Brice with Brother Adam

Brice feeding goat on first Vacation

December 5, 2000 was like any other day. We knew we were going into the hospital to do a Level II ultrasound, but never expected that we would get the kind of news we did. Half-way through the ultrasound, Brice's pediatric cardiologist confirmed that it was indeed congenital heart disease. He drew a diagram explaining how his heart looked and what kind of treatments were to be expected. At first, they thought it was hypoplastic left ventricle. After careful review from other cardiologists down at the University of Minnesota, they confirmed that it was hypoplastic right ventricle. We were happy with this news, as we were told the left is the better side to have.

The next couple of months were intense. We waited for the birth of this child and did as much as we could to prepare for his birth. We decided to travel down to the Twin Cities to give birth to this child, to be near the emergency facilities that U of M had to offer, should the need arise. Of course, we never expected that he would need anything extra. We carefully planned out the two weeks around his due date. We have three other children, so it took some effort to coordinate babysitters while we would be out of town. It was the Grace of God that we were able to go down to the U of M and be induced on our target date.

My labor was very intense, as all labors are. When he was finally born, he looked like a normal, healthy baby. He was a whopping 8 lbs, 9 oz. born at 39 weeks. He certainly had a nice size to him. They rushed him down to the NICU where he would be closely monitored for the next several days. This broke my heart, as I was not able to nurse him. The following few days would be very emotional for us as we would learn the new complexity of Brice's condition.

The next morning, they informed us he as asplenic (absence of spleen), and we already knew that he had situs inversus, which is the organs being the mirror-image of the way they should be in the body. Brice was on a vent, as he went into breathing failure due to a drug they gave him. It wasn't until a few days later that he was taken off the vent and able to begin nursing. Five days after he was born, we learned that he had TAPVR and would need surgery very soon. They did the surgery 5 days later and placed a B-T shunt as well. The surgery was a success, but his recovery from this would be slow and agonizing. Finally, after 6 weeks, we were able to bring him home.

A new challenge was his inability to eat orally. He had moderate reflux and thus when he would begin to eat, he would spit up quite a bit. This forced us to learn to place a NG tube as well as the use of different monitors. We used a feeding pump to slowly feed him overnight to encourage weight gain. After one month at home, we decided that it was imperative to have a G-tube placed. During tests, they also discovered that Brice needed a Nissen fundoplication, G-tube placed and correction for malrotated bowels. At the same time, they took his appendix out. There was a slow recovery from surgery, as can be expected from any abdominal surgery.

We had a good 2001 summer. Anticipating his bi-directional Glenn shunt. The surgery went very well and he was discharged in five days. One week later, however, we would be admitting him again for an obvious bowel obstruction. After 5 more days in the hospital, he was discharged, only to be readmitted 5 days later. We decided to transfer him down to the Twin Cities again to do further tests. They did emergency surgery on him and discovered that he had an infectious mass on his pancreas that needed immediate removal. We thought the worst was over, but due to complications, a CT scan revealed that he had an congenitally obstructed ureter and subsequently, a ureterostomy was performed. I really had hoped that was all that would be wrong. To my surprise, he had seizures the next week and it was then discovered that he had a stroke and had bleeds on his head. To add insult to injury, the hospital informed us that they would be doing a child-abuse study on Brice to determine of all of these problems were caused by physical abuse. It was very difficult to endure that, but obviously, nothing was found.

After six weeks in the hospital again, we were able to bring him home. He was almost 9 months old and still now bearing weight on his legs. It was after we got him home and got physical and occupational therapy involved that he finally began to excel in his milestones.

After all of this, Brice had problems with ear infections and needed tubes placed. We had this done at the same time we had his ureter reimplanted into the bladder. We had that done in April, 2002. He spent a week in the hospital that time and at this writing, this has been his last hospitalization.

Brice continues to woo the medical professionals. He was born with extremely complex heart disease. His cardiologist says Brice is the most complicated living child he has ever seen. I really don't think people expected him to live past his first surgery, but he continues to be strong. I'm told he's a very husky heart kid weighing in at a whopping 27 pounds. He is crawling, pulling up on furniture, loves music, and becoming very intricate in his play. He's extremely smart and seems to have no side affects from his stroke. His therapist seems to think he'll be walking soon.

We anticipate his Fontan procedure sometime this winter. We know he needs to be 30 pounds or two years of age for this, so we think sometime late fall he'll be ready. We continue to work him with his speech therapy as he still gets all of his nutrition from his G-tube. This has been a blessing because of the host of medicines he is on. I'm not sure how we would give him his 3 p.m. blood pressure medicine in the middle of a nap!

God has truly blessed us with his success and it is my prayer that He will continue to give us these blessings. He has been such a joy and a treasure and we can't imagine life without him!

August 26, 2003 Update

We've had a wonderful year with Brice since we've last updated this page. Brice continues to make huge steps into his growth and development. He began walking November, 2002 and has never turned back since. He literally couldn't wait to start running.

We got through this winter with little excitement. When Brice hit 30 lbs. in January, our cardiologist was excited to get him into surgery so he could get his Fontan. It was amazing how God worked during this time. Within a week, we had his heart catheterization done and he had amazing low pressures. They were somewhat surprised by this since his pressures were just below the cut-off line for his Glenn. Having such low pressures, we were able to avoid a fenestration, which meant, no future heart surgery in a year.

Within two weeks after his heart cath we were scheduled for his Fontan. Its amazing how stressful it was up to this point. Being it was February, we had a multitude of illnesses going through the house. Everything from the stomach flu to strep throat. How Brice didn't contract one of these viruses was pure God. Everything went off perfectly as we headed down to the University to get this surgery taken care of.

Needless to say I was a total wreck before his surgery. Not sleeping well, coming down with what I called at the time a phantom cold. He did beautifully during this surgery. He came through it with flying colors and oh, what a color difference afterwards. It was so remarkable to see his sats. go from the 80's to the mid 90's. Our baby was pink.

He had a two-week stay down at the University. Not because he had difficulty recovering from his surgery, but because he had unusually high enzyme levels concerning his pancreas. As you have read before, he had pancreas troubles after his Glenn and his surgeon wanted to make sure that we weren't sending him home with a pancreas ready to flare up once we got home. She suspected that putting him on bypass, for whatever reason, stresses his pancreas and so potentially, he has something anatomically wrong with his pancreas as well. Since his return home, nothing has flared up and we seem to be past any potential problems for now.

Since Brice's discharge from the hospital, physical therapy and occupational have discharged him. He continues to get speech therapy for eating, but we're down to once a week with that and we are in the process of a discharge plan with that as well. He does have school coming out three times a month to get him up-to-speed with any skills he may be lacking.

As of this summer, Brice continues to flourish in his eating skills. He gets over 2/3's of his nutrition orally and we actually have to put limitations on his eating. He loves it and loves to try new things. Our current medical issue is flat-footedness. We recently had him fitted for orthotics for his tiny little feet.

As far as changes after the Fontan, oh yes. Brice has more energy, not as diaphoretic. His skin color is wonderful and pink, like it should be. He has amazing will, and its only now starting to show its true colors. The terrible two's have hit and they are here with full force. It has become clear to me how Brice has endured all that he's gone through. God gave him the amazing gift of will.

I feel like we've won the state championship now that we're through the Fontan. There were many races, some we won, some we were able to complete, but we struggled through. I realize there will be other years, other seasons. But we won this state championship and we're just happy with our current outcome.

Brice has been a huge blessing to our family, our friends, our church family and the members of our community who have pulled together during these last couple of years. We are very blessed to have had the outcome we have.

I hope others will be encouraged by Brice's success. He is definitely surprising his physicians. He continues to warm the hearts of those who love him.