Wednesday, December 31, 2008

December 31 Update

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

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

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,


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

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.


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.


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:
  • 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.)
Thank you to everyone who has taken the time to leave comments on the blog or send us emails. Jenni and I have been so encouraged! In fact, some have sent written prayers and Bible verses for Braden.

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:
  • 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

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

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:
  • 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:

  1. 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.
  2. Pray that he will heal quickly and there would be no complications of any kind.
  3. 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.
  4. 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

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

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:

  • 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