10:30pm Update

The day has come to an end for us. Brycen had an excellent day. We can't say enough how blessed we are that that ONE nurse caught the murmur in Springdale. If we didn't know about that we would be at home with a boy who looks perfectly healthy. Brycen's vital signs and blood tests continue to be off the charts. We are blessed to have caught this condition this early.

Brycen had an emotional afternoon. Before we left for dinner, he was starting to realize that he hasn't eaten in over two days and was starting to cry quite a bit. Mommy and daddy can't stand to see him cry right now because we're not allowed to pick him up. So, we left for dinner on a down note emotionally. HOWEVER.....we returned to the hospital at 8:00 to find Brycen eyes wide open!! He was sucking away on a pacifier and even had his feet kicked up on his support roll. We left the hospital at 10:00 because we need to get our rest and Brycen had a great headstart on us. He was zonked out and peaceful as could be.

Once again, thank you all for all your support and for your prayers. Obviously this has been a roller coaster ride of emotions for us, but we promise you we are taking time for eating and sleeping. Keep the prayer chains rolling!!

Here are some pics (I hope).

4:30 Update

Dr. Ross was right when he told us we are in a "holding pattern." Brycen is a little tired this afternoon, but remains in excellent condition. All vitals are where they need to be. We're just waiting on that neat computer design and CT to happen tomorrow.

12:45 UPDATE

We just met with the cardiologist and have some different news. Brycen remains in GREAT condition and is pitching curveballs to the NICU and Cardiology units here. The cardiologist (can't spell her name) has determined that Brycen does not have "Interruption of the aorta." This is determined because his pulse/ox in his lower extremities is at 98-100. Therefore he is getting "good blood" due to blood traveling through the aorta. What seems to be the problem is (in my terms here) Brycen's heart isn't "valentine shaped." Instead, his aorta "jets out" just after it curves. This veered path could be leading to lower amounts of blood flow that is causing his heart to work double time.

So, the fix now is to perform a 4-D CT scan of his heart. This scan will then be redesigned by a cardiologist into the form that Brycen's heart should take. They will then use that diagram to "reshape" his heart. Due to the complexity of the 4-D, and the fact that the #1 diagraming cardiologist doesn't work weekends, the CT scan will take place on Monday. The cardiology staff will then meet Monday and discuss the procedure and then explain it to us. The doctor told us..."We have the time to draw the best diagram and give him the best care and so we want to do just that. We do this because he can stay stable at this level for weeks."

So we're delayed again, but it's a good delay. You can never complain about the best care in the world.

Thank you for all your prayers! We'll try to post pictures tonight.

Good Morning Brycen!

Here is Brycen in the NICU at Children's. Don't let all the tubing scare you, he's doing great and at this point could actually make it without all that stuff. He's just ready for surgery when the Dr calls.

We are headed back to the hospital for the afternoon.

Saturday Morning Update

Christy and I just got back to the hotel from our morning visit. Brycen is a trooper and is doing great. His vital signs remain normal and above, so the condition is still not life threatening. We arrived to visit at 4 am and stayed until 6:30. He slept most of the time we were there but recognized our voices when we arrived. He got really upset about 5:50 and that was hard to watch, because we can't hold him and he just seemed to be uncomfortable. In every ultrasound we had done, his left hand was always around his face or on his cheek. This morning, he kept trying to put his hand on his cheek, but he can't get it there because of the IV and the brace they have supporting it. He was obviously trying to get his hand there and couldn't and became quite upset. After about 5 mins, the nurse tried to reposition him some, but he still kept crying. Then she changed his diaper. Once the new diaper got on, he quit crying and OPENED HIS EYES. We looked at the clock knowing it was about time to go and it was EXACTLY 6:14, the time he was born. He was all eyes and smiles for the last 15 minutes we were there!

We talked to Dr Ross this morning (he hasn't left from yesterday and will be there all day today....these doctors are THE BEST!) and he informed us that there are 2 other children there with the same condition Brycen has. Because Brycen's is not life threatening and least severe of the 3 children, he won't have surgery until tomorrow. As Dr Ross put it, "until then we're in a holding pattern." We hope to be able to talk to the surgeon this afternoon to find out all the details for what will happen during surgery and when it will be.

I have pictures of Brycen, but they are all on my cell phone. I am as cell phone and computer illiterate as a guy can be, so if anyone knows how to get the pictures from phone to computer, please email me and I'll try to get a picture or two posted.

Again, cell phone use is VERY LIMITED between signal strength and restrictions, so please check this blogsite for updates and then inform others of the news.

Thank you for all your prayers and support. Keep them coming and not just for us and Brycen. There are hundreds of children at this place that are in much worse condition than he is. We are so blessed to have our little guy!

We love you all!

The Story

Late Thursday evening, a nurse at Willow Creek Women's Hospital in Springdale informed us that Brycen had a heart murmur. This news came as a shock to us as he had passed all examinations throughout the day with flying colors. On Friday morning, we asked for Dr Livingston to please investigate the murmur. After Brycen's routine evaluation Friday morning, Dr Livingston told us that there was definitely a heart murmur. He described that one of two things was causing the murmur and neither one was severe and are very common in newborns. The first scenario (pardon my lack of medical term knowledge) was that a valve in his heart that normally closes right after birth was still open and allowing bloodflow to the wrong area of the heart. This condition is present in most newborns and the valve usually closes in 7 to 10 days, we would just continue monitoring the situation. The second scenario was the possibility of a "hole" in the heart. If this was the case, it too would be monitored and as the heart muscle grew, the hole would eventually be covered up. So, in order to determine which of the two cases the murmur might be, Dr Livingston wanted to do an echo (ultrasound) of Brycen's heart.

During the ultrasound, Dr Livingston called on a neonatal doctor to help with diagnosis. Dr. Waggle found in the ultrasound that Brycen barely had a pulse in his legs and lower extremities. Because neither doctor is a cardiologist, they could not officially diagnose the condition, but gave us their best "educated guess." What they thought was that the murmur was being caused by the valve not closing up, however, that was Brycen's true blessing because another problem had been discovered. Dr. Waggle believed that the new problem was "coarctation of the aorta." In simple terms: Brycen's aorta was narrowing and not allowing enough blood to pass through, so only his upper body was getting an efficient supply of blood. With this discovery, Dr Waggle recommended that Brycen be flown immediately to Arkansas Children's Hospital in Little Rock. The nursery at Willow Creek was vacated and all of the doctors and nurses gave their full and undivided attention to Brycen to prepare him for his flight on the Angel One Helicopter. As they started his medication, his vital numbers started to increase and Dr Waggled assured us that his "educated guess" was on target. He assured us the condition was not life threatening at the moment and that we needed to get on the road to Little Rock. Christy and I met with the flight team, and basically signed his life to their hands, then we began the drive down as he boarded the Helicopter.

Brycen arrived at Children's about 45 mins later and did excellent on the flight. As we were exiting onto I 430, the staff in NICU at Children's called our cell phone to inform us that Brycen had arrived and had already gone through their set of examinations and he was doing GREAT. When we got to the hospital we were able to see Brycen right away and talk with his doctor in NICU, Dr Ross.

Dr Ross told us that the "guess" of Dr Waggle was very close, but the 4-D ultrasound at Children's allowed their team to see Brycen's heart from more angles, and the problem was that his heart has an "Interrupted Aortic Arch." Here is my best attempt to describe the condition. The PDA valve (causing the murmur) in an infants heart allows blood to flow through the heart while the child is in the womb. This is because the child isn't actually breathing and so the valve allows the blood to continually flow without passing through the lungs. At birth, this valve should close, which creates a new path to the aorta so blood can go through the whole body. With Brycen, not only did the valve not close, but it detached from the aorta. Thus, he barley has any blood running through his "main line" and one side of his heart is still having to help pump blood through his whole body instead of just pumping it a short distance to his lungs. But thank goodness it remains open, because he is getting an adequate amount of bloodflow, he's just having to work overtime to get it there. The only thing that kept him alive was the valve that caused the murmur not closing.

The condition requires an extensive surgery and Brycen will have to remain in the NICU for 2 to 3 weeks before he will fully recover. At this time, the condition is not life threatening.

Children's Hospital is VERY strict on visitation and cell phone use in the building is rarely permitted and when we can use them, the signal is very weak. So, we will try and update this blog as much as we can to keep everyone informed. Please check back often and inform others of the news as well.

Christy and I cannot thank you all enough for your prayers and support. We are so fortunate to have such wonderful family and friends. We love you all!!!!!!!