Braden home healthy and whole, no matter how long it takes!
Thanks again for your support and prayers. We will post an update tomorrow night to let everyone know if the operation was needed and how Braden is doing.
Blessings,
Darth & Jenni
Braden is doing well. He enjoyed his first Christmas by opening gifts (with a little help from his three sisters), listening to carols, napping and enjoying a feast of fat free nutrition through a feeding tube! Ah, the life of a six week old.
Tomorrow the doctors are planing to put in his pacemaker. Even if some of his natural rhythms were to return, they still want to implant a pacer, just to be on the safe side. Jenni and I are at peace knowing that God is in control. Of course we don't want to have another operation. But, Dr. Cohen said that if down the road, Braden's heart functions improve and the pacer wasn't needed, they could remove it. So Jenni and I are at the point of waiting on God and releasing it all into His hands.
Right now we would love to think that we could be home sometime next week, but one thing we've learned through this whole process is that you can't schedule anything. That's just the way it is in the world of medicine. Jenni and I just want to bring Braden home healthy and whole, no matter how long it takes!
Thanks again for your support and prayers. We will post an update tomorrow night to let everyone know if the operation was needed and how Braden is doing.
Blessings,
Darth & Jenni
Tuesday, December 23, 2008
Two days til Christmas
Just a quick post:
Braden is resting. All of his chest tubes are now gone. Only a picc line and his pacing wires are left. The doctors have given til Friday for Braden's heart rhythms to return. If they don't come back the surgeons will put in a permanent pacemaker. Braden's heart rhythms did work before the surgery, but with this type of operation and the size of the VSD, heart-block can be a side effect.
All we can do is pray. Thank you for praying for us and with us.
Darth
Braden is resting. All of his chest tubes are now gone. Only a picc line and his pacing wires are left. The doctors have given til Friday for Braden's heart rhythms to return. If they don't come back the surgeons will put in a permanent pacemaker. Braden's heart rhythms did work before the surgery, but with this type of operation and the size of the VSD, heart-block can be a side effect.
All we can do is pray. Thank you for praying for us and with us.
Darth
Saturday, December 20, 2008
Still believing
Greetings from Seattle Children's Hospital, where it's beginning to look a lot like Christmas. The snow is falling and we are enjoying the view from Braden's room. It's fun to think about him all bundled up, out playing in the backyard with his big sisters next year. But for now he's on a pretty strict routine...resting, some awake time, then some sleep, a diaper change here and there, then more sleep, some awake time, and more sleep. He's taking it all in stride. Overall, Braden is pretty comfy and cozy.
Braden is having a good day. Here is the latest:
This gave us an idea; we would like to print these prayers and Scriptures to hang them in Braden's room. If you have a specific prayer or Bible verse that you would like to share, please email or post it and we will add them to the ones we have already had on our hearts to pray over our son. Thank you!
Darth & Jenni
Braden is having a good day. Here is the latest:
- His pacemaker is still needed as of right now, but we are believing for a miracle.
- Tomorrow the doctors are hoping to remove the breathing tube!
- Braden's lymph nodes are still in the process of healing; we pray that they will do so quickly.
- Last night they were able to remove one large and two small tubes from his chest. (There is only one drain tube left, plus the pacemaker wires.)
This gave us an idea; we would like to print these prayers and Scriptures to hang them in Braden's room. If you have a specific prayer or Bible verse that you would like to share, please email or post it and we will add them to the ones we have already had on our hearts to pray over our son. Thank you!
Darth & Jenni
Thursday, December 18, 2008
Six days after surgery
As our family continues on our journey we realize that there will be time of smooth sailing and times of turbulence. Well, today was a bumpy ride. There was some good news to start the day off with, then bumps came one after another. As Jenni and I strive to walk by faith and not by sight, we know that fear will attempt to overcome our faith. So today we battled and can say that God is faithful to complete the work He started in us and in our family.
The good report is that when the doctors turned down the pacemaker, Braden's heart paced on it's own at a better rate than it did on Wednesday. So this is good...but the doctor also reminded us he felt that there was a possibility (his opinion) that a permanent pacemaker may be needed. Thanks a lot Dr. "glass half empty"! Jenni and I are trying to rely on God's prognosis and allow Him to do what He wants, in His timing. (At the time though, this was like a punch in the gut!)
The other bump of the day happened as Braden was receiving milk through a feeding tube. The nurse noticed that there was a cloudy substance coming from one of Braden's chest tubes. After consulting with the doctors they concluded that it was a condition with Braden's lymph nodes. I can't remember the exact medical term, but basically the nodes are very fragile and through the process of surgery they can become damaged easily. As the milk was introduced to Braden's stomach these nodes were unable to process the fat content. So the fat was released to the body and they pooled in an area around the lungs. With Braden's tube in place, the fluid then was able to drain out. This isn't an uncommon side effect with this type of surgery. But it must be dealt with. So, for the time being, no more milk for Braden, he is now receiving another type of nutrition through his feeding tube, something his lymph nodes can handle. These nodes must have time to heal, and if they don't heal on their own, surgery can be needed.
So our request to you, our faithful friends and prayer partners:
The good report is that when the doctors turned down the pacemaker, Braden's heart paced on it's own at a better rate than it did on Wednesday. So this is good...but the doctor also reminded us he felt that there was a possibility (his opinion) that a permanent pacemaker may be needed. Thanks a lot Dr. "glass half empty"! Jenni and I are trying to rely on God's prognosis and allow Him to do what He wants, in His timing. (At the time though, this was like a punch in the gut!)
The other bump of the day happened as Braden was receiving milk through a feeding tube. The nurse noticed that there was a cloudy substance coming from one of Braden's chest tubes. After consulting with the doctors they concluded that it was a condition with Braden's lymph nodes. I can't remember the exact medical term, but basically the nodes are very fragile and through the process of surgery they can become damaged easily. As the milk was introduced to Braden's stomach these nodes were unable to process the fat content. So the fat was released to the body and they pooled in an area around the lungs. With Braden's tube in place, the fluid then was able to drain out. This isn't an uncommon side effect with this type of surgery. But it must be dealt with. So, for the time being, no more milk for Braden, he is now receiving another type of nutrition through his feeding tube, something his lymph nodes can handle. These nodes must have time to heal, and if they don't heal on their own, surgery can be needed.
So our request to you, our faithful friends and prayer partners:
- Please pray that Braden's heart will be strong and pump with the right timing and volume so that a permanent pacemaker won't be needed. (And maybe Dr. "glass half empty" will have a change of perspective.)
- Please pray that Braden's lymph nodes will heal and no surgery needed. And that he will be able to have milk again ASAP.
We love and appreciate you all! Thank you for continuing to stand in faith with us for our son Braden!
Darth & Jenni
Tuesday, December 16, 2008
Tuesday Update
This is day four post-op. Things are progressing well but slowly from our perspective. I think it feels that way because we are so anxious to be done with all this.
Braden ran a temp last night so the doctor had the nurses draw blood to run cultures on. Infection can sometimes be an issue with chest closure (surgery in general!); it is not unusual. His temp was down later in the morning so it (infection) appears to not be the case. The cultures are monitored for 3 days so please pray that nothing "grows".
The bandages were off the chest closure. We were able to get a good look at his scar. Impressive. It will look better with time but is really intimidating now. Braden was awake more today than we have seen since surgery. He is still on lots of pain meds so his awareness of us is hazy. It was still so great to see those beautiful blue eyes!
His breathing and oxygen saturation levels are still being closely monitored. As soon as more progess is made to breathe independently we will see the breathing tube disappear. We are continuing to pray that the lungs will be clear and function efficiently and independently. There was progress in this area today.
Braden has started being given some breastmilk, very small amounts, but it is a step in the right direction. Please continue to pray for the heart to kick in and function properly without the pacemaker. Surgery was just days ago and the heart has been tramatized; we are encouraged that this is likely a temporary need.
As this time draws on we are trying to take care of ourselves, our emotions are all over the place with each report and we are physically exhausted. We have to keep our focus on the Lord and not react to every little thing. The medical personnel report the facts and our job is to take it to God. Darth and I spend a lot of time over Braden's bed just praying. We feel so helpless, yet are grateful for the peace that comes when we release our concerns to Him.
We have met so many families with very sick children. Two kids to pray for are Meka (heart surgery tomorrow: infant baby girl) and Tyler (5 year old with leukemia) and their families.
More updates soon.
-Darth and Jenni
Braden ran a temp last night so the doctor had the nurses draw blood to run cultures on. Infection can sometimes be an issue with chest closure (surgery in general!); it is not unusual. His temp was down later in the morning so it (infection) appears to not be the case. The cultures are monitored for 3 days so please pray that nothing "grows".
The bandages were off the chest closure. We were able to get a good look at his scar. Impressive. It will look better with time but is really intimidating now. Braden was awake more today than we have seen since surgery. He is still on lots of pain meds so his awareness of us is hazy. It was still so great to see those beautiful blue eyes!
His breathing and oxygen saturation levels are still being closely monitored. As soon as more progess is made to breathe independently we will see the breathing tube disappear. We are continuing to pray that the lungs will be clear and function efficiently and independently. There was progress in this area today.
Braden has started being given some breastmilk, very small amounts, but it is a step in the right direction. Please continue to pray for the heart to kick in and function properly without the pacemaker. Surgery was just days ago and the heart has been tramatized; we are encouraged that this is likely a temporary need.
As this time draws on we are trying to take care of ourselves, our emotions are all over the place with each report and we are physically exhausted. We have to keep our focus on the Lord and not react to every little thing. The medical personnel report the facts and our job is to take it to God. Darth and I spend a lot of time over Braden's bed just praying. We feel so helpless, yet are grateful for the peace that comes when we release our concerns to Him.
We have met so many families with very sick children. Two kids to pray for are Meka (heart surgery tomorrow: infant baby girl) and Tyler (5 year old with leukemia) and their families.
More updates soon.
-Darth and Jenni
Monday, December 15, 2008
Monday night update
Thank you for taking the time to visit our blog to check in on Braden. Jenni and I appreciate every one's interest and support. Here is the latest from Seattle Children's Hospital:
The good news is Braden has been fairly stable since his surgery last Friday. We have a wonderful team of Doctors and nurses working around the clock, giving him the best of care (We love Children's!!!). His swelling has come down a bit, and last night they began adding some nutrition to his IV drip. Braden is still on a pacemaker right now, but we are praying that it will be just a temporary thing. Jenni and I noticed that his coloring has started to improve. We were blessed to have him open his eyes a little bit last night, not for his sake (because he won't remember a thing) but for our sake. After everything we've experienced, just to have him open his eyes means the world to us! He has been resting comfortably and we are spending our time holding his hand and giving lots of kisses on his head. We are grateful to God for the progress that is being made.
There are a couple of things that I didn't mention in our last post-surgery update. The first is that when Braden was transitioning from the heart-lung machine during surgery, his heart stopped. Dr. Cohen had to perform manual compressions to get Braden's heart pumping again. When Jenni and I found this out it shook us up a little, but we again realized how much every one's prayers covered our son. God bless you for praying!!! Another point that I didn't mention in our last update is that Braden's chest was left open after surgery. This is a common practice for pediatric heart surgery. Whenever someone is put on the heart-lung machine the body reacts by retaining fluid, and swelling occurs. In our post-op consultation with Dr. Cohen, he informed us that Braden's chest was left open and then, after the swelling subsided, a second surgery would take place to close it. It's almost unbelievable, but amazingly true, Jenni and I could actually see Braden's heart through a thin bandage layer. This wasn't an experience I was looking forward to, but it was pretty amazing to say the least. Well, we are happy to report that the second operation took place today and the surgical team were able to close Braden's chest. It took a bit longer than what we thought it would, but it was so good to see him with a new bandage and to know that he has passed another hurdle. Now we are looking forward to when the ventilator can be removed and his medications scaled back. But for right now we are just waiting and praying, willing to do what it takes to bring our baby boy home, healthy and whole!
One last note, I'm glad to report that the "Creek Clan" is back together. Our three daughters, Kara, Megan and Rachel joined us in Seattle yesterday. They stayed behind in Wenatchee for a week, so that Jenni and I could focus our attention on Braden and prepare for surgery. We missed the girls so much, but we never worried because they were in great hands. Pastor Jerry and Linda Beebe cared for them while we gone (We love the Beebe's!!!). And a shout out to their daughter Jessica, too! Then my wonderful in laws drove to Wenatchee, snow storm and all, and brought the girls back to Seattle for us. Words can't express how much we appreciate everyone who has rallied around our family during this time.
We pray God's blessing to you all,
Darth & Jenni
The good news is Braden has been fairly stable since his surgery last Friday. We have a wonderful team of Doctors and nurses working around the clock, giving him the best of care (We love Children's!!!). His swelling has come down a bit, and last night they began adding some nutrition to his IV drip. Braden is still on a pacemaker right now, but we are praying that it will be just a temporary thing. Jenni and I noticed that his coloring has started to improve. We were blessed to have him open his eyes a little bit last night, not for his sake (because he won't remember a thing) but for our sake. After everything we've experienced, just to have him open his eyes means the world to us! He has been resting comfortably and we are spending our time holding his hand and giving lots of kisses on his head. We are grateful to God for the progress that is being made.
There are a couple of things that I didn't mention in our last post-surgery update. The first is that when Braden was transitioning from the heart-lung machine during surgery, his heart stopped. Dr. Cohen had to perform manual compressions to get Braden's heart pumping again. When Jenni and I found this out it shook us up a little, but we again realized how much every one's prayers covered our son. God bless you for praying!!! Another point that I didn't mention in our last update is that Braden's chest was left open after surgery. This is a common practice for pediatric heart surgery. Whenever someone is put on the heart-lung machine the body reacts by retaining fluid, and swelling occurs. In our post-op consultation with Dr. Cohen, he informed us that Braden's chest was left open and then, after the swelling subsided, a second surgery would take place to close it. It's almost unbelievable, but amazingly true, Jenni and I could actually see Braden's heart through a thin bandage layer. This wasn't an experience I was looking forward to, but it was pretty amazing to say the least. Well, we are happy to report that the second operation took place today and the surgical team were able to close Braden's chest. It took a bit longer than what we thought it would, but it was so good to see him with a new bandage and to know that he has passed another hurdle. Now we are looking forward to when the ventilator can be removed and his medications scaled back. But for right now we are just waiting and praying, willing to do what it takes to bring our baby boy home, healthy and whole!
One last note, I'm glad to report that the "Creek Clan" is back together. Our three daughters, Kara, Megan and Rachel joined us in Seattle yesterday. They stayed behind in Wenatchee for a week, so that Jenni and I could focus our attention on Braden and prepare for surgery. We missed the girls so much, but we never worried because they were in great hands. Pastor Jerry and Linda Beebe cared for them while we gone (We love the Beebe's!!!). And a shout out to their daughter Jessica, too! Then my wonderful in laws drove to Wenatchee, snow storm and all, and brought the girls back to Seattle for us. Words can't express how much we appreciate everyone who has rallied around our family during this time.
We pray God's blessing to you all,
Darth & Jenni
Saturday, December 13, 2008
Pre-surgery photos
We have wanted to add more photos for some time. Here are a few of our favorites...
Friday, December 12, 2008
Post surgery update
This was the longest day of our lives! To say that Jenni and I are exhausted would be an understatement. Thank you for your prayers, they really carried us all day long. We thank the Lord for His grace and mercy!
Here is a short summery of surgery day:
Here is a short summery of surgery day:
- We checked in to Children's at 6:45 am.
- After waiting for 45 minutes we were escorted to a private room for final instructions and preparations for Braden (Jenni & I were able to pray over Braden one last time).
- At 8 AM I placed Braden into the arms of the anesthesiologist, and they were off to the O.R. (this was the hardest thing Jenni and I have ever done).
- Jenni and I found a quiet place to wait and pray.
- At 10:18 AM we received word that the surgery was underway.
- Then later, at 2:30 PM, we were notified that the surgery was finished and Dr. Cohen was on his way to meet with us.
- Braden's operation went very well. The arterial switch and moving of the coronary arteries went smoothly, while the ventricular septal defect (hole in the bottom chambers) was a difficult fix. The opening was so large that it took all the surgeon's skills to close it (Dr. Cohen stated that if the surgery had been performed at birth, there was no possibility he would have been able to close it, which would have constituted another surgery at a later date). So praise God that we were able to wait a few weeks, and only one operation was needed!
- After some time Braden was moved to the Cardiac Intensive Care Unit where Jenni and I were able to see him. We tried to prepare ourselves, but it was very difficult to walk into his room. I've never seen so many wires in all my life!
- But thanks to every one's prayers and support we were able to make it through the day!
Now, as the healing process begins, there are a few specific prayer requests:
- Please pray that the pacemaker that is helping Braden's heart pump will only be needed for a short time. That his heart will become strong and able to pump with no assistance.
- Pray that he will heal quickly and there would be no complications of any kind.
- Please pray that Braden will be on his ventilator for only a short time, being able to breathe on his own as soon as possible.
- Pray that every part of Braden's heart will function as designed by God.
We look forward to giving more updates as the Lord brings healing to Braden's heart and body!
God bless you all!
Darth & Jenni
Thursday, December 11, 2008
Surgery Tomorrow
Well, it looks like tomorrow is really going to be the big day. After so many delays, we are feeling really positive about getting our precious boy's heart healthy so we can get him home! We have enjoyed our unexpected time with Braden. He is a wonderful gift from God. Tomorrow will be hard but we know Jesus is with us and will be with Braden in that operating room. Thank you for standing with us in prayer. We will be sure to let you know how he is doing as soon as we can.
-Darth and Jenni
-Darth and Jenni
Monday, December 8, 2008
Change of Plans
Today, December 8, Darth and I took Braden to Children's for all his pre-op appointments. Everything went well, although it was a long day. We spoke with a lot of people, were given more information than we could digest, and spent way too much time in waiting rooms! Overall everything looks really good for the surgery and we feel very confident in the care Braden will be receiving at Children's.
When we met with our surgeon, he informed us that there was to be an emergency heart transplant this evening, and since it would be a late night for him, surgery would be postponed to Friday, December 12. He told us we would not want him doing surgery on our son with too little sleep. We agreed!
We had mixed feelings with the change in surgery dates, glad to have more time with Braden, sorry to not be getting on with the surgery and recovery, but also realizing that someone has lost a child. There is also a family getting a new chance at their child being healthy by getting a transplant. Please pray for the families involved with that. We of course don't know any names or specific circumstances, but it will be a difficult time for both families. Our hearts and prayers are with them.
We are looking at this time, waiting till surgery, as a blessing. Hopefully we can catch up on sleep and really focus on getting Braden's weight up.
We love and appreciate all our wonderful supportive extended family!
-Darth and Jenni
When we met with our surgeon, he informed us that there was to be an emergency heart transplant this evening, and since it would be a late night for him, surgery would be postponed to Friday, December 12. He told us we would not want him doing surgery on our son with too little sleep. We agreed!
We had mixed feelings with the change in surgery dates, glad to have more time with Braden, sorry to not be getting on with the surgery and recovery, but also realizing that someone has lost a child. There is also a family getting a new chance at their child being healthy by getting a transplant. Please pray for the families involved with that. We of course don't know any names or specific circumstances, but it will be a difficult time for both families. Our hearts and prayers are with them.
We are looking at this time, waiting till surgery, as a blessing. Hopefully we can catch up on sleep and really focus on getting Braden's weight up.
We love and appreciate all our wonderful supportive extended family!
-Darth and Jenni
Saturday, December 6, 2008
Time to pray!
We're days away from surgery and it's time. In the past week Braden stopped putting on weight and was getting tired during feedings, falling asleep and being lethargic. He had to be put on a feeding tube. It actually sounds worse than it is. We were all traumatized slightly by its insertion (Daddy, Mommy & Braden), but now that it is in place, it's really helping Braden keep his food and meds down. In fact it has been so easy feeding him we have considered requesting them for our other picky eaters. It would be so much easier to get veggies into the girls that way. Sounds terrible I know, but at our current point in life, Darth and I are grasping to lighten the moments when we can. The overlying stress of this week, preparing to return to Seattle for surgery . . . , to describe it "intense" is an understatement.
With the feeding tube, Braden has plateaued at the same weight. We were hoping for major growth and weight gain. Still, we are encouraged that he is no longer losing weight. And, he looks so good, a bit on the skinny side compared to our other babies, but definitely bright-eyed, great color, alert. In our educational process with Braden's heart defects, we have learned that the signs we are seeing are really leading to surgery; there is no good reason to wait longer.
Going into this whole thing, we knew there was no way to specifically predict the exact way things would go. It continues to amaze us that we were able to even bring Braden home in the first place. Having him home pre-surgery wasn't even a thought for us so we have been blessed again and again by our time here.
On Tuesday, Braden is scheduled for surgery involving an arterial switch to fix the Transposition of the Great Arteries (TGA, also referred to as TGV, Transposition of the Great Vessels) and to repair the Ventricular Septal Defect (VSD). Now that surgery is so close, we have some really specific things to pray for:
With the feeding tube, Braden has plateaued at the same weight. We were hoping for major growth and weight gain. Still, we are encouraged that he is no longer losing weight. And, he looks so good, a bit on the skinny side compared to our other babies, but definitely bright-eyed, great color, alert. In our educational process with Braden's heart defects, we have learned that the signs we are seeing are really leading to surgery; there is no good reason to wait longer.
Going into this whole thing, we knew there was no way to specifically predict the exact way things would go. It continues to amaze us that we were able to even bring Braden home in the first place. Having him home pre-surgery wasn't even a thought for us so we have been blessed again and again by our time here.
On Tuesday, Braden is scheduled for surgery involving an arterial switch to fix the Transposition of the Great Arteries (TGA, also referred to as TGV, Transposition of the Great Vessels) and to repair the Ventricular Septal Defect (VSD). Now that surgery is so close, we have some really specific things to pray for:
- The tricky part of the surgery (arterial switch component) is working with the coronary arteries. Please pray that the delicate arteries would be easy to work with as they are switched from the pulmonary artery to the aorta. Pray that the coronary arteries will in no way be harmed during the procedure.
- Pray for our surgeon by name, Dr. Cohen, that Jesus will guide his hands and give him wisdom during the surgery. There will be another surgeon working with him, either Dr. McMullen or Dr. Permut. Please pray that they will work well as a team in their care of Braden.
- Since the hole in the lower chambers is large (VSD), please pray that it will be repairable with one surgery.
- Please pray that Braden's body will respond well to the medical procedures, that he will recover quickly.
- Pray for peace over our immediate and extended family, to trust the Lord with every report, that He will make us strong on the days of pre-op appointments, surgery and recovery days immediately following.
- Health! For Darth and I to get the rest we need to stay healthy and for our girls' health, especially during the winter months.
- Please pray that we would have wisdom in parenting our other 3 children during Braden's surgery period, that they would feel secure in our love for them and not be overly fearful for baby brother.
We have been so supported during this time by friends, family, our pediatrician and other medical personnel, and church. Thank you Jesus for the amazing, loving, giving people you have placed in our lives to help us through this difficult time! We may seem strong, but it is the confidence in the Lord and His ultimate control over life that we are relying on each day. He is good and He knows what He is doing and we trust Him. Again, thank you for praying; please don't stop!
-Jenni & Darth
Friday, November 28, 2008
Happy Thanksgiving!
We spent a quiet Thanksgiving at home this year, the first in Darth's and my married life. It was fun to put together the whole meal for once. We even got some leaves raked and bagged and watched Miracle on 34th Street. It was different (the theme of this year!) but nice.
Braden mostly hung out in his baby swing and slept the day away. He wasn't overly impressed with the holiday. It sure was a blessing to have him with us though. As we went through our "thankful" list as a family, everyone listed baby Braden. We have much to thank the Lord for!
We have had numerous check-ups each week, between our pediatrician and the Children's cardiologist that visits Wenatchee. Braden's weight is still not up to his birth weight, so we are giving him extra calories using bottle-fed milk with formula added. Hopefully he will gain significantly in the next week and a half. Our pediatrician wasn't overly concerned by it and says Braden is looking really well. Still, the doctor does want to see more growth. Braden had a stuffy nose the past several days and it made feeding and keeping it down a bit harder. He sounds great today and has done well so we are encouraged.
It has been a joy to have Braden spending some more awake time, just focusing on faces or checking out his surroundings. He likes to focus on his black and white stuffed cow and really likes a wall-hanging by the changing table starring Winnie the Pooh characters. Eeyore's tail is a high-light; He just stares and stares at it. Braden has beautiful deep blue eyes and the cutest dimples! We love to sit and admire him.
The surgery date is quickly approaching. December is around the corner and we dread it in part, but look forward to getting on with it all. We just so badly want Braden to be well and have all this behind us. Before, we were looking forward to the birth on our Seattle trip. This time the surgery is the all-encompassing focus and it is overwhelming. But the amazing thing is this crazy peace that covers us. We really should be freaking out at this point. Part of me wants to, but Jesus in His love and mercy won't let me go there. He has put this confidence so deep in my heart that He is in control. How many people face open-heart surgery with their newborn? So scary, but we know Jesus is near, He has not brought us or Braden this far to drop us now. How do people cope with life without the Lord? I never want to know. It is great to celebrate and give God thanks in the good times, but absolutely necessary to know that He will never leave or forsake you in the hard times.
We have heard from so many of you that are praying. Bless you for your diligence and compassion for our son. God has a plan here and we are trusting Him with the results. He has not given us a spirit of fear, but of power and love and a sound mind.
Happy Thanksgiving,
Jenni, Darth and girls
Braden mostly hung out in his baby swing and slept the day away. He wasn't overly impressed with the holiday. It sure was a blessing to have him with us though. As we went through our "thankful" list as a family, everyone listed baby Braden. We have much to thank the Lord for!
We have had numerous check-ups each week, between our pediatrician and the Children's cardiologist that visits Wenatchee. Braden's weight is still not up to his birth weight, so we are giving him extra calories using bottle-fed milk with formula added. Hopefully he will gain significantly in the next week and a half. Our pediatrician wasn't overly concerned by it and says Braden is looking really well. Still, the doctor does want to see more growth. Braden had a stuffy nose the past several days and it made feeding and keeping it down a bit harder. He sounds great today and has done well so we are encouraged.
It has been a joy to have Braden spending some more awake time, just focusing on faces or checking out his surroundings. He likes to focus on his black and white stuffed cow and really likes a wall-hanging by the changing table starring Winnie the Pooh characters. Eeyore's tail is a high-light; He just stares and stares at it. Braden has beautiful deep blue eyes and the cutest dimples! We love to sit and admire him.
The surgery date is quickly approaching. December is around the corner and we dread it in part, but look forward to getting on with it all. We just so badly want Braden to be well and have all this behind us. Before, we were looking forward to the birth on our Seattle trip. This time the surgery is the all-encompassing focus and it is overwhelming. But the amazing thing is this crazy peace that covers us. We really should be freaking out at this point. Part of me wants to, but Jesus in His love and mercy won't let me go there. He has put this confidence so deep in my heart that He is in control. How many people face open-heart surgery with their newborn? So scary, but we know Jesus is near, He has not brought us or Braden this far to drop us now. How do people cope with life without the Lord? I never want to know. It is great to celebrate and give God thanks in the good times, but absolutely necessary to know that He will never leave or forsake you in the hard times.
We have heard from so many of you that are praying. Bless you for your diligence and compassion for our son. God has a plan here and we are trusting Him with the results. He has not given us a spirit of fear, but of power and love and a sound mind.
Happy Thanksgiving,
Jenni, Darth and girls
Thursday, November 20, 2008
Thank Heaven for Little Boys!
It has been almost a week since Braden came home. What a wonderful week! He has happily settled into life as kid number four, sleeping through all the numerous hugs and kisses from doting sisters.
Braden went to visit our pediatrician on Monday and sees a Children's cardiac team doctor tomorrow for his weekly echo cardiogram. Darth and I feel so good having him home, while still getting such great medical care. As wonderful as Children's Seattle is, it is so good to be home waiting for surgery rather than at the hospital. Braden is healthier for it, getting good sleep and feeding on a regular schedule. He is away from germs and the noise. Of course we have noise galore at our house, but he's used to that, from months of exposure. It just is not so muffled now that he's born. He just sleeps through it anyway.
Baby and I have been basically hibernating at home. That is a drastic change of pace for me since I am usually so involved at the girls' elementary school and with teaching piano lessons. I have to say I am enjoying it! Being forced to just "be" for this period of time is good for reflection and for being able to focus on our wonderful son. He is amazing, such a fighter. Praise the Lord for so many answers to prayer already.
From Braden's Mommy
Braden went to visit our pediatrician on Monday and sees a Children's cardiac team doctor tomorrow for his weekly echo cardiogram. Darth and I feel so good having him home, while still getting such great medical care. As wonderful as Children's Seattle is, it is so good to be home waiting for surgery rather than at the hospital. Braden is healthier for it, getting good sleep and feeding on a regular schedule. He is away from germs and the noise. Of course we have noise galore at our house, but he's used to that, from months of exposure. It just is not so muffled now that he's born. He just sleeps through it anyway.
Baby and I have been basically hibernating at home. That is a drastic change of pace for me since I am usually so involved at the girls' elementary school and with teaching piano lessons. I have to say I am enjoying it! Being forced to just "be" for this period of time is good for reflection and for being able to focus on our wonderful son. He is amazing, such a fighter. Praise the Lord for so many answers to prayer already.
From Braden's Mommy
Friday, November 14, 2008
Home Sweet Home
We are home! It is beyond our comprehension, but yesterday we were discharged. Braden has done so well that the team of doctors decided it was in his best interest to go home and to allow his heart to grow a bit more. Surgery has been rescheduled for December 9. The VSD (ventricular septal defect) is larger than we realized. If his heart is allowed to grow, it will give the doctors more to work with in making that repair; the VSD will remain the same size. This is still a good thing though with the Transposition of the Great Arteries because his blood is getting the oxygen it needs through that large VSD.
We will be meeting weekly with a Children's cardiology team while back home waiting for surgery. Even though it was scary leaving the hospital with a newborn needing heart surgery, we are beyond thrilled to have Braden with us. Can we just say how incredibly awesome it is to have all the wires and monitors off our precious baby boy?! Every time we held him, some beeper would go off because a monitor patch had come off his chest or his heart monitor slipped off wherever it had been placed at the time. His IV is out and the bandaid on his head is the only reminder of where it was.
While still at Children's, we were able to spend a lot of time with Braden once he was moved to the floor, Tuesday the 11th through Thursday the 13th. It was certainly different than NICU (neonatal intensive care unit). He was in a HUGE bed and shared a room with a teenage boy. We had great nurses, but it just felt so strange to have a newborn in that room, looking so small and helpless. It was hard to leave him there. Darth and I took turns sleeping overnight with him, but of course one doesn't really sleep in the hospital. We are pretty much exhausted.
Now that Braden has been discharged, our girls have been smothering him with love and kisses. They beg to hold him all the time; he is in great danger of being spoiled. Oh well. It was fun to bring him in for bedtime prayers with the whole family. We are blessed.
It is hard to think of having to head back to Seattle for surgery, especially so close to Christmas. Darth and I just keep saying, this is God's thing, not ours. He has had his hand on us from the beginning and we will continue to walk in faith and trust and to hold on to what we know is true. And in the meantime we keep praying for that miracle healing, though we admit we have seen huge miracles in the way things have gone even this far. Braden is just doing so well!
Please keep praying!
Darth and Jenni
We will be meeting weekly with a Children's cardiology team while back home waiting for surgery. Even though it was scary leaving the hospital with a newborn needing heart surgery, we are beyond thrilled to have Braden with us. Can we just say how incredibly awesome it is to have all the wires and monitors off our precious baby boy?! Every time we held him, some beeper would go off because a monitor patch had come off his chest or his heart monitor slipped off wherever it had been placed at the time. His IV is out and the bandaid on his head is the only reminder of where it was.
While still at Children's, we were able to spend a lot of time with Braden once he was moved to the floor, Tuesday the 11th through Thursday the 13th. It was certainly different than NICU (neonatal intensive care unit). He was in a HUGE bed and shared a room with a teenage boy. We had great nurses, but it just felt so strange to have a newborn in that room, looking so small and helpless. It was hard to leave him there. Darth and I took turns sleeping overnight with him, but of course one doesn't really sleep in the hospital. We are pretty much exhausted.
Now that Braden has been discharged, our girls have been smothering him with love and kisses. They beg to hold him all the time; he is in great danger of being spoiled. Oh well. It was fun to bring him in for bedtime prayers with the whole family. We are blessed.
It is hard to think of having to head back to Seattle for surgery, especially so close to Christmas. Darth and I just keep saying, this is God's thing, not ours. He has had his hand on us from the beginning and we will continue to walk in faith and trust and to hold on to what we know is true. And in the meantime we keep praying for that miracle healing, though we admit we have seen huge miracles in the way things have gone even this far. Braden is just doing so well!
Please keep praying!
Darth and Jenni
Tuesday, November 11, 2008
Happy Birthday Braden!
The Journey...
On Tuesday, November 4th, our doctors decided to send us to Seattle. They wanted to perform daily NST's (Non Stess Tests) on Braden to make sure his heart was handling the contractions well. So we had a couple of hours to pack things up and head out of town. The University of Washington was expecting us Tuesday night for the first test. Everything was going well, then on Saturday morning, Jenni's water broke. We checked in at labor and delivery and after many hours we welcomed Braden into the world at 6:38 PM. His weight was 7.2 oz. and his length measured 19 1/2 ''. He is absolutely beautiful. Jenni was able to hold him for a little bit before he was sent to NICU. Once there, Braden was prepped for transfer to Seattle Children's Hospital. After we had a chance to say goodbye, I followed Braden down to the ambulance. It left at 8:30 PM and I followed later after the Husky football traffic died down. I was able to spend some time in Braden's room at Children's.
Jenni was amazing, I have such a respect for mothers!
- Darth
Note from Jenni:
What a crazy time! It was not convenient to pack up and leave mid-week like we did. We threw our things together in a matter of hours and headed to the UW on election night of all times. Our girls have been completely off schedule for days, but are showing their skill at being flexible. We do not regret pulling them from school to be with us, except occasionally when they are whining or bickering with each other!
Some really good things to report:
- We were in the Seattle area early! We were supposed to drive over on Saturday for a Sunday inducement, but my water broke on Saturday. Thank you Lord for taking care of those details.
- Braden only had to be on Prostaglandin for a short while. This means his blood is getting the oxygen it needs without Braden having to be on that medicine and experiencing its side-effects.
- Braden has been nursing and taking bottles with pumped milk or formula!
- He will be transferred out of NICU today (11/11) to go to the floor because he is doing so well. Unless there are complications, he will remain there until surgery.
- Our housing issues are settled and the big sisters are getting used to their new home away from home.
- We have had wonderful help from family, with childcare, laundry, grocery shopping. We could not have done this without them.
- We have felt the Lord's peace every step on the way and know people are praying.
We love and appreciate you!
Jenni
Monday, November 3, 2008
November Update
November is finally here and our excitement is growing. In just a matter of days we get to meet Braden. He is busy wiggling and squirming these days, trying his best to keep mommy from sleeping too much. The girls all agreed tonight that mom's tummy is a watermelon. Thanks! They are counting the days till little brother comes.
We have been so blessed in the past few weeks with showers of love from our church family and friends. The Lord has amazed us again and again at providing for seemingly insignificant things that are really so huge in these stressful days of preparation. Housing is coming together for our stay in Seattle. The financial pressures are being eased with amazing programs we never knew existed. In our gratefulness to agencies and individual personnel, we keep coming back to the realization that God is our Source. He can do anything. We know it in our heads and yet when He comes through in these amazing ways, it floors us with humility to think the Maker of the Universe knows and cares about us, His Children.
The teachers at the girls' elementary school have been fabulous, really rallying behind them, making them feel loved and prepared for the long absence. The materials gathered by those teachers will give us the benefit of homeschooling without the hours of prep. The teachers did all the work! God bless them!
The next post will contain news of Braden's arrival. We will keep you up-to-date to the best of our ability and have pictures as soon as possible.
Jenni
We have been so blessed in the past few weeks with showers of love from our church family and friends. The Lord has amazed us again and again at providing for seemingly insignificant things that are really so huge in these stressful days of preparation. Housing is coming together for our stay in Seattle. The financial pressures are being eased with amazing programs we never knew existed. In our gratefulness to agencies and individual personnel, we keep coming back to the realization that God is our Source. He can do anything. We know it in our heads and yet when He comes through in these amazing ways, it floors us with humility to think the Maker of the Universe knows and cares about us, His Children.
The teachers at the girls' elementary school have been fabulous, really rallying behind them, making them feel loved and prepared for the long absence. The materials gathered by those teachers will give us the benefit of homeschooling without the hours of prep. The teachers did all the work! God bless them!
The next post will contain news of Braden's arrival. We will keep you up-to-date to the best of our ability and have pictures as soon as possible.
Jenni
Monday, October 20, 2008
Last Prenatal Appointments in Seattle
On Friday, October 17, Darth and I spent most of the day in doctor appointments and consultations. It was an informative day and our brains were exhausted by the time we were done. It was great information to receive, however, because we are getting so close to Braden's arrival and our excitement is growing.
We started off with our last fetal echo cardiogram. Braden's condition has remained consistent as far as the congenital heart defect goes. The test showed okay heart function and the plan is still to have his operation sometime after the first week. We also found out that Braden will likely go to the UW Newborn Intensive Care Unit (NICU) before transfer to Children's. Still praying we will get to see him a bit before all that occurs.
Next came the ultrasound and it went so well. All the concerns that have come up during the past months were just not an issue. Thank you God! The perinatologist (high-risk obstetrician) has us scheduled for an induction at the University of Washington on Sunday, November 9. We hope to have a baby that day, but with an induction who knows. We get to call in the morning to find out when to come in so it's a waiting game for all. Darth and I were told again to expect a month long hospital stay.
We met a neonatologist on this visit that was able to answer questions regarding the process to stabilize Braden. Even though he may not be there when baby boy is born, this doctor was so reassuring about the care Braden will receive. It also gave us an idea how many people to expect in the delivery room! I was envisioning a good dozen, but it looks like about half that many. Who cares at that point! Just take care of my baby! :) We have no grand expectations for this delivery experience. This whole pregnancy has taken such a different direction that our priorities are very focused and practical.
Our last appointment was with one of the two surgeons that will be performing Braden's heart surgery. He told us to not expect surgery before 7 days old. Darth and I were able to ask questions and clarify information we have learned over the months to get an accurate idea of what surgery and recovery will be like. The surgery is long, with prep, actual operation, and such, approximately 7 hours. The surgeon reassured us that really he doesn't watch the clock, he just focuses on the patient and what needs to be done. We just plan on it being a long day.
This is all still really scary stuff for us. Heart surgery on a newborn is unfathomable for me. Yet this is our reality. Should Jesus not heal him in a miraculous way, we are proceeding with the knowledge that He uses doctors too. And we have some of the best on our team; we are so grateful! Children's Seattle is amazing.
By the way, the posted picture of Braden is a 4-D ultrasound picture taken at one of my Wenatchee ultrasound appointments. We received several pictures of his face, a cute foot shot, and one of his hand, showing long fingers. The miracle of life is wonderful. Those pictures have brought so many smiles to our faces to see our little pumpkin Braden!
Thanks for continuing to stand by us and to pray for our family and little boy.
Jenni
We started off with our last fetal echo cardiogram. Braden's condition has remained consistent as far as the congenital heart defect goes. The test showed okay heart function and the plan is still to have his operation sometime after the first week. We also found out that Braden will likely go to the UW Newborn Intensive Care Unit (NICU) before transfer to Children's. Still praying we will get to see him a bit before all that occurs.
Next came the ultrasound and it went so well. All the concerns that have come up during the past months were just not an issue. Thank you God! The perinatologist (high-risk obstetrician) has us scheduled for an induction at the University of Washington on Sunday, November 9. We hope to have a baby that day, but with an induction who knows. We get to call in the morning to find out when to come in so it's a waiting game for all. Darth and I were told again to expect a month long hospital stay.
We met a neonatologist on this visit that was able to answer questions regarding the process to stabilize Braden. Even though he may not be there when baby boy is born, this doctor was so reassuring about the care Braden will receive. It also gave us an idea how many people to expect in the delivery room! I was envisioning a good dozen, but it looks like about half that many. Who cares at that point! Just take care of my baby! :) We have no grand expectations for this delivery experience. This whole pregnancy has taken such a different direction that our priorities are very focused and practical.
Our last appointment was with one of the two surgeons that will be performing Braden's heart surgery. He told us to not expect surgery before 7 days old. Darth and I were able to ask questions and clarify information we have learned over the months to get an accurate idea of what surgery and recovery will be like. The surgery is long, with prep, actual operation, and such, approximately 7 hours. The surgeon reassured us that really he doesn't watch the clock, he just focuses on the patient and what needs to be done. We just plan on it being a long day.
This is all still really scary stuff for us. Heart surgery on a newborn is unfathomable for me. Yet this is our reality. Should Jesus not heal him in a miraculous way, we are proceeding with the knowledge that He uses doctors too. And we have some of the best on our team; we are so grateful! Children's Seattle is amazing.
By the way, the posted picture of Braden is a 4-D ultrasound picture taken at one of my Wenatchee ultrasound appointments. We received several pictures of his face, a cute foot shot, and one of his hand, showing long fingers. The miracle of life is wonderful. Those pictures have brought so many smiles to our faces to see our little pumpkin Braden!
Thanks for continuing to stand by us and to pray for our family and little boy.
Jenni
Sunday, October 5, 2008
Five weeks and counting
The past several weeks have been filled with much preparation as we get ready to welcome little Braden to the world. Tomorrow (October 6) it will be 5 weeks until the inducement and it seems there is so much to be done between now and then with the daily commitments of work, home and family.
We wanted to share some areas of gratitude! For starters, God has worked some amazing miracles in providing for our family financially during the last several days and we give Him all the praise for taking care of us. This faith walk we're on gets more and more amazing all the time. Our current situation has caused us to reflect on all the times the Lord has come through for us in the area of finances in the past. Those experiences has proved invaluable for trusting Him once again in this new life adventure. Our medical bills were starting to pile up with all the tests and appointments. Even with the great insurance we have, Darth and I were starting to think, "OH MY! We haven't even HAD Braden yet and the bills are stacking up!" Kind of scary territory. But, we know Jesus is our source of hope and His timing is very humbling. Last week we found out we were approved for financial aid with one medical facility and that our account balance showed zero! This past week we were also able to get rid of some credit card debt that was really hanging over our heads. Our stress level has been significantly reduced! Thank you Lord!
Another good report is that we have had tests every week here at home in Wenatchee since our last Seattle appointments and Braden looks great. I have had two non stress tests (NST) and an ultrasound. There has been no noticeable excess of amniotic fluid and Braden has passed both NST's with flying colors. The ultrasound brought up an area of concern that was cleared up by the second NST so really things are going well. We are relieved with every good report and are choosing faith over fear with the others! And, this will come as a shock, but the ultrasound showed Braden already has a good amount of hair. All our babies have had a full head of hair, with each one having more than the last. It will be fun to see what Braden looks like! He is almost 5 pounds according to the ultrasound so his growth is right where it should be.
Lastly, we are getting encouragement almost daily with phone calls, cards, and conversations, people telling Darth and I that they are praying, encouraging us with their own stories of trusting God and His faithfulness. We know our family is walking in peace because of those prayers and words of encouragement. We are worriers by nature and this whole thing is so out of our control. But God, who knows exactly what we need when we need it and who know precisely what tomorrow holds, is our Rock during uncertain times.
The Lord bless you and keep you, make His face shine upon you, and give you peace.
Jenni
We wanted to share some areas of gratitude! For starters, God has worked some amazing miracles in providing for our family financially during the last several days and we give Him all the praise for taking care of us. This faith walk we're on gets more and more amazing all the time. Our current situation has caused us to reflect on all the times the Lord has come through for us in the area of finances in the past. Those experiences has proved invaluable for trusting Him once again in this new life adventure. Our medical bills were starting to pile up with all the tests and appointments. Even with the great insurance we have, Darth and I were starting to think, "OH MY! We haven't even HAD Braden yet and the bills are stacking up!" Kind of scary territory. But, we know Jesus is our source of hope and His timing is very humbling. Last week we found out we were approved for financial aid with one medical facility and that our account balance showed zero! This past week we were also able to get rid of some credit card debt that was really hanging over our heads. Our stress level has been significantly reduced! Thank you Lord!
Another good report is that we have had tests every week here at home in Wenatchee since our last Seattle appointments and Braden looks great. I have had two non stress tests (NST) and an ultrasound. There has been no noticeable excess of amniotic fluid and Braden has passed both NST's with flying colors. The ultrasound brought up an area of concern that was cleared up by the second NST so really things are going well. We are relieved with every good report and are choosing faith over fear with the others! And, this will come as a shock, but the ultrasound showed Braden already has a good amount of hair. All our babies have had a full head of hair, with each one having more than the last. It will be fun to see what Braden looks like! He is almost 5 pounds according to the ultrasound so his growth is right where it should be.
Lastly, we are getting encouragement almost daily with phone calls, cards, and conversations, people telling Darth and I that they are praying, encouraging us with their own stories of trusting God and His faithfulness. We know our family is walking in peace because of those prayers and words of encouragement. We are worriers by nature and this whole thing is so out of our control. But God, who knows exactly what we need when we need it and who know precisely what tomorrow holds, is our Rock during uncertain times.
The Lord bless you and keep you, make His face shine upon you, and give you peace.
Jenni
Sunday, September 14, 2008
September 14th Update
Thank you to all of those who faithfully check this site for updates! We apologize for neglecting to post, the start of school and three kids in soccer has kept us from being overly reflective. However, the time for little Braden to make his grand entrance is quickly approaching. We can't believe we are looking at meeting him in just 2 months time. Staying busy has been beneficial as it keeps us from obsessing about things we just can't control.
Earlier in September, I failed to pass my glucose tolerance test (by a very small margin, I might add). That meant having to take the three hour test and 4 more blood draws. I am not a fan of needles or having blood work done so this was not a happy time for me. Thankfully the results came back within acceptable range and I do not have gestational diabetes. I appreciate all of you that were praying for a good report.
On September 12, Darth and I went to Seattle for all of our UW and Children's appointments compressed into one day. The two facilities have been so gracious to work with us and make this time as convenient as possible.
We started our appointments at the UW Hospital, with an ultrasound. This time the sonographer only looked at certain things to assess growth, which looked good. Darth and I had a tour of Labor and Delivery following the ultrasound. It was helpful to get an idea of where the induction will take place and familiarize ourselves with the facility. We were able to ask questions about where Braden would receive his stabilizing treatments and other questions that have come up since our last visit.
After lunch, we met with the OB that will deliver Braden. She was pleased with his growth and the overall health of my pregnancy. The doctor did express concern, however, about a slight excess of amniotic fluid, which was evident on the ultrasound. This has prompted her to request bi-monthly ultrasounds and non-stress tests, some in Wenatchee and then again in October back at the UW. We are trying not to be concerned by every new finding and are reminding ourselves that this pregnancy is under the microscope more than any of our other three. Still, we would love to come home and not have another new thing to worry about. Please pray for us to walk in faith every day that the Lord knows what He is doing and He has the details under control! We know it in our heads but our emotions keep getting in the way!
Next we moved on to Children's. Can I just say how wonderful it has been to work with people there? Amazing! We have been blessed to work with compassionate doctors and nurses who are showing the love of God whether they know it or not. There was another fetal echo cardiogram and consult with a cardiology specialist. This test showed that the heart has good symmetry and function, despite the defects. Darth and I were able to ask more specific questions about surgery, housing, etc. and we were given straight-forward, helpful answers. It was a good balance to the concerns raised by the ultrasound. We left Children's feeling optimistic and relieved, especially since a watch had been placed on the right ventricle at our August appointment. The cardiologist was not concerned by its size on this visit.
Here are some specific things to pray for:
Earlier in September, I failed to pass my glucose tolerance test (by a very small margin, I might add). That meant having to take the three hour test and 4 more blood draws. I am not a fan of needles or having blood work done so this was not a happy time for me. Thankfully the results came back within acceptable range and I do not have gestational diabetes. I appreciate all of you that were praying for a good report.
On September 12, Darth and I went to Seattle for all of our UW and Children's appointments compressed into one day. The two facilities have been so gracious to work with us and make this time as convenient as possible.
We started our appointments at the UW Hospital, with an ultrasound. This time the sonographer only looked at certain things to assess growth, which looked good. Darth and I had a tour of Labor and Delivery following the ultrasound. It was helpful to get an idea of where the induction will take place and familiarize ourselves with the facility. We were able to ask questions about where Braden would receive his stabilizing treatments and other questions that have come up since our last visit.
After lunch, we met with the OB that will deliver Braden. She was pleased with his growth and the overall health of my pregnancy. The doctor did express concern, however, about a slight excess of amniotic fluid, which was evident on the ultrasound. This has prompted her to request bi-monthly ultrasounds and non-stress tests, some in Wenatchee and then again in October back at the UW. We are trying not to be concerned by every new finding and are reminding ourselves that this pregnancy is under the microscope more than any of our other three. Still, we would love to come home and not have another new thing to worry about. Please pray for us to walk in faith every day that the Lord knows what He is doing and He has the details under control! We know it in our heads but our emotions keep getting in the way!
Next we moved on to Children's. Can I just say how wonderful it has been to work with people there? Amazing! We have been blessed to work with compassionate doctors and nurses who are showing the love of God whether they know it or not. There was another fetal echo cardiogram and consult with a cardiology specialist. This test showed that the heart has good symmetry and function, despite the defects. Darth and I were able to ask more specific questions about surgery, housing, etc. and we were given straight-forward, helpful answers. It was a good balance to the concerns raised by the ultrasound. We left Children's feeling optimistic and relieved, especially since a watch had been placed on the right ventricle at our August appointment. The cardiologist was not concerned by its size on this visit.
Here are some specific things to pray for:
- That the extra amniotic fluid would not be a sign of another health problem or syndrome
- Peace over our home and children during these remaining weeks, as well as into November with Braden's birth, surgery, and recovery
- Health for our family, now and after Braden is born
- Financial wisdom and provision
- That Darth and I would stand on the Word of God and not give in to worry about things that are out of our control
With frequent appointments, we will be able to keep you up to date more often. Thank you for your continued support and prayers.
Jenni
Monday, August 18, 2008
August Update
On August 14, Darth and I were back at the University of Washington for another ultrasound and OB appointment. It was a long day of appointments, but overall the consensus was that Braden is growing and that I am healthy and growing as well! It was good to have that positive news.
It sounds like I will be induced a bit early, just to make sure everything and everyone will be in place to receive our little guy. Though I am not too excited about that, not being a huge fan of pitocin, it does look like the best option and will allow Darth and I to plan out "life" for our girls a bit better.
An interesting event from that day was we ran into a couple we know that is experiencing pregnancy challenges of their own. The OB clinic was running late so we sat and encouraged each other as only someone with experience can. Once in the patient room, Darth and I sat amazed at the way the Lord set up that very special time for us and the other couple. Now as we think of Braden, we are also praying for a miracle for that family and their unborn baby boy. This whole experience has been so humbling as we depend on the strength of Jesus Christ to give us the grace for each day as well as grace to extend to other hurting people. God is good.
On Friday, August 15, we were at Children's Hospital for another fetal echo cardiogram and consult with a pediatric cardiologist. Braden was very cooperative and held still for the pictures of his heart. We were very proud of him; usually he has what our youngest daughter Rachel calls a "party". The previous diagnosis was confirmed, though we were really hoping for our miracle. The cardiologist also expressed an interest in watching the growth of Braden's right ventricle. He called it "borderline normal" and wants to check again in a month. That kind of concerned Darth and I, but once we were back home we contacted our pediatrician and he reassured us that these specialists are looking for abnormal to help them prepare for how to best help Braden. Borderline normal is not cause to panic. Still we would appreciate your prayers on this specific issue, as well as continued prayer for his overall healing.
We are striving, with God's help, to walk by faith and not by sight. On the ultrasound and fetal echo cardiograms, we see the diagnosis with our eyes, the proof is visible. Yet, we know from God's Word and through our own experiences that we serve an amazing, powerful Creator who can do more than we ask or imagine. We are experiencing the peace of God and know people are praying. Thank you for walking this road with us. We are grateful.
Jenni
It sounds like I will be induced a bit early, just to make sure everything and everyone will be in place to receive our little guy. Though I am not too excited about that, not being a huge fan of pitocin, it does look like the best option and will allow Darth and I to plan out "life" for our girls a bit better.
An interesting event from that day was we ran into a couple we know that is experiencing pregnancy challenges of their own. The OB clinic was running late so we sat and encouraged each other as only someone with experience can. Once in the patient room, Darth and I sat amazed at the way the Lord set up that very special time for us and the other couple. Now as we think of Braden, we are also praying for a miracle for that family and their unborn baby boy. This whole experience has been so humbling as we depend on the strength of Jesus Christ to give us the grace for each day as well as grace to extend to other hurting people. God is good.
On Friday, August 15, we were at Children's Hospital for another fetal echo cardiogram and consult with a pediatric cardiologist. Braden was very cooperative and held still for the pictures of his heart. We were very proud of him; usually he has what our youngest daughter Rachel calls a "party". The previous diagnosis was confirmed, though we were really hoping for our miracle. The cardiologist also expressed an interest in watching the growth of Braden's right ventricle. He called it "borderline normal" and wants to check again in a month. That kind of concerned Darth and I, but once we were back home we contacted our pediatrician and he reassured us that these specialists are looking for abnormal to help them prepare for how to best help Braden. Borderline normal is not cause to panic. Still we would appreciate your prayers on this specific issue, as well as continued prayer for his overall healing.
We are striving, with God's help, to walk by faith and not by sight. On the ultrasound and fetal echo cardiograms, we see the diagnosis with our eyes, the proof is visible. Yet, we know from God's Word and through our own experiences that we serve an amazing, powerful Creator who can do more than we ask or imagine. We are experiencing the peace of God and know people are praying. Thank you for walking this road with us. We are grateful.
Jenni
Tuesday, August 5, 2008
New perspective
In my position as a worship pastor I have lead congregations in singing hundreds of choruses and hymns. I love to sing and play these melodies for the Lord. But there is one song in particular that has new meaning to me in light of Braden. The song is titled, "You are the one", by Lincoln Brewster and Paul Baloche. Here are the lyrics:
You're the One who made the heavens
You're the One who shaped the earth
You're the One who formed my heart
Long before my birth
I believe You'll always lead me
All my days have been ordained
All Your thoughts toward me are holy
Full of love and grace
You are the One You are holy
You are the One You are worthy
You are the One You are the One Everlasting
You are the One I will worship
You are the One I will serve all my days
You are the One You are the One Everlasting
You are the One
Jesus You're the One
Jenni and I know that Braden is still being formed, and our prayer is that when born, his heart will be healthy, whole and completely healed. We believe that Braden's days are ordained and that God has a purpose and plan for him. Thank you for your continued prayers!
Last week Jenni met with her doctor here in Wenatchee and everything looks good. Braden is growing and very active. Our girls have enjoyed feeling his kicks and somersaults! Next week we head back to the University of Washington and Children's Hospital for follow up appointments. I will post an update when we get back to Wenatchee.
Blessings,
Darth
You're the One who made the heavens
You're the One who shaped the earth
You're the One who formed my heart
Long before my birth
I believe You'll always lead me
All my days have been ordained
All Your thoughts toward me are holy
Full of love and grace
You are the One You are holy
You are the One You are worthy
You are the One You are the One Everlasting
You are the One I will worship
You are the One I will serve all my days
You are the One You are the One Everlasting
You are the One
Jesus You're the One
Jenni and I know that Braden is still being formed, and our prayer is that when born, his heart will be healthy, whole and completely healed. We believe that Braden's days are ordained and that God has a purpose and plan for him. Thank you for your continued prayers!
Last week Jenni met with her doctor here in Wenatchee and everything looks good. Braden is growing and very active. Our girls have enjoyed feeling his kicks and somersaults! Next week we head back to the University of Washington and Children's Hospital for follow up appointments. I will post an update when we get back to Wenatchee.
Blessings,
Darth
Thursday, July 17, 2008
What's in a name?
Our plan from the beginning of this pregnancy has been to find out the gender of our baby and to keep the name a secret until birth. When we discovered the challenges we were going to have with our son's health, we decided to let his name be known so we and others can pray specifically. Here is some insight into the significance of the names we have chosen:
Braden
Language/Cultural origin: English
Inherent Meaning: From the broad clearing
Spiritual Connotation: Redeemed
Scripture: Romans 5:9, "And since we have been made right in God’s sight by the blood of Christ, he will certainly save us from God’s judgement."
Robert
Language/Cultural origin: Old English
Inherent Meaning: Bright in counsel
Spiritual Connotation: Abiding in God
Scripture: 1 John 4:13, "And He has put His own Holy Spirit into our hearts as a proof to us that we are living with Him and He with us."
(Robert is also Darth's father's first name)
Please feel free to share our son's name with others. It's wonderful to know that people will be praying for Braden by name.
Thank you to those who have left comments, sent cards and taken time to pray for us. We appreciate your love and support. God bless!
Darth & Jenni
Braden
Language/Cultural origin: English
Inherent Meaning: From the broad clearing
Spiritual Connotation: Redeemed
Scripture: Romans 5:9, "And since we have been made right in God’s sight by the blood of Christ, he will certainly save us from God’s judgement."
Robert
Language/Cultural origin: Old English
Inherent Meaning: Bright in counsel
Spiritual Connotation: Abiding in God
Scripture: 1 John 4:13, "And He has put His own Holy Spirit into our hearts as a proof to us that we are living with Him and He with us."
(Robert is also Darth's father's first name)
Please feel free to share our son's name with others. It's wonderful to know that people will be praying for Braden by name.
Thank you to those who have left comments, sent cards and taken time to pray for us. We appreciate your love and support. God bless!
Darth & Jenni
Friday, July 11, 2008
Medical information
While doing some research online I found these sites that give more detail to Braden's heart conditions, Transposition of the Great Arteries (TGA) and Ventricular Septal Defect (VSD). In visiting these resources you will find written descriptions, pictures and diagrams (some even animated) that will help in understanding these defects and the sugerical procedures offered to correct them.
While we thank God for medicine and all those who work in the medical field, we know that God is the ultimate physcian and are trusting Him for a miracle. As God's will is unfolded in our lives we must journey this road one day at a time. Thank you for your continued prayers and for standing in faith with us for our son Braden.
God bless you all!
Darth
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/graphicsummaries/transwf.htm
http://www.childrenshospital.org/az/Site511/mainpageS511P0.html
While we thank God for medicine and all those who work in the medical field, we know that God is the ultimate physcian and are trusting Him for a miracle. As God's will is unfolded in our lives we must journey this road one day at a time. Thank you for your continued prayers and for standing in faith with us for our son Braden.
God bless you all!
Darth
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/graphicsummaries/transwf.htm
http://www.childrenshospital.org/az/Site511/mainpageS511P0.html
Thursday, July 10, 2008
It's a Boy!
On Tuesday, July 1 we learned that we are having a boy! Darth and I are very excited and the girls are too. We have always felt that a family of four kids was the Lord's plan for us. We are thrilled He has blessed us with a son. Braden Robert Creek is expected to arrive near Thanksgiving, a great way to celebrate the holidays! There are many reasons to give thanks.
The ultrasound not only showed our baby's gender, but some other news as well. Although our son looks great overall, the images showed some abnormalities with the baby's heart.
On Tuesday, July 8, we went to Children's Hospital in Seattle to have a fetal echo cardiogram and on Wednesday, July 9, went to the University of Washington for another ultrasound. Both tests confirmed that our son has two congenital heart defects: Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (TGA), both serious conditions, requiring surgery within days after birth.
Darth and I have learned more about the heart in the past week than we ever thought possible. There have been a lot of prayers and tears and we are so grateful that Jesus has promised to never leave us. This is not the pregnancy we anticipated. Life has changed drastically in a week's time.
Here's the good news: we have hope! This is an operable condition. We have great doctors and support in Seattle and here at home in Wenatchee. Our family and friends have already been incredibly encouraging. We have the Lord, who is completely able to heal Braden and to give us the strength and grace to walk the path He has placed before us.
The ultrasound showed a very healthy baby boy with an unhealthy heart. We are still processing this huge life curve and it is still a shock to us. It is difficult for us to discuss and as you can imagine, there are a lot of concerned people with a lot of questions. Please continue to check this site for updates and feel free to leave messages of encouragement. At this point your prayers would be the most helpful.
Here are some specific requests:
If you are interested in learning more about either of these defects, you can check them out at the American Heart Association website, http://www.americanheart.org/presenter.jhtml?identifier=1682
Thank you for your support and prayers. As we gain information, we will add to this site so you can be aware of what is happening. Our next Seattle appointments are in mid-August.
Darth and Jenni
The ultrasound not only showed our baby's gender, but some other news as well. Although our son looks great overall, the images showed some abnormalities with the baby's heart.
On Tuesday, July 8, we went to Children's Hospital in Seattle to have a fetal echo cardiogram and on Wednesday, July 9, went to the University of Washington for another ultrasound. Both tests confirmed that our son has two congenital heart defects: Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (TGA), both serious conditions, requiring surgery within days after birth.
Darth and I have learned more about the heart in the past week than we ever thought possible. There have been a lot of prayers and tears and we are so grateful that Jesus has promised to never leave us. This is not the pregnancy we anticipated. Life has changed drastically in a week's time.
Here's the good news: we have hope! This is an operable condition. We have great doctors and support in Seattle and here at home in Wenatchee. Our family and friends have already been incredibly encouraging. We have the Lord, who is completely able to heal Braden and to give us the strength and grace to walk the path He has placed before us.
The ultrasound showed a very healthy baby boy with an unhealthy heart. We are still processing this huge life curve and it is still a shock to us. It is difficult for us to discuss and as you can imagine, there are a lot of concerned people with a lot of questions. Please continue to check this site for updates and feel free to leave messages of encouragement. At this point your prayers would be the most helpful.
Here are some specific requests:
- Healing! We serve a BIG God! We are still believing Him for this! We will be having follow-up visits in Seattle and would love nothing more than to have the conditions miraculously healed!
- That Braden will be a healthy weight, the bigger the heart, the easier for doctor's to operate
- That the pregnancy will continue to be without further complication, healthy mom and baby
- No other health problems or syndromes (looks unlikely at this point)
- Wisdom with decisions regarding life with children during a possible month hospital stay
If you are interested in learning more about either of these defects, you can check them out at the American Heart Association website, http://www.americanheart.org/presenter.jhtml?identifier=1682
Thank you for your support and prayers. As we gain information, we will add to this site so you can be aware of what is happening. Our next Seattle appointments are in mid-August.
Darth and Jenni
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